Gills RSD

ONE BUMP OR TWO

2012-02-01T23:41:00.004Z

1st

Well here we are at the start of another year. What will this one bring? The last few days have bean quite hard because of all the extra people here. On the other hand it has bean good, having all the family together the first time for nearly a year. I am very tired but the more tired I feel, the less my body wants to sleep. A lot of spasms in my foot.

2nd

Got friends here today. Though not a good day, a lot of spasms thought out my body. Joint pain as well. My left hip is hurting just like before when I lift my leg. The lump on my right hand has not gone yet and I am finding quite hard to do things as I can not grip without it being extremely painful. Even getting dressed or putting on gloves hurts. I opened the door and pressed on the lump and pain shot towards my elbow. Not nice. I need to see the Doctor but he has bean away they are just taking phone calls for appointments so not much good for me. I keep to the same Doctor because of my on going conditions its easier that way.

4th

Pilates-
Quite painful today as everything hurts. I did my best I think I felt better after it?
Tried again to ring Doctors but he is still taking phone ins.

A very windy day. The walk on the common nearly blew me and Summer away. A nice walk though.
The wind did not calm down at all, It blew down the arch we have in the garden for the clematis to wind round, as I found out about 4am (5th) when letting Summer out for a wee before bed. I secured it as best as I could. The wind was blowing and it was cold . I know it needs renewing but have bean waiting for it to die off a bit. The weather has bean mild so it carried on growing.

6th

Physio - First a foot massage. I tried to move my toes they moved a little then went straight into spasm. They seem to get upset when touched. I can sometimes move them but not for long. My knee was next, this has improved. The swelling has gone down, I now have a knee cap. My hand next, still very painful. This week my shoulders were not touched as they were pretty good.

Got the new arch done so everything is good again.

9th

At last the Doctor is taking normal appointments. He looked at my knee and agrees with Vel that's it fluid and said Vel is doing a good job. My hand, he is unsure that its the carpel tunnel but more to do with a lump being under it. I am to go back if it does not improve. Got usual tablets, everything the same.

10th

I am going to see Wietse at his home. I miss him and his laid back approach to everything. After all he was my physio for about six years. I took him cake and a present. He ate the cake and said it was very good. It was homemade Christmas cake with rum. We talked about life his and mine. I saw his two cats, Dandelion and Burdock, very cute cats they are brothers and very different, one loves to go out while the other mostly stays in. The day was very good. He gave me a lift home as well.

Burdock

Dandelion

11th

Pilates - I was doing a leg and foot move when my foot then leg went into a very tight spasm. Not good. This travelled up my leg then straight to my shoulders. I tried to stretch it off but it just got tighter.
I went outside and walked around for a bit. After a while my body released a little. For most of the day it kept trying to spasm again. Not very nice and painful to say the least. I took two 400 mg IBUPROFEN then the same again later that helped. I took one BACLOFEN later just to hold the spasm off. This worked well. I only take these when needed.

12th

Cleaning up to day body very tight. I know if I keep moving my body will relax a bit. By the end of day everything was more relaxed. No more strong spasms.

13th

A very cold start, winters back again. The last few days had bean very mild more like spring or even Summer. On the common it looked like it had bean snowing very pretty.

I still ache from pilates. After a very bad spasms it feels like I have bean run over or involved in an accident.

Physio again today. Vel massaged my foot, knee, shoulders and neck. He said my shoulders and neck were extremely tight. As last week they were good. He has given me some exercises to do. Putting my head on my shoulder both sides (not at the same time) and on my chest. My neck is so tight it will hardly move. When Vel massaged my neck it sent a pain to the sides of my head. Most people when they have physio after a course of a few weeks they will improve. With RSD its an on going task just to keep everything ticking over. Then it does not always work. Hopefully I will soon be able to have ACUPUNCTURE again. I think with massage that for me works the best.

Later on a bad headache and neck trying to spasm up. I had to take two lots of IBUPROFEN to have any affect even then it was only a little. I also used TIGER BALM.

14th

Lindsay is here with the boys today. She has not bean very good so she has not bean here since Christmas week. Her thyroid levels at last have risen. But not without upsetting some thing else. Her enamel on her teeth has thinned out so she has to have them redone. Up to now she has not had any thing done to her teeth and has looked after them well, despite being a smoker. She was quite upset. At least this can be put right.

Did some baking later on as we have my brother and family here for tea and my friend and family here in the early afternoon.

I still have a bad head I think it might be the nerves in my neck again. I am trying to do the exercises Vel gave me but my neck keeps going into spasms. Bed late again but whats the point of going if I am in pain. Lots of spasms in my legs. I think my legs might be getting cold as the nights are colder again.

15th

Everything went well and I think we all enjoyed ourselves. I have still got a bad head.

16th

I am having my hair done today. I think that makes most people feel better. My hair looks very nice, as always when Helen does it. Still pain in head neck very tight. More TIGER BALM. I have now got the proper red one. Before it was only the cheap one. This comes from Thailand the same as the white one does. The red is stronger and a has different more herbal smell.

17th

Head pain a bit better but neck very tight. All my joints hurt even my fingers. I am going to have an easy day and try to rest as much as I can. A lot of the time sitting brings on more pain. A cold day, went on the common as usual and had a RAYNARD'S attack. My finger went white and were very painful. Took ages to get them warm and movable again. I had two pairs of gloves on as well. For the past few days I have not felt right. A far away feeling like when I was on lots of MORPHINE about 100+mg a day. Maybe it the time of year or just everyday life.

18th

Pilates I tried my best but my body at the moment is very tight and stiff. Every time I reached up I felt it going into spasm again. I managed some of the moves though. Later in the day misjudged the bathroom door and hit the side of my head twice. I think I lost my balance and tried to correct it, a graze and lump has appeared.

Running club AGM and running awards tonight. This is always hard for me as most of all I would love to be back at the club like before, running with every one. Even after seven years I still feel like this. It seems to be one step forward and about six back, just when things are going well something goes very wrong like in hospital for three weeks. Am I just kidding my self that things will improve or am I trying too hard?

19th

I feel not so good today, all my joints still hurt. Neck is very stiff I have not really done much of the neck exercises. Val gave me to do as neck is still going into spasm. My face has swollen up a bit but not too bad. Where it is red that does not hurt too much it hurts on my cheek bone and eye. Never mind I have had worse. The RSD does not help making it burn. Physio tomorrow so Vel will sort me out.

2oth

My face and eye have swollen up quite a bit. My cheek feels a little sore.

As you can see I think the bathroom door won this round. I am sure the RSD makes everything worse.

I have had a few comments today like have you bean in a accident. Some one asked if I had bean beaten up. One asked what the other person looked like.

Physio - Vel was very concerned about my face and had a good look at it and pressed it and asked questions. I assured him I was alright. He massaged my foot, it held off from going into a spasm for about 30 seconds, but soon released only to go back into one again. I think the massage is doing good because the spasms are getting shorter and not as intense.

Next my knee, the fluid has returned a bit so a little sore. When Vel massaged my foot it went into spasm again. My neck and shoulders were next. He said very tight and tender. A gentle massage this week. I think after all the pain of the last few days my body has reacted to badly and tighten up. My neck felt better after he has finished and no headache. My hand was left this week because the lump is quite sore. I think this session has helped more than last week.

21st

Heading to Wayne and Will's for the weekend. Summer is stopping with Lindsay at her house. She has not done this before . Lindsay and the boys have stopped at my house. I sure she will be alright as Suey will be there and they are best friends..

Don't leave me Mum.

Summer with Suey and Jay-Jay. She soon settled in.

Bed time - I like it here.

I think this is more my colour, on Lindsay's bed.

Shush...a busy day. Suey is under the quilt and Summer is laying on her.

Lindsay then put Summer in her basket where she stayed all night. She looks so sweet.

My face has swollen up quite a bit and my eye is about shut. Very windy on the common made it worse.

My eyes are very dry I have bean using SNOTEARS that helps but liquid runs down my face and makes it burn.

The journey to Halifax was very windy and blew the car from side to side. We stopped so I could have a walk around but the wind was so strong that it just about blew me away. We arrived at Wayne's house and I was in a bit of pain but not as bad as some other journeys.
After a cup of tea I felt better. We had dinner then disused where to go for a meal to celebrate Wills birthday.
We decided on Italian, the boys and Paul had starters. For main course I had lasagna very good. We all enjoyed the food. For sweet, everyone but Wayne had profiteroles. Home made the waiter said, very nice there were too. After the meal we all went back to Wayne's. Just watched a bit of TV.

Every one went to bed and I watched a film. Going to bed at 4am. I could not settle at all. My temperature changes have bean quite bad since Christmas and very up and down. I finally went to sleep about five am.

22nd

Awake again at seven thirty laid in bed, got back to sleep then up at nine. My face is down a bit now. Had a lazy day, playing a game and just talking. The journey home was good not as much pain as going.

Nice to be home. We picked up Summer, she had a great time with Lindsay and the boys and of course Suey.

We looked after Summer for you Nanny

She loved it here can she come again.

She even went in the car for a ride to Nanny B's house.

23rd

A better nights sleep, a new bed for next time Wayne please I think. I am at Pain Management today I am hoping to get some acupuncture. On arrival I had to fill in a chart with my pain for the last 24 hours. Also filled in other details.

I went into see the Doctor. He put his hands on my shoulder, knees and elbows. I said a lot of the time there were very pain in the joints and muscles. I asked him if he knew about RSD, he said he did. I was not convinced. He did not really ask many questions about my condition at all. He did ask about my head. I told him what happened. He then mentioned that I might need a Doppler test to check blood flow to my neck and brain. He then on to say that I need to go on steroids PREDNISOLONE for my treatment it will help and most of the pain will go. I asked why then have I not bean offered this before ( I was with the Pain Management clinic before). I am not keen on taking these as they can cause a lot more damage to my body. Also why had not bean offered this by my Doctor and Physios if its so good. He said the choice was mine to make. Also he wanted to start me a a LIDOCAINE DRIP to help as well. My mind was going wild with trying to take it all in. I said I will not start anything before I speak to my own Doctor and Physios past and present. I had to go for an ECG to check my heart was OK as the LIDOCAINE can cause damage to it.

I went for my ECG the other end of the hospital, about as far away as it could be. They asked if I would take it back to Pain Management as some times things get lost. I was now very tired. Had a cup of tea then went for the bus. On the bus I looked at the paper he had given me to pass to my Doctor. On it he had written a Prescription for the PREDNISONE 15mg for 7 days. That I knew about also he had put that I had got POLYMYALGIA. I was very confused. I thought he might have made a mistake. As no mention of it in the appointment. I was quite concerned as this is worse than FIBROMYALGIA.
I thought don't panic yet I will speak to Wietse, Vel and my Doctor before starting any new treatment.

After looking through a few sites I realised what the steroids were for, its a standard treatment for POLYMYALGIA . I do not think I have this at all. There is a blood test that can be done to confirm it so I will be asking for that. The LIDOCAINE DRIP is a treament for RSD and pain but acording to RSD sites works best in the early years. I have had RSD coming up to eight years.

25th

Pilates day did quite well could not do the arm up moves very well but managed the rest. Had a good talk with Wietse today and feel more assured. I will see Vel on Friday and talk to my Doctor on Tuesday (phone in). Then he will see me to sort things out I hope.

My face has now begun to heal but still a little sore on the cheek.

27th

Physio - Had a good talk with Vel. He said I need to insist on a blood test to prove either way if I have POLYMYALGIA. He also said with it being similar to FIBROMYALGIA its hard to diagnose but the blood test will confirm either way. My other conditions don't help either. I feel a lot better now and starting to get things sorted in my mind. Vel is against any tablets that are going to make me worse over all. I will have to wait for the blood test.

Pain levels are a little high, I sort of hurt all over but my joints are not as stiff. Vel went on to massage my shoulders and neck, using a new oil that warms up, a very nice feeling. My skin felt pleasantly warm for a while very nice. He also used white Tiger Balm. Thats all that got treatment today. The rest of me was not too bad.

29th

Quite a lot of Pain today joints stiff and sensitive when touched. Russ is here with his family so that helps me to focus on something else. They seemed to have a good time.

Had a quiet evening. A lot more pain. Had a bath this helps but I can't stay in long as my RSD
foot swells up. I took some IBRUES. That helped a little. The worse time is when I am trying to sit my body just does not want to. It jumps and twitches and makes more pain so I can not sit for long. Up and down all night. Most nights are the same. I have forgotten whats it like to have a normal night time: to go to bed the same day I get up and sitting to watch a hour program without having to get up and walk around. But it could be worse.

31st

Spoke to Dr Metta at last. Told him all about what the Pain Clinic had said. I am having a blood test to see what it is today. The results will be back on Thursaday, so not long to wait. He said I would be very unlucky if I have got it with everything else.

I said I am unsure of having any of the treatments they have offered because of the side effects and what it will to the RSD. I am back at Pain Clinic on Tuesday so I will be able to discuss it further. I am seeing a Physio this time so I might get what I really need which is ACUPUNCTURE.

Well quite a mixed month. It seems as I get older a more problems I get, it really worries me.

All the best to everyone.
Love Gill.

BUMPS, PLAYS AND CHRISTMAS.

2012-01-05T01:16:00.009Z

December 1st

I am cleaning up downstairs today. I am in pain but as long as I keep moving I can cope with the pain. I am very tired. My left hand has come up in a bump like it did last April. My wrist is swollen also. I am having trouble gripping things and it's painful when I open doors.

Wietse, my old Physio, phoned today. He said he is well. I brought him up to date with my treatment and what I've bean up to. I miss him a lot.

2nd

Physio
Vel massaged my shoulders and neck. He went on to massage my foot which was quite painful and kept going into spasms. The foot did not want to be disturbed, so he stopped.

I have bean given a lot of exercises to do for my neck and shoulders. Walking my hands up a wall and down slowly, moving neck from side to side and pushing my head back and side ways on my hand to cause tension. Also a few for my foot trying to move my toes. Flexing my leg and foot and pulling it back to stop it going into spasms. Plus others. Bed about 5am a lot of pain could not get rid of it.

3rd

A short night up at 8.30 I feel alright though. Lindsay is here today with the boys. She is having a lot of problems with her thyroid even though she is on medication her levels have not risen to anything near normal. The medication makes her very sleepy and dopey. We're told the side effect hopefully will pass with time.

4th

Today Paul and I are out to dinner with his IA group at a small pub in Nettleham, The Black Horse. They still do traditional dinners. It was very nice.

5th

Not a good day lots of spasms and PAIN. Too much, go away and bother some one else for a change.
Very cold today, had a little bit of snow first thing this morning. There is snow settled up north (we are east midlands) so we might get some here.

6th

Today I am going with my neighbour and her carer to her Christmas party at the Hospital. She has emphysema and has a lot of trouble breathing. The group she belongs to is called Breathe Easy. There was a buffet with lots of good thing to eat. Also a raffle, I won two prizes, a necklace and a watch. I also got a present from Mother Santa (a woman dressed as Santa), a photo Album. Very nice day but painful and tiring. My knee is very sore I am going to ask Vel what it might be. Since I have stopped BACLOFEN on a regular basic my IBS has bean a lot better. I only take it when the spasms get too bad. So that is good, less things to cause pain.

7th

Pilates - not bad managed most of the moves. At the moment my shoulders hurt when I raise my arms so not quite able to do every move. Jo understands, and just lets me do what I can manage. Had a friend round in the afternoon for a cup of tea, John, he used to belong the Pilates group. It was so nice to see him, caught up with all his news and him with mine..
Today would have bean my Dads Birthday I miss him very Much.

8th

Tommy-Lees play - Sparkle.
I went with Lindsay to watch Tommy in his school play he was a Shepard and did very well he had to say a few words and was not shy at all. A very big play with over 100 hundred children taking part, aged from four to five. They did all the lighting and music themselves. A very good play.
Here are a few photos, they have been taken from a video so aren't the best quality.

Tommy Lee when he saw me

Hi Nanny

It's me!

Performing.

Saying his lines.

9th

Had a bad night, I forgot to take my tablets. I thought I had but took dinner time ones at night instead. So no morphine. I had a lot of pain and a weird feeling. My body was asking for its Morphine fix and when it did not get it played up. Morphine withdrawal. You would think because I take so little now ( 10mg a day plus OROMORPTH when needed) it would think it would not make much difference but it does. As soon as I realised I took them. A few hours later I was back to normal again, well most of me. A lot of my friends would disagree though.

Physio - When I walk into the treatment room it still feels so strange with out Wietse. He was a shoulder to cry on, cheered me up a lot of times making me see the better side of things even if there was not really one to see. He answered a lot if not all of my questions so I miss him. Vel is good and understands a lot what is going on with me though. I will with time I hope be able to talk to him the same.

Physio went well but painful. While he was massaging my neck, I felt very light headed and sick, pins and needles in my arms. So he stopped. He knew there was some thing wrong as he could feel my neck get very hot and my head went down. After a while he was able to start again. He explained that he was pressing on a nerve that goes down my arms and legs. Massage much the same. He looked at my knee and said there is a lot of fluid there that's why it is swollen and sore.

I showed him my hand and was surprised when he said, he thinks it from my CARPEL TUNNEL the nerve going up from my wrist has bean damaged and is exposed so that's why there is a lump and pain. He massaged my hand and showed me an exercise for my knee, rolling up a towel and putting it behind my knee and pressing down. He said this will help to release the fluid. I hope so as I want to do the Santa Run on Sunday. Other exercises to do the same as be for. Long session again. A lot of pain on the bus but my neck certainly felt looser

10th

Lindsay and the boys here again it does not seem like a week since they were here last. this week has bean very busy. Lindsay is still not responding to her medication her thyroid levels have gone down . She assures me that she is taking them. Another change of tablets for her.

The boys were good and played well. I did not feel too good today very tired a lot of pain which is to be expected after physio. Paul said I even had an hours sleep later.

11th

Did the Santa Run today, more on that here: http://www.gillsrsd.com/2011/12/santa-run.html

12th

A fair night awake a few times with spasms in my feet. I expected some pain and spasms because of the lack of running. I do walk every day so I think that helps. Always in the back of my mind is some thing I read about RSD. USE IT OR LOOSE IT. I really think it works I have tried very hard to keep going and be as mobile as I can be. I know this helps as the RSD seems to back down, It knows it can't win them all. I know of a few RSD suffers that have given up because of the pain and other nasty things that make up RSD and are in wheelchairs now, most probably for good. I know it's hard but you have to fight it. The alternative is bleak!!

13th

While walking Summer I slipped on the common and wrenched my shoulder. The pain shot down my arm and leg. As the day wore on the pain got less if I kept moving.

Jay-Jay school play - Scrooge: A ghost of a chance. A modern twist on the classic Scrooge. Jay-Jay was a Fezziwig dancer. He play a guitar and danced. He was good, not as big a part as last year when he was Elvis but very well acted. Well done Jay-Jay.

Jay-Jay Fizziwig with guitar on right.

I hope my shades don't fall off.

Jay-Jay performing.

Take a bow.

14th

Pilates I did as well as I could. The moves above the head I could not reach very high. I felt quite stiff from yesterdays slip. I did the best I could.

Russ's Mum came to see me today .I have not seen her I think since last year. She also runs so we exchanged running stories. A very nice afternoon. Later in the day I pulled my left hand the one that has CARPEL TUNNEL. Now swollen a lot more. Pins and needles and numbness. I am having a job to grip and hold things.

16th

Physio- I am getting on with Vel alright. He hurts a lot more than Wietse but he is using a different approach as Wietse did acupuncture and massage. He does massage only and exercises. My neck has remained unlocked from week to week. The fluid on my knee has gone down also. He massaged my foot but I had to tell him to stop as the pain and sensitivity was too much. I am keeping up with the exercises he gave me. Some of the ones I do in Pilates most weeks. I know they are helping.

Met Paul in town and did some shopping. Got home about 5pm very tired, and in quite a lot of pain. Sat down for a while. I did not take any extra tablets but I think I should have done as the pain was bad. I am trying to get by on as little tablets as I can. Slowly my body is helping to regulate its self. The less tablets I give my self the more I hope my body will do. By late evening my pain was back to my normal levels.

17th

Average night sleep. I have got Jay-Jay and Tommy-Lee for most of the day as Lindsay is going shopping, its easier without them, and cheaper. They played and did what little boys do, made a lot of noise, but they were very good I think they were threatened before they came. My friend Tracy came to see me which was a nice surprise. She had some dinner with us as well. Lindsay picked up the boys. I sat down for a rest. My whole body aches, more so when sat.

18th

On the common to watch the clubs cross country annual race. This is run just about every year.
Mixed feeling as I used to do it and do it well. My friend Emma got First Lady, something I have won three times. I thought I was coping well with my emotions, until I was shown the shield that you won, with my name engraved on it from the past years.
I won it three times. The tears flowed, thinking that's what I would love to do again. I managed to hide them I think, from most people by looking across the common. I know I am doing a little bit but, I miss cross country the most . You never know one day ???? Talked to a few of my fellow runners. A very mixed day for me.

19th

Tonight is a meal with Paul's family, his brother and sister his Mum and Dad. The meal was good but I had a lot of pain and spasms which always spoils it.

20th

Shopping in town. Got too much and suffered carrying the bags back home. I think I could do with a carer to help me. May be I would buy even more things then knowing that some one else would carry them for me so may be not such a good idea. I am having quite a lot of extra pain these last few days. I have bean busier than normal though.

Lost Summers lead on the common. Even though I looked I cold not find it. I think some one must have picked it up. I had to carry her back home as I could not trust her to walk along side me. The way back is next to a very busy road. Even though she is little by the time I got home my arm was aching. She lays very relaxed and often goes to sleep.

21st

Pilates- The last one this year. Not so good this week a lot of stiffness everywhere. I know most weeks it helps loosen my tight muscles and relaxes them but not always. Looked again for lead but could not find it. I will buy a new one tomorrow.

22nd

Delivered the last of our Christmas cards then carried on into town. I got Summer a nice pink lead which she like as she played with it for ages. Took her for a walk later it seemed to be alright. I have small hands so I like a soft grip. As we were going on the common a man said he had dropped his lead he pointed where he went. I said I had lost mine also two days ago. I told him I would look for it. I met a lady who had seen it she showed me where it was. She did not move it in case the owner came back. I took it to him he was pleased. I thought it was funny how I found his but was not able to find mine. I suppose that's life.

23rd

Physio-Vel did massage on my foot and knee he said knee had improved slightly. When he massaged my shoulders and neck he said they were very tight, worse than last week. I told him they felt it. I mentioned my hip hurting as well. He thinks its to do with all the extra walking I have bean doing as I put more weight on my left side my good side or should I say better side.

He then went on to look at my hand. That is a lot worse than last week I can hardly hold anything and the pain is really bad. He did a little massage but decided to leave it alone for this week. I am to rest it as much as I can. He had asked me to see Dr Metta but he was away so hoping to see him next week as he wants another opinion on my hand.We both wished each other Merry Christmas and I went for the bus.

Summer liked the lights so much she did not want them to go on the tree.

24th

My friend Tracy came round to see me, then just a bit later my brother and his eldest son (my nephew) came also exchanging presents. Very nice to see them all.

Paul has gone to Halifax then Manchester to pick up Wayne,Will and then Andrew from the airport. They are all here for the Christmas Holidays. This is the first time Andrew has bean home since he went to Holland last year January 17th. I am really looking forwards to seeing them all.

Lindsay came round later and left Jay-Jay and Tommy-Lee with me while she went shopping. I turned round and there was Suey the dog as well, never mind she kept Summer happy. They were very good boys and helped me a lot as my hand is still bad. About eight the rest of the family arrived from Manchester. Summer went mad giving Andrew high fives (this is some thing Andrew learnt Summer be for he went to Amsterdam when she was only six months old). Summer then said hello to everyone else.

Summer getting a long awaited cuddle off Andrew.

I think she was wondering why every one was here. I gave every one a cuddle and hug its so nice to have them all here again. Lindsay is here tomorrow as well. Full house.

Paul, Andrew and me.

All the boys - Andrew, Wayne and Will.


Summer loving the attention, Andrew and Me.

Rolled the pastry for mince pies with one hand they turned out alright though. Cheated a bit, as I bought the pastry as the lot I made last week was very hard to do and was not my best.

25th Christmas Day

Are you sure I look alright?

Wayne.

Andrew.

Merry Christmas!

Very excited Jay-Jay.

Thoughtful Tommy-Lee.

Wayne!?

A lot of present opening and Summer getting a lot of attention as well. Andrew brought me Tulips from Amsterdam bulbs and a doll plus a dutch tile and Christmas tree hanger. Wayne a mobile phone. Will got mebath things and a phone case. I got a dressing gown, clothes, money plus, from Paul and a dog that looked just like Summer from Lindsay, plus many more things. Went for a walk with Wayne,Will and Andrew on the common, very nice not too cold. Summer enjoyed it, having more than me there as well.
Then back to do dinner I had a lot of help this year as my hand is still bad. Hip painful as well just like before when I lift my leg a lot of pain. Apart from that not too bad. Dinner was perfect every thing cooked well. After dinner Lindsay and the boys came round for there present more opening and two very excited boys. A very noisey day and long day but nice.

Lindsay, Andrew and Wayne.

Andrew and his friend James.

27th

Full house again as the full family here in the morning. Went into town with Andrew later. Walked there got shoes, boots and jeans for him. The idea was to bus back but it was Sunday service as to day is classed as a bank holiday, I had forgotten. We were the only ones in the bus station plus a few pigeons, as the last bus had gone. Pressed down on my hand and made it hurt a lot. Still very painful. We walked home it was not too bad as Andrew carried everything. Very tired later on. Andrew is out tonight so I can have a quiet night on my own.

29th

Today Andrew and Wayne go back home Will went yesterday as he was at work today. The time spent with them has bean good good but not long enough. Took Summer on the Common and took pictures. Said an tearful good bye and they were on there way. I will see Wayne soon but Andrew I don't know when as its expensive to go to Amsterdam.

My hip is a little bit better not as much pain. Hand also improved. I am getting pain down my arm as well shooting down to my hand. I will ask Vel if it related to the lump on my hand. Andrew has arrived back in Amsterdam and everything is fine he is tired but happy. Paul arrived back, everyone back at there own home now. It will seem very quiet now every one has gone. Just me and Pup most of the time.

30th

Physio-

Vel massaged my foot he said it felt and looked better than last week. Next, knee which was also much improved the swelling has gone down a bit . My hand also is a little better. I asked him about my arm and he said the Median Nerve runs along the points I showed him. He said it all points to CARPAL TUNNEL playing up. Neck quite swollen and sore. He said he could feel the ARTHRITIS he said its in the fifth and sixth vertebra. Everything apart from my neck hurt less than last week. I am to carry on with the exercises and try to put more weight on my right side and put the heel lift back in my right shoe again. I took it out before because it caused me a lot more pain or I thought it was that. With RSD I am never too sure.

31th

Well the last day of the year what will the next one bring no body know. Hopefully better than the this one but I say that every year and so far it has not happened. There is always a first time maybe it's this year I hope so I think all my family could do with a better year.
I hope yours will be good as well.

Happy New Year from me!

Here's wishing you all
A VERY HAPPY NEW YEAR
Love Gill.

SANTA RUN

2011-12-11T16:39:00.025Z

Today is the yearly Santa Run/Walk. A run that takes place in the uphill part of Lincoln. The most historic part, in aid of charity. British Heart, Samaritans, the Siemens Club and other local ones this year. I am doing the run 3.5km about 2 miles. I have only run once since July. I hope things will go well. At the moment I have a sore knee. Vel my Physio said there is fluid in it. I am OK on the flat but in a lot of pain going uphill and sometimes down. The race is in a very undulating part of Lincoln. I will do my best. Some of you might think, FOOL for even doing it or even thinking about it. I say I still want a life apart from RSD and the other things that take over my body. The high I get from this lasts for just more than the race its self. Paul (Husband) is doing the same race but walking.

Me before the start.

Me again.

This little dog was doing it as well.

This little one could not wear his suit from last year as he had put on a little bit of weight so is a reindeer instead. I don't think he was very keen to walk as he was quite content just to be held.

Paul before the start.

Little Santa's

Wheelchairs Santa's.

Running shoes?

Santa's everywhere.

The finish just in case I don't make it.

At 11.30 prompt we were off . The race more or less started on an up slope so my knee started niggling straight away. I did my usual thing and ignored it. Downhill was next, not much better. I was trying to get in a sort of stride so I was able to keep going comfortably.
I found I had to walk a little this year, as my knee felt like it was going to break but I ran most of it. My shoulders were quite painful as well but not enough to stop me. Two laps, the second was easier than the first. I kept going and finished! In pain but real pleased! Not as fast as last year so slightly disappointed. 25min. Last year 23.48. I was fitter then I think. I was still on a high though I DID IT....

Me with the prize/medal.

I did it.

Paul after he did well 33.48 mins. He was pleased.

This man ran as a turkey so I said I would put him on my blog.

The real Santa?

A good day. We had dinner out we deserved it. As I said I was a little disappointed but Paul pointed out I was in Hospital just over eight weeks ago, unable to walk and was paralysed for 24 hours due to medication change. So not too bad what do you think?

I hope you like this extra blog of the Santa Run/Walk.

Love Gill.

CHANGES

2011-11-23T19:20:00.037Z

1st November

A bit of a rough night. I could not get in a pain free position. Hardly any sleep.
I had a phone call from Carhome Court the place I go to for Physio. I have lost my physio of six years though change of his circumstances. I feel lost and uncertain how things will go without him. Wietse has treated me for a long time and got to know me very well. Just walking in the room he could tell how much pain I was in and where. He has become a friend as much as a physio. I will miss him greatly

I have bean appointed a new Physio who's name is Vel Ramasamy. I met him before when Wietse was treating me. He did some of his training in Holland so is on the same wave length as Wietse was . My first appointment is on the 11th of this month.

3rd

The pain I am getting now seems out to get me. Just about every where is painful. I think a lot of this is FIBROMYALGIA pain my joints are so tender just a touch, sends pain shooting around my poor body. I took Summer for a walk my shoulders were going into spasms and getting very tight. At one point I did not think I would be able to get back home but I did. Rest does not seem to help.

6th

Less pain able to cope more. A lot better day. I am getting a lot more temperature changes like I did be for I thought they had taken a back seat, but seam to have jumped back in the driving seat again. Just the same as before sweating one minute, very cold and shaking the next.

8th

Wietse came to see me today, just a friendly visit to see how I was doing. I told him I am seeing Vel next week so will see what he has got in mind for me. I will be asking Vel lot of question regarding my treatment. Wietse does not think he does ACUPUNCTURE.

9th

Went to get the bus for pilates but the road was closed due to works further down so it went a different route so I did not get there. There was a note on the bus shelter inside but I did not see it until it was too late. Last week Jo was ill so I couldn't go last week either.

This pain is really getting to me, grinding me down. Missing pilates did not help either. Some very down days, I think about the future and weep. My life now is surrounded by pain even on a very good day there will still be pain. On a really bad day its almost too much. I don't have that many down days like this but they do creep in at times. Most of the time, I cope very well. Yet I do yearn for my pre-RSD life that I will never have again. I will fight this RSD as much as I can. The amount that my little body deals with is amazing its not surprising it breaks down occasionally.

11th

Physio day-
Changes. Very strange going into the treatment room it looks so bare all Wietses things have gone. I felt very sad.

Vel - My New Physio.

Vel took my history he was smiling a lot at the beginning but by the end he looked a little concerned. I asked him if he wished he had not taken me on .He said no and he will do his best for me. He does not do ACUPUNCTURE like Wietse did. He will treat me with massage and resistance exercises and strengthening ones.

I asked him a lot of questions about how long can he treat me and what he knows about RSD. He said he will trial me till the end of the year to see if the treatment helps. He knows very little about RSD but will look it up for next time as he is very interested. He specialises in FIBROMYALGIA though, so that's very good for me. He is very much like Wietse; very quietly spoken and a good sense of hummer. I hope things work out and he can help me.

12th

Lindsay and the boys are here so no peace today. Lindsay is on a trial of new tablets for her thyroid complaint and not coping very well she does not think they suit her. She looks very pale and is in a lot of pain. The boys were quite good today, they played Lego and were running around outside. It was very noisy.

Summer was very ill later in the day with projectile diarrhoea and later on she was sick. Poor little Summer. She is such a little pig and picks anything up, even on the common she'll eat the horse and rabbit poo if not stopped. I am told most dogs do. She also loves rolling in it. One very smelly mucky dog.

14th

Another very painful day with a lot of pain in my knees. Sometimes it just starts in a place like my shoulders and works all the way down. Very hard to relax or even sit still as the pain is worse when resting. Violent RSD pain in my right foot. Spasms just about everywhere. I find a hot bath still helps. As long as I don't stop in more than a few minutes as my RSD foot does not like it and it makes the spasms worse. I don't think the RSD can cope with the change in body temperature.

16th

Pilates - I actually got there this time.
Found it very hard as a lot of pain still. I hope it will help to loosen me up a bit. After a good rest and dinner. I decided to go for a run I have not bean since July 5th when I scraped my leg. The spell in hospital left me too weak to go so I am giving it a go. You all might think that's madness because of the pain but running helps my mind, if I feel good I can cope better with the pain. Left off my active ankle(support for my right foot) as it presses on the painful bit. This is sort of a risk, because if I go over on my ankle the damage I cause will make thing very much worse.

The run was painful but brilliant I enjoyed it very much. Only about two miles in twenty eight minutes. So not far, a bit less than I normally do. I would love to do the local Santa Run next month. A run where every body wears a Santa suit of some sort. A very good run just about two miles. I have done it twice before, once last year running and once on crutches. A very enjoyable day.

18th

Physio day - Val began by massing my RSD foot it behaved quite well allowing him to touch it. I then had to try to move my toes. They jumped a bit and trembled but did not really move much. I then had to flex my foot and ankle, no problems but then my foot went into a spasm.
Next my shoulders and back got the treatment, a massage and he used a taping motion with his hands to try to release the tightness there. Very painful he told me to tell him if the pain was too much as he has still to learn my pain levels. I like Vel and am hopeful he can help me.

He told me I had a good approach to my condition and was amazed how I cope. He went on to tell me about a lady who was fine leading a very active life in April till she found out she had FIBROMYALGIA. She just gave up. She can no longer stand without help. It just shows what power the mind has.

I told him I went for a run. I can run better than I can walk I told him. He was very surprised I could. I said with a lot of things if you think you can do them you can or a least give it a good try. I said the run makes me feel more like the way I used to me. He said well done. I told him sometimes it helps loosen the muscles. He has given me a few exercises to do. Stretching, flexing and rotating my foot. Pressing my head on the front and sides (one at a time) and pushing my head into my hand to strengthen my neck. Also pulling my shoulders back again to try and strengthen them. A lot of these exercises I do at pilates aswell. I think the session went well. I am back next week for another session with him.

20th

A bad day with PAIN lots of it starting from my neck and going all the way down to my leg on the left side. The right side as not to be left out is also very painful but with spasm's. Not a good day things can only get better.

I took Summer for her morning walk on the common. A very foggy day. You could not see very far. I was walking with my friend Nicky and her dog Basil, when a large Labrador came up behind Summer and scared her. She set off running, not too sure of what was behind her. We both shouted her and she started to come back, that was until the Labrador went after her again. I shouted to him to put it on the lead. The owner did not. Nicky went to get her as she can get there quicker than me. The Labrador again went after her. Now Summers no greyhound but when scared she will run, anyone would. By the time Nicky got to the place she was, there was no sign of her. The man shouted "its there" and walked off. I dont think the Labrador wanted to hurt Summer but he was so big he scared her.

We searched and shouted but could not find her. We did not know if she was hurt or just hiding. Nicky said would she go home, I did not know as the road we have to cross is very busy, also she would have to go though the park.

I got my mobile out to ring Paul when he appeared at the common gate, very worried as he did not know what had happen to me. A lady had seen her near the house and thought she was our dog and rung the bell. She said she crossed the road and the cars stopped for her. All I know of the lady is that she was wearing green wellies. I hope I see her again to thank her.

I have always taught her like a child with crossing the road and waiting for the green man. Maybe she did use the crossing with some one else. I was so relieved. Usually I am so careful and put her on the lead if any dogs we do not know come near. But with the fog we did not even see it. I will tell the man with the Labrador if I see him again what happened, as he needs to take more control of his dog.

22nd

Pain again a mixture of RSD and FIBROMYALGIA. I have taken a few extra tablets IBRUS and BACLOFEN to see if this helps. I also put on so much muscle rub that's all I can smell. However I sit or stand the pain will not go. Every joint is very tender.

23rd

Pilates - I really don't know how this will go as I feel very stiff. I can only give it a try. Some of the moves I could not do but some helped. I am trying to keep moving so it does not get worse or go into spasms. When I got home had a rest then made the second Christmas cake. Lovely smell. Took a extra few tablets. Bed at about 3.30 even then found it hard to get comfortable

25th

Physio - First foot massage and stretching my leg. My foot did not spasm up as much as last time it felt a lot loser I still could not get much movement of the toes apart from a little twitch. Next came the neck and shoulders turn. My neck felt a little less tight than last week, he agreed with that. When he pressed a certain part of my neck it made me feel very dizzy and hot so he stopped for a while, it soon passed. He was then able to massage some more. I then laid on the bed and he manipulated my arm and shoulder, sort of pulsating it. The pain was getting bad so he stopped and the session came to a close. I was given a stretch band to work on my legs with. This hopefully will help strengthen and tone them to enable me to walk better. The session was longer than usual.

I went for the bus the pain going home was very bad. I felt every bump. The driver who I have got to know asked me what Vel had bean doing. I said helping me improve. Went to the Dentist, then a bit of shopping then home. I felt very sore and my back was spasming up. After a rest I took Summer for her walk. Later I had a violent head ache, used Tiger Balm and it helped a bit. Bed about 4am. I was quite comfortable with not too much pain.

26th

A better night than I thought I would have. Up about 8.30. Quite sore shoulders and a bruise on my foot. I have less pain than I thought I would have.

Lindsay and the boys are here with Suey. Summer was very happy playing with her most of the day. I helped the boys make a catapult or as Jay-Jay called it, a sling shot. All was going well until Tommy-Lee decided to fire Tomatoes off the garden at the dining room window. They slid down the window and looked a mess. They came in. Although it was funny he should not have done it. They ate there dinner and played with Lego and cars then Action Man till they went home.

27th

The day began quite good, average pain even after Summers walk. I have bean sorting out Lego and washing it. Paul bought some second hand that had bean in a loft, a bit dusty so I decided to put in my net bag and put in the washing machine as there was so much I put some in a pillow case. What I did not realise that there was a hole in the pillow case and a lot of the Lego came out. I stopped the machine be for it did any damage. I then spent the next half hour picking out tiny bits of Lego. So much for my time saving plan. My friends Ali and Steve came to see me and brought me some chocolates, which was very nice (thank you). So nice to see them again. Ali had not bean well so could not get before.

As the day wore on my pain got worse my knees are very bad. Took Summer for her afternoon walk. Shoulders bad and hips. I think bending and sorting out all of the Lego bits put a strain on my body.

28th

Very cold I think Winter is here. Summer had a long walk on the common, met a lot of her friends and mine. Most of the people I don't know there names but I know a lot of the dogs names. She had a good time running around. I walked too far and too high up hills, and paid for it later with a spike in pain levels. A few hours later things had calmed down to normal, well normal-ish.

30th

Pilates - Not a bad session. I could not do all the moves because of pain in my shoulders and arms but I did my best. I can now balance on one leg when I need to. I know that Pilates has made a big difference to me. Before I started Pilates, I had little coordination and not much balance. I think that could be said for most people though. Now I know a lot of weeks I do better than some of the others.

Well that's just about it for this time, its certainly bean a strange month with a new Physio and Summer's episodes plus getting back to normal. That took a lot of doing after my Hospital stay but I am just about back to where I was before I was admitted.

NEVER GIVE UP.

Hope you are well as you can be,
'till next time Love Gill.

PLEASE RELEASE ME

2011-11-05T20:34:00.007Z

October 1st

Still in Hospital. Fair night about what sleep I normally have. I am going to have a shower on my own without the nurse. They will be listening out for me to make sure I am ok. The shower was nice, but quite forceful it caused pain in my back and shoulders.There is a seat but I kept sliding off. By the time I had finished I was hot and sweating but felt cleaner anyway.

My foot is still in a strop and not letting go of the spasms or swelling, my toes are like fat sausages. I am still unable to put any weight on it. I am very bored here, at night when most are in bed I go along the corridors in my wheel chair. My arms and shoulders hurt from pushing it myself but at least I can leave the ward.

3rd

Woke to a blinding head ache. When my blood pressure was taken it was high 210-98 . Physio came to see if I could walk yet. I could not as soon as my foot hit the floor it went mad. Pain and spasms every where going up my leg. There is no way I could bare any weight on it. I explained there is no need to be in hospital as this will get better at home. Physio was not having any of it and advised for me to have a few more days.

Feeling very misunderstood I went out side for a while even though it was dinner. I was in no mood to eat. They know very little about RSD, but still think they know best. Went back after about hour and half even though it rained. Blood pressure taken now down a little 178-70. A new girl has come into the ward that look like she could be a friend. Played dominoes with her, a nice change. Went for a shower then bed about four.

4th

Doctors around today I asked them why I need to stay. The spasms are worrying them as they are not reducing at all. BACOLFEN has bean increased by three times what it was. I usually take 20-30mg a day mostly 20mg, and the doctors have upped it to 60mg, starting now. I said is not too much all in one go they said no it was quite acceptable. They are getting in the pain team again, to see if they can do anything. The team suggested that I take DIASAPAM low dose to see if that's helps I am not very keen but if that is what it takes to unlock my foot I will do it short term . I had a bad experience with it when in hospital before. After some discussion with the doctors they ruled it out all together as the neurology man is coming to see me soon. Played dominoes again.

6th

Better night I think my body is so sleep deprived that it had to give in. This extra BACOLFEN is making me feel a bit strange, even more than normal. I'm light headed with tinging fingers and a far away feel. The neurology man has bean to see me asked about my RSD. He started by saying not everything that looks like RSD is. By the time he had finished he said he was sure it was 100%.

He has increased my GABAPENTIN from 600/900 a day to 1600 a day. I said that's a big step to take. He said it would be fine to do that. Also he said if that does not help to increase it to 2700mg a day if no better reduce GABAPENTIN then try CARBAMAZEPINE starting with 100mg then increasing it to 800mg in two doses. I said I need to have a life as well, with all that lot I will be a zombie in the corner. With all the extra tablets I am now taking it makes me very worried how my body will cope. My Air mattress has gone down I can not lay on it at all. I am sort of laid on my chair with my feet on my wheelchair because I feel so dizzy and far away and I have a bad head. My mattress has bean replaced with a ordinary one till tomorrow. When Paul was here at night my foot went into a bigger spasm and would not release. I have had enough of this pain and feeling bad all the time.

Spoke to Andrew on Skype today as Paul brought in his computer. The talk did not go too well so the nurse said he could ring here I talked to him for quite a while and the nurses did not mind one bit. In fact when I said I will have to go, they said no speak a little longer. Andrew worries about me as he so far away (Amsterdam). I was very grateful for that. More spasms in the night.

I got out of bed after watching a DVD, to go to the toilet and felt very week and dizzy I am still using my wheelchair, I felt like my body did not belong to me. On the way back I was having trouble controlling my arms. When I tried to stand I could not. I felt very cold. I could not move and could not reach my buzzer to call the nurse. I sat there very cold for a long time as all the nurses were at the far end of the ward. At last two came and helped me back into bed they said I was ice cold and brought me extra blankets. I am sure its the BACLOFEN that is responsible.

7th

A rough night I did not move out of bed till eleven even then I felt bad. The doctors came and reduced BACLOFEN by 10mg at dinner. A bed has come but will not blow up. I think its faulty. I laid on my friends bed as I felt so bad. Another arrived and that was a good one. Later we played dominoes again.

My foot is so painful hot red and going into spasms all the time. When will this end? Went to bed and read for a while. I do not feel right at all. About three o'clock the lady opposite told me to lay down as I had gone to sleep and was sat up right. I tried to get out of bed but could not find the floor with my foot. Everything was so weird, like a dream. No more like a nightmare. I was so scared.

Some one shouted the nurse and she helped me out of bed to the toilet. I was very floppy like a rag doll and they said I was ice cold even though I did not feel it myself. I had trouble sitting in the wheelchair and kept sliding out. I was put back into bed. I was shaking with cold and pain. Some warming pads were put on me. The night was like a very weird experience with me trapped some where in the middle. I felt very frightened but of what I was not sure. I was told that light and noise bothered me a lot. Some one watched me the rest of the night.

8th

I feel so bad I can not move, or feel my arms or legs. I can not hold anything. The nurse had to wash me. I can not tell hot from cold, as I thought the wash water was cold but they said it was hot. I can not hold a cup or move my hands. I am very worried. I even had to have a bedpan that tipped up, so then I had to be washed again . This feels like a hundred steps back. The pain in my back is really bad, they moved me with a slide sheet as not to hurt me more. In fact I have pain just about every where. This is a reaction to increased BACLOFEN I know. I am NOT taking it any more while here. As the day wore on I regained some movement in all my limbs. I stopped in bed all day. It was a terrifying experience.

9th

A bit better night, well it can not be any worse can it. Nearly full movement now. Back in my chair and out of bed. Still very rag doll like. My legs gave way in the bathroom I did not fall to the ground but it scared me. I sat in my wheelchair for a while. My foot is going crazy with pain and is ice cold but burning at the same time. A lot of ORAMORPTH today. Went for a walk later with another lady that night about eleven and got lost. Got back to the ward about midnight. Had a shower then went to bed. Read for a while. I could not sleep.

10th

Hopefully today I can go home as I can sort my self out better there. Physio lady came to see me and I walked with help for first time since I went in. My foot kept going into spasm but I still did it. She was quite surprised but said I need to walk better. I said I walk the only way I can, it will get better as my foot behaves. She was not convinced and started going on about sleeping down stairs and various things to help me. I told her that things will get better fast as soon as I can get back to normal life, or normal for me anyway.

11th

I am trying to walk pushing my wheelchair but my heel is very red, from a bad bed sore. My daughter was told on May 24th she had CANCER LYMPHOMIA. She found out today it is not CANCER - the best news yet. The problem is her thyroid gland GRAVES DISEASE plus something wrong with her blood they are still doing yet more tests. Anything is better I think than CANCER. She said, now I will see my boys grow up.

Doctors came and said if physio was happy with me I could go. I should go back on BACLOFEN I did not agree at this time. If I need to I will discuss it with my doctor when I get home. At last I can escape. Physio lady came and had me walking up the steps I did them all right. She said my foot was still spasming up . I said that RSD is very unpredictable. She said I can go home as I was safe on my feet. I told her within a week or less I would be walking my dog, she was not convinced. After getting my tablets and saying good bye to every one I was on my way.

Summer, my little dog, went crazy crying and licking me. Its so nice to be home. I know the hospital is the best place if you are ill, but with something like RSD where nobody really knows about it, all they can do is alter tablets and a lot of the time make things worse. Then you have to recover from more things. There is no where to go to get away from the ward as there are no day rooms now. Also there are no baths only showers. I like to lay in the bath when I can as it helps my muscles to relax.

12th

Awake most of night but pleased to be home. Summer is following me every where I think she thinks I will leave her again. I hope not but with RSD I never know. I miss the people I made friends with as they were very nice to me. I will also miss the nurses.

I have reduced GABAPENTIN from four times a day to three. I will reduce them as much as I can over the next few weeks. I want to take as few as I can without being in too much pain. BACOLFEN I will take if needed. The episode that happened in hospital frightened me a lot. I know I am on strong drugs but you think being in a hospital that they would take notice that it was the BACOLFEN that was making me worse. I kept telling them but to no avail. I went to bed at one thirty, I was so cold it took ages to get to sleep. Its nice to be home again though.

14th

One of my friends came to see me I used to run with her. I WILL run again soon I just need to get a bit stronger. I will prove the physio wrong. She said that I would find it very hard to run a gain. I feel alright nearly back to normal.

15th

Lindsay is here today with the boys. They were pleased to see me. Tommy asked me if I was better, I said just about. Last time he asked this he wanted the balloon back he brought it to get me better, as I was better now, but he never asked for it back this time. The boys were well behaved most of the day but very noisy. Quite a good day but very tired. Very cold again when I went to bed.

17th

Paul is back at work today so its just me and Pup. I am taking her out in the afternoon. Paul took her this morning. Quite a bit more pain today probably because I am doing more things. Still the cold feeling as well. A good walk with Summer she went mad running around. I enjoyed it a lot.

19th

Taking Summer for her two walks a day now. I gave her a bath she looked so clean and sweet. Later in the day I pulled the arm chair on my bad foot I screamed with pain. Also when I had my bath my foot reacted badly to the hot water going into a spasm. Very painful, I rested it on the bath side that helped a little. Still very cold feeling thought out my body. Used foot warmer but it made my foot swell up. My shoulders and back are very painful today.

20th

First frost of the season very cold today. Did a bit in the garden and green house. My temperature levels have sorted them selves out a little so not as bad as they were. My feet are cold the right one ice cold. If my bad foot is cold It seems to hurt less. As when it swells up, it becomes very hot and more painful.

21st

Spoke to my doctor he is happy for me to choose when to reduce the tablets. He will check up on me of course though. Wayne my oldest son is here for the weekend so that will be good. I am in a bit more pain today shoulders, back left arm and right knee. Lindsay is here with the boys they are both in a argumentative mood. Still it is nice to see them all though.

23rd

Wayne sorted out my documents on the computer, he tidied everything up for me so I can find things. He went to Egypt a few days ago so was showing me pictures he took while on his holiday. He went on a camel ride in the dessert, it was really hot he said. All too soon it was time to say goodbye and off Wayne was back to Halifax. A very nice weekend.

25th

Went into town to get some pyjamas. Got some in very soft fleece, they should keep my legs warmer. A lot of pain while walking. Pleased to get home and sit down.

26th

Pilates today, the first one since I was ill. I enjoyed it very much. I was a little out of practise, but I think I managed quite well. A lot of them said they were pleased to see me back. Had a rest in the afternoon with Summer sat on my knee.

27th
A restless night. Reduced GABAPENTIN again this time 300mg morning instead of 400mg. My left hip is quite bad it hurts to lift my leg. My shoulders are still bad as is my knee. Though my new pyjamas are are lot warmer than my others and so soft.

28th

A bad night lots of spasms in my back and shoulders. I think the pain is more FIBROMYALGIA related than RSD. I have taken 1 BACLOFEN and 1 IBRUE to see if will help the pain. Putting my shoe on is very painful so is going up stairs.

Took Summer for her booster injection and check up. She was weighed 8.8kg. The vet said she is perfect weight. I was pleased. She is such a friendly little dog and everybody loves her.

The pain seems to be in most places thoughout my body. I have bean walking different, putting more pressure on my right side so it has caused my foot and knee to join in on the pain front. RSD pain now. I am walking around like an very old woman.

Jay-Jay and Tommy-Lee are here and staying the night. They are so excited. After playing with Lego and watching a DVD the settled to sleep about eleven o clock. When I did finally go to bed, I hardly dared move for fear of causing more pain.

29th

Pain still about the same. Jay-Jay and Tommy-lee slept till about nine o'clock they said the bed was good and they'd had a good sleep. We took Summer for a walk on the common. Both of them fell over, Tommy- Lee hurt his knee but not too bad. Jay-Jay did not hurt himself. Back home they decorated some Halloween biscuits and played with the Lego again. Later in the day Lindsay came to pick them up. They said they had a good time. I was quite tired and still in pain.

30th

Bit better night no spasms much. Still a lot of back pain, shoulder a bit better. Went into town with Paul to do a bit of shopping, then on to do some Morrison's shopping. As the day went on the pain in my body got a bit less. What a relief! I am able to walk in comfort well almost again.

31st

A better day with pain. Most of the spasms and pain have moved to the right side now, neck and shoulders, not as bad as the past few days. I am now able to move without as much pain. It's heaven. I had my hair done today aswell, so now I look human again.

Well this last month has bean different to say the least.

RSD is so unpredictable I never know what will happen next.

Best wishes love Gill.

SEPT(PAIN)ER

2011-10-16T17:05:00.003+01:00

Hi, its me back from the land of pain. This blog will be brief as Octobers will be here soon but I feel I need to update you all.

September 2nd

Doctors again, I can not get on top of this pain. He has told me to up my GABAPENTIN at night to see if this helps. My pain is a lot worse if I am not moving a round so I try to keep active when I can. I spoke to him about my neck and he thinks it might be a compressed nerve.

3rd

Got Suey for the day Lindsay's dog so her and Summer are going mad chasing each other through the house. About tea time I felt sick and dizzy my words were slurred I had trouble standing up.I went to bed and was sick till my stomach ached and my back was going in to spasms. I slept very little listening to my iPod instead.

4th

I have at last stopped feeling sick but feel very battered. I only took the minimum of tablets as not to make it start again

Tommy-Lee and Jay-jay.

5th

Big day, Tommy-Lee is starting school. Jay-Jay is going to the same one as well. When I spoke to them both later on in the day they said they had enjoyed their day. Tommy-Lee said some of the girls were touching his hair, he said he liked it though. Jay-Jay enjoyed the day as well. I was pleased they both had a good day.

7th

Pilates today I am having trouble with my neck again when I turn my head and getting quite a lot of pain and pins and needles down my arm. A lot of spasms down my leg at least my stomach is better.

8th

Tommy-Lees 5th birthday we have got him a remote control tumble car with flashing lights. He loves it, Jay-Jay does as well. We got him some clothes and I made him a cake.

Jay-Jay thinks its great.

I love you brother.

9th

Physio
Good to see Wietse again, about 12 needles in and around my neck and ears. He was going to use the electrics but it was not charged up. He agrees with my doctor about the nerve in my neck. Hopefully he can sort it out.

12th

An appointment today for my nose most of the bleeding has stopped. He told me to use the cream every day not just for the two weeks that I was told last time. He all so cauterised it, I hate the smell of burning and the taste it leaves behind. Otherwise he was pleased and signed me off.

14th

I gave Summer a lamb bone, she loved it. After a while she no longer had it. I went into the garden and she had buried it near the rhubarb. Later she dug it up again had a bit more. then reburied it, it was so funny. One very mucky white dog.

Tired out after all that digging.....

16th

Physio Wietse had trainee with him and he was very interested in my RSD. We talked quite a lot Wietse filling him in with the medical info. Had a session of electric acupuncture, little pulses down the needles. My neck is very tight and shot out one of the needles he said he would hammer it back in, it felt like he had. The electric felt very soothing

17th -18th

Paul and I are going to Halifax to see Wayne and stopping the night. The journey was very painful, my shoulders were very tight, infact pain just about every where. Some days I can travel with no pain or not much and others loads of pain - it does not make sense. When did RSD make sense any way. The ride otherwise was good no hold ups. We had a Chinese takeaway for tea. Bed early for me about one as I did not know how to sit to ease the pain. Not a lot better in bed either. A trip in the town was good not too much pain. We had a pub lunch which was very good. His cat Timmy was playing as well. All to soon it was time to set off home again. Lindsay had summer so she will be having a good time with suey and the boys.

21st
Pilates was quite painful and hurt with every move. Took an extra BACLOFEN maybe that will help. I sat down to rest for a while felt a bit sick. Went on to pick the tomatoes and water the greenhouse. Then I felt very sick and had trouble standing up. I just made it to the bathroom and was violently sick, this went on a long time. I passed out.

When I came to. I was sort of half laid on the cold tiles with Summer tucked under my chin I thought it was the bath mat. I pulled my self up and walked like a drunk to the settee to lay down. Paul came in and I asked him why he was home and he said it was four o'clock gone. I some how had lost two hours. The sickness started again and I started shaking a lot. Paul called an ambulance. I was in and out of consciousness for a long time. Kept in the over night at the Hospital. The doctor said to Paul he was concerned that it might be an drug overdose because of my junkie eyes . Paul explained about the strong drugs I was on . He said he seemed happy with that.

22nd

Blood pressure a bit low so it was decided I had to stay a few more days. I had trouble standing. My foot will not like this as it likes to be active. Moving to Burton Ward soon.

23rd

Feeling worse than I was lot of RSD pain put on oxygen as levels are low. A doctor came today who knew about RSD he said he would put me on ORAMORPH every two hours as needed. Boy did I need it. Lindsay was there as well . This is the first time I have ever spoken to some one at the hospital that knows anything about RSD. Started wrenching over night, two nose bleeds and my stomach is very sore. There is a lady here that shouts a lot and wakes everyone up. She cant help it but when I am in a lot of pain it does not help.

25th

I have bean having CALAGEN drinks to build me up. Quite a bit better but very tired as had no sleep last night. My eyes are very sore and sticky. A swab has bean take to see what it is. Played a game of dominoes with another patient on my bed. I am now off the oxygen as my levels are better. Another nose bleed.

26th

I had a shower with help today it felt really good. My eyes are still very sore. Paul brought my wheel chair so I can go to the bathroom on my own instead of waiting for a nurse. I still have not walked really since I came in as my foot is very swollen and hot, and will not tolerate any weight on it.

Lindsay brought the boys to see me, they brought me a balloon each. When Tommy-Lee gave me his there was only the stick, the balloon had dropped off, his face was a picture. That cheered me up a lot.

28th

Physio came but my foot would not let me put weight on it. I said I can carry on at home as it has happened before, but they said no as I need to be walking before I go home. I said I did not walk in here so why do I have to walk out?
Pain clinic also came to talk to me they have increased my GABAPENTIN to 1600 mg a day I was on maximum a day of 900mg. Also my OXCICONTIN has doubled from 10 to 20mg a day. I feel very light headed as well. At last cream and drops for my eyes, very soothing.

29th

A better sleep but I feel worse for it. Left eye was closed when I woke very sore and red. Having lots of ORAMORPH for the pain it is getting out of control. Went to the toilet and felt dizzy and in pain, but could not get back on the wheelchair. I held on to the grab rail and must have slid down and passed out.

When I came round I was laying on the floor very cold. I shouted but the ward is very busy so was not heard. Then I started banging the foot rest on my chair. There is a lot of building work going on so every thought the banging was the work men. The light went out as they are motion detected I was in darkness. After quite a while I was missed and at last some one came. I only hurt my ankle. I was put in bed and obbs were taken. I was fine apart from being so cold.

30th

We are having a Autumn like Summer very hot, and I am stuck in here. I miss my pup.
Doctors came round and said just carry on the same. Some more drops and cream have arrived for my eyes. My foot is going into spasms all the time and more painful than it was. Lots of pain and burning. I am having a lot of extra ORAMORPH. My pain levels are bad. Rang Wietse and asked his advise. He said don't let any one touch it. I am to raise it up on a pillow behind the knee and massage it from the knee down and try to keep off it. My foot is burning like a fire. My shoulders are also on fire I am fed up. I can do this at home.

To be continued in Octobers blog.

Take care everybody,
Love Gill.

BLOG COMING SOON / UPDATE ON GILL

2011-10-05T23:03:00.001+01:00

Hi Everyone, this is Andrew, Gill's son.
She asked me to let you all know that she is unable to post her blog at the moment as she is currently in hospital due to her RSD. Her pain levels are very high at the moment and she is unable to put weigh on her foot. We all hope that she will be home soon and she is eager to get back on with her blog and keep you all informed.

Please leave any comments/get well messages below! I'm sure it will make her smile.

Thanks,
Andrew (Gill's Son)

SEALS AND SUMMER

2011-09-01T17:05:00.000+01:00

1st August

I am very tired today, the lack of sleep and the past few weeks of extra pain with my grazed leg has certainly taken it out of me. I sleep now for about 3-4 hours then I doze its not enough and makes me feel out of it most of the time.

2nd

Summers first Birthday I can hardly believe she is one already . She had a nice day with a few presents.

She had a chew with a candle in it.

Ginge - Summers best cat friend.

Ginge.

Tabby, Ginges brother also Summers friend. They live two doors away.

Summer best dog friend, Suey, Lindsay's dog.

Jay-Jay and Tommy-Lee with Summer.

Hard work Birthdays.

3rd

Pilates went well my shoulder was very loose and came close to popping out. Still very tired but when I try to sleep it does not happen. A sick and light headed feeling for the past few days.

5th

Wietse put a few extra needles in my shoulders, they hurt more than usual. Spoke to him about the light headed feeling he said he feels the same and blames it on the weather as it has bean stormy air lately. A lot of pain later and I had to wait ages for a bus.

6th

Had Jay-Jay and Tommy-Lee for a while when Lindsay went shopping. They were good boys.

Pain has calmed now a bit about level 5+.

8th

Had my hair done today. I look and feel a lot better now.

My hairdresser is getting married next year and I am invited plus the rest of the family. They are getting married in Mariachis so they are having a party here at the local football club.

9th

Pain flare up again. Spasms in the night. I had to keep getting out of bed to stretch but it did not help much. This constant pain is getting to me. I can not seem to get down to a comfortable level. Pain in my neck is shooting down my shoulder and arm and even down to my leg causing spasms again. I think it the same nerve that caused me problems before is playing up again.

10th

Pilates day. Some of the moves caused me a lot of pain, others helped. Paul is doing some painting in the dinning room so not much rest today, there's stuff everywhere. I will be helping him today.

11th

Pain everywhere, even fingers. My friend came round and brought me a belated birthday present from February. She had left it at the jewellers to have them engraved and forgot about them . She got me two little silver pot to put Summers first tooth and first hair cut. I have the teeth but not the first cut. A very nice and different gift - thank you!

12th

Paul, Lindsay, the boys and I are going to Mablethorpe to the Seal Life Centre. We had dinner be for we went to the centre. The day is quite warm so hopefully it will stop like it. We saw seals that had bean rescued. Most of the seals are put back in the sea when they are strong enough. Some are not able to be put back and stay there. These include ones that have lost limbs or blind ones they would not be able to cope for themselves. We saw ponies,rabbits, guinea pigs, an emu, lots of other birds plus other wild life.

Jay-Jay and Tommy-Lee had a wish at the wishing well. Jay-Jay wished to be a good boy. Tommy-Lee wished to be a super hero.

Jay-Jay minus his front teeth.

Later we all had ice cream. We had time in the arcades where they both did very well, winning key-rings and teddies plus a glass "diamond" each. They both enjoyed there day very much. Falling asleep on the way home.

Pain as usual stopped me enjoying it as much. The journey there and back caused me a lot of pain every where. Bed at 5am but I was in too much pain to settle. However I laid the pain still hung on.

13th

Still in a lot of pain I have taken as much extra pain relief as I dare. My left shoulder is numb and sending pins and needles down my arm to my hand. The only place I have not got pain is my left foot.

15th

IBS playing up . I think its all the extra tablets and OROMORPTH I have bean taking.
I feel very light headed probably from the less sleep than normal. Also I feel very cold even though its quite a warm day.

17th

A better night not as many spasms in my legs. The pain has lessened slightly. There is no pattern to it. One minute pain levels about four - five (my normal level on a very good day. ) straight up to a eight, or higher, then back down again, if I am lucky.

Pilates today quite a few spasms in my legs and feet, but on the whole not a bad session.
Had a rest with Summer Pup in the afternoon. She loves to sit on my knee and curl up and sleep. She is a very gentle little dog. Alert and usually up to mischief. For some reason she does not like flowers in the house and will pull them from the vase if she can.

Not me the cat did it.

Okay it was me.

19th

Physio

Talked to Wietse about all the extra pain, numbness and pins and needles in my shoulder and arm. Now its affecting both sides. He thinks its the nerves that played up before in my shoulder and neck area . The RSD does not need anything to set it off. So this really, makes it flare up. He said try not to take too many tablets as I had the junkie eyes again and looked very pale. He is away for two weeks, so no physio.

The pain has for now settled a little down to about a five -six level. My leg where I Grazed it on July 5th has swelled up a bit and started to bleed again no where as bad as it was, but still quite sore.

I think I might have knocked it on some thing. Body temperature levels have bean better during the day and slightly better at night. I have taken off the foot guard to see if it helps the night spasms as I think my legs get cold as the quilt pulls up and leaves a gap.

20th

Lindsay and the boys are here today with Logan one of there friends. They played very well most of the time in the chill out room. Logan calls me Nan as well. I feel very sick today right in the pit of my stomach. I am trying not to take any extra tablets as they will not help, I know.

23rd

Taking off the bed guard has helped a bit as the spasms have bean less but not gone. Only time will tell. Late PM/early AM, a lot of pain in joints just about every one I have got. I could not get comfortable in bed at all. Hardly any sleep.

24th

Early start today as I have to be at the Hospital for a check up on my nose at 9.15 . ( Massive nose bleed in hospital over a year ago burst blood vessel still keeps opening up) The appointment was meant to be four weeks after the last one, it was nearer four months last one on May 9th.
The doctor looked at my nose and decided to cauterise it again. I am to us the cream I was given or Vaseline to try to keep it moist so it does not scab up. As the scab is pulling on the blood vessels causing it to bleed. No where near as bad as be for though.

Met Lindsay, Jay-Jay and Tommy-Lee in town and got them new shoes for school. Lindsay got them other school things as well. They came back here for a while. Lindsay and I were both very tired. I had a bad head probably from even less sleep. I hurt a lot as I had walked further than I usually do. On a good day I can walk quite well. I am still in a lot of pain but my Ipod helps to block it out. A lot of pain later specially in my foot. Even thought I am tired my brain will not give in and let me sleep. Joint pain started again later.

26th

A very wet day. Summer did not mind the rain when we went for our morning walk. In fact she loved it. She was running along wagging her tail just like on a warm summers day. The rain did not stop until about eight at night. I was then able to take Summer out for a another walk without getting wet.

It would have bean my mums birthday today. People have said after a few years of a loved one going, it gets eaiser but for me it does not. I did not go to the crematorium as I did not want to go in the rain. I like to go when the sun is shinning it make it feel better. Hopefully tomorrow I can go.

27th

A better day no rain as yet. I am taking Summer for a walk then on the common then carring on to the crematorium, its quite a long way. Summer will have a good walk. I placed two pot roses that Lindsay got for her nanna on the plot. They looked very nice. Then it started to rain ,we sheltered under a tree lucky it did not rain for long then we were able to set back for home across the common once again.

The memorial stone is for my Dad and Brother as well as my mum. I was pleased I was able to go

I thought Summer would be tired but on the way back she was running around the common like some one gone mad. I was very tired and in quite a bit of pain. When I walk I get pain in my shoulders and back some times more than my legs. This gets worse the further I go. I had gone just about my limit. As we got back Lindsay and the boys got there with Suey. Summer was very pleased to see her. Last time Jay-Jay and Tommy-Lee were here I said we could play darts next time - the real ones with points. Neither of them are experts so a lot of them dont hit the board but we did have some sort of game . They both enjoyed it so that's the main thing. Tommy even scored a Bullseye. Summer was trying to play with Suey but she was tired so not very cooperative, all she wanted to do was sleep.

30th

Average pain today but my brain and body seam to be out of sink when I type some thing and look I have done, it wrong. My shoulders are still going numb and so are my fingers with the pins and neddles. Nearly two weeks 'till I see Wietse again. Cleaning up downstairs. Summer is helping or so she thinks. She was in the garden with Ginge yesterday while Paul was painting now she has paint on her tail, but poor ginge was squashed against the wall by Summer who was playing with him. She often jumps on him. Now he has got a lot of paint all down one side. Because he is ginger and the paint tercota its not that noticeable. He did not seam to mind. Not quite as much pain today.

Well thats about all from me.
Hope things are as good as they can be with you all .
Love Gill

OUCH

2011-07-23T20:53:00.065+01:00

1st July

The night was not a good one lots of spasms in my legs, pain seemed to be everywhere. The morning walk with Summer on the common did not go to plan. As we were going round one of the lakes I fell forward on to my knees. I did not hurt my self but it shook me up a lot.

On arriving home I realised I must have dropped my keys out my purse when I fell. I could not get in to the house. I had no time to go back to look as I was at physio in less than an hours time. I asked next doors if I could come through there house lucky they were in. I was able to get in my back door. I would have to go to look for the key later. On the bus I began to hurt I think the fall has made the RSD angry.

Wietse put in the usual needles plus one extra in my head. I told him about the fall, he said I looked a bit pale. I also told him about the heal lift I had put in my left shoe last week. It has made my hip feel a bit better not as much pain but made my right knee worse. Wietse said persevere with it and see how it goes. Wietse suggested this as my left leg is shorter than my right one. As it has altered my walking I may get some extra pain to begin with.

Went back on the common where I thought I had dropped the key and there it was at the place I had fallen. I was so pleased.

5th

Today not feeling too bad with average pain so I decided to clean and tidy the kitchen cupboards. All was going well till I slipped off the edge of the chair I was using to reach the top cupboards. My leg just slid down the side of the chair resulting in a graze from my knee to my ankle. Some of you might say I should not have bean on a chair but a step ladder. I find I have a bigger area to stand on with the chair so that's what I use. I don't go climbing very often as my balance can be a little off some days, When I first did it, the graze did not look too bad a bit red and sore but bearable. I even ran at the Club Handicap doing about two and a half miles in twenty eight minutes. I felt I did well, leg was a bit sore.

6th

Pilates a few new moves today. Joe likes to change the moves so it does not become boring. My leg was very sore it looked like I had gone over it with a cheese grater. Earlier I had put a dressing on it. Late that night/early morning the pain was so bad my nerves were going crazy the pain kept building up. I took OROMORPH even that at first did not control the pain I had to take about 2omls before it had any effect and even then it did not take all the pain away. A very rough night. More OROMORPH.

7th

I have decided to go to the Doctors just to get it checked over. The Doctor was a new one, Dr Comfort, he was replacing one that had retired, he was very nice. He looked at my leg, the dressing had stuck to the wound, but he could see it was not good. He saw by my records that I was on strong painkiller so did not offer me any thing more for the pain. He said I needed to see the nurse to get it properly dressed, trouble was the nurses were having a meeting for an hour I had no choice but to wait. By now my leg was bleeding and painful.

At last it was my time to get my leg done by now it was very painful. The nurse had to use saline to remove the dressing I had put on it looked a mess very red and sore.
The dressing she used is for burns called ATRAUMAN it does not stick and helps healing. Over the top of this went a foam to protect the leg from getting knocked called TEGADERM FOAM then over this went a stocking to keep it all in place. My leg felt very sore and painful the nerves were very mad. RSD in overload. I was in need of some pain relief. I am to go back to have it redressed tomorrow and she will check it again for infection. Home at last, more OROMORPTH. The pain is real bad burning and jumping I hope it dies down soon.

8th

A very rough night with extra extra pain, took loads of OROMORPTH and IBRUES they hardly touched the pain.

Physio- Wietse looked at my leg he was pleased with the way the nurse had dressed it. He knew as soon as I walked in I had done some thing to my leg. He is very observant. Usual needles plus some in my right hand and left foot Wietse said they should help the pain.

Summer is going for a trim as she is very long haired now, and after a walk she is covered in seeds and green bobbles from the common. They take a lot of brushing to get off.

She looks so Sweet like a new little lamb. She stopped in the car with Paul while I had my leg redressed it looks very red, sore, hot and swollen and slightly smelly. The nurse is treating it as a burn.

She said the nerves have bean exposed as I have taken off quite a few layers of skin and that is why there is so much pain . I explained about the RSD. I am to try to rest it and keep it raised when I can.

New dressing on.

My leg has gone the typical RSD colour and keep going into spasms. Putting it up does help a bit but as soon as I stand the pain and RSD colour floods back.

9th

Awake most of the night with pain hardly any sleep. My knee and ankle have ballooned and are more painful. The ankle is the worst where it was first injured when I fell and got RSD seven years ago.. Later on my ankle got even bigger. Taking a lot of morphine.

11th

Today I am back at the Doctors to have my leg redressed again. My leg and foot are still very swollen. When the nurse took off the dressing it smelt terrible she took one look and said its badly infected. A swab was taken also to see what infection it was. I thought it was as it has bean weeping through the dressing which was wet. A lot of dogs including Summer had bean stiffing at it. My leg was very RSD colour right from my knee to ankle. I was put on a course of antibiotics ERYTHROMYCIN 4 a day for seven days. These could be changed if the infection is something different to what they thought. I am to keep the dressing on till the 14th and not disturb it.

I don't know how much of this swelling is infection or RSD. The nurse thinks most is infection.

As the tablets begin to work the swelling should go down. I had my B12 injection as well,this one did not hurt too bad I think with all the other pain it was not noticed by my brain.

12th

Its my Daughters birthday today. Paul and I got her a Bench top, a Guardian Angel key ring and some skin cream. I also made her a cake, but that did not turn out very good. She also got some money. I went round in the morning to see her. She got lots of cards and presents. Paul and I went at night to see her as well.

13th---seven years since I fell and got RSD (see separate blog)

My foot is so swollen that I am having trouble getting any shoes on every pair are tight. I have bean wearing my sandals even in the rain. I am not at Pilates today as it would be too painful. I am still taking a lot of extra MORPHINE, its playing havoc with my eyes. I need it thought the pain is bad.

14th

Back to see the nurse to get leg redressed, it looks a bit better still very red and hot with the skin hanging off, it is not a pretty sight.

Foot and leg are still very swollen. The ANTIBIOTICS I was given are the right ones. I can have a bath now but not to stay in long.

That will be good as the warm bath eases my muscles and bones. The bath was heaven but very sore on my leg. This is the first day I have cut down on the MORPHINE. Bed at about 3am, slept for about four hours. The first time since I did my leg.

15th

Physio- Wietse looked at my leg and said it looked bad but normal for a RSD leg. He was pleased the way it was looking. Later in the day I was very light headed I think the MORPHINE or lack of it, has a lot to do with it as my body has got used to having more than normal and is crying out for it. I feel quite sick and hot withdrawal signs. My body seems to make more pain, so I will give it more MORPHINE.

16th

A very rough night hot and cold a lot worse than normal, a lot of pain. My foot and leg have gone down a bit but still having trouble getting my shoes on. Paul and I are at Jay-Jay and Tommy-Lees school fair, it had to be inside as it was raining again we have had a lot of rain this summer. The fair was very good and well attended.

17th

A better night. My leg is improving bit by bit I can now see why it is bean treated as a burn as it looks just like one, the smell from the infection has gone. I am helping Paul a bit to rub down paintwork as we are decorating the stairs and hall way. I can not do it for long as my shoulders and hands hurt but I did a little to help. The ANTIBIOTICS have played up my IBS. Stomach is swollen and sore.

18th

Back at Doctors the nurse said my leg has improved a lot, it still looks very nasty and is still very sore but I think the worst is over. She wanted me to go back on 21st/22nd, I asked if I could dress it myself. She said I could, but to look out for any changes after the ANTIBIOTICS finish. I am to go straight back if any thing changes for the worst. I can put a little moisturiser on it as well. Temperature changes are bad my body is still asking for the MORPHINE. I am getting a lot of spasms also in my legs. I feel quite a lot better all round. I think the extra pain and the infection was too much for my all ready batter body to take in.

20th

I am back at pilates, leg was quite sore but is improving. I enjoyed it a lot it was nice to be back again. Very tired after the session. Paul and I have bean putting the things back in place after the decorating.

21st

Better night all round less pain and soreness. Slept for about four hours.

Today is Jay-Jays school play Musical Madness. Music through the ages starting with Elvis Presley. For today that was Jay-Jay, he was brilliant he acted his little heart out putting every thing in to it. When finished he got a very loud Cheer, especially from his brother who was seeing it for the second time at least.

We all enjoyed it so much. The music went on with The Beatles, Abba, Micheal Jackson, Steps, Spice Girls and then to finish Take That. All the children did very well a lot like Jay-Jay and Tommy-Lee are going to a different school after the holidays. I think they left in style. The teachers should be very proud of them all.

22nd

Crap night sleep.I realised when I came down stairs that I had not taken my night time tablets my MORPHINE one also. I think that is why my night was worse than normal. I have taken so much extra Morphine that my body can not do with out it and goes into withdrawal. Normal dose is 10 mg a day. My leg is very painful and looks very red.

I hope its not infected again. The swelling has gone down . I have redressed it so I hope that helps with the redness. Wietse is ill so no physio today I could have done with talking to him as well. I hope he gets better soon.

24th

Went with Lindsay, Jay-Jay, Tommy-Lee and Paul to a Fun day at the football ground. The boys had there faces painted and had various goes on the stalls. The day was very warm and enjoyed by us all.

25th

My leg has calmed down and looks a lot better not as red and painful. The RSD has calmed down for the first time since I did it. The sensitivity has bean very bad even the slightest touch had me nearly shooting out my skin.

I feel very tired and achey today maby the last few weeks have caught up with me, with less sleep than normal.

26th

Doctors today for tablets and update on how I have bean. All tablets are to stop the same. He is pleased with my leg. I no longer need to dress it now. I am to start using the cream again for my nose as its starting bleeding quite a lot again. I feel quite a lot better today. The extra MORPHINE I was taking has now stopped. My body got quite used to it very quick and I have had a few withdrawal symptoms . I hope that they will now settle down.

27th

Pilates was good. I am really enjoying it, the other ladies and one man are very nice and it makes it a lot more than just exercises. I know it has helped me a great deal in balance and confidence.

29th

Physio Wietse is back all better now. I showed him my legs he was very pleased the way it had healed. Usual needles and a talk. I told him about a program I had watched about what happens to your body if you do not get enough sleep. (Many hours with out ) The brain just switches it off yes what ever you are doing it will just cut out. This is to protect your body from futher damage. I think this is what was happened to me a few years ago when I was falling asleep every where, even stood up. I was dianosed with possible NARCOPSY. I get a little more sleep than I used too. On average three to four straight sleep a night. Maybe with a few minutes in my chair during the day. Makes you think dont it.

30th

My oldest son Wayne is coming from Halifax to spend the weekend with us. Today is his Birthday 32nd. We got him a jumper, shower stuff, a shirt and he had already had money. Lindsay and the boys also are here. We, Paul,Lindsay,Jay-Jay Tommy-Lee, me and of course Wayne are going for a chinese meal at an all you can eat place. Jay-Jay got a bit carried away with the chocolate from the fountain he had a big bowl full with a little bit of ice cream in it. There was chocolate all over his hands. Tommy-Lee was still there so Lindsay and I went to see what he was doing, half expecting him to have his head in the fountain or be on the table. He was neither just stood there like a little Angel with all his curls. With the fountain being on the table Jay-Jay could not see what he was doing as he had to hold his bowl at arms length. The meal was enjoyed by us all.

31st

Wayne and I are packing up Andrews computer to send to him in Amsterdam. I need his help to make sure I have packed every thing. Wayne certainly packed a lot into this visit even going next door to help them out with a printer problem. Going to see Lindsays new house as well.
We got Andrews computer mostly sorted. yards of bubble wrap and strong boxes. The rest I can do later. All too soon it was time for Wayne to go. Its bean a good weekend and so nice to see him the last time was Christmas.

Finally my leg has improved so much and back to RSD normal. I am so pleased, its bean a very painful month.

As you can see much improved.

Well thats about all, till next time.

Bye for now love Gill.

THE SEVEN YEAR ITCH

2011-07-13T15:27:00.048+01:00

Today it has bean seven years since I fell. The fall that started this, RSD nightmare.
I was told it was a sprain to my foot. This would recover very fast and I would be back to running in no time at all. Treat it as a good rest before cross country season begins, I was told.
Things were not to be that simple were they. Then , RSD was diagnosed. Like most people I had never had heard of it. When I was told a little about it. I did not want it. As with most things I did have that choice.

The long road has not bean easy. A terrific amount of pain. Pain that does not go away, does not really respond much to anything, other then the strongest medication. That leaves you in a zombie state. Even then it does not take the pain away for long. The pain can vary so much not bad one minute the next off any pain Scale. The pain is there for one reason only, to make me suffer. The sensitivity can be bad at times the slightest touch is agony.

My leg and ankle swell like a balloon. The RSD colour is like a warning to keep away as the slightest touch will have me in great pain. The spasms can go on for days usually striking at night. They are often full body ones. The RSD has spread, most of my right side is cursed by it

I spent over three years on crutches. At one point I was doing races from three miles to six miles. If I got the swing right I could go quite fast. These were taken off me because of the RSD spread to my shoulders. This caused extreme PAIN. I said how will I walk without them? My physio said you wont to start with but you will learn. Learn I did, but not without pain. This was a set back but I was soon out and about again but not as fast.

My RSD might be a little different from yours but basically they all mean pain. I have other things going on like FIBROMYALGIA, OSTEOPOROSIS, B12 DEFICIENCY,CARPAL TUNNEL CHRONIC FATIGUE and RAYNARD'S plus a few not as bad. Also most of the time I am border line ANEMIC . These do not help at all at times its hard to tell whats going on. Too much.

RSD stops a lot of my life. I have to fight back, and fight I do. I do the best I can, when I can. I have a scooter for bad days and a wheel chair as well. I try to get by without these to lead as near normal life as possible. My life was not normal before but in a different way, more crazy.

I have tried various treatments, HYPERBARIC OXYGEN TANK, TENS MACHINE, GUANETHIDINE BLOCKS. The TENS and the BLOCKS did not really help. I thought they did to start with but I think I wanted them to work so much. After using the TENS a few times, on different settings, I ended up in Hospital. My body started to give in and shut down. The blocks were too painful for my very sensitive foot. The Tank worked quite well but the temperature changes and pressure to my body was also too much. Very bad head (burst ear drum the year before) and ear pain dizzy also this put me in hospital as well.
I think the RSD takes so much from the body there is little left to fight any changes or illness off. As when I get a virus or cold it takes more time to recover. A virus can put me in Hospital for a few days or like last year three weeks. (Water infection then water retention)

Tablets play a very big part in my life. Its a case of taking enough to get by with out putting my self in zombie land. MORPHINE and GABAPENTINE are the main ones.

Here is a list of Prescribed tablets I take daily. Plus others.

Omeprazole 20mg. 1- This helps my stomach deal with the strong stuff.
Baclofen 10mg. 1- half morning/half night. A muscle relaxant.
Colecalciferol 400unit. 2- Osteoporosis.
Cyanocobalaim 1mg/1ml- Injection every three months for b12 deficiency.
Dihydrocodeine 30mg. 8- if needed. For Pain.
Ibuprofen 400mg. 8 - if needed. For Pain
Gabapentin 300mg. 2- For Pain.
Oxycodone 5mg/Naloxone 2.5mg. 2- For pain the Naloxone helps with constipation.
Peppermint oil2ml. 2-for IBS.
SnoTears1.4%. Eye drops- when needed.

Ibandronic Acid 150mg. 1 monthly for Osteoporosis.
ORAMORPH 10ml/5ml- For breakthrough pain. Every 2 hours if needed.

I use Bio freeze and Ibuprofen Gel also Difflam Cream and Tiger Balm all for Pain Relief. They all work very well.
I also take Laxatives Lactulose oral. Also Laxido Orange most days.
I all take Vitimin C, 500mg Gingko Biloba , Siberian Ginseng and Echinacea.

I try to take as little as possible strong pain tablets, but when things go to extreme pain mode, all these put together are not enough.

The side affects are bad ,constipation, nausea, headaches, extreme tiredness yet insomnia and very dry eyes. Without I would not cope, I could not cope. The dose now is the lowest I have ever taken. I just get by. I have got to retrain my body to help its self. I do most things every day even a little running now and again.. Some thing I thought I would never do again. I would love to line up at a big cross country race like The Nationals, but I do not think that will happen, but I did not think I would ever run again so who knows? I also do Pilates most weeks I know this has helped a lot with my balance. Also helps strengthen muscles that are week.

Sleep is all most non existent(INSOMNIA) and has bean for a long time. Even with the strongest tablets it does not happen. I do not take any sleeping tablets now at all. I go to bed when I think I can sleep. Most nights about four am some times I do not go to bed at all. If I am lucky and the pain will let me, I will get a few hours sleep about three or four. I fall asleep some times even when stood up as my body is so tired.

RSD can not be cured but can be tamed. The work is hard and a lot of it. I feel I have got some where, only to be knocked back down again. After a while this gets to me but I keep getting up again as if I don't, no you else can do it for me. Some people give up when the going gets tough but if you do you have no quality of life. I want to live as close to a normal every day life as I had before.

I have a wonderful Physio for about six years now, that gets the best out of me and gives me loads of advice. He knows about RSD and has treated it in the past. He does ACUPUNCTURE every week I go, and massage when the pain will allow him to. If I am in a lot of pain he will not touch that bit so it does not get more upset. There is no specialist here so he is my one and only. I have a good Doctor also. When I first went to him with RSD he had heard of it but never seen it. Since me getting it he has researched it and also bean on my blog. I am lucky in a way as I was diagnosed early.

As you can see there is life after RSD IT IS NOT THE END even though at the time it feels like it. I know not every one will fight back, but I think you need to and tell this RSD you are the boss. There is not really any research here like in some other country's. So a cure is a long way off, if there is one at all.

I hope you have enjoyed this Seven Year Itch post.

KEEP FIGHTING

Bye for now, Love Gill.

ALLSORTS JUNE

2011-06-21T19:26:00.043+01:00

June 3rd

Physio- Wietse put in the usual needles he said my muscles were very tight and my body stressed. There has bean a few things going on so that's probably why. Not too much bleeding today.

Went back to where my phone is in the river, but now it cant be seen . I called in to see my hairdresser and she said someone she knew was willing to try to get it back. A while later we all gave it a good go but the water had risen a great deal so it was dangerous to go in. It was good of them to try.
I am still getting a lot of pain in just about every joint I have got, more so when I am not moving.

4th
A rough night with pain and burning. Lindsay and the boys are here today. Lindsay has not bean well. Played with Jay-Jay and Tommy-Lee most of the day and I'm really tired after last night lack of sleep. Hopefully tonight will be better.
I have IBS and I am finding just lately things I used eat with no problem, upset my system now. One of my favourites, a cream cake, is the latest one.

Late night/early morning. My body feels like it is on fire intense burning and a lot of pain. I gave in and took OROMORPTH. Maybe its because I am tired or am going to get a virus or some thing. I don't know yet. I could just be over doing things.

I went to bed at 4.30 and got up again at 6.30 after no sleep, the OROMORPTH had made me itch plus it did not really help the pain. So much for sleeping tonight.

5th

We (Paul and I) are decorating Andrews bedroom. We are finishing putting the wallpaper on the walls today. So far it looks very good. The room has not bean decorated for about 11 years. So it was in need of doing. As you can imagine I am very tired, falling asleep stood up. However when I sit down to rest, the pain starts again and its as if my brain says no sleep for you. My eyes are very sore also. I have a big problem with very dry eyes and use drops. ( SNO TEARS). Had about 20 minutes in my chair then to bed about 2.30. The pain seems to have settled a little. Hopefully for a while.

6th

I slept till just after 7am. Nearly 5 hours sleep, that must be a record. Did I feel any better? No I felt very light headed and had a headache. I think my body was confused as this does not usually happen.

8th
A year today ago today I lost my little Sandy ( my little dog) When she passed away I felt I could not or want to go on. Then in September we got Summer Snow She made me feel there was life after Sandy but it took time it was not instant.
I gave Summer a bath she looks so little. It seems she needed one, the water was black.

After she was dried and brushed. A very different looking dog.

Clean, but not for long.

She is a little digger and seems to go in all the mucky places. So she does not keep clean for long. After she was dry we went on the common with the sun on her she looked like an advert for Persil (gets your whites white). Just as we got back it started raining very hard, so we were very lucky.

Later on I went for a run a bit hard going as I have not bean for two weeks. I met some one I used to run with she was so pleased I was running a bit now. I explained as we ran together that it was a bit hit and miss when I could go.

10th

Just lately I have bean having extremely cold legs and arms and a lot of the time cold body I am so cold some times that it is painful. I even put my vest back on to see if that would help. At other times so hot but freezing cold to touch. Its like having a mini flu all the time. I know this is part of RSD but its getting worse and worse. I am at physio today so will be asking Wietse all sorts of question about temperature changes. I asked if it will improve at all. He said he could not answer that as RSD does its own thing. The sensitivity is back with vengeance as well more so on my legs even the blanket I cover my legs with hurts.
Sometimes may be I don't take enough pain relief but I try to make my body work for its self.

12th

Did a few things in the garden. Andrews room is about done new carpet to be fitted on Friday.
My temperature seems to have settled down a bit, so has the pain but the sensitivity is still bad. Two out of three is not bad. Summer is going on the common most days now. She loves running around and meeting new friends. So do I. Sleep is no better I think my body has decided it does not need it any more.

14th

Very warm day had my shorts on. I can see quite plainly that my right leg (RSD) is a lot bigger that my left one. I am getting quite a lot of pain in my legs again. I think the common could have a lot to do with it as its very undulating. I could take Summer down the river side but then she hurts my shoulders a lot. As she needs to be on the lead more. I think the common is the best bet. I enjoy it a lot as well . You can just get lost in your own little world on there.

Laid in the warn sunshine a bit and got my legs burnt. I went for a run early evening it went well. Later on the RSD really played up it felt like I was inside a very hot fire. My legs still felt cold to touch. RSD is crazy. You could not even make these symptoms up. I dont think getting my legs burnt helped at all though.

15th

Pilates again it has not bean on for two weeks. Everything was good, a bit stiff in some moves but on the whole not too bad. I have bean doing a bit at home but not as much as I do in class.
Temperature changes are very wild today hot and cold swapping all the time.

16th

When I was on the common I twisted my knee very painful. All the way round I was in a lot of pain . When we got back I used a lot of BIO FREEZE that helped. In the afternoon I went to see some friends they know a lot about Healing stones and crystals it was fascinating to listen to as they told me what each stone can do. Some are very pretty. They lent me a book so I can learn a bit more.

17thd

Physio again - I asked Wietse about an allergy tablets for my hot cold changes if it might help. People are some times given them for heat rash or to stop itching. He said they might, it was a case of suck it and see ( his words). I will be seeing my Doctor soon so will ask him. Also my right hip is higher than my left putting my walking style out (what style) . He measured my legs to see if one was longer than the other and it is by more than usual limits . He suggested a small heel rise in my left shoe that might help with the hip pain also. He did the usual needles, and as always bled from the ear and neck after he had taken the tissues away even though he stood there a while waiting to see.

The carpet is now fitted in Andrews room. Now it looks complete there are a few bits to finish off but on the whole it is done. Over the next few days the furniture and Andrews things will go back in. I still have the curtains to make as well.

18th
My daughter Lindsay and the boys are back from there holiday in Spain they look very well and tanned. Lindsay is very brown she makes me look like Snow White, so is Jay-Jay. Tommy-Lee is not as brown, but he said all the sun went on Mummy and Jay-Jay and some on Daddy and not him. The holiday has done them all good. I am getting a very sharp pain in my neck shooting up the side and middle of my head I think its a nerve trapped or some thing like that. My wrist and right hand is swollen also.

21st

Spoke to Andrew on Skype this morning it is his 23rd birthday his first away from home. We had a sort of breakfast together conversation. We have got him a new mobile but he will not get it till after his Birthday as its still to be delivered. This Birthday is very different from any others for him and me.

22nd

Pilates - Went quite well some of the moves made my neck worse. The weird thing is I never know which movement is going to make it hurt. I sat down to put on my shoes and a pain shot from my neck. There are not many places left that I do not get pain now, some worse than others but still more than I would like. That's the problem with RSD there are so many horrible types of pain. Then there is all the other things that cause me pain also. FIBROMYALIA and OSTEOPOROSIS just to name two. Its hard to know which pain is causing what. I think a lot of the pain can be caused by another pain, say from the FIBROMYALIA which upsets the RSD, then it does not know when to stop. Stress also plays RSD up big time. My right knee is also quite painful and still swollen. Sensitivity is also bad at the moment the slightest touch can hurt me a lot. Even a paper on my knee sets off a horrible stinging burning sensation that's not nice at all. RSD which ever way you look at it is EVIL.

24th

Physio- I told Wietse about the extra pain I have bean getting. He thinks it might be an inflamed nerve in my neck. He put some of the needles in different places to see if that will help. They did not hurt as much this time also I did not bleed

I am trying to get by on the tablets that I take every day with no extras. Some days it is not too bad others terrible. I do give in some times and take the extra MORPHINE as I know it will help.
When I went to bed I could not lay on my left side as my head was very sensitive and quite painful. Not the shooting pain as before.

25th

Lindsay and the boys are here with one of there friends. I showed them Andrews room now that it was finished. They thought it was cool and asked if they could play up there. I said they could as it was going to be their room as well when they come to stay the night. They all wanted to stay right away. Not this time soon I said. I could not cope with three of them.
Jay-Jay gave the room a new name - The Chill Out Room.

26th

The shooting pain in my neck has improved a lot, still sensitive on the side of my head. I now have pain inside my ears aswell, a deep down pain. It is a very warm day here. I am in the garden and greenhouse . Not the best day to be in there at all , but it needs doing. I managed to get everything done.

In the afternoon we went for a picnic to a wooded picnic site. It was very nice. So cool in the trees. Summer went as well. She had a great time running around. She has this strange habit of putting her paw in her drinking water to see whats left I think. So with her dusty paws it got very black.

27th

I have got Tommy-Lee today I am picking him up from school as Lindsay has an appointment.
Just as we came out of school Lindsay was coming down the street she had finished earlier than she thought. We all went back to her house, after a few minutes on the park. Another very warm day. I stopped there for a while then went with Tommy-Lee to pick Jay-Jay up from school. He was very pleased to see me. Soon it was time to go home.

28th

At the doctors today. I asked him about allergy tablet for my hot cold changes . He said they would not help me. All tablets are to stop the same. He is quite pleased with me and the way I am coping.

29th

Today I am out with the lady next door and her carer. We are going to Skegness to see a show called "We'll Meet Again!". Wartime songs plus other things. The bus journey was quite painful but I coped. We walked around a bit, had dinner, then on to the show. To start with it was boring then a comedian came on he was very good. After that it picked up a bit. A man played the ukulele and the violin very well. Most of the people there were born when the war was on . I still enjoyed it. The seat was very uncomfortable with no leg room. I was in quite a lot of pain jiffling around to ease the pain. I took a lot of extra (10 total) IBRUES and HYDROCOIDNE but they hardly touched the pain. They just made me feel far away but not far enough from the pain. After the bus journey home I felt very tired. As usual my brain did not agree. I had a bad night with waking some times with pain, sometimes just wide awake.

30th

I feel very tired and ache all over. Took Summer on the common she was running around like a pup possessed . Cleaned up downstairs. By tea time I felt a bit more in control of my body and in less pain.

That brings me to the end of Junes blog. I try not to let the RSD spoil my days but some how it creeps in and stays until I boot it out again - you are not welcome here! If only that worked.

Well bye for now enjoy the summer if you are getting the good weather if not make the best of what you have got.

All the best to you all love Gill.

PILATES

2011-05-30T20:06:00.001+01:00

I realised that I have often talked about Pilates but not provided any pictures or much information.. The class is weekly and run by Jo. Some of us have various health problems some don't. We are all at certain levels, so do as much as we can. I think most people could be helped by Pilates. The exercises also help tone you up.

Here are some that were taken recently specially for the blog.

Jo often helps to get us in the right position.

Arm openings.

This one is called Table Top,
It requires a lot of balance.

Table top.

The one on the left is me.

Tying your self in a knot,
We do this to stretch out the muscles after doing certain exercises.

Some exercise we use circles, these help to get the right positions or just for an extra stretch.

We use other things as well rollers, which we lay on and do exercises while trying to keep our balance. Often falling off. We also use Pilate balls for some exercises to position our knees or under lower back. Also they are held for warm ups.

Toe tapping
This one is often done on the ball.

Shoulder bridge.
I am on the right. Some of the exercises require a lot of concentration and coordination some thing that is lacking in RSD. I have to concentrate really hard often stopping and restarting. I usually have my eyes shut when laying down this helps a lot. Some of the exercises are done standing up.

Shoulder bridge using arms as well.

A good example of a shoulder bridge.

Before I started taking part in the weekly sessions I had little balance. I often tried to run but most of the time fell over. I was always falling or knocking in to things. A lot of the falls resulted in bruises and cuts. I am pleased to say since Pilates my balance has improved 100%. I am now able to run on a good day.

This a good website explaining a bit more:
http://www.livestrong.com/article/323975-why-is-pilates-good-for-rsd

I hope you have enjoyed this extra blog as much as I having showing you.

Many thanks to Jo and to all the ladies.

MAY TIME

2011-05-26T19:25:00.042+01:00

End of April

The last few days have bean very tiring I have had a lot more pain than usual, but the trip to Amsterdam was worth it. I am still suffering with with bloating and swollen ankles. I looked up water retention and RSD on the Internet, it seems RSD is well know for it. I have bean drinking Dandelion and Parsley tea as I read it helps with water retention. I am trying to get in at the Doctors but no luck. The phone lines are messed up, only the first person phoning can get through.

I showed Wietse the pictures I took while in Amsterdam, he said they were good. He filled me in about a few of the things in the pictures I took. The big liner type boat we saw is like a floating hotel used for party's and big functions (The Botel).

May 1st

Today Paul, Summer and I are going to Mablethorpe. Summer was ill on the way I think it was nerves as she did not know where she was going. When we got there it was very windy and cold, especially on the sea front the sand cut my face and legs. We looked around a bit then had some dinner. Fish and Chips of course, Summer had a little bit as well. She made lots of new friends as everybody loves her. She was very happy. I know we both went home tired. Even though I was exhausted I could not rest, a lot of pain in my legs and the dreaded burning in my feet.

3rd

I went for a run, well sort of a run.... It went well no stops. It was a cool night. Somebody asked me how I can run as the last time they saw me I was having a bad day and could hardly walk I was on my scooter. I try to explain that RSD varies from day to day, no more like hour to hour. I run if I can, when I can, for no longer than half an hour. The run does me a lot of good mentally and most of the time physically. The run is not without pain though. I try to ignore it most of the time. I am trying to train my body to fight back and get rid of the pain without daily pills.

5th

At last I able to get to see my Doctor. I spoke to him about the water retention I had. He said I probably did have it but not now. Maybe the tea worked. I am reducing my MORPHINE tablet down again only 10 mg a day the lowest I have bean on, (I went through a lot of withdrawal last time I reduced but was able to cope, just) with the view to getting off it all together. I will still have ORAMORPH plus the other pain relief I still take but I feel now is the right time. I am fed up with all the side effects.

6th

Physio again- I spoke to Wietse about reducing the tablets as I had done in the past. I asked him if any one had ever managed to control RSD with no pain relief or alternative medicine (Cannabis). He said he knew of one but she had already become a recluse in her home and barley left her bed. He said I was a lot stronger person and would do well if I took baby steps and did not rush it. I know a lot of tablets I will be on for life like the OSTEOPOROSIS ones. But a few less would be good.

9th

My nights have bean shorter than ever some nights going to bed at 5 am, I am awake between 6- 7am if not earlier. I wake during the night as well, sometimes like I am scared by some thing. Or sometimes its the burning pain in my feet. Or just my body temperature going crazy again I am having a lot of problems with it.

I am at the Ear Nose and Throat specialist today. He had a look at my nose which has bean bleeding every day since I was in hospital last time over a year ago. He put in a small camera into my nose after numbing it first with LIDOCAINE . This ran down the back of my throat and made me cough, at one point I was unable to speak. He said it looked very red and sore right to the back. The part where it has bean bleeding the most, started again so he saw straight away where the problem was. He cauterised it and looked in the other side saying how narrow it was, from the swelling and bleeding from the other side. I told him when I was younger I had an operation on my nose as it got damaged in a motor bike accident.

10th

A bit better night than most I have. I feel a bit light headed and sick feeling but no head ache to day. Did a bit in the greenhouse. Also moved some big Lillys into tubs. I hope Summer leaves them alone, she seems to like to destroy yellow flowers.

I went for a run later night time. My shoulders hurt to start with so did my knees but I did the usual thing, ignored them. The pain went down to a more sane level. The run went well, one stop it was a bit warmer that last time.

12th

I am looking after Tommy-Lee today. We went on the common with the football but it was very windy and kept blowing away. Summer went with us and I let her off the lead. She was very good and came back when told. After the common Tommy played on the park then it was home to an indoor picnic and a few games on the Wii. He then fell asleep watching Doctor Who. He was still asleep when Lindsay came to pick him up.

Later on did some work on the blog. Unbeknownst to me Blogger went wrong and I lost about three hours work (from the Amsterdam Blog)

13th

Very rough night a lot of Pain and burning. During the day the pain is copable but night its really bad.

Physio- Talked about pain to Wietse. He thinks a lot could be withdrawal and RSD being RSD.
He was talking about his childhood, when I felt very strange and hot saw more than one of him and he seemed to get further away, sort of passed out. I soon recovered after laying back for awhile. Very strange. I usually pass out when I am getting a virus or some thing like that.

16th

Not a good weekend a lot of pain in my joints worse when I try to rest I think this RSD has got it in for me. Big blood tests today liver function kidney test and full blood count. I am still getting a lot of pain in my arms and shoulders the pain lessens if I hold them up. Wietse says this is because the blood flow is reduced.

17th

Cleaning upstairs every thing was going well until I fell and knocked my bad leg on the bed. I screamed any body that heard me would think I was being killed. I laid on the bed. My leg swelled up straight away. The already sensitive leg went mental, then so did the rest of my body. I laid there till the pain subsided a little. Even a lot later it still hurt and burnt a lot.

19th

I have got Tommy-Lees company today. We are going to the park behind where he lives and having a picnic. The park has recently bean done up so its very good. Tommy had me trying every thing out and looking after me, if I went too far on the climbing frame or too high on the swing by shouting - Nanny be careful. We had a sort of game of football but as we had no ball we used a old empty beer can (not one of mine). We played that on the waste ground behind the park as I did not think it was a good idea to play in the park with a beer can for a ball.

I live near the river and these two swans come back every year to nest. There are seven babies.

20th

Physio- Talked to Wietse about temperature changes and up and down pain. I told him I stood in front of the fridge and instantly turned very cold then sweating. he said that's typical RSD. He said what I am experiencing is not uncommon for RSD. I just seem to go from one extreme to another. I do not go in the freezer to get things out if I can avoid it as it causes pain I know some is from my RAYNARD'S but its getting worse. I showed Wietse my leg where I knocked it on the bed, its still very swollen and the bruise has not come out yet. He said keep a eye on it and if it gets worse see a doctor. He will check it next week.

Since I had my nose done (May 9th) it has not bled as much but still not stopped all together. I am back in few weeks time. If they send me an appointment. Last time they forgot.

21st

Summer had her first bath at home (first time was at the dog cutters) she looked so little when wet as most of her is fur. Lindsay helped me I think Summer quite enjoyed it. She looks so white ,but not for long. Her nick name at the moment is Scruff Pup as she get so mucky. She is a digger and many holes have apeared on the lawn. When I have my bath she trys to get in, or licks the water and bubbles by standing on tip toes. She looks very funny.

24th

Today I am starting to sort out, and take off the paper in Andrews room ready for decorating. I am doing a bit then stopping for a rest. I have decided to stop my afternoon tablets to see if I can cope with out them, GABERPENTINE and BECOLFEN.

I went for a run later on and saw a lady I used to run with. She said it was nice to see me running and asked how was it possible. I said I have worked through the pain barrier and come out the other side ( well at least for now). I am trying to get my body to help its self as much as I can. She asked if I was pain free, I said far from it. I believe the more tablets I take the more my body demands. I just take enough to get through the day. The pain is at its worse when I am not doing any thing.

25th

Not too bad a day, even took Summer on the common I even let her off the lead again she loved running and jumping in the long grass. Later on we saw the family of swans. They have grown a lot.

27th

Physio- All went well no bleeding from the needle's today but I was cold so may be my temperature has some thing to do with it. I got a little book all about ACUPUNCTURE from the dentist of all places. I showed Wietse it he looked at it and said he had bean doing it all wrong. Joking of course he said it was a good little book and explained a lot. ACUPUNCTURE helps because it helps to restore the balance. There are a few variations of it, Wietse uses the Chinese traditional method.

The classical Chinese explanation is that channels of energy run in regular patterns through the body and over its surface. These energy channels, called meridians, are like rivers flowing through the body to irrigate and nourish the tissues. An obstruction in the movement of these energy rivers is like a dam that backs up in others.

The meridians can be influenced by needling the acupuncture points; the acupuncture needles unblock the obstructions at the dams, and reestablish the regular flow through the meridians. Acupuncture treatments can therefore help the body's internal organs to correct imbalances in their digestion, absorption, and energy production activities, and in the circulation of their energy through the meridians.

The modern scientific explanation is that needling the acupuncture points stimulates the nervous system to release chemicals in the muscles, spinal cord, and brain. These chemicals will either change the experience of pain, or they will trigger the release of other chemicals and hormones which influence the body's own internal regulating system.

The improved energy and biochemical balance produced by acupuncture results in stimulating the body's natural healing abilities, and in promoting physical and emotional well-being.

This is why I think it is good for RSD but it is not a quick fix, more an on going treatment. I have bean treated for about six years even though the RSD has spread I am convinced it has helped to stabilise it. When Wietse is away I suffer more with pain.

31st

Doctors results of blood tests are border line but he says they are not too bad for me, so no extra treatment necessary. All tablets are to stop the same. He said I could have AMITRIPTYLINE to help me sleep if I wanted I said no way, it might help sleep yes, if you don't mind being a zombie the next day. Some people are not affect this way and it works very well for them not me.

As I was going to the Doctors I dropped my phone (my hands drop things a lot of the time) it went straight in to the river. Even though I tried many things to get it back, magnet on a string very long fishing net, it was not possible. I could even see it, but the sides of the river are steep and there is a big drop down.

Well thats Mays Blog - I hoped you liked the pictures.

Bye till next time Love Gill

AMSTERDAM

2011-04-29T20:29:00.094+01:00

22nd April

Today Paul and I are heading to Halifax to spend the night at my sons house before we travel to East Midlands Airport to fly to Amsterdam for a few days. Andrew my youngest son moved there in January. We are taking a lot of the things he could not take himself. Packing the bags is not easy as the weight soon creeps up to the limit. We pack the bag weigh it and adjust it if it needs it. Wayne is also going, Andrew does not know he is coming, or I don't think he does but he, might have guessed. Wayne is also taking some of Andrews things.

I am feeling very bloated my ankles are swollen and my fingers also. I think I may have fluid retention again as I have felt like this for a few days. My weight is up again like it was last time, I have not eaten anymore than usual if anything, less. I also have Summer now so doing a bit more walking when I can. I hope I am wrong as the flying will not help.

23rd

After a night at Wayne's we set off for the Airport its quite near. The weather is hot again, I hope it is still hot there, like it has bean for the past few days. We arrived at the Airport.

Arriving at the Airport.

We booked in, the cases were fine actually under weight, so were the flight bags.

Waiting for the flight.

After a while our flight was called it was delayed by 15 minutes.

The plane we are flying on.

Getting on the plane.

We settled in our seats and was off. This is only the second time I have flown, the last time Spain in 2005.

Wayne enjoying the flight.

Paul and I also enjoying the flight.

The flight out was very good. Coming in to Holland it looked like a patch work quilt and very flat so beautiful. Just like Wietse said it would.

Hollands coast line nearly there.

View from the plane, getting nearer.

All the colours it looked very pretty as the sun was shining.

You can see the fields of tulips.

A few spasms and a bit of pain but not too much. At the moment I am only able to fly for short distances because of my nose bleeds and circulation problems and the pain from the RSD.

Just landed.

This Airport is so big if I was on my own I would soon be lost
it is still very hot.

Having a rest while Paul and Wayne sorts out the train.

We now needed to get on a train which was next to the Airport - very clever.

At the train station.

The trains are double decker ones like our buses.

Andrew met us at the station. Wayne hid so he would not be seen straight away, but Andrew had an idea he was coming with us.

On the way to the hotel Andrew took us to his shop where he works.

Inside the shop.

Andrew at work.

Wayne, Andrew and me.

Then it was on to the Hotel Sebastians.

The Hotel.

It looked very nice and was opposite one of the many canals. Once inside we had a rest and drink. The hotel rooms were small but nice.

Inside the hotel room.

Andrew inside the room. Peace and pot.

After the rest Andrew showed us round a bit, if it was left to me to find the way I would still be there now.

The crossing did a count down so you knew how long it would be before you could cross.

Just about everyone gets about on bikes more than one on some, very often sitting on the parcel rack side ways. Children sitting in carts, seats or even just boxes on the front or back.

There are trams as well plus a few cars and scooters. To start with it was hard to get across the road with so many wheels sharing the same road. The bikers rung there bells to tell you to get out of the way. Most people did, all the time we were there I did not see any accidents of any type a few near misses with bikes and people, mostly tourists. Also we had to get used to looking a different way as they travel on the opposite side to us.

One of the family bikes.

Even the dog went by bike.

Bike park at central station.

We had a meal out and then back to the hotel it had bean a long day and the pain was building up. Bed at my usual time early morning about 4am.

24th

We get up to another hot day. Andrew is working a long shift 10-10. He will meet us later. So we are trying to find the way round on are own, not easy as everywhere looks the same.

We have decided to go on a canal trip. .

Here are some of the pictures taken from the boat.

In the afternoon a trip to The Heineken Experience.

This was very interesting it showed how the beer was made and bottled.

The first ever bottle of Heineken ever made.

Showing what goes into the beer.

Some of the very large vats.

Inside one of them.

A horse drawn cart that used to deliver the beer---

and of course the horse.

At the end of you could buy a bottle of Heineken with your name on it.

Probably the biggest football table ever-----

I had my first ever taste of Heineken you got a glass of it at the end. I am not a drinker but it was very nice

Wayne and Paul enjoying the Heineken.

I look if I am enjoying it also.

We had walked there, it was a long way and I was hurting. We got a tram back very smooth better than a bus.

After a good rest, we met Andrew from work. He had bean recommended a Tibeten restaurant. The food was very good.

Enjoying the food..

I was in a lot of pain too much walking . On the way back Andrew took us to Dam Square. Very pretty with so many people around even at midnight.

Then through the Red light District it was all right not at all like I thought it would be. Just ladies in windows. When we got back to the hotel I laid flat and took some OROMORPTH. I was pleased to be back.

25th

Today we are taking Andrews things to his place. He lives on the north side. We go on a free ferry, a short ride and we are there. Its a lot quieter there, more residential but there is a lot of building work going on.

Some of the art work.

Its quite a walk to Andrews house and it was hot. He has a room at the top it was a good size and he shares a kitchen and bathroom - all in all very nice. We walked back to the ferry.

Back in the city, we looked around a bit more then Andrew had to go to work. We went back to the hotel for a rest. Later we looked around a bit more and popped into Andrews shop. As we were all tired, we decided to not look around any more tonight.

26th

Andrew met us at the hotel we are checking out today but are able to leave the cases there to pick up later.

Cake for breakfast.A little place where we had breakfast one day very colourful.

Andrew.

After breakfast we got a few presents to take back. We went back to Dam Square where there was a fair and various stalls. Its Queens day at the weekend and that's a big celebration and some of the stalls were there for that.

A little russian shop that was full to bursting, so small that only a few people could get in at one time.

After getting what we needed we went for lunch at a wok place where you choose what you want and its cooked for you very nice and soon filled me up.

A few more pictures around Amsterdam.

Wayne and I.

Paul and me.

A peddle pub.

Amsterdam has lots of cats they help to keep the rats and mice down. A lot of them live in the shops.

Hidding cat.

Swinging cat.

Sleepy cat.

Too soon it was time to get the cases and leave Amsterdam. Andrew took us to the station and we said our goodbyes. We had a lot less luggage going back as most of it was Andrews things, so we had two bags less to take back. The train arrived at the Airport and we waited for our flight. The flight was called and we all got on the plane as before the plane was little. We were sat at the back this time so the view was not as good as when we came.

After about an hour we were back in Leeds with the time difference an hour, we only loose about fifteen minutes. We got off the plane it was a lot colder here. I was shuddering as my jacket was in the case. The walk to the check in was very long. We went through and headed for the car. Back to Wayne's for the night to break the journey. Home tomorrow.

The few days break have bean very good, but painful and tiring. I can see why the Dutch people are so fit with all the walking and biking they do.

To finish with Tulips From Amsterdam

Well I hope you have enjoyed my trip to Amsterdam I certainly did. Bye till next time love Gill

NO FOOL

2011-04-14T20:28:00.045+01:00

April 1st

Physio at last, this is the first for five weeks.

Wietse and I talked about the extra burning pain at night I am getting, and suggested I take a extra GABERPENTIN after talking over with my doctor. I asked him about HYDRO THERAPY in a very warm pool, this might help me, my doctor is the one to see about it he said.

Wietse massaged my knee gently it was very painful as he gave it a good session. When he had finished it felt lighter but very sore. He put in the needles a few more than usual. I asked him about cover for when he is away or ill. He said that would not help me as he has got to know me and my RSD and knows how it behaves. Anyone else not trained in RSD would make it worse. This happened once before with a trainee Physio and I suffered for a long time. Five weeks is a long time though to go without physio.

Why could I have not got a more common thing that every knows about instead of this crap RSD?

After physio I did a little bit of shopping. When I got what I needed I went to the bus station where my knee dropped causing me to twist it very painful. I was lucky I did not fall. Earlier it had felt so good. When I got home I had a rest and felt a lot better.

Physio helps but it can be very painful to the point that I think twice about telling Wietse about any new pains that come on. I know the pain will go after he has massaged the area and will feel better the next day if not at the time.

2nd

Not a good day for my knee sore but I can cope. Lindsay, my daughter, and her boys are here. So its a noisy day today. We played with various things and it was a nice day outside as well.

Suey (her dog) did not come because she got attacked by two dogs when she was on her walk yesterday. She is cut and bruised and a bit shocked but she is aright, poor Suey.

Summer was looking for her and cried when she realised she was not here.

5th

Fair night, I woke up a few times but managed to get back to sleep. I have started taking a extra GABERPENTIN before I go to bed. This is alright as I have bean on higher dose before but will talk to my doctor when I can get to see him. I was hoping to see him today as I am still having trouble with my chest and throat, and need to see him about the things I went over with Wietse. "There are no appointments left - try Thursday, " was all I was told.

6th

A very rough night, some how I did not take my tablets and started to get withdrawal from the MORPHINE - sweating, cold, shaking and feeling very sick. This worried me as I am on the lowest dose I have bean on for a long time and did not expect this. What is it going to be like when I stop taking them. I have bean through withdrawal before and that was bad, even though I took a long time to gently ease down.

8th

Physio again Wietse was pleased about my knee and massaged it again this time it hurt more and upset my foot. I do not think he was as gentle this time. He kept saying breathe Gill breathe. I tend to stop breathing when in a lot of pain.

The bus journey home was very bumpy and caused me more pain. I had to go to the doctors to pick up my prescription and its quite a way from town and also where I get off the bus. I picked it up and headed to the chemist but the pharmacist was not there so I had to go back. Already in pain but I had no choice.

After going back I had the choice to go back in to town again to get the bus or walk home as its about the same distance. I decided to walk home. Half way there and in trouble with a lot of pain and spasms. I sat down near a bridge and had a rest. Eventually I got home tired but pleased I was home. Made my self a cup of tea and had a well deserved rest. Paul is away for the weekend so on my own. A restful weekend for me!!

Pilates went well today. I was very tired and a bit weak but did the best I could. I made a cake for a friend as it was her birthday a few weeks ago but she was ill so I thought I would give her one now. She rang me later on in the day to say how good it was and to thank me. I had a lay down once I got home.

9th

I am getting a lot of pain in my muscles, especially my legs. It feels like I have bean on a long run - if only. When I sit its worse and my legs just go crazy with pain. I have moved the blanket guard to the side of the bed instead of the bottom to see if that will help with the burning pain as the quilt is touching my legs and possibly making the pain worse. The extra GABERPENTIN I took is not helping so I have stopped it. I still have not got to see the doctor.

I bumped my head on a chair and have a big lump on my forehead.

10th

A bad spasm during the night in the muscles around my collar bone paralysed both my arms the pain went all the way to my fingers. I have not had this before and hopefully will not again. It was very worrying.

Another nice day outside. We have bean very lucky with the weather, its more like summer (the season not my cute pup). I did some gardening. Took summer (the cute pup) out for a walk late morning and had a bad RAYNARD'S attack in my hands. I was surprised as it was warm.

My pain and spasms are still not good, lack of sleep does not help. How can I sleep even for a short time when in pain that does not go away. Most nights its 4am before I go to bed then I have broken sleep.

11th

At last I have spoken to the doctor he has given me ANTIBIOTICS, 100 mg DOXCYCINEL, two to start with then one a day, for my chest and throat as its an infection as its three weeks or more since it started. I am also to take two GABERPENTIN at night to see if that helps with the burning. He hopes that will sort out the spasms as well. He is looking in to the HYDRO session for me. I told him about the new MORPHINE tablet OXYCODONE + NALOXONE he gave last time, that it was working so far he was pleased.

Later in the day I had my hair cut it looked very nice. I am lucky as my hairdresser comes to the house and has bean doing for a long time. She is a friend of my sons. She later dropped me at the doctors for my B12 injection, this one hurt a lot and continued to do so the rest of the day.

14th

I think the extra GABERPENTIN is working as not as much burning at night. Time will tell as I have only taken four so far. A few spasms though. My arm is sore from my B12 injection and swollen.

I cleaned upstairs today and later went to my daughters house. I played with Jay-Jay and Tommy-Lee who were very pleased to see me. They are on holiday from school for Easter. Suey there dog, was a lot better but still sore. She also was pleased to see me also.

A lot of pain and stinging in my shoulders. This seems to happen when I walk for a while as my shoulders get tight. The blanket guard in its new place is helping my legs, not as sensitive at night. However the ANTIBIOTICS I was given a few days ago have upset my IBS.

15th

Physio I asked Wietse to be careful with the needle he puts in my forehead as its still quite tender from the bump on the chair. I brought him up to date with last weeks adventures and the extra GABERPENTIN I now take at night also the ANTIBIOTIC I am taking.

This week he just put in needles no massage. He said next week he will give my knee a good massage, some thing to look forward to next week, I think not. I am away for a few days and this should help. (More about that at a later date). As he takes out the needles he always checks for any bleeding. Some times I bleed a lot. Just lately I have started to bleed a few minutes later, after he has got rid of the tissues. He calls it my delayed bleeding act.

18th

Even though I have a lot of joint pain I have decided to try a run. I have not done any running if you can call it that, since March 1st. I set off, my run is a cross between a drunk and a carthorse, but its sort of running. The first few hundred yards my legs were screaming stop but as usual I carried on. This improved with more running. My chest was good apart from a bit of pain. I put that down to my lungs in protest as well as my legs. I did my usual run about 30 minutes. I had three stops. I think I did pretty well, felt good also. My running is as much for my sanity as my health and fitness. I usually take extra OROMORPTH before I run and that helps dull the pain. I could start a new craze running on drugs but I think that might have already bean done.

19th

A lot of burning in the night in my legs could this be the run? In fact my legs felt better than usual but my shoulders felt sore and for some strange reason my right wrist hurt a lot. Very strange.

My luck has run out with my stomach behaving I think its a combinations of the ANTIBIOTICS and the extra GABERPENTIN I have bean taking so now I am back to being bloated and uncomfortable again, hopefully it will pass. I do hope so.

I did some work in the green house potting up tomato plants I have about 72. Also potted some marigolds. I have a potting bench so I am able to work out side which was good as the day was very warm. Summer spent most of the afternoon with me as well.

20th

Pilates went very well until my right shoulder started to pop out again, I managed to manipulate it back in. Later on in the day it was going into spasm's. I took some pictures of the Pilates group which will be on at a later date.

I have pulled a muscle in my hand on the palm. A big lump has come up. I am having a job to grip things.

21st

Physio

Wietse put in the usual needles, he put one in the left side of my neck, this one hurt a lot and was making my neck spasm. He said just try to cope with it the pain will go and it did along with the spasms. I think he had put it in a slightly different place. We talked about various things. On Saturday we Paul and I are going to see Andrew in Amsterdam. He told me to do a few exercises on the plane to help with spasms and pain. He massaged my hand and agreed I had pulled a small muscle and not to use it too much.

All the best to every one I hope you are enjoying the sunshine love Gill

MARCH OF MANY PAINS

2011-03-16T19:16:00.066Z

March already, the snowdrops have about gone and the daffodils are here. Its getting warmer - well some days. A lot of days are still very cold and as you know that affects me a lot.

2nd March

Pilates I did alright today. A lot of weeks I find it very hard to keep focused and some of the exercises are impossible to do. After the class quite a few of us went for a meal to celebrate Jo's birthday, well it was a joint celebration for Adele and for me as well, we all had Birthdays in February. the meal was very nice. I made a cake for Jo and we all had some. Those that were too full took it home. It was very nice even if I do say so myself and they all agreed thankfully.
My knee seems to have improved a lot not as painful and less swollen. A good day all round.

3rd

What did I say about my knee - it really hurts today. I have bean on it a lot though sorting out DVDs and CDs for the charity shop. My shoulders are very sensitive and the tingling is bad. This is starting out to be a painful month.

5th

Made another cake, this one for Jay-jay my grandson who is 7 0n Sunday this is a Ben 10 one.
I had no Physio yesterday as Wietse is away I feel like I really need it as well. Lindsay and the boys came round Jay-jay is excited about his Birthday as he is having a party at the local Play Zone center - a soft play area for young and not so young. I would love to go but I would not be able to cope with the volume of noise. I feel that this stupid RSD has robbed me of so much even more now as the boys are getting older.

The day has not bean a good one I think I am getting a cold or worse as all my joints hurt and I have a bad head just where the temples are. My stomach is very swollen, the tablets I am on or most of them make me constipated big time. I feel far away I have not had many extra tablets so it must be something I am getting. Bed 4.30 but even then I did not settle.

6th

In the morning went to see Jay-Jay to give him his presents. Paul and I got him an Etch a Sketch just like the one I had when I was about 10. A game for his leap pad book and some Dr Who PJ's. He liked them all. Also I got a tin of Quality Street for him and Tommy-Lee as they love them so much. Their Mum is looking after them as Tommy would soon eat them all. Jay-Jay got some very nice presents. A car race set a helicopter, Lego and many more he was a lucky boy.

In his new suit.

Jay-Jay in his new PJS.

On his walkie talkie.

Tommy-Lee in a thoughtful mood.

A trip to Pets at Home was called for as Summer was nearly out of food. After this I went for a run. Everywhere hurt but I ignored it and did the best I could. If I can get to run it helps my mental side even if it does hurt I feel better after it, well most of the time.

I always have this RSD saying at the back of my head USE IT OR LOOSE IT. When I first got RSD it took hold very fast. The pain was like nothing I had ever experienced. I found it very hard just to get about even on crutches. I was very worried, as I had always bean very active wondering what the future would be.

About two years later I went on to the many RSD chatrooms and spoke with a girl you had just got RSD from a minor fall just like me, and was terrified what would happen, just like me. The pain made her unable or unwilling to move and she spent most of her days either in bed or in a wheel chair. I told her she must fight it or it will get worse. She said it was too strong. She is now in a wheel chair unable to walk at all. This will always remain with me. I have not spoken to her for a long while as she is no longer on the RSD chatrooms. I think this has made me a stronger person. I hardly go on them at all now

7th

My friend was meant to come today but did not turn up. I was very disappointed to say the least. I can go a lot of days and not see any one so its nice when some one says they are coming for a visit. I took Summer on the local common (park) she was a bit nervous to start with but soon gained confidence. She enjoyed it very much.

My appointment came through for the ENT clinic but its not till May the 9th. My doctor said if it bleeds like it did before I am to go straight to A&E. I have not had too many bad bleeds. probably by the time I see the ENT doctors my nose will have healed its self.

8th/9th

My body feels like it is turning against itself with lots of pain mostly everywhere. My stomach is swollen and sore. I'm very constipated the LACTALOSE does not seem to be helping at all.
My temperature is all over the place, hot, cold, all the time worse than usual if that's possible, maybe I am getting a bug or something.

Pilates did not go well I found it extremely hard to concentrate on the moves like my body had bean taken over. I did what I could. As I laid there and looked around I noticed how easy most of the other ladies did the moves it was quite sad for me.
Hopefully on Friday Wietse will have some answers.

I am doing some work on a seating unit that was Andrews. My thumb is sore from all the hand sewing. I am recovering it as it is very faded from use. Its the type that makes into a bed so it's very handy for guests.

11th

Bad news - Wietse has cancelled todays Physio appointment as he is ill. The worst bit he is on holiday till the 1st of April. That will be five weeks in total with out physio! I feel bad now what will I be like in another three weeks!?

The pain today is bad. My stomach despite taking extra, extra laxatives is no better. I think I will have to come off the MORPHINE to help this. Doctors appointment in afternoon. Talked about what had being on, he said the Morphine drop would be too much all at once so we decided to half it to 10mg twice a day. He has all changed the tablet to OXYCODONE+NALOXONE MR 10mg/5mg. He thinks this should help a lot with the constipation and stomach pain. Where have I heard that before but what have I got to loose. Went to toilet before bed...is it working?

12th

Went to toilet straight away only just getting there. Still in a lot of body pain and sensitivity. A hot bath helps with the joint pain but I can only be in a short time as my leg and foot start to hurt.

Lindsay's and the boys are here today. Spent time playing with them, very tired. Still going to toilet. I think this actually works.

13th

Today my youngest brother and wife are coming for tea. I am cooking a roast beef dinner with all the usual things to go with it and Christmas pudding. The meal went very well with every body enjoying it.

My stomach is still behaving and going down in size. Wish the same could be said for the rest of my body still in a lot of pain everywhere.

14th

I have now got a very sore throat and a splitting head ache. I think this has bean coming on for the last week. I had planned to go into town but decided not to. I instead did some knitting I can only do this when my wrists are good as they hurt too much otherwise. I am knitting teddies for Jay-Jay and Tommy-Lee.

My legs feel like sand is running through them when I stand up - a very strange feeling indeed. My stomach feels like some ones else's, well behaved not swollen or sore...am I dreaming?

15th

Today my friend Russ came to see me I used to see him all the time but now he works and lives further away so it was a lovely treat. We talked and caught up on his and my life mine not being much different from the last time I saw him. He on the other hand has got a new job moved and is starting to have a good life. I am pleased for him as he deserves it.
I now have a cold a bad one as well. Had a lay down in the afternoon, felt a bit better.

16th

A very rough night severe spasms in my legs, had to get out of bed a few times to get rid of them by standing and pushing down hard on the floor. This works for a while then they come back. They are very painful after the spasms have gone then I am left with the tightness in my muscles. This can last a few days more if the spasms continue.

Pilates went well a lot better than last week.

Not too bad a day for my body pain but my cold is not too good, at times I feel dizzy and light
headed. Had a lay down in the afternoon. I even had a few minutes sleep.

18th

Today Little Tommy-Lee goes into Hospital to have the pins taken out his once broken arm.
The surgeon is worried as to how this will go as they have become bent. Tommy is a little terror sometimes running around, and jumping off things. That's how he broke his arm in the first place.

The operation went fairly well the pins are out with a struggle they had to remove cartilage and some bone to get them out. After the operation my daughter said he was in a lot of pain more than when he first broke it. Poor Tommy-Lee. He came home later in the day. He has a lot of bandages on his arm and is back in a sling. Hopefully I will see him tomorrow if he wants too.

19th

Lindsay and the boys came round. Tommy-Lee was quiet after his big day yesterday. I told him he was very brave, he said I know Nanny.

Jay-Jay looking after Tommy-Lee

The present he got in Hospital.

Lindsay's dog Chop Suey sometimes comes round with them. She gets on well with Summer
They spent most of the morning running in and out chasing each other.In the afternoon

Chop Suey

Summer went for her first trim and bath she was looking a bit rough.

Summer before her trim.

The job takes over three hours. When Paul and I pick her up she looked very sweet just like a little lamb and so soft and white. Suey went mad nursling her and playing with her. She looks very smart.

Very tired after her big day.

She looks like a little lamb so sweet.

My cold has gone on to my chest and hurts there when I cough, hopefully it will be gone soon. Today I ache just as much as the past few days. My stomach is still good. This new medicine really works. This is a link explaining how it works - http://www.netdoctor.co.uk/medicines/100005204.html

20th

Today I am having an easy day - no cooking or much else. My body is wrecked with the cold and RSD pain so its my day off. This pain started off bad in the beginning of the month and has not got any better. I think it has a lot to do with having no physio.

My stomach is really doing good no IBS pain, very flat and regular toilet visits. At last a medication that does what it says. I have also lost weight, about 3lb. I have not taken any laxatives at all since Friday 11th. I feel a lot better all round. As soon as my cold goes I will feel better still I hope.

21st

Fairish night with pain, very sore throat. I am having a bad day with joint pain when I sit it gets worse. I am so tired I just want to relax a bit but the pain is stopping me. may be my cold has made the RSD worse. When I was talking to Andrew on Skype he said I looked very stiff and in pain. He was right.

22nd

Even though I don't really feel like it. I needed to pick up my tablets from the chemist as they did not have them all last time. As I am so near the town I carry on to pick up a few things I need. My voice keeps going and when I have a voice its very raspy. I am coughing up stuff off my chest and blood from my nose runs down the back of my throat making it very sore. I don't feel to good today at all. Things can only get better.

23rd

After a short night, I actually feel a little better. My voice is still bad but throat not as sore. I am going to Pilates as I think it will do me good and I have a new mat. The mat was good no slipping or moving as its a lot longer all of me fits on it so no more cold spots as my legs. As I used to be off the edge of the other mat so I was pleased with it. The session went well managed most of the exercises but coughed a lot and felt dizzy a few times but on the whole a lot better than I thought it would go so I was pleased I went. I was very tired the rest of the day so did not do too much.

25th

I have bean making two teddies for Jay-Jay and Tommy-Lee - Mr Bean knitted ones. They were started a few weeks ago but my wrists have bean sore so I have not bean able to do much at a time. At last they are finished, the second one at 2am. They are here tomorrow so will get them then. A better day with pain, my chest and throat seem to be improving as well. I think I have a throat and chest infection. I should really go to see the doctor, but I did not want ANTIBIOTCITS as once on them I need them more, if I can get rid of it myself it stops away longer and I build up my immune system a bit more. I do suffer more though.

26th

Jay-Jay and Tommy-Lee loved there Mr Beans teds. Tommy did not have his sling on as his arm he feels a lot better and is in a lot less pain. They had a good day playing with toys and on the computer.

28th

Early hours, a lot of pain in my joints and nerve pain now I have earache as well despite taking extra tablets the pain did not go. Is there no end to this PAIN!? Went to bed at 4.30 still in pain. Kept waking up.

Got up, pain still there I will try to work it off and try to ignore it as much as possible.
Later on violent temperature changes. Pain now has settled in my right knee and left hip else where not as bad.

29th

Today I have got Tommy-Lee for the morning. We played with play dough and when his mum came back as it was another warm day we sat outside. It was so warm it was more like summer.
The pain now has settled a bit and I'm more able to cope with it. My right ear hurts now as well but not as bad as the other one did.

30th

Not a good night. Terrible burning all down the right side and both legs. Hardly any sleep, body temperature all over the place. Some times I think this is the worst part of RSD as they does not seem to be any control over it. The nights are worse than the days.

Had a good session at pilates, everything went well. I coughed a lot though. This chest and throat infection has really got hold of me but I think I am over the worst. I am looking forward to seeing Wietse on Friday I hope he has some answers for me.

This last month has not bean good for pain and body temperature, I have a bad enough time without anything else, but the chest and throat problems made every thing a lot worse as my body reacts badly to extra things.

Hopefully next month will be better and I hope you are having better times.
Love Gill

TABLETS AND AMSTERDAM

2011-02-15T21:16:00.064Z

1st February

Today I am cleaning upstairs. My hip is sore and keeps clicking out of place. Everything was going well until I hit my forehead on a cupboard. I did not realize until I went down stairs that my head was bleeding, its a small but deep cut. The RSD took great delight in this and did its usual strop and made more pain just about everywhere. My head is throbbing.

Late evening early morning my head bled again. Sleep is no better, some times I think I would may be better off taking the pills to get me to sleep, no I will rephrase that, to knock me out to sleep because that's how strong they would have to be now. But as most people know, they have bad side effects like not being able to function properly. I think I would sooner stop as I am. I can just about cope. Some day I may be able to sleep more than a few hours. That would be so good.

2nd

Pilates went quite well there was a few moves I could not do because of my hip and shoulders. were are so sensitive I hardly dare touch them. Andrew had a bit of an accident he fell getting out of bed and broke a piece of his front tooth off. A trip to the dentist is called for not as easy if he was in UK as he does not have a dentist yet in Amsterdam. More expense. Later on in the day most of my body felt a lot less tight. I know I have said it before but Pilate's does help RSD, mine at least.

The relief was short lived as later on the pain in my right knee, yes you guessed it the RSD one, felt like red hot nails bean driven in to it again. I had to take extra tablets.

3rd

Andrew has bean given a quote for about £100 pounds for work on his tooth. I did not think that was too bad, as not long ago I had a filling and that was I think £42 with National Health.
He has bought himself a bike as that's the main way to get about there. There are bikes everywhere. A lot of time more than two people on the same one.

4th

Physio- Wietse put in the usual needles. He asked about the ones he put in my knee last week I said I thought it helped to start with but the pain built up as the week went on. He went on to put some in my knee they hurt just as much as last time. Andrews tooth has now bean repaired at the cost of the £100 he was quoted. In UK it takes ages to get an appointment if you have no dentist and at a huge cost but there less than a month and fixed more or less straight away. At no more than he would have paid here with National health. What does that say for UK?

5th

Steady day I hope. Lindsay is not coming round till teatime as Jay-Jay is at a party.
I did a few things in Andrews room. As he has not taken much of his stuff, just one large, now broken, suitcase full. I have bean putting all his things together to keep till he can have them there with him. As I was getting ready for tea I banged my right elbow on the chair the pain was horrendous and made me feel very sick. I went off on my own for a while so the little ones did not see me upset. For a long time even before RSD a slight knock on that elbow brought me to tears.

When I was sixteen, I know a long time ago, I had a motor bike accident and cracked the funny bone since then it has hurt when knocked. I know most people experience pain when they knock there funny bone but this is off any pain scale. This now after RSD can last all day or at the best just a few hours. The RSD latches on to this pain like jaws. Making me feel very sick and light headed.

A lot later on, early morning on the 6th to be more accurate, I got off Paul's reclining chair and my left big toe went into a massive strop and curled under. The pain was out of this world and most others, I think. I could not move it at all. A good while later I managed to gently push my toe back where it should be it had decided to play up big time. My leg was going into spasms. I massaged it but it would not relax. After taking some ORAMORPH I finally went to bed at 4.45am but it did not help the pain and was awake most of the night. Really that's a laugh as it was morning and light when I went to bed. The birds were singing like there life depended on it.

7th

Up early today as washing machine man is coming to hopefully put right the machine . He was here about half an hour and everything fixed now. I feel very tight in my shoulders the ants as I call them ( the nerves under my skin) are going crazy. I said I would alter the ladies trousers that lives next door. There are proving more of a job that I had anticipated. The material is silky and very fine. I will get them sorted but it will take longer.

8th

Today I feel very tired every where seems to hurt. My legs are very tight so are shoulders. Lots of TIGER BALM. Managed to get trousers right she was very pleased with them.

9th

Pilates today- I have a bad head pain along the forehead and the top when I bend it gets worse.
I don't feel quite right but not sure what it is. I still managed most of the session. After pilates at home I had a violent nose bleed direct from the vein. The blood just poured out bubbling out my nose. I hung over the toilet for about half an hour be for it stopped. Big clots had formed coming out my mouth and nose. I felt very sick, a while later I was. After all this I went for a lay down. I felt exhausted.

10th

As it is my Birthday on Sunday, Paul is taking me to THE MOSCOW STATE CIRCUS tonight on at the theatre, this is a bit different to a normal circus because the acts are mostly unique. The show was very good there were jugglers, a crossbow act, trapeze, dancers,clowns and more. Every one of them very good. I never had seen anything like it before, very different. If you get a chance to go, do.

11th

Physio-

Today Wietse did not put needles in my knee as he said it hurt enough already. Everywhere else he put them was tight and hurt more than usual. My friends came round later and brought me a card and a pot of daffodils very nice. They loved Summer they had not seen her before and did not want to leave her. They have a little Westie themselves but most people love a little puppy don't they?

Doctors appointment - I told him about what happened with my nose bleeding he is referring me back to the hospital as its the vein that has not healed. I thought it was. If it happens again as bad I am to go to Accident and Emergency. He said I cant go on like this or will be anaemic again and that will mean more IRON tablets which will really mess up my system.For the spasms I have bean getting he is putting me on BACLOFEN I was on it be for but came off it as the spasms were under control. Half a tablet three time a day . I hope this helps.

12th

My younger brother and sister in law came to see me with a card, flowers and a bar of chocolate very nice. I had not seen them for a while so it was really good.
I've started speaking to Andrew most nights on Skype we have a web cam so I can see him and he can see me its like he is up stairs. I do miss him as most night we would talk now I have no one to talk to.

13th

My Birthday I got lots of cards a few present of flowers and chocolates and a few promises of presents later and I already had my Theatre Trip.

We decided, well I did to go to the seaside it was a cold wet day but so what. Summer came as well this is the first time she has bean in the car for a long journey. She was fine she had a bit of fish for her dinner. Since we got her she has not gone to the toilet when taken out for a walk, preferring to wee on her lawn, but today she did. I was a bit a worried that she would go all day without going.

We went on the beach right down to the sea she was not bothered by it, in fact when a big wave came she sat down and the wave went right over her, she was very wet. She loved just running around just picking things up like shells and bits she found on the beach.

Cold on the beach.

Let me go I've seen a seagull.

The journey was back was painful as we walked quite a way. An enjoyable day but very tired.

16th

Pilates - Did most of the moves today but had another nose bleed near the end nothing but like the last one. This was bright red blood the other was nearly black that's how I knew it was vein blood as its very dark. Andrew did not get a job he had applied for and was disappointed but he will have to keep looking.

18th

A friend came round to bring me a late Birthday present but came without it as she forgot to pick it up but it was still nice to see her and her son. Lindsay and the boys came round later with more presents, chocolates and flowers and cards. Even her friend and children brought me a card and Thornton's chocolates. I did feel special.
Today I am in quite a lot of pain, when I move in certain position's. More extra tablets. I also feel far away it could be the BACLOFEN or something else, lack of sleep or many other things. Who knows RSD is not for reasoning with, or understanding.

19th

Lindsay and the boys are here, I really feel not well so have bean letting her do most things. I have a sharp pain under my ribs and my stomach is swollen. This does not feel like IBS. My whole body seems to hurt. Rest day today, maybe that will help.

2oth

I have bean awake a lot of my short night with pain in my stomach still. I came down stairs and rushed to the toilet in absolute agony. I felt like I needed to go but could not how ever hard I tyred. the pain was real bad. In the end I went and could not stop it just kept coming. The relief was most welcomed even thought it took a while. I think I had a blockage as I have bean going to the toilet most days but maybe not enough. I will make an appointment to morrow with the doctors.

Doctors- He thinks the pain and what happened yesterday could be either a blockage or very constipated it can happen when you are on strong medication. The treatment is to have more LACTULOSE 10ml twice a day I had bean taking this but only when I thought I needed it obviously I needed it more. Hopefully this will help. My bleeding nose problem is to be sorted out at the hospital he thinks they will do a full cauterisation. This has bean done two or may be three times before. This should sort the problem out this time. I told him that the BACLOFEN is working he was pleased. Not as many spasms but more shaking and muscles twitching. I can't have everything right can I?

22nd

Slept for about three hours straight last night this is a rare thing.
I have got Jay-Jay and Tommy-Lee for the day. We are having a picnic in side. This is my Birthday Party tea, as they said I had to have one. This went very well even Summer joined in may be a little too well. Jay-Jay and Tommy-Lee had to keep pushing her away as she was getting the food.

Summer having her tea party food.

Tommy-Lee looking thoughtful.

The food.
Jay-Jay gives it his approval.

I stepped awkward on the stairs and twisted my knee. The RSD did not like this it went mental pain and spasms plus sensitivity most places. Just a little thing like that can cause should a lot of pain. I had enough as it was. I just took extra tablets they did not really help much neither did the TIGER BALM I put on. One thing my stomach feels a lot better. than it did.

Pilates - I could not do many of the moves as my knee was too painful. More tablets. Even a newspaper on my knee felt like a ton weight. The knee is very swollen about twice the size it should be. I hope Wietse can sort it out on Friday.

Everything hurts, it hurts bad.

Physio- I brought Wietse up to date about the last few days. He put needles in my shoulders and neck plus my head. He did not touch my knee as anything near it would make it worse. I said it can't be much worse. The needles hurt and kept making my body twitch. When I put my hand on my shoulder I could feel the nerves jumping under my skin. After the needles came out which were very tight and hurt, most of them bled. Before I went to bed I took a good dose of MORPHINE ( ORAMORPH) this made me very itchy and hot, so hardly any sleep.

26th

Today we, Paul and I are going to Halifax to see Wayne and Will my son and partner and stay over for the night. The journey was very uncomfortable and painful. 8-9 on the pain scale. I took ORAMORPH before we left but it did very little for the pain. We had a good weekend not really doing much but just catching up . We took Wills late Birthday present a very large Eeyore he is Eeyore mad, plus a zip top. He really loved them. We also saw Timmy, their cat.

Will with Eeyore.

Timmy.

Timmy with a mouse.

27th

After a night sleep, well my night, I felt a bit better the pain was down to 6-7. After dinner we made the journey back. It was not as painful as the one here. It was nice to see them both again so worth the pain. My daughter and the two boys plus there dog, have bean looking after the house and Summer while we have bean away. The boys complained that there was no decent ice cream. There was only two types of Cartedo'r, they wanted Cornish as they can put sprinkles and sauce on it. Apart from that everything else was alright Lindsay cooked a lovely dinner. That night I was so tired but sleep did not happen.

Well another month gone by, a very mixed one with a lot of extra tablets added stress from Amsterdam but its not all bad. Just pick up and carry on the best I can.

Well look after yourselves love Gill.

PLANES AND PAINS

2011-01-23T20:12:00.069Z

Happy 2011 I can hardly believe its here, this is the seventh year of my RSD.

Let me bring you up to date with what's bean happening since the last blog.

January 4th

We had another inch of snow the last lot had just about gone but I don't think this lot will last nearly as long. Andrew and I walked down to Argos to get a Vax cleaner there was quite a long wait as they were so busy even though it was about five o'clock.

While waiting a large mobility scooter just about knocked me off my feet hitting my good leg. Even so it was very painful she had tried to get through a gap that was not wide enough fair enough we all make mistakes but she never even said sorry . I said to her I have a scooter I know whats its like, but you must be more careful. It was met with blank looks I know she can talk and communicate as I have heard her. Another man who saw what happened said she was always like that. People like that give disabled people a bad name.

After all that they would not take the two twenty pound notes as they were out of circulation as I had no other money with me it was a bit of a waste. I can get them exchanged at the bank but that would be closed now. One sore leg later and no cleaner.

I still am getting pain and discomfort from my IBS attack on Christmas day. My stomach hurts and makes me feel very sick half of it is from not eating enough but when I do it hurts more I feel shaky a lot of he time. I am getting a lot of pain in my joints taken a lot of IBRUES and DIHYDROCODEINE.

5th

Pilates was canceled because of the snow. I cleaned upstairs.

Summer played with next doors little dog that comes to vist, they both go crazy running around. Later on two very tired little dogs. Later on in the day Andrew and I got the cleaner no problems this time.

6th

I am at the dentist having a filling quite a big one to replace the one that fell out over Christmas. As soon as she started drilling the pain shot up into my head the pain was most unpleasant. When she had finished it felt good not too have a hole in my tooth any more. I told her about the pain she said it would pass very soon. Took extra pain killers IBRUES.

I ate my first proper meal today and actually enjoyed it sausage and mash with vegetables. I still have the head pain.

7th

Physio

Told Wietse about what had bean going on. He put in a needle just where my head pain was. This actually made it worse but Wietse assured me it would improve. The pain did not improve I went to bed in pain I did not sleep all night.

9th

Head pain is much improved like Wietse said it would. Pain else where is about the same. Hopefully tonight I will sleep.

10th

Up early could not sleep or get comfortable, pain, pain every where. Went shopping with Paul.

11th

B12 injection this did not hurt as much as before. Met up with Andrew as he needs to get a few things as he is going to Amsterdam on Monday to live. While in bed my neck went into a severe spasum and my arm was paralysed for a while. This has happened be for but not as bad.

12th

Pilates at last I could do with some light exercise I have bean doing a few at home but a group all together is I think a lot better We did some more new moves. After my joints felt a lot better. Still I am getting a lot of extra pain though out my body. Bed not until 4.30, then sleep did not come. A very restless night.

13th

Pain has not eased despite taking OROMORPH. I think the weather has got a lot to do with it all so taking Summer out for walks as she pulls a little bit, putting pressure on my shoulders.

14th

Wietse has put in a few extra needles, some were hard to get in my muscles are tight I think its all the extra things with Andrew. I hope that will help I have had enough of this extra pain. I had enough pain be for with out any extra. The needle he put in my forehead bled a lot when it was taken out he said it would leave a bruise. It did.

15th

Today I am looking after Jay-Jay and Tommy-Lee while Lindsay goes out. Still a lot of pain. My left hip came out of joint - very painful. Each day the pain seems to be getting more and more - this month the RSD is winning. What wouldn't I give to be back as I was before RSD...

I am hoping to go for a run as I have not had one this year, hopefully this will help.

16th

Helped Andrew sort out his case for his new life in Holland. He has already got a place to live there paid up for for a month. His case we think is over the weight it should be. This is a hard time for us all. I know he will miss Summer as he has come very attached to her, but she is so loving to every body she meets so its not hard to fall in love with her.

17th

Andrew got off alright, it was hard to say good bye, he had bean saying he was going for ages but it still hit me hard. He had to pay for the overweight case. The flight was delayed.

The wheels came off the case making it very hard to move. When he arrived in Amsterdam he could not find the place. As it was late he decided to book into a hotel and look in the morning.

We were a little concerned as alarms bell were ringing in our heads...

18th

After looking into more we realised he had bean a part of a very clever scam. I feel for him for what should have bean a celebration time was not. We are hoping to get back the money we paid as it was through Halifax. I feel very drained and tired. My hands are jumping and I keep dropping things. My whole body aches.

20th

I have spoken to Andrew and he has booked in the hotel till Monday, it is costing a lot, expense he could do without. He seams not too bad in him self but is very disappointed at the out come. He is trying to find some where else to live as he can not get a job with out a permanent address. We are trying to sort out things as best we can for him at this end.

I went for a run the first one this year it went alright a bit short as it was getting dark. After wards I felt very dizzy and my ears kept popping. Maybe it was the cold air as it was quite damp.

21st

Physio

Wietse did usual needles he said they went in better this time as last week were very tight and some popped out again. My ears are still a bit strange and popping, maybe I went on a plane while I was sleeping, because that what it feels like.

Still a lot of pain through out my body. My wrists are very sore so is my left ankle the veins are quite red and swollen now my knee has decided to get in on the act with a lot of nerve pain around the knee cap . I have had varicose vein problems in the past so may be its that again. I just took some extra IBRUES. That seemed to help. I am trying very hard not to take much OROMORPH as I would like to stop or at least cut down on the MORPHINE I take.

22nd

A fair night for me. I think some people have a longer dinner time than I sleep. A lot of sensitive pain especially in shoulders and back. My legs more the right one is burning a lot around the knee area. I am still very tired but as usual the RSD will not let me rest or even relax for long. The pain is not as bad as it has bean, its now more annoying than anything.

24th

Today I have a doctors appointment to bring him up to date on how things have bean. He has increased GABAPENTINE by one he hopes this will help with the burning pain caused by the nerves. He looked at my left ankle and said its PHLEBTIS inflamed veins I have bean given some cream HIRUDODID to apply four times a day this should help with the inflammation and pain. My nose is still bleeding a lot. He had a look and said its a scab on the vein that keep breaking out with pressure, or when I blow my nose. I am to keep using the cream from be for and hope fully it will heal up in time.

Andrew has now got a place to live, its not the Ritz but its a lot cheaper than the hotel. He just needs to buy a few things.

26th-

We did a lot more new moves I like different things so it does not become boring doing the same things every week. My ears most weeks are affected popping and at times a little dizzy but this week was a lot worse. I used to have a lot of trouble with TINNITUS in the past, but it looks like its may be come back again. Only time will tell.

27th

Today Paul and I took a lot of things to the local Charity shop, The Heart Foundation we have bean having a good sort out, along with the stuff Andrew left. We then went shopping, My back and hip ached. I am able to walk reasonable well on a good day, at the moment I am having quite a few better days with getting about. I still get a lot of pain but my body is copping well. Standing around always hurts a lot. A few extra IBRUES later the pain was not so bad. I took Summer for a walk she is getting better at walking on the lead but thinks everyone wants to play with her.

28th

Physio-

Wietse put in the usual needles neck, shoulders and head. I told him about my knee being so painful. He said lets try some needles there then. He continued to put them in. The first one hurt like a hot sharp knife going in so did the second one. After that it was not as bad. He put six needles in my knee. The pain was burning, it made me feel quite sick and hot with a big knot in my stomach. After about fifteen minutes most of the pain moved to my foot, which started to jump and burn. The needles stopped in the whole of the session about an hour. In all it went very well this is the first time he has bean able to do any thing apart from a very gentle massage for about two years at least. We were both pleased.

The bus ride home hurt quite a lot mostly in my back and hips. I did a bit of shopping in town then went home. I was very tired, but pleased also. This hopefully will open up a lot of things Wietse could do with my RSD leg.

29th

Tonight Paul and I are at a hog roast and Ceilidh for the running clubs 20th anniversary. I joined the following year so have bean a member for about 19 years. The food was very good so was the dancing a Irish folk come gig.

I could not really take part but it was very good to watch. Also there was a a group of younger ones doing Irish dancing it needed a lot of concentration, a very good show. The noise and the tapping from the shoes caused me a lot of pain. I ended up taking a lot of extra pain killers. It was still a good night though. After we arrived home my left foot went into a Severe spasm then my right also spasmed up. Very painful.

30th

Today I feel quite stiff but not too much extra pain. My ears are popping. I have cleaned up down stairs, I think that helped a little with the pain by loosening me up.

Well that's about it as you can see, a bit of a mixed month things can only get better.

Hope things are not too bad with you all.

See you next time Love Gill.

SANTA SNOW

2011-01-01T16:11:00.043Z

1st December

Today I feel quite good , I set to work and cleaned downstairs. Even at the end of the day although very tired pain levels were good.

2nd

After yesterday good day I have decided to make the most of this better time I am having, as I never know how long it will last, and clean up stairs. The snow is still very deep Summer is having a good time in the snow. As we have bean having severe frosts, a lot of the paths are bad to walk on. Wietse is quite worried that I will fall, he is not the only one - so am I. With having osteoporosis there is a very strong chance I will break a bone. He said I would shatter like a china doll

5th

Managed ten minutes biking and five minutes standing on strider. This is definitely easier than when I first began. I shall do this till it is safe to run again so my legs keep flexible for running again soon I hope. Pain levels still good.

6th

A very rough night with pain even after taking 800MG of IBRUES the pain still persisted I did not really want to take MORPHINE as I have gone a few weeks with out it.

Another very cold day, -14C, over night, but it was very sunny during the day. Today I made another Christmas cake which will give as little presents, when cut into four pieces iced, and decorated. More tired than the last few days probably because of pain.

8th

Helped Lindsay my daughter out, cleaning the old house up. At last she is able to move. The weather has held her up so have the builders with so many things going wrong but at last she and the house are ready. Tommy Lee had come home from nursery which he has now gone back to after having time off with his broken arm. We shared some sausage and chips.

After the cleaning was done it was time to go home. Next time I see them they should be in there new house.The walk home seemed a long way as I was very tired, when I am doing well with the pain I want to get on with things and a lot of the time do too much.

9/10th

A very bad night with a lot of pain and burning in my legs,very sensitive a lot of spasms as well. not much rest at all. Tonight I will put the leg guard back on that might help. Physio I missed the bus because it broke down down and the ten o'clock one became the eleven o'clock one but it came early and I missed it,(it can be late a lot in the winter) as the buses only go every hour to Physio I had to get a taxi and was late, Wietse did not mind and I still got my treatment the usual needles plus this time some gentle stretching of my foot as it is very tight probably after walking in the snow, and the usual talk. After I went into town and did some shopping.

12th

Today its the Santa run. A local 3KM run where every one dress up as Santa and runs round. A good glug of MORPHINE/ ORAMORPH before we left so I would not be in too much pain. So I was running on MORPHINE. Lindsay and the boys entered on the day so they are very excited. They look so cute in there little suits.

Paul entered the same time I did, he was going to walk round with Lindsay and the boys, I am running it, its about the same distance Pete and I have bean covering so I don't think I will have any trouble I hope not I have bean looking forward to this for a long time. The run went very well no trouble at all. I lapped the others and Tommy Lee shouted, go on win it. He was convinced that I could win the race. I knocked nearly five minutes off last years time finishing in 22.48 minutes. I received my medal very well earned. I did not win it. I was so pleased, all the work with Pete has certainly bean worth it. Thank you Pete.

13th

During the night I had quite a bad nose bleed it has not bean right since my stay in hospital earlier in the year. My head hurts a bit but on the whole I feel quite good. My foot is not as sensitive with the leg guard on, but pain much the same.

15th

Pilates today. A good session. My hips were quite stiff the moves helped. After a bit of lunch then home. I am quite tired but a good feeling after the run. People who do not run or have a sport will not understand how it can be missed, as at one time there was little hope of running gain.

17th

Physio - Usual needles. I made them Wietse and Michelle a cake each. Rolfe, trainee Physio was there. Also I took mince pies to share. Rolfe had not had them be for, he said they were good. Wietse said I can come next week as usual, then hopefully it will help me over the Christmas break. I have bean having a better time with pain but a lot of spasms during the night. Russ and his Mum was at my house when I got back so that was nice. We exchanged presents and cards. I caught up with what he had bean up to. He now lives in Nottingham so I do not see as much of him like I did be for. A nice afternoon.

18th

In town with Paul to get a few Christmas gifts. Paul hurt his back a few days ago I told him to move as much as he could so he did not get stiff, but he did not, so now his back is very tight and stiff. Lindsay and the boys came round, we made cakes they really enjoyed it. I made a spiced tea cake as well so a busy afternoon. Very tired later on.

19th

Club common run, a run the club puts on every year on the local common usually a toy or selection box to enter. The proceeds are given to a local charity for helping poor and less fortunate people than us. I went to watch as as yet I can not run on uneven ground. (AS YET!) The weather was very cold. I met a few runners I had not seen for a while so that was nice. After there were mince pies and hot drinks. The prizes were given out for the winners of the races.

Later in the day I went to get Paul's tablets from the chemist in town. He had the Doctor earlier and was given some tablets for the pain. With the run in the morning as well I was worn out and had a bad headache. Later on I lost a large filling from a tooth.Lucky it does not hurt I will ring the dentist tomorrow. The night did not get any better bad pain in my legs ultra sensitive I took MORPHINE be for I went to bed may be a bit too much as I itched a lot and had a very dry mouth. The MORPHINE did not help at all. I spent a long night mostly listening to my Ipod

20th

Up at 8.30, after no real sleep. I have quite a few things to do. Paul is off work. I rung the dentist as I have no pain in my tooth I can leave it till after Christmas to see them, if it get worse I can ring a emergency number and they will help.

23rd

Cleaned up down stairs. Later on Paul, Andrew and I all went shopping to Morrison's for the Christmas food shopping. Later I had a severe RAYNARD'S attack on my hands which lasted for over two hours, very pain full. White fingers very dead and later turning blue, finally red, then normal. I think its because we spent a long time around the freezer and chiller sections. My temperature is not the best even on a good day. A painful day all round. Although extremely tired, sleep would not come for more than a few minutes at a time.

24th

Physio - last one this year usual needles. Went into town to get the last few bits of shopping. When I got back, about 3.30 my friend Tracy was there. I had not had any dinner preferring to finish my shopping.When I arrived home was quite hungry. There were nuts on the table so I had just a few, even saying to Tracy that they can upset my IBS. She said you only have had a few so it should be alright.

Later on Wayne and Will arrived for Christmas. We had a Chinese for tea/supper. After tea I did the veg for tomorrows dinner and Will helped me make mince pies. I also cooked the gammon. Every one went to bed I had a bath and went about 4.30.

25th

During the night I had violent stomach pains and spasms. When I got up I was vary sick, with chronic diarrhoea. I did not really eat much dinner. Slept a bit in the after noon The pain did not go away at all. I regret eating the nuts, but the few I had certainly caused me a lot of pain.

27th

I feel a bit better than I did but not eating much, when I do I get a lot of pain. My head hurts, probably dehydration. Temperature is all over the place. My legs are burning and jumping. I can not rest. Still got the sick feeling and feel very weak.

29th

Walked down to get Paul's tablets for his back. I feel tired and still weak, a lot of pain in my joints and bad spasms. I have taken ORAMORPH for the pain - very tired and weak.

31st

Today I am in town to look at the sales. I don't feel right yet but need to get out for a while as I feel caged in after a time inside the house. I bought some nighties, a pair of cords and a shirt. In pain when I got back took more ORAMORPH for the pain.

Later on my eyes were weird and people looked like they were far away. I felt very dizzy, slightly sick not too sure if its the OROMORPH or low blood sugar.

1st Jan 20011

HAPPY NEW YEAR TO EVERY ONE.

Well another year here what will this one bring?

I hope you all have a good as year as you can and have less pain full days. I will be more than pleased if I can keep up the running and also have less pain.

Bye for now love Gill

SUMMER SNOW

2010-11-26T21:31:00.062Z

1st November

I am at the doctors today to renew tablets and bring him up to date what has bean happening this last month. Tablets are to stop the same, because of increased pain levels. I asked him about my collapse on Saturday and he thinks its a virus of some type. My sore throat and blocked up feeling is down to my sinus, I am to keep up with the steaming. We talked about having the flu jab he thinks if I get flu I will end up in hospital but having it might all so make me ill if my immune system is not up to it. Its a decision I will have to make I think I will ask Wietse about what he thinks.I feel a lot better than I did if not a little weak.
I have bean apply the hot and cold compresses to my knee it helps but only for a short while.

Summer has now had her injections so she can go out in a few days. As we were getting ready to go to the vets I bumped my head on the door handle holder a very big bump came up instantly very sore it made me feel quite dizzy.

4th

I am getting a lot of pain in my knee like some one hammering nail straight in to it also shooting pains from my foot. My knee is very tender, swollen and sensitive to touch.

5th

I had a word with Weitse about vitamin B12 as I have found out , my B12 levels have bean low for a long time maybe going back to my teens. I just wondered if that's why RSD set in when it did as my body was at a all time low time. He thinks I might have some thing and is going to look into it for me.

Poor little Tommy- Lee fell off a chair and has badly broken his arm in two places he is in hospital and in a lot of pain. He will go to theatre tomorrow to have it pulled back into place hopefully this will work if not he will have to have it pinned and plated He is very brave and more worried about his food than any thing else.

6th

Tommy has had his arm fixed he got away without pins but it was a close thing he needs to go back next week to see if it has set right. He had not eaten or drank any thing since early afternoon on the 5th. The nurses asked him how he felt he said I am hungry and thirsty and my bloody arm hurts how do you think I feel. The joys of a four year old.
He was able to have food and drink later in the day. One happy Tommy-Lee.
In the afternoon I went to see him in Hospital his arm is in plaster from his shoulder to the wrist with a neck sling. We played with all the good things in the play room. He needs to be very careful he does not fall on it. That is going to be hard as he is a typical boy always running every wear and jumping off things hence the broken arm. I am quite surprised that he has got to four years old without breaking any thing.

We (Paul and I) went to a fire work display and bonfire at village one of my friends lives in. The night was not too cold and the fireworks were very good. After we went back to her house for food and drink. A very nice night. There was a lot of standing and walking on rough ground and by the end of the night I was in a lot of pain.

7th

I have got Jay-Jay for the day older brother (6) of Tommy-Lee. We played with Lego and made all sorts of things, he enjoyed him self a lot he has bean worried about his brother a lot. Later on in the day Tommy-Lee came home from hospital he looked very pale but sounded much as normal. They all stopped for tea Tommy-Lee ate just the same as always, a lot.
I feel very light headed my knee is very painful and sensitive.
Jay-Jay accidentally knocked my ramp for my scooter on my foot. I tried to not show how much it hurt, as it would upset him but it made me feel very sick for a long time. He said you can swear if you want.

10th

A better day with my knee pain, a lot of the swelling has gone down, but now my shoulders are really bad. Pilate's I did quite well considering the pain, my joints kept clicking out of place. My whole body aches and I feel very tired. This is where a good nights sleep would help.
Later on in the day tea time I had pain in my stomach. I think all the extra tablets I have taken causes this.

12th

A rough night with spasms. A lot of pain in my left foot as well as right (RSD foot). When I looked at my left one it was swollen and a lot of red blood vessels very raised, so that why it hurt so much. One foot is enough with out the other one joining in.
Later in the day I went for a run with Pete. The difference my knee made was remarkable Pete noticed that I ran a lot easier. I still had pain in my shoulders but it was a lot easier and more enjoyable.

14th

Summer has bean for her second walk this one she enjoyed more, She went up to everyone she met and said hello, looked and barked at the ducks. She looks so small out the house but not timmed at all.
I have had a back ground head ache for a few days now, on and off since 30th Oct. Pain levels are fair but not as good as they were very sensitive most of right side. My left foot has gone down a bit so not as pain full.

17th

I am at pilates today my right hip joint is very loose and had to hold it to stop it from popping out. Shoulder also very loose. All my joints are painful and sore. My left ankle is black now with bruising but not as painful.

18th

Little Tommy-Lee has to go back in hospital, his arm is not healing right. He will go to theatre to morrow morning to have it pinned, and possibly platted the surgeon will try to avoid this if possible. Tommy-Lee is more worried about his food and how long he will be without it, than the operation its self bless him. His mum explained to him that his arm is not better and he said its no good broken, so they will have to mend it again. That's four year old logic for you.
I made my first Christmas cake. I am not too sure how many I am making this year as people ask for them. It did not finish cooking till 4am. I slipped with the Brandy so it will be very strong no driving after it.

19th

Tommy -Lee is having his arm operated on today. Lindsay my daughter his mum asked me to go to Jay-Jays school as they were doing a tea party for Children In Need. As I do not finish physio till about 12.30 getting into town about 1. I said it would be a rush as I would have to go home first to feed Summer, but Andrew fed Summer for me so it was all right. The tea was very good with cakes they had made though out the week themselves, and sandwiches and tea. Jay-Jay looked so proud. He showed me what he had bean doing on the computer.

Physio went well I was introduced to another physio also from Holland like Wietse. He was very interested in my RSD as he had not seen it be for or really heard of it. I went on to tell him how it all began and the weird symptoms, Wietse filled in any medical gaps. Later on in the day Lindsay phoned and said Tommy-Lee was out of theatre his arm was pined both sides of the broken bones. He is in a lot of pain. Hopefully he will be home tomorrow night.

20th/21st

I had Jay-Jay to stay we played all day with Lego and the car track. Summer loves children and played racing up and down with him. When bed time came he and Summer were very tired.
He had a good nights sleep I did not, spasms and pain hot and cold. Lindsay called round with Tommy-Lee home again from hospital, he said his arm was mended now. Hopefully it will be. but Tommy-Lee heals slowly he has strange blood. He might need another operation if the pins do not work. It was a very bad break the surgeon told her he was very lucky that the bones did not come through the skin. Poor Tommy-Lee.

22nd

Another rough night so much pain spasms and ice cold legs but burning hot at the same time. I some times wonder if its worth going to bed at all. I went to the crematorium to see my parents and brother. Six years today since Mum passed a way just a bit less time than I have had RSD.

23rd

Today I am out with my next door neighbour Cilla she is a member of a breathing group, she has emphysema and it was there meeting. There was a talk about homemade chocolates with samples - my heaven. So many different flavours like Cherry, Chili, Rum and Raisin plus the usual ones. The chocolates were good so much different to the shop bought ones. They told us all about how its made and the history of chocolate. A very good day I also bought some chocolate to give to Paul and Andrew.

24th
I missed Pilate's because I looked at the clock wrong. I went for a run on my own Petes back is still bad it felt good I ran very easy no problems. A cold day snow is coming. I did the run in just under 26minutes, when I first started the same route took 32 minutes. I wish I could be like this all the time but with RSD its very much up and mostly down. But saying that I think my good times are here for a while I am still in pain but I am coping better may be my body is more used to it now.

25th

I feel very unsteady on my feet I feel tired and my joints hurt not too sure if I am getting something or just doing too much. Time will tell. I have bean getting a lot of nose bleeds my nose is still not right from the time I spent in hospital earlier in the year.

2.30am I thought I would just go on the computer to order summer some food, a special offer on line buy one get one free as her food is £15 a bag its a good saving. A five minute job lasted two hours as things went wrong as the site was playing up. Bed at 4.30.

26th

Physio - Wietse did his usual magic I told him about my run he was very pleased and told me to push through the pain to make the RSD realise that the limbs are still there. Wietse laid down the rules I am not to run in snow or ice or on rough ground or hills. I ran without my ACTIVE ANKLE support, I just forgot to put it on. It helps to keeps my foot in the right place so I do not go over on it. My foot reacted to start with, but then was fine the next day. The more normal things I do the better my body hopefully will become. I will fight this RSD to the end.

27th

First snow of the winter at just gone midnight. Summer was not too sure what had happened but she rolled in it and jumped around she loved it and did not mind the cold one bit in fact I had a job to get her to come inside. There is a lot of snow still to come so its a good job she likes it.
My joints hurt more than they did specially when I am sat.

29th

We have had a lot more snow its looks very white and clean it lights up the garden at night very pretty. Summer is still running round like a mad dog and prefers to be out side but she does get very mucky. She looks cream coloured against the snow. Last nights sleep was in very short bursts.

30th

I am at the Doctors again to update tablets and speak about any problems I have. I told him about my nose bleeds. I am to use some antibiotic cream. My nose inside is very sore and bleeds a lot. I have had a few problems after forgetting to take my tablets at night, very very cold shaking sick feeling,bad head and seeing things. I have bean taking a lot of other tablets so I am not in as much pain, and my body did not ask for them. The Doctor said its addiction to the morphine. There might be a problem with withdrawal when I come off it. I am not too worried as I have done it be for but had to restart them because of the extra pain.
Tommy-Lee arm is set in the right place he has had a new lighter weight plaster put on his arm now it is straight. with no sling. He is a very brave boy.

The snow is now very deep and a lot of the town is shutting down. School are closing. Britain can not cope with snow at all. Its a good job we do not get as much as some other countries.

Well that about it I will finish with some pictures of Summer.

Hello its me

My new Tshirt.

The back view- very smart.

I love my food.

Can I have a lick?

Her teeth are very sharp.

Could I get a job as a secretary?

Toilet training going well.

I am not called Summer Snow for no reason - I love the snow.

If it gets any deeper I will be in trouble.

She has grown a lot and is a hand full at times. She is just about house trained and does a few commands like sit and drop. She does high fives. Andrew taught her to do that

All the best I hope every one is as good as they can be.
Love Gill.

POSH OCTOBER

2010-10-26T15:52:00.046+01:00

October 1st

Physio Wietse is back to his usual mad self and feeling a lot better. He put needles in difference places this time. Side of my neck and centre of my head. I asked him about what the dentist mentioned about my teeth and gums hurting and was there a link to RSD. He said he had not heard of any facts but he would look into it.Wietse removed the needles. I showed him pictures of Summer he loved her.

Lindsay and the boys have a colds so I have the weekend to my self.

4th

A lot of pain and spasms in the night my legs and right my right knee is hot and swollen my foot burnt like fire. I also have a lot of pain in my RSD foot. I am putting the bed cradle back on tonight to see if that helps. As you can imagine I'm getting a lot less sleep.

6th

The bed cradle helped a little. My knee does not hurt as much as it did. At Pilates I did a lot of difference moves, a few on the roller which I quite like. This session went very well. I am pleased. I feel that my balance has improved also I think I am beginning to tone up a bit, but as some days its too painful to do much exercise.

7th

I had a bit of a fall, Summer got under my feet, I have hurt my ankle its very swollen and bruised. I think I might have sprained it. The pain is bad, its physio tomorrow so I will ask Wietse to have a look at it unless it gets worse then I will go to the hospital to have it checked out.

8th

I have bean waking up very cold with pain from my knees down.

Physio -Wietse had to put in longer needles, its all he had, they hurt a lot more especially the ones in my neck he tweaked them a bit so they calmed down. He looked at my ankle he said its a sprain but only a slight one after a gentle massage it felt a lot better. As I was leaving Michelle spotted a needle Wietse had missed she said it looked like an aerial. They both laughed.

9th

Today is the running clubs Ducks and Drakes run a ten mile one well all most and a five mile race. I went with Paul to marshal, I was going to do the drinks but my hands were not too good I did not know if I could do it without dropping the cups, so I told them which way to run. A lot of people would have said that was not a good idea but no one went the wrong way. When I was a committed runner I used to get lost a lot. The race went very well but the numbers were down on last years figures. The ones that did take part seemed to enjoy it. The chairman had a small stroke a few weeks ago, so Roz took over his job and did it very well with help of course from the other members. Well done to everyone.

10th

Paul and I are going into town to get some posh clothes for a British Gas awards dinner for forty years service. Paul got a dress suit plus shirt and tie. I got a dress and shoes , shoes with a heel these will not be on very long I usually where trainers or wedge heels as these do not hurt me. I can walk in them and so long as my foot does not swell up I will be fine.

Today I am very tired with a lot of pain . My daughter Lindsay and her boys are coming for tea she will help me though. Tea went very well and the boys were very good. They played a lot with Summer as they did not see her last week, they all thought she had grown a lot.

At the end of the day I was exhausted. You think I would sleep better but no.

10th

B12 injection today this one was not too bad, my arm is a little sore.

Helen my hair dresser is cutting and colouring my hair so I will be able to catch up on all her news. I feel very worn out and in a bit of pain. For a few days I have had a sore gunky throat at times very dry and raspy. My temperature changes are still erratic and uncontrollable. No run this week as Pete has hurt his toe, I will probably go on my own at the end of the week if I feel able.

14th

Physio-Much the same as last week with the needles. Wietse massaged my sprained foot and said it felt a lot better, I agreed with him it did to me. Not as much pain, he told me I had still to be very careful when I run on it as I could easily go over on it as its still unstable. He went on to massage my RSD foot which surprisingly was very painful around the ankle I think because my knee has bean so bad that it went unnoticed, but it did quite well about five minutes before it went into spasm. Wietse said when I want I can add a further run, the same as I do now about thirty minutes. That's good news. My knee is not really any better very swollen.

On the way home on the bus I had a sort of a black out, one minute I was at a certain point on the route then I had missed my stop I could not remember any thing from that point. I could have fallen asleep but it did not feel like that.

15/16th

Today Paul and I are going to a place near Windsor called Thatcham we are staying at the Regency Park Hotel, its a very long way so I do not know how I will cope with the traveling. We are heading there for Paul's award dinner as mentioned earlier. The journey was not good a lot of pain and discomfort. By the time we arrived I was in a lot of pain even though we had two stops.

The hotel was very nice and we got a very large room. There was a box of chocolates on the table, very nice. After a lay down I felt a bit better but still in pain. I had taken IBRUPROFEN and DIHYDROCODEINE to help but it had not done much good. I decided to take OROMORPH this usually works. Time went and it was time to go down for the meal, and to meet the others, about sixty all getting twenty five years service awards or like Paul forty years.

All the award receivers got a bottle of good champagne and the ladies got a flower arrangement. The night was very good we had our picture drawn by a very nice man who was asking me about what condition I had got as he could see I was in pain. That night I took a lot of tablets and OROMORPH. The pain did not want to go. The RSD had got upset. Paul played on the roulette table he used my money as well as his own. I was very high by now. We had bean given some play money. Not before time, for me anyway, it was over and time to go back to the room, a shame as RSD spoilt a good night but I did enjoy most of it.

The journey home was not as bad. We had a stop at a car museum with old cars and famous ones like James Bond Cars, Lady Penelope from Thunderbirds. A Rolls Royce just to mention a few. I enjoyed it a lot I saw lots of old cars that my Dad used to have, he had lots of cars in his time. Another stop later on, then we were home I felt very stiff and in some pain not as much as be for though. I had taken probably four times more tablets I than normally do.

17th

Today I went for a run on my own the same route as be for. I struggled a bit going there it was very cold and windy I think the cold air got to me. Once I got over this I was fine the run back was a lot better. I think I did very well.

19th

A lot of pain in my arms today, the pain in my knee is worse than it was.

I went to the Crematorium. to see my Mum ,Dad and brothers plots. Six years have passed since my parents died they say time heals but at this moment that is not happening I miss them more than I did. Little things like telling them about my day or what the grandchildren have done, silly things a lot of the time, things that made my Mum laugh.I miss Sandy my little dog so much, Summer has helped but she is not Sandy.

Tonight I used a cushion specially for veins in the legs I think it helped or may be I just had a good night.

20th

Pilates went well to a point, my hip and shoulder joints kept coming out there place.

This not a good week regarding pain its out to get me. Everywhere very sensitive,when people touch me I nearly jump out my skin. I have taken a lot of extra tablets and MORPHINE.

21st

Physio- Wietse will have to do magic today I think. Usual needles no massage. He said try cold and hot compresses to my knee to see if that will help. I told him how I had bean feeling very down and negative towards the RSD he said its only natural to feel like this, he said I am doing very well. Try not to let it get to you. I asked him about running keep it up as much as you can beat the RSD in to giving up. The more RSD is reminded that there is a limb there, the more natural the brain will act or that is the theory.

23rd

Wayne is here for the weekend, but today I have a violent headache with shooting pain from my neck, I think all the extra tablets etc I have taken have not helped. Its a real killer. My knee is still playing up as well. Lindsay and her boys are also here so there's no chance of much quite time. I have bean using a lot of BIOFREZZE, IBUPROFEN GEL AND DIFFLAM cream. In fact any thing that will help a little and give me a bit of pain relief, still taking a lot of extra tablets.

24th

My head pain is a lot better. I am cooking tea for seven of us tonight. Lindsay will help. Wayne loves my roast dinners. The meal went very good and every body enjoyed it.My knee is very swollen and the typical RSD colour from my foot to the knee. This verifies the RSD has spread, not that I needed much telling. Even Summer touching my knee is painful. The day was good despite the extra pain.

25th

Wayne is going back home to day its bean so nice to have him here a gain. I have bought a laptop off him this is what I am doing my blog on. I can stay down stairs with Summer in stead of using the computer up stairs. I am catching up with some gardening as a lot of things have bean affected by frost.

Summer is doing very well she has settled in like she has always bean here. She has started digging the lawn and is mostly covered in soil. a very white dog is now very black but does she care, not a bit. She prefers to be outside even if its raining. Anything that is at her level becomes hers and you have to chase her to get it back. She has grown a lot and is doing well with her toilet training. She has had her first health check and her first injections. Every thing was fine, another few weeks and she will be able to go out on walks.

27th

Pilates- Today we did a lot of work on the rollers and balls, sitting and rolling, balance and coordination work, it was quite hard to get it all to work but I did. Quite a good session.

A run with Pete that was a good run no problem with breathing a lot of pain in my knee. Pete was worried as I was limping more but I said ignore it and it might go a way.

All in all a better day but still pain. Mark at the running club used to say NO PAIN NO GAIN may be this works with RSD. I certainly have put the work in. I think this is why I am still doing a lot of the things I used to do. I have not let the RSD win. I certainly hope I never will.

28th

Today I have gone with Lindsay, my daughter, to look at a house she is moving into. Andrew my son and Lindsays boys went as well. The house is very nice a lot bigger than her current house. The kitchen it is being done up at the moment but will be ready soon. The boys were very excited as it has got a loft room which may become there play room. The garden backs on to the park they go to as well. I am very pleased for her. All being well they will move in three weeks time.

29th

Physio- I told Wietse what a bad week I had, he asked me about my running I told him Pete was a bit worried as I was limping badly I said I told him not to worry as I was high on MORPHINE plus other tablets which I had taken just to get though the day. Pete was worried to say the least but I told him it was fine as I have taken a lot more in the past. I told Wietse I am convinced that my knee has RSD as all the signs are there such as going purple, shiny, sensitive a lot of the time and did I mention the PAIN. Wietse said keep up the good work and may be it will calm down a little with time.

30th

Not a good day I had bean up a lot of the night with stomach pain and woke to a blinding headache and very dizzy. I was unable to stand so had to go back to bed where I spent most of the day. My head throbed and I had a weird feeling in my stomach, not really sick but strange. Everywhere hurts. Not a good day.

Well thats my month gone again. Quite a mixed up one, some good some not as good but I am still writing so my brain must still work alright - well most of the time.
Hope things are better for you all.

Love Gill.

Autumn and Summer

2010-09-29T21:27:00.031+01:00

1st September

Today I am at a different Pilate's group run by the same teacher as I lost my place at the other one as was ill for so long. This one is a mixed ability group like I was in before and I enjoyed it a lot. I had forgotten how to a few moves do but with Joannes guidance I was soon doing them right, it was nice to be back to some normality again if that's possible.

2nd

Physio - The usual needles, Wietse felt my neck and shoulders and said they felt looser than as they have bean. I agreed that they have bean a lot better. He felt my knee which has not bean too good he said there is some deep muscle damage behind the knee. When he pressed it it really hurt he went on to give it a good massage which was very pain full. He said that should improve things I said I do hope so as it has bean bad.
On the way home it felt worse and kept throbbing but Wietse usually makes it better so I had good faith in him.

5th

Today we are going to look at some Westie pups. We have decided to get another dog as the house seems empty with out little Sandy; a decision I am still not sure is right but I feel so lost. A hard day with lots of tears. When I looked into the mothers eyes, she just gave me a look just like Sandy used to.
The pups are lovely so cute. We have decided to get a puppy a little girl, which will be ready at the end of the month.

Our choice of puppy

Puppy's mum, Snow Badger of Hempdyke.

7th

I am having a LOT of pain today knees wrists. The pain is worst when I am sat if I keep moving it hurts less. I gave in and took a lot of OROMORPH it took the edge off, but still bothered me a lot.

8th

Pilates again I did a lot better this time even managing one called windmills, where your arms and legs go in opposite directions. It is hard to do when my body is not in sync with its self. I was pleased with myself for the first time in ages I feel I am getting some where. Where that is nobody knows.

My grandsons fourth Birthday Tommy-Lee. Paul, Andrew and I went to take his presents we got him a Ben Ten quilt, blanket/fleece, Peppa Pig sticker book and DVDs and some sweets. We also got Jay-Jay his older brother a blanket/fleece so they did not fall out over it. They both loved them.

9th

Physio again. This time my neck and shoulders are very tight and painful I have bean getting head aches this is where he thinks they are coming from. He looked again at my knee again which is not any better. He suggests I go to see my Doctor which hopefully I will do tomorrow.
I do not feel right today more tired than usual and hot and cold may be I have got a bug or some thing .

10th
A rough night with pain, a lot of pain relief taken, too much. Went to see Doctor he thinks my knee is RSD spreading again. I think I already knew this but was hoping it was something else not RSD related. He has given me cream to help with the pain DIFFLAM. This was not a good day. Another set back but I can overcome it. I still feel not right my doctor thinks it might be sleep deprevation and exhaustion it is not helped by all the extra pain relief I have taken just to get thought the day. There are also a lot of bugs going round as well. I could have picked up one of them. I went home to bed as I felt so bad I did manage to sleep a bit as well. spent the rest of the day there.

15th

I now feel a lot better if not a bit week. I feel very down I can not seem to shake the feeling off.
Pilates again I am really getting good at this, I've managed most of the moves but my knee was very sore.

17th

Physio - talked with Wietse about my knee he was thinking the same as the doctor, but not to take it too hard as with all the rest of my RSD it flares up and goes down again and it will do its own thing, good and bad days.

18th

Wayne is here for the weekend to give Tommy-Lee his Birthday present from Florida a tea shirt with his name on it wishing him happy birthday. He loved it as not to be left out he got Jay-Jay his brother a towel. A Micky mouse figure for both of them. Its nice to see Wayne again.

I watched the great North run the best bits and cried all the way through it. I have run it twice so I was running with them. Maybe one day it might happen. This time last year I was not running at all now I can manage a very short one of half an hour on a good day so all is not lost yet.

20th

In town today I slipped off a kerb and started my foot hurting a lot. Later on that day I dropped my Jelly Baby mug that Andrew got me as a present and it broke. I cried. I loved that mug. My hand just gave way. Not a good day.

21st

My hand is swollen and bruised I think I may have sprained it as it hurts a lot. I some times wonder how much pain I would be in if I did not take all the pain killers I do, its a thought that bothers me. Today I got Paul a reclining chair for his birthday on Sunday. An electric one its very nice I hope he likes it.

22nd

Pilate's went well. Another good run with Pete a very warm one my knee was painful to start with then settled down a bit a good day.

24th

No physio Wietse is ill, get better soon. I cleaned up down stairs and was very tired so in the afternoon had a lay down in my chair (recliner). I felt much better after wards. My hand is not as sore now and I am able to move it more.

25th

SUMMER IS HERE

Car journey home.

First time on grass.

Her new little basket.

"Action-Pup"
In the Action man tent I made for Jay-Jay and Tommy-Lee.

We picked up are little pup. We are calling her Summer, her pedigree name is Helmictican Summer Snow. She is very cute and has grown a little bit since last time we saw her.
The ride home was good, she is very at home in the car. She sat on Andrews knee and kept giving him kisses. When we got her home she ate her food and seemed very settled. The night was also good. I feel a bit better about her now she is here. I think she will help me a lot. I can not replace Sandy or the love I had for her but I think I have more love to give to this little one

26th

I fell down the stairs and hurt my elbows, wrist again and back. I just lost my balance I think, it shook me up a lot but it could have bean worse. Paul's Birthday He had already got his chair which he loves I made him a cake plus he got other presents from the family a good day.

27th

I ache a lot with the fall and I am bruised and grazed on my elbows and back. Summer is a little live wire, gaining more confidence every day. She is eating and sleeping well.

29th

Pilates went well. I am having a lot of spasms all over my body and my muscles are tight. I have had a head ache for a few days may be its lack of physio. My temperature is all over the place, hot and sweating, then changing to ice cold. This did improve but has started again. A lot of joint pain late at night not able to get free of pain.

30th

Dentist I was suppose to have a filling but the dentist took an x-ray and said the tooth was not as bad as she thought so I got a way without one its a bit inflamed. I have bean using sensodyne tooth paste I sure it has helped. I dropped my other Jelly Baby mug the one my daughter got me the same as be for it just dropped out my hand.

My run with Pete went well I got round the route with out stopping again about half an hour may be less this . I was pleased with the way I ran. I will fight this RSD with all I have got even though it has more than likely spread.

Well that's about all for now its bean a mixed month. The best was getting Summer.
Hope you are all as well as you can be and fighting the dreaded RSD.
Good luck and best wishes Gill.

Hunsanton and Halifax

2010-09-01T20:11:00.039+01:00

August 2nd

Paul and I are going away for a few days. We intended to go to Wales, but as I have not bean too good, we decided to go to Hunsanton we went there once to look at a electric three wheeler bike, and I liked what I saw. It is so quiet and peaceful not commercial like a lot of seaside towns.
When we arrived we had not booked anywhere as we did not know where we were going till that morning. The bed and breakfast we chose was very nice, the owners very friendly and the place very comfortable.

They even let me watch DVDs in the lounge late at night and early morning, the breakfast was cooked to our liking, very nice, it just about filled me up most of the day with only a light snack at dinner.

The bed and breakfast where we stayed.

One day was spent looking round Hunstaton and the close by villages. A lot were very pretty and so quite. These are some of the pictures we took along the beach.

We visited a lavender farm I got a lot of cuttings, you was suppose to buy them but I just took a few pieces from the plants. They sold a lot of organic foods we bought some flour and Paul bought some cider and beer.

We also went in to Kings Lynn a shopping town near by. We walked round a lot of the shops, too many - I was hurting and my body was getting very tight. We decided to call it a day and went back to the bed and breakfast. After a rest we went for a meal which was very good and a walk along the beach then back to the room .

The only rain we had was during the night or late evening. The few days we had were very good and I enjoyed them. Soon it was time for home with a stop and sandwiches on the way. I can not travel for long distances with out pain so we have to stop a lot. We arrived home but I was in a lot of pain from the extra walking and traveling but nevermind Wietse will sort me out tomorrow.

6th

Physio I think I need it. Wietse put in the usual needles we talked then after the needles came out he massaged my very tight neck and shoulders. He said there were very tight and stiff as he pulled and pressed the pain was quite bad then suddenly something sort of jumped and I felt instantly a lot better, if not still very sore. He continued to massage more I could feel them getting less tight. After he had finished he looked me straight in the eye and said how does that feel, or do I need to ask I said no my face said it all. I know I will feel the benefit over the next few days.

8th

Today I am up early 7am a very short night, bed at 4am as Paul and I decided to do a car boot at the local foot ball club Lincoln City. When we were there last there were loads of stalls so we though it would be a good place. WRONG there was only one more stall there as we got there early we thought there would be more people turning up we were very wrong just the two of us and they went at ten o'clock. We picked the wrong venue, next time we are going else where but we still made ten pounds about and did not pay for the stall. The man we spoke too at the grounds said it was though lack of adverting and another one opening up quite close bye. Next time we are going to that one.

10th

Today my right hand RSD side is dropping things like the kettle lucky for me the water was cold. My fingers are turning white, this usually happens in the winter when my hands get very cold caused by RAYNARD'S but its very warm at the moment so I am unsure what is going on. I think maybe its the RSD spreading, as I am getting some signs of this, burning pain, tingling and some times hyper-sensitive. I am getting a lot of spasms in my right leg and sometimes left leg mostly at night.

My bite that got infected has now improved a lot and is no longer infected but another bite I got is. I am not going to the Doctors at this time as its not as bad as the last bite. RSD must taste good. My right eye is very red and sore that seems to be infected also. I think my body is giving up or going bad. My throat is also sore and red. This could be from overdoing things from the Hunstanton trip

15th

Another car boot this time lots of stalls we made about fifty pounds this time and some things we cold have sold more than once like a little monkey/micro bike. A lot better day but very tired I was up about six o'clock but it was worth it. Had a lay down and a little sleep in the afternoon.

17th

First go on the strider since I broke my ribs. It felt alright, even though I only did ten minutes, its a start. My ribs were alright. I am still having problems with my fingers. They are reacting to hot and cold things as well as pressure from holding things like knives or bags. Still getting lots of spasms. My eye has improved and is not as red also the bite has gone down. I have now got a cough but not too bad. My knee has bean giving me trouble as well it feels like its on back to front and keeps swelling up.

18th

Today I am going for a run with Pete. It is the first since I did my ribs so I am expecting it to be hard. Both because of my knee and because of lack of exercise over the last few weeks. You may think I am crazy going for a run but I get a lot of pain if I do nothing and not a lot more if I do things so I might as well be happy and do things. The run went well not many stops or too much pain. On the way back it rained very hard but I did not mind as I like running in the rain so did Pete. I enjoyed it a lot. Thank you Pete.

19th

Physio again today. Wietse did the usual. I asked him about my knee he said there is something not right it could be the way I walk or walking more, and running. He gave it a massage. I am to mention it to the Doctors next time I go. He said he thinks my fingers are a classic case of RAYNARDS even though its not cold it can happen.

21st

My temperature changes are still very much up and down with not a lot of control over them.
I had a bath with Epsom salts as I have bean told it can help with pain. I did not put much in as Wietse told me it can upset the RSD. I don't want that.

23rd

At the Doctors today. I asked him about my knee he thinks it may be bone pain from my osteoporosis as I told him what it felt like. He thinks the same as Wietse about the the way I walk that could be causing it or at the least not helping it. All my tablets are to stay the same for now till I get over the extra pain. He said considering what I have bean though the last six years I am doing very well. Sometimes it does not feel like it though.

24th

I am having my hair cut and coloured. My hair dresser comes to the house and has bean for about five years. So it makes it a lot easier and nicer for me. The finished result looks very good.
My right hand over the last few days has bean quite strange its bean very cold and I keep letting go of things. I have dropped a lot cutlery and plates just seem to slip through my fingers. My fingers on my right hand have bean turning white and purple and are very painful.
But when did my body act normal?

27th-31st

Physio much the same. I am heading off to Halifax for a few days to my oldest son house, to look after his cat while he is on holiday in Disneyland Florida. Wietse has told me not to over do it and to be very careful on the many hills as not to make my knee any worse.

Timmy cat.

Smile.

Did I see a spider? He loves spiders.

The first night I slept fairly well considering its a different bed but it is very quiet here. Timmy cat was very pleased to see me. A neighbour close by has bean looking after him up to now but, nobody was stopping there. I have bean doing lots of walking maybe too much, getting totally lost one day.

A cat that made friends on the day I got lost.

He has got a very unusual face.

My knee is swollen and sore at the moment. The pain does not seam to get any worse when I use it in fact its worse when I put it up on my foot stool. I am doing a few bits for Wayne as its a long day to be doing nothing but not too much as I am meant to be having a rest.

When you get up high you can see for miles the views are very soothing. Just about everywhere there are big hills. I saw quite a few squirrels but could not get a picture of one as they were too fast for me. Well its time to say good bye to Timmy and Halifax for now. While I have bean away Paul ,has just about finished the bedroom decorating off, its looks very nice.

Love Gill.

Sandy - A Tribute - Part Three (Final Part)

2010-08-21T15:20:00.000+01:00

2006

Birthday.

Cake good.

2007

Are you laughing at me.

2008

Sweet Sandy

I got a medal but I didn't run it.

2009

We took her on holiday with us, she usually stays with Aunty Cilla.

Holiday snooze.

Thats better.

Peek a boo.

Smile.

Do not disturb.

Awake.

2010

Cold feet.

Never mind the feet - cold belly.

Her last Birthday 16th - which I missed as I was in hospital.

Sandy "Bum" Pyrah
1994-2010

Words couldn't say how much she'll be missed by so many.
Night, night Sandy.