MAY - KITCHEN AND PETS.

May 1st

All go in the kitchen, tiles are all gone. Just about ready for the plasterer to start.
Not too bad joints are very tender though. The new cooker hood has arrived but is damaged so will have to go back . Not good when things were going well.

2nd

Pilates, not a bad session a few spasms though. I seem to be getting a lot more of them just lately. They are not just at Pilates either, a lot at night time just when I would like to rest.

We have a leak in the roof - a man came to look and will send us a quote.

3rd

Acupuncture. This is going well and helping. But I only have another three sessions left, then I will have to be referred again. Something I know helps and not as expensive as other treatments but is harder to get. This does not make sence but when did the NHS just lately. Hopefully Dr Metta can get me some long term. Another man to look at the roof same as be for sending a quote.

Bed 5am not really tired whole body aches.

4th

The kitchen is being plastered today a lot of mess. He did finish it and it looks a lot better. When we took off the tiles there was big chunks of plaster that came off as well. A bit more than polyfilla could handle. It's raining as well which does not help. A cold day today, when will Summer start. I think we have had enough rain , but still a drought warning.

Paul picked up the new car. He is very pleased with it.

5th

Lindsay is here with the boys and of course Suey dog. Summer and her have bean chasing each other and running in and out the rooms. Great fun for them. I feel really tired head and face pain, still got quite a cough as well, it does not seem to want to go. When I went to bed about 5am there was a sharp frost very cold.

7th

We have ordered the wall paper for the kitchen, a pale tile effect I think it will look very nice. Not a good day joints are bad whole body aches. Spasms as well. I feel very cold as well. Cleaned up a little bit after the plaster dust had settled. The sun came out today but not for long. Rain again.

8th

A very bad night one of the worst for a while very bad spasms. It started in my right hip I stretched to try to get rid of it and quickly spread down both legs. The pain was bad then my right leg started violently shaking on the bed with so much force that it woke Paul up and he is no light sleeper. After what seemed a long time my body relaxed and the spasm went or at least lessened. I think I am getting more of these because of the colder weather lately, doing extra in the kitchen and not taking muscle relaxants.

We are out for the day, a rest from the kitchen. Looking for a fridge. We need one a certain size so the microwave will still fit on the top under the new high cupboards. We have seen one on the Internet and a shop at Gainsborough has them. I found it very hard to walk as my legs were so stiff and tight and both ice cold. The rest of my body was coming out in sympathy as well. I even said I wished I had my scooter with me.

As it was the shop did not stock the fridge and could only order it the same as us from the Internet. We had some dinner a a very nice little place that just about every thing they served was home made. I had lasagna very nice. Paul had a big all day breakfast also very nice.
A long day I was pleased to get home. The car journey still causes me more pain.

9th

Pilates-Not a good session spasms and pain . Did what I could. I think RSD must get the prize for the most changing day to day symptoms. I feel drained and cold . Legs are heavy and painful.

10th

Acupuncture - This is the last one till June 14th. This has bean going well and I have not learnt too much from the talks but it nice when I can pass on things that help others. This is a fibomyalgia clinic so no one has got RSD no surprise there. I had a nose bleed while I was there. These still have not cleared up from when I was in hospital from over two years ago.

I feel quite sick still bad head. Had a lay down when I got home. I was lucky as I got a lift home. I took extra MORPHINE for the extra pain. This helps, but makes me itch a lot.

12th

Lindsay is here again with the boys. I took them to the park as we had a very rare warm day. This is the first time I have taken them on my own it was nice. I sat on the grass while they played. The sun was very hot. I could feel it burning though my jumper. A good day, still in a lot of pain more than usual. Extra MORPHINE again I have a lot of scratches all over my body .

13th

Guess what another nice sunny day may be a little colder. The common is drying out but still very wet in places which Summer seems to love rolling about in . She is a mucky pup. My foot keeps going into spasms painful. When this happens I try to walk it off . Sometimes it works sometimes not. RSD does not follow any pattern at all. We are wallpapering the kitchen today.

14th

Spoke to Dr Metta he thinks I have a sinus infection that would explain a lot. Antibiotics DOXYCYLINE two to start with then one a day. I hope this works I am fed up with the bad heads and under water feeling I am getting. He also thinks I should try BACLOFEN again as this should help with the spasms and pain . I am to take one tablet at night. I said I would give it a try. I came off them after the hospital upped the dose and paralysed me for a day. I was scared of taking them again.

Found out today that one of my older friends has died. Bad enough yes, but this happened over three weeks ago. He went in to hospital and died the next day. He lived in warden controlled place and I noticed that the curtains were not up also his things were not on the windowsill. I went to ask and was told he had gone. I said I thought I was down as a contact but was not according to them. The funeral had bean held probably with no one there and all his things had gone. I was too upset to ask any more. They said they did not put it in the paper because he had no family or friends . He had a lot of friends. Friends, like me, that would have wanted to say good bye to him. Poor John I feel that I have let him down. I last saw him in March about Easter time. I will go back soon and ask more details .

15th

I still feel shocked and drained after yesterdays news.

Paul, my brother and nephew are starting the kitchen cupboards fitting. Everything is going well so far. I took my first BACLOFEN last night no problems .

16th

Pilates - No major problems .

Paul and I went look for a fridge to go under the work top, Paul thought it would look better and let us have a longer work top.. I said it would be too small. They were too small.

18th

The kitchen is getting there. I have no water no sink and the cooker is in the bathroom. Apart from that things are going very well most of the fitting should be done today. We have had a few takeaways this week as it bean hard to do any thing in the kitchen. Paul is not complaining either.

19th

I have got Jay-Jay and Tommy-Lee for some of the day. They have just got back from Spain again. A short break. I decided to take them into town. This is some I don't normally do but they are getting bigger now so its easier but more expensive. They had a new lunchbox each and a few other bits. An ice cream that there mum gave them money for. Not too bad pain wise but very tired after it all.

20th

A lot of joint and muscle pain. I have bean doing more so I think that's why. I also have bean getting a lot more burning in my legs. This is extra to the burning I usually get though out my body. I know a lot of the time I do too much but when things are going well, I like to do as much normal things as possible and pay for it big time like today..

About 2am I was in the bath and Ginge the cat was crying at the door, Summer looked at me as though to say, let him in. I said no I have just got in the bath. After a while he went away after Summer started crying as well, they are great friends.
A bit later on I heard him fighting he does this a lot often, he has bits out his ears and scars around his face.

Around 4am he was pawing the door and crying this time, probably battered and sore after his fighting. I let him in, Summer went straight to him as to check him over. He looked alright though he must have won this fight. I would not mind but he is NOT our cat he lives two doors away but likes to spend a lot of time with us. Curling up in the sun on the decking.

So does his brother Tabby but quite as friendly with Summer. In fact Tabby hits Summer then Ginge hits him. When he gets the chance and not get caught he likes to sleep in Summers basket. She loves him so much that she is willing to lay at the side of it.


Fast asleep in Summers basket not for the first time either.

Ginge and Tabby on the fence where they sit and watch the world go by.
They both have there spots, and if Tabby gets in Ginge's spot he will knock him off even though is a lot bigger. Ginge is the boss.
Ginge in next doors garden. He's hardly ever in his own.

I cut my finger earlier on a tin can lid and it bled a lot. This started again early morning. I also had quite a bad nose bleed. I finally got to bed at 6 Am. A very full night.

22nd

Quite a lot of pain the last few days taking extra tablets IBRUES and HYDOCODINE. This has helped a little. Every part of me is very tight and painful.

Went to see my friend who also is my hairdresser, its her birthday today this is the first time I have bean to her flat. I was very surprised how big it was. she had said in the past it was big but I did not realise how big. She has two cats very fluffy and big. A very warm day, hopefully summer is here to stay at last.

23rd

Pilates, not too bad. Jo showed me some different moves as some were just impossible for me to do today. Just lately my coordination and balance has bean off. So the moves where my legs and arm go in different directions was not going to happen today. I think I did alright though.

The infection in my sinuses has not fully gone but much improved. The rest I think my body can cope with. My legs have bean very stiff in the mornings so have my neck and shoulders. This improves as the day goes on. I am still taking extra tablets to help with the pain.

I know some of it stems from the work in the kitchen and extra walking in town as I have bean going in to get Jay-Jay and Tommy-Lee the Lego toys from the Sun newspaper. But as RSD sufferers know they does not have to be a reason for extra pain.

25th

The kitchen is just about done. Very nice it looks too. The fridge arrived, it looks very smart.

Yesterday I hit my elbow on the door frame and it really hurts its swollen up and very red. I am wondering if I have cracked the bone. BACLOFEN is helping with the night time spasms I still get them but not as bad. I am still just taking the one at bed time. Pain else where down a little bit.

Another very warm day here about 25c. Halifax and Amsterdam, where my sons live, are both warmer than us. So nice to have warm weather for a change. Good to leave the coats at home.

26th

Got the boys here, Jay-Jay and Tommy-Lee, for the afternoon. Gave them the Lego toys they were very excited I think it does not matter how old you are most children and a lot of adults like Lego. They had fun building some up. Later on we went to the park and on to the common. They had a good time playing and running around. When they went home they were very tired.

27th

A day out at Ingoldmells, a local seaside town with Paul. Very warm again with a bit of sea breeze which is normal for the east coast. Fair journey going, roads are a bit bumpy and a few of the sea roads have speed bumps, these hurt. Not too bad a day with pain, elbow still very sore but I think is improving still tender to the touch. A very enjoyable day. Tired but happy it was good to have a day out. Also Summer caught up on her sleep while we was away. She was full of life and mischief when we returned.

28th

I gave Summer a bath she looks so sweet and clean, I suspect she will not be clean for very long, As a few days before she had rolled in horse muck, it was very fresh and smelled awful.

Summer - I wont be clean for long.

Paul and I are sorting out the shed and the loft above it very warm work and dusty too. We are getting rid of a few things, the things that you save just in case, then never use.

Pain levels are very much up and down, mostly up. The pain starts in one place and then everywhere hurts. Temperature changes are better on the whole but still all over the place at times. I feel cold a lot of the time which also increases pain levels. At least the night time spasms are better.

29th

Paul and I are in town getting the last few bits for the kitchen.




As you can see not the biggest kitchen but I think it looks really good.

A very warm day and humid I think a change of weather is on the way. Pain wise its not too good. My shoulders are very tight and trying to spasm up. Pain in my right foot. When I get a lot of pain here it seems to start pain everywhere. Strange, this is where the RSD first started in July. 2004 nearly eight years ago.

Also another thing I want to mention. House, the TV program that has bean going for eight years also, has just shown the last ever one. I can't believe there will be no more House. Sad. The first episode was shown on July 13th 2004 the same day I fell.

31st

A change today, its raining but it is still warm. A shame really as I was going to help with next doors garden. I like gardening a lot as I much prefer to be outside.
Not as stiff today so far (1pm) . I have a shooting pain on and off in my hip, like a nerve or something. My knees are a bit swollen and sore. Elbow just about right now still a bit tender.


That's about it for this month. Bean quite a painful one. This month I have had all the pains that RSD and FIBROMYALGIA can think up. I think this proves I need Acupuncture. My Doctor is trying to get me some more. Did you know if I was in prison I would get Acupuncture as a standard treatment and all on the NHS . May be I should do some thing to get in there...

It makes you laugh and cry at the same time I struggle to get any treatment now. I suppose that's what you get when you get a less common condition.

I hope things are good with you all and you have enjoyed some of this lovely weather. Bye till next time. Take care in what ever you do.
Love Gill.


APRIL-MY BODY'S FOOLING WITH ME

April 1st

A cold day sharp frost. A better day but spasms still keep coming. Every muscle thoughout my body is very tight. I am now on tablet five of ZANAFLEX this made me a bit unsteady on my feet and dizzy but on the whole the side affects are getting less. I think. Temperature changes are bad, mostly ice cold, so cold my legs hurt. I think this is why I get a lot of spasms but what can I do.

I have renewed the subscription for my website so I will be writing for another year at least.

3rd

Paul and I have bean looking at kitchens as we are getting a new one. This one we have had eighteen years. We have chosen one we both like. We actually agreed on one.
My neck and shoulders are very tight and painful. At least my knees are not as bad. Still feel very cold even though I am dressed for winter.

4th

A very cold day looks more like snow. Wayne has had seven inches in Halifax over night. Took him ages to get into work.

Pilates was very painful tight all over and spasms as well. I tried but failed to do the moves very well.
I am getting ringing in my ears again and dizzy on getting up. Somebody asked me how I felt today I said tired as usual head ache and pain just about every where. They said just a normal day then!! I have forgotten what a pain free day feels like. Even on my best days I still have pain.

Quite busy later cleaning the cooker I thought it might help loosen my body off a bit.

7th

Oh my head a real pounding pain, probably from lack of sleep I did not go to bed till 6 am. I was in a lot of pain so it was not worth going even then after a lot of extra tablets the pain would not go. I have starting taking an extra ZANAFLEX one in the morning as well as night time like before.
They have had little effect as yet on my muscles. This tablet made my eyes feel like they were six foot in front of me. Lindsay and the boys are here Suey as well ( Lindsay's dog.)

Summer laid on top of Suey
Suey some times gets fed up of Summer, notice the look she is giving her


Lindsay does not feel too good either we both feel a little delicate. Jay-Jay and Tommy-Lee were quite noisy today but they are young boys after all. I made Jay-Jays birthday cake it was his birthday a few weeks ago ,6th March but he got another cake. So he said he would have one made later.,

A Doctor Who cake.


Jay-Jay with his cake

Blow-- Jay-Jay, and Tommy-Lee.


My head ache finally went at around eight o'clock Only to return later. A lot more spasms in my legs. A weird feeling like sand or water running though them. I thought the ZANAFLEX were suppose to help this.

9th

A far away feeling walking on the common I do not feel with it at all. Balance all over the place. As the day went on felt better even sorted out a few cupboards. My friend is now home from hospital better than be for but not her self yet. My thoughts are with her. I will go and see her when she is ready for visitors.

10th

Today Summer is going for her trim and wash. A different place this time Posh Dogz. This place was recommended by a friend.

Looking very long haired.
Summer before trim.

We picked her up later and was pleased with the result. She looked so clean but not for long. She seemed very happy as well. They said she was a very cuddly dog.

Very smart.
After trim and wash. So clean, I will soon change that.


12th

The Zanaflex has upset my stomach, very bloated and sore.

Looking after Jay-Jay and Tommy-Lee as Lindsay is at the hospital for a baby check up. She was soon home and everything is going quite well. She does look better than she has done for a while but her thyroid levels are still not right. She is a bit worried that it will affect the baby but the hospital are keeping a good eye on her.

After a rest we decided to go into town with the boys as a treat. We looked in Mothercare at the travel systems. Tommy brought some toys over for the baby. Lindsay told him that it did not need any yet and to put them back. He said but it has clothes already and it does not need them yet. The lady assistant said he had got a point.

We took them in the pound shop and they were very excited and got lots of things for there money. A gun, a sword walkie talkie set, a hat, a cross bow each and a car each plus a telescope to share. They could hardly wait to get home to try them out.
We went to McDonald's for dinner as like most children they enjoy it, I did too.
We did a lot of walking and was all very tired. I was hurting a lot when we got home, a good day though.
Jay-Jay and Tommy-Lee played with there new things. Running around playing and having fun
tiredness forgotten.

Later on I was in a lot of pain, about an eight, and spasms every where.

Had an email from Wietse he is doing well and so are his cats. I do miss him a lot. He could always cheer me up no matter how down I was. He always made me see the better side of things.

13th

Very bad spasms over night. My right knee is so swollen that I can hardly walk. Every muscle is tight. The ZANAFLEX has not really done any thing to help yet. I am trying to keep walking so my legs don't tighten up any more. This is hard as they keep going into spasms. As it is I can hardly get up the stairs.We have bean in the car a bit today so that did not help. I am taking extra MORPHINE. This has made me feel very dizzy and light headed. My legs is blue typical RSD colour. Ice cold most of the time burning the rest. My shoulders and neck have now joined in as well and feel the same. Took more MORPHINE later this helped a little. By the end of the night my whole body was in pain. About as much as I could handle. Damn this RSD curse.

14th

Wayne my oldest son is here for a few days from Halifax. Lindsay is here with the boys as well.
They got very excited when they saw Wayne.

My leg has improved very slightly I am able to move a little better but my right hip is very sore because of the way I was walking yesterday. I am so pleased but I feel far away because of the MORPHINE. Yes it works but at the cost of zombie like appearance.

I am going to start three ZANAFLEX to see if that will improve the pain and spasms.

15th

Today is a bit better day I long as I am careful my legs seem to be a lot less tight. Cooked a Sunday dinner for Wayne he is not used to having them so really enjoyed it. A nice quiet day just doing a few bits on the computer with Wayne. Later on I felt very tired, more than usual and a bit out of breath. Maybe I am getting a bug or something nasty.


16th

Pain and bad spasms over night for the past few weeks I have had a lot more temperature changes. Go to bed ice cold most places and wake up on fire.

Wayne is going home today. Timmy, his cat, will be pleased to see him. Decided to have a go on the WII to see if that will loosen my tight muscles. I am really fed up with this I have no life just pain if I try to do things that I love or used to do, I just get hammered by the pain and spasms. Later on a lot of knee and right hip pain.

17th

Going with Lindsay to get a travel system for the new baby. Very nice. Just need the baby now not just yet as its not due till October. Went to McDonald's for dinner had a wrap very nice. Pain not as bad, balance not good .

Passed out in the bath sat up, fell face down in the water coughing and spluttering. Woke up instantly. This was after the night time ZANAFLEX tablet. This is a bit scary. I could have bean like Whitney Houston. I am stopping them as so far they have done nothing. Apart from make me feel worse.

18th

Pilates

I tried my best but I feel that I am not getting very far. Jo said I am doing alright but I feel stuck. Some weeks as I have said before are better than others. None of them brilliant. Nice to see the others as there was no class last week.

19th

The big day is here. Up at seven thirty even though I did not go to bed till five thirty. Who needs sleep any way-- ME!! At last I am going to get some ACUPUNCTURE from Goppi. Lindsay had an appointment at the hospital so went the same time as Paul gave us a lift there even though my appointment was over an hour later. Lindsay's thyroid levels are improving. The hospital is quite pleased with her.

Back to Goppi and ACUPUNCTURE . I have to go to a FIBROMYALGIA clinic as this is the only way I can get this treatment. Two others were getting the same as me. They were supposed to be another three people but they did not turn. Did they know some thing I did not?

First there was a talk about FIBROMYALGIA and how and why it affects you. Also PAIN and distractions from the pain. A few exercises no problems with them, more or less the beginner's pilates. I told him I did pilates. He said that would help a lot, especially with the controlled breathing.

We then did a bit of relaxation, I have a big problem relaxing my body just starts jumping and shaking. Also my mind will not switch off. This is why I have trouble sleeping I think.
After the relaxation came the ACUPUNCTURE. I told him last time ( 7th Feb) he did ACUPUNCTURE on me I was very sick and my foot and leg very painful. He put needles in my RSD leg and foot even though I told him Wietse never did this ( tried but not repeated as too painful). This time he listened to me and did not put any in my right leg below the knee. In all I fifteen needles. In very much the same places as Wietse did. I was left to relax while they did there magic - I wish.

The needles were removed no problems this time. We had a few stretches then a bit more talking then home. I am back next week for another session. The other two people were very nice. I think the idea of the clinic is that we help each other and hopefully pass on a few tips. As you would have probably guessed no one there has RSD.

A lot better day than I thought it would be.

20th

Paul is going to Blackpool for the weekend so I will be mostly on my own.

Spoke to Dr Metta, he agrees that I should stop ZANAFLEX straight away. I told him I already had. Spoke about other pain relief. We have decided to wait to see what happens before trying anything else. He is running out of things to give me. DIAZEPAM was one of them but I had a very bad reaction to them once when I was in Hospital. He does not really want to put me on these again. So we will wait and see.

A bit of bad news. My blood tests he did last week have come back not good. My feratin level is very low, five-- this should be for me about twenty for me but can be around hundred. A doctor I saw online , says he doesn't like to see anyone below 50 but also doesn't get alarmed if it is. I think optimal is about 70.

This was good when last taken February second about twenty as I said. That could account for the extra tiredness and shortness of breath. This effects iron levels in blood as the feratin is like a basket to hold the iron, if too low, holes appear and the iron drops through. This could account for the extra tiredness and shortness of breath I am now to take IRON tablets. FERROUS FUMARATE 210 mg three a day. This will affect my stomach big time again. This had just settled after stopping the ZANAFLEX. I am thinking that I must be cursed or had a very bad past life. I have a lot of joint pain today most places.

21st

Not too good to day. Woke with a bad head very sharp nerve pain. I feel like I am getting something, something not nice.

Got the boys with me to day as Lindsay is packing and sorting things out in the house. They are very noisy. Not doing my head any good at all. Lindsay finally gets here she is tired but feels quite good. She is beginning to show now and getting a little baby belly.

My friend Russ is also here for the weekend. So nice to see him.

23rd

A lot of shoulder and neck pain first off. On Summers walk, pain in knees and elbows as well. Bean out today looking for a new fridge and tiles for the kitchen. We are having a new kitchen fitted soon. We did not find either, fridge or tiles.

I have still got the nerve head pain. This seems not to want to go. After writing this blog the pain in my shoulder and neck has got worse it always does as soon as I move my arm for a while. Things like typing and stirring things always make it worse also Summer just pulling a bit on the lead. I have forgotten what it is like to have no pain.

24th

Not a good day. I feel wrecked. Pain if I move. Pain if I don't. Poor Lindsay phoned from Spain where she is holiday for a few days. She has got she thinks food poisoning. The weather is cold there as well. I hope it picks up for her.

25th

Not a good night spasms just about every where. Coughing as well.

I still went to pilates as I thought if at least my muscles would release a bit. I did not do everything much but on the whole not bad. Jo has lent me a book on magnesium. It makes very interesting reading as most people levels are low. When I have read it I will pass on any information I think will help you all.

Late PM full blown cold I feel bad, extreme sore throat and banging head ache. My body feels like it has upped and left. I would not blame it either.

26th

Acupuncture today again. There was only two of us this week. The session pretty much the same as last week. I asked him about SATIVEX a CANNABIS alternative pain and muscle relaxant spray. . He said its not available in Linconshire as yet. I asked my own Doctor he said the prescription has to come from a specialist. I am thinking of giving this a go as what I have read about it seems good. I know things don't suit every one, But I have tried a lot of tablets and the side effects of some are horrendous.
I have not started taking my iron pills yet as I know they will cause severe constipation.
One tablet for this then another to help the side effects of another. What a life---

28th

Went with Paul to look at a car, a Vauxhall Zafira. He liked it so we bought it picking up next Friday.

I think my cold is beginning to let go. Still bad head and cough throat a little better. My eyes are blood shot and sore. I have bean swigging cough medicine straight out the bottle it says no more than four doses a day. Mines a long day so I am having a bottle a day. Sounds like I am drinking. Not yet any way..

Went to see my friend who was very ill in hospital but has bean home now for a while she is doing very well and making good progress. So nice to see her . All the very best to her and her family. Saw there little dog a westie like Summer for the first time he is a lot bigger dog, so lovely and like Summer very friendly. He could smell Summer and would not leave me alone.

29th

Raining again here. Since the drought warning, it has I think rained every day. Not just a bit- down pours. The common is very wet with large puddles every where. Summer loves the rain and runs straight through the deep ones. As you can imagine she comes back very mucky. Does she mind, not a bit.

Lindsay is here today with the boys they are back from Holiday. Lindsay is brown and recovered from her food poisoning. Very noisy here, Jay-Jay and Tommy-Lee are playing there guitars and singing to Horrid Henry. They are very high on fun. We all had tea Chicken dinner very nice every one enjoyed it . Summer and Suey had some as well.


Well thats about it for another month. I think I can say this has bean one of the worst for a long time, for contious pain and spasms. Bye for now. I hope things are better with you all out there, if not things can only get better I hope.

Love Gill.

SLOW MARCH

March 1st

I received an email from Wietse . He is doing well and his cats are settling in Holland (The Netherlands).
I really miss his conversations and his advice.

Summer had a bath today, turned out she was white under all that muck.

All clean...
... but not for long.


She gets very mucky a lot more than other white dogs. She likes to be scruffy it seems. I have got her a ball just for her walks on the common. She loves chasing after it through the puddles and horse muck. She will not be clean for long.


Summer with her ball.
Having fun.
Tired.


2nd

No physio today as Vel is ill. I could have really done with it as well. My neck is so tight. I have bean getting a lot of head pain shooting from my neck. It feels like some one has got my head in a vice. My balance is not very good either. My temperature changes are bad. I hope Vel feels better very soon.

4th

A lot of wrist and elbow pain, in fact as the day wore on I had pain most places. Sick and dizzy feeling, more so on standing. My knees have swollen up and are very painful. My body is mixed up part hot, part cold; very cold like ice. Despite taking a lot extra pain relief the pain refuses to budge. Oh the joys of RSD. When I have a lot of pain it is better and less painful to keep moving around. When I sit the pain is worse. A lot of this is FIBROMYALGIA I think mixed in with the RSD.


5th

Not a good night PAIN, BURNING and SPASMS. Cleaned up downstairs to try to work off the pain but it did not work. Made my friend a cake for her Birthday. The cake turned out very nice. I made one last week for another friend and she said it was very nice. I hope this one will be as good.

Bed about 5am too much pain to go before.

7th

A bit better night still burning and cold but a little less pain.
Pilates was painful did the best I could, Some times I look around and see how much the others have progressed. I feel like I am stuck at the beginning. RSD has robbed me of so much. I have a very big cold sore on my lip and inside my mouth very sore and painful I think the RSD has picked up on it. Run down I think.

Andrew has bean in a lot of pain also the last few days with toothache. A dentist has diagnosed an infection and he has got antibiotics. I hope it does the trick.

9th

Awake at 7am. The lighter morning are waking me up now even if I have only bean in bed a short while.
A little less pain I think but some days its hard to tell as it starts and stops like a train.

Physio today - A good massage and my neck and shoulders feel a lot better. Vel said as from next week I will be having home visits for awhile - how long he does not know. The new building is mostly finished at a cost of 16 million pounds. But there is not a place for out patients physio at the moment.

10th

I feel very rough this morning sore throat and a bad head ache not the one I have bean getting recently though. All my joints hurt.


Lindsay and the boys are here. We decided to go to the park across the road it was such a nice day neither Lindsay nor I feel too good but at least the boys can run around and have fun. There is a new horse ride there the same type, as when Wayne, Lindsay and Andrew were little. They had a ride on it.

Having fun.

Yee Har ride 'em cowboy.

The park has had most good things taken away, health and safety ruined all the fun..

11th

Doing a few bits in the garden when my body will let me. A lot of spasms everywhere, balance not right, I feel like I have a head cold. Went out for tea to a Chinese restaurant. It was very good but I have little appetite and I feel sick a lot of the time.

Andrew is coming home for a few days to have some dentist work done. So some thing to look forward to at least.

12th

Andrew arrived at about 8pm Paul picked him up from the Airport. He had a good flight.
Summer was very excited lots of high fives and jumping up and down.
Wayne is coming here Wednesday, so all the family will be together again for a few days.

Andrew at the dentist They filled a tooth and ten minutes later it dropped out. He went back but they could not redo it as they was not enough time they said. As the anaesthetic wore off Andrew was in a lot of pain as the nerve was exposed. I rung up and said he was coming back to have it redone, time or not..
After it was refilled they told him the first one was only a temporary one. When he asked why, they said time and cost. Surely it worked out more cost and time in the end. He is back tomorrow for more treatment. I hope this goes better.


14th

Pilates
Fair session still hurts to do a lot of the moves. Told one of my friends is very ill and in Hospital. I feel sick and very sad. I hope she picks up soon.

Wayne has arrived from Halifax. So nice to have him here. Andrew has had his treatment finished now, a tooth on a plate to replace one that came out. The cost of it all £204.

Chinese take away for tea, six adults and two children. Nice to be together again. I did not feel too good though a lot of pain everywhere, really bad head.

15th

In town for a bit of shopping and a new case for Andrew, the airlines have just about destroyed the last one. Had a very nice dinner at Subway. Wayne had to go back home as he had work the next day. A lot of walking, but later on less pain than the day be for. This RSD makes no sense at all.

16th

Vel came and did a massage on my neck and shoulders. I told him how I had bean. I asked him how long he thought these home visits would last. He did not know but hopefully awhile.
He has now got another room. The clinic there for out patients is closed and they are just doing physio for the wards. I don't mind either way so long as I get some treatment.

The Pain Clinic have rung up Three times now to offer this LADIOCAINE INFUSIONS that I did not want as not enough is know as to the effects on the RSD. I do not want it to get any worse than it is. I asked about the ACUPUNCTURE that I was promised in early April, they do not know if I will still get it. I can have an appointment to discuss further treatment thought with the same Doctor that told me I needed STEROIDS for a condition that I did not have. I refused. I already know what works - A
CUPUNCTURE.

17th

A sad day Andrew is going back to Amsterdam but it has bean good. He gave me a teddy for Mothers Day, Best Mum. Very sweet.

Lindsay and the boys are here as well. Andrew set off with Paul to the Airport and we all said our good byes. I don't know when we will see each other again. Its not cheap to come across. Paul is going to see Wayne as Andrew is going from Leeds Airport not too far from Wayne's house. Paul will have a rest there then make the journey back home.

Andrew has arrived safe back in Amsterdam and Paul is back home . Seems very quite here now.

18th

Mothers Day-- I got five cards, one from my son in law with some flowers, He said for his Special (Needs) Mum!!!. Thank you Will.
One each from my three children and one from my grandchildren Jay-Jay and Tommy-lee. I also got the teddy I have already mentioned, a mug and sweets and some money so I was well treated.

19th

Not good today a lot of pain and bad spasms. I have to be careful how I move as the spasms come on at the slightest thing. Balance not good either.

Andrew told me last night that his new tooth plate has broke it lasted less than four days. I have bean in touch with the dentist but will have to wait till the dentist who did the work comes back from holiday in about two weeks. He can still use it but not as well. Not a good bit of work.

21st

Pilates- Not good I feel like every one is improving but me most have gone on to more advanced moves. I still feel like I am stuck at the beginning. Jo said at least I can do some. I just want to be like everyone else. I get frustrated when I can't do want I want to do. I know some times I do too much but that's when I feel my best. As soon as I start to relax or want to rest that's when I get most of the pain. I am in quite a lot of pain and burning today, that does not help. Balance not good light headed. Hopefully I can soon sort out some long term ACUPUNCTURE.

Later on in the day I felt worse the pain and burning did not stop despite taking a lot of pills including higher dose MORPHINE that I had from be for. That just made me itch. I felt more unsteady on my feet, not really any balance at all. slurring my words. I feel like I am on the outside looking in. My head was throbbing. I felt sick, kept burping and lots of PAIN. All my joints have swollen up, my knees are so big so are my elbows. Neck is swollen also. My legs are red hot but feel ice cold to touch. I would normally have a bath and this would help the joints but I dare not because of the burning. Even my teeth hurt.
Later on I was sick. It was early hours of the morning before I felt any better at all.

This is not a new thing this happens a lot. There is so much going on in my body no wonder it breaks down. I worry that the strong drugs I take cover up any things like a virus or pain that my body will not
normally pick up on. A lot of the time I know I should be on higher strength drugs but I am reluctant to take them. If I can get by with out them I will.

RSD messes with my life and does not care.

22nd

A bit better day I am trying to have a normal day what ever that is. Balance is a bit better but not right. I feel like one side of me is going faster than the other. Still burning but itching better, good as skin is still red from yesterday. Headache still there. I wish the vice man would let go (still feels like my head is in a vice). Joints still sore. Had a bath night time and I saw all the scratches and red marks where I had bean scratching from yesterday

Well Physio tomorrow-- Vel will be able to help I am sure.

23rd

Well a bit better day pain still in joints some I did not realise I had. Temperature changes all over the place. Balance not good. Some one on the common asked me If I was drunk. It feels like it sometimes, may be I should drink and compare the difference.

I had a letter from the Pain clinic saying that I had got appointments for ACUPUNCTURE for five sessions starting April 19th. I was very surprised as I was more or less told that I would not be getting it. Hopefully this will help.

Vel came and was a bit surprised at the way I was walking. I brought him up to date from the last few days. He said he would not touch my neck and shoulders at all today, as he thinks that it will make things worse. He massaged my knees both which are still swollen I told him they had gone down a little. We both agreed that the ACUPUNCTURE was working better than the just the massage.

Vel said that this would be the last time he would visit me as a patient. The clinic at Carholme Court where I was going will not be taking patients again. Vel will cover the wards and a few home visits. I will miss him a lot.

I did not think my visits would last long. Now, I have no one. If I had any other conditions I would get lots of help but not with RSD.

Vel is going to write to my Doctor to ask him to send a letter to Pain clinic to keep the ACUPUNCTURE going long term as short term does not have the same
benefit. Also try to get HYDROTHERAPY this was mentioned before but nothing happened.

The last few weeks have bean very difficult and more painful. A lot more spasms. I try to keep going, but it hard. I read on an RSD site, that for some reason, that RSD can make you live longer. But do I want to live longer with RSD?

26th

My head is a bit better but still more body pain than I would like, but what can I do take enough tablets to kill the pain and most likely damage myself as well and block out any function that I have. My whole life revolves round pain. Pain follows pain follows pain..

27th

I am putting bubble wrap around the green house to keep in some of the warmth. Generally on the whole I feel a little better in mind and body. The last six months have bean quite hard with the hospital stay, Wietse going and now Vel. He will leave a big gap.

At least the weather has bean nice more Summer than spring.

Saw Dr Meta told him about everything that had being happening. He said I could of had a virus or infection. That would have made everything worse or just a flair up of RSD. He is putting me on some muscle relaxants, ZANAFLEX hopefully they will help, one a day then increasing slowly up to nine limit. I hope it does not come to taking nine. This is just about the strongest one I can take without being in hospital and monitored. DIASIPAM was mentioned but he said not for me I had them when in hospital and they sent me almost crazy.

He thinks I have become used to BECLOFEN. Instead of increasing it will try a change. I am reluctant to take them after the hospital blunder where they increased them too fast and paralysed me. Went to the chemists to get them and they do not stock them. They should be getting them in tomorrow.

28th

Pilates - Did the best I could without pushing it but better than last week. Getting dressed is hard at the moment and drying after a bath because my arm goes in to spasm when slightly stretched or even just moved some days.

Went to see my brother David and his Wife Bev. Their little dog Shandy died recently. She was 16 years old. I know how they feel after loosing Sandy. I brought back a pram for Lindsay as she is having another baby due October 6th. I have not said anything before because she wanted to wait till the 12 week scan and to be sure the baby was alright. Lindsay has bean quite ill with her THYROID getting out of control. She is starting some more treatment so hopefully things will start to improve.

Got my ZANAFLEX now. Took my first one, very weird side effects, like 3D without the glasses. Faces coming out the television. I had to turn it off not that it made much sense any way. The walls coming in on me, voices all around everything looked so big. A very bad reaction. I dare not stand as I felt like as was in a dream. No, more like a nightmare. Later on the effects passed, after about an hour or more. I went to bed about 4am with no more strange things happening.

29th

I still feel a little strange. Ifs that what one does, think what nine would be like - mind blowing. Night time took the second one not as bad this time but still unreal thing going on. I kept thinking this is not real and was able to cope better.


30th

In town today with Paul another nice day. Did quite a lot of walking.

We took Summer to the vets as for the past week she has bean limping. Not wanting it to get worse we thought it best she went. Once at the vets her leg seemed to improve and she was getting a lot of fuss off the vet. When we said she was limping, she said "really?" When examined she found a sore bit muscular and gave her some anti-inflammatory drops, METACAM. She told us it would have got better on its own but its kinder this way, but not cheaper £30.00. She said to rest her but that's hard as she thinks she is ACTION PUP. We will do our best.

Third tablet not as much side effects. I tried to concentrate on my breathing as much as I could to block out the images. I could hear Wietse's and Vel's voices saying breathe Gill breathe (they both said this to me when I held my breath because of pain being inflicted though physio).


Well as you can see the past month has not bean the best but things can only get better I hope.
Take care every body in what ever you do.
Love Gill.

Leaving comments...

Some people I am told are having trouble leaving a comment.This should help.

Click on to comment next to envelope, at bottom of each posting, write comment, copy Text in box the same as shown, choose ID, click on anonymous, see preview, publish.

You can always leave your name in the comment if you wish.