FEBUARY- SAVED

This has to be a happier blog as the last one was so hard for me to write, and for people to read and take in, it made some cry.

  I am so pleased my Mum is home.

February 1st

At last a walk on the common with Summer and Paul as well.

Still blood and pain from the catheter I will be so pleased when it comes out.

Keeping myself busy doing teddies and knitting.


2nd

Will is here for a while, he liked his new hoodie and sweets. This was a late Birthday present from us.
He looks well. His mum dropped him off and his Dad picked him up. He is going home tomorrow.
He said its good to have a few days off. He works long hours, and a lot of them at a disabled home for adults.

Bladder pain plus back pain and for some reason now leg pain as well.
My appetite is getting better and I feel stronger.
I found out today that I was in the Navenby Ward for a few days. I thought I went in the side room the same day. Just shows how out of it I was. Bad days, but over it now. (I mentioned this in my last blog.)

3rd

Lindsay and family called in they have all bean ill a bit better now but still not right.
I am learning about things that happened to me last month while in hospital and getting a few flash backs. Also I am still getting strong spasms in my legs and back, more than the usual so its still a bit scary not knowing if its all going to start up again. I have started taking MAGNESIUM tablets at night, they can help sleep. Worth giving it a try anyway.


5th

Today's the day hopefully the catheter will come out for good.
Catheter out just need to do two wees, managed well but pain and blood but that's quite normal. YES its out and stopping out. A good day.
The nurse thinks I am allergic to latex and that's why I had all the pain and problems. Something to remember for next time, yes they'll more than likely be a next time, these seizures are here to stay.
Fair bit of pain in my bladder plus some blood, but its so good to be free from pain up the "Pain up bum" as he was called. Rest in peace mate you did a good job.
Things will calm down as the days go on.

6th

I got weighed 8st 1.8lbs in my pj's. A little bit put back on.

Physio- Told Stephanie about my time inside. Very gentle treatment from her eight needles in my legs and two in my hands plus the calming one in my forehead. The same treatment I had with Nicola as I had no problems with it. So nice to see Stephanie as I have not seen her since before Christmas.
A good session and I felt good afterwards too. Warm this time not cold like last week. That's the problem with RSD even two identical treatments, can and will have different out comes and side affects.

7th

Not a good night, pain and spasms and twitching in my legs and back, pain as well.
Bladder doing well though, less pain no blood so far today. (10-00am)

Going into town with Paul. Just as we got back Paul's sister, Michelle and husband Pete came round to bring me a Birthday card and flowers for next week 13th.

 

  Flowers from Michelle and Pete.

Quite a lot of pain today had to take OROMORPH this helped quite a bit. Later we went to see two little ones that had just turned one, Riley and Josie, yes twins but they were in bed asleep. So we did not see them. I am making them both a hooded jacket each.

I got two more get well cards, plus one I did not put on my last blog. The middle card just looks like Summer.

8th

Took Summer for her walk on my own. Cold day but nice to be out.
I am keeping myself busy doing craft stuff, knitting and sewing. Pain has eased off a bit now. OROMORPH taken again.


10th

My friend Lyn is here today, we met while having our first babies in hospital nearly thirty five years ago. She brought me presents and a card. While talking to her I had a very strange feeling like I was going to pass out and my head felt like it was going to explode. This did not last long but it was not nice. Lyn did not realise anything was wrong. I have had this before when I was very tired or in a lot of pain.

Poor little Tommy-Lee has tonsillitis but is being very brave.  


11th

Weighed again 8st 2.6 lbs a bit more weight on.
My brother David and sister in law Bev are here to see me today brought presents , two little mini plants.

Plus another present for on the day and a card. Later on my other friend Bev came with presents and a card. Helen and Chris came round and Helen did my hair. Another card and present for me. Had Chinese take away for tea. Helen also did the boys hair. Nice to see them all.

A good day but very tired later and quite a bit of pain what would I do with out OROMORPH I know it has side affects but it does work well for me. As for the side affects you get used to them. Side affects or pain what would you choose?


12th

In town getting more wool for teddy clothes I am knitting for Cilla next door.
A very windy day here as much of this month has bean, with a lot of rain. A lot of damage around the country and flooding in other areas. We have bean quite lucky to escape major damage.

Got a Birthday card from Andrew in Amsterdam so I opened it on Skype so it felt like he was here.
He has got me a twenty pound limited addition coin to come later.

Not too sure if I had another small seizure as I was sat on the chair reading and next thing I knew I was laid across the chair with my head nearly touching the floor, with a bad headache. Bit weird as I was on my own so still not sure. Have I had them before and not know ?

13th

Happy Birthday to me.
Lindsay phoned up and sung Happy Birthday to me with Tommy-Lee and Jamie-Lee, Jay-Jay was at school. Nice surprise

Lots of presents and cards. A notebook cooler from Wayne, You put a laptop on it and it stops your legs becoming hot. I am using it at the moment and it works very well.

 

Me using my laptop and new notebook cooler.

 Flowers from Paul.

Doctor Who DVDs from Paul and flowers.  A diary from Summer.
Money from his Mum and Dad, Chocolates, perfume, soap, planter from friends. Plus the presents I already mentioned.

 

Lots of presents.

   

My cards.

A plant and card from Cilla and Ben from next door, plus a card from her cleaner.

Cilla and Ben's present.

Physio- Same as last week with ACUPUNCTURE. I had a massage on my lower back and left hip to try to help the pain as its bean quite bad the last few days. Stephanie kept asking me if I was alright. This was quite painful hopefully it will help. A second year student was an observer to watch and learn. Stephanie and Nicola are third year students so in May they will be moving on to other things. I hopefully will carry on with the second year students.

While at physio Paul had put up Birthday balloons and a banner. A very nice touch to come home to.

On the wall also is the rug I made last year.

All decorated up.

Lindsay and family came round later with cards and pear drops from the boys. She is buying me a smoothie maker later when back in stock. Tracy came as well with presents and card. Badedas bath and shower stuff. I think this is my favourite one.  A cake and birthday song later as well. Thank you to everyone who got me cards and presents. After being so ill, this is one Birthday I looked forward to.

Paul cooked me a Birthday tea. Steak, chip with mushrooms, grilled tomatoes and peas very nice. Summer had steak as well
A very good day all round apart from pain.


14th

Bad night PAIN in my back and hip shooting down my leg. This often is the case after massage but feels a lot better later usually the next day.

Looked after Jay-Jay and Tommy-Lee later as Lindsay had to take little Jamie-Lee to the Doctors she is not very well at all. High temperature crying a lot which is not like her at all. Lindsay thinks it her ears.

Jay-Jay and Tommy-Lee had a go on the sewing machine with me helping, they made a bag each.

 

Tommy-Lee drew a picture on his.

They liked doing it, so very happy. I was machining teds earlier, slight problem with the cotton reel holder it got stuck and dropped inside the machine when I tried to get it out. So its going into the repair shop tomorrow.  I can do without it for a while so not too big a problem.

Lindsay came back and said Jamie-Lee has an ear infections in both ears. Poor little thing she was crying in pain sat in the car. Jay-Jay and Tommy-Lee got ready and went home. They were both pleased they had a go on the machine and made their bags.


15th

Took the machine to repair shop not a big job they said. Also having it serviced, it's done a lot of work lately as I've used it on most of the teds. My foot gave way in the shop and I nearly fell over. The same thing happened just as I was getting in the car causing me to scrape my leg on the bottom of the door frame. Its like my foot just goes though water instead of solid ground. This has happened before a few times usually it means I fall over or fall into things like the door frame.The same place where I scraped it before when I slipped off the chair. Pain apart from leg, is pretty good. Hip has calmed down and feels a lot better.

Very sore burning pain and hot. Not as bad as the last time I scraped it.

The last time. My leg was getting cleaned up and a new dressing put on it.
This picture was taken on the 8th of July 2011.

Still, not as bad as last time. This was caused when I slipped off a chair July 5th 2011.

I even ran that night, club handicap with a lint dressing on my leg. This I was to regret as it stuck to my leg. My leg got worse as the days went on. I ended up having burn type dressing, dressed every day for eleven days then after that I changed the dressing myself. The leg got infected as well ANTIBIOTICS. I have a sore throat today and a bit of a sniffle not really a cold though.

Lindsay and co came round for a little while but Jamie-Lee was not too good. Tommy-Lee has recovered from his tonsillitis now. 


16th

A lot of pain and burning from my leg. Helping Paul clean up and a bit of knitting. Writing this blog as well, a lot easier than the last one.
A sunny warm day here quite a spring like day. Lovely on the common went on twice.
 

17th

Paul and I are going to Ingoldmells for the day I quite like the seaside in the winter. When we got there most of the shop were closed. We found a place to eat "The Copper Kettle" very nice and all freshly cooked. The lady kept apologising because she had a lot of meals to do. This was the only busy place we went in. In some of the shops we were the only ones in there.

We nearly got hit by another car pulling out and not looking. Paul did a emergency stop, I shot forward and pulled my back and neck. Not too bad though it did not ruin the day Even the RSD was good and did not play up too much.

On the way back we stopped at Pennells and got a plant pot and orchid compost so I can re pot them.

Grazed leg is quite swollen and sore, also my ankle is swollen and tender may be I pulled it or something.

18th

Throat very sore and husky voice. Having a quite day knitting and resting .
Phoned my friend Russ who has had a hernia operation he is doing well, sore but at home I wish him all the best.

19th

Throat very sore looks like an ulcer at the back. Earache as well very hot. I changed the sheets and washed them, it was nice windy during day for a change.
I have bean taking ECHINACEA tablets they seem to help me, it takes away the worst of it anyway.

Night time we joined Lindsay for a carvery meal out. Very good it was, I ate quite well in between coughing. A good night. Jamie-Lee is a lot better and ate very well. I even managed to get my  smoothie maker from Lindsay and co, a good night.


20th

Still not too good coughing up stuff now so it looks like its on my chest as well, quite hot. I am hoping to get away without ANTIBIOTICS.

Made a smoothie but only had banana, apple and honey plus milk it was very nice. 

My new smoothie maker very easy to use.

Physio day.

Stephanie did the same as last week with the needles, 8 in legs, 3 in each hand a extra one this week to help my throat. Massage and heat lamp on lower back and both hips. This was very good even though at times it hurt. Another second year student was in on the session.

We called and got frozen fruit, berries that sort of thing to use in the smoothie maker.
Later in the afternoon I felt light headed and very tired cold as well.

Paul got an award from the running club, The Chairman's trophy for his work doing the booklets and other admin things.

Paul and Martin.

21st

Big day today I have all three grand children from eight thirty onwards till Lindsay comes back. She is at a funeral. We played cards, even Jamie, she had the jokers. A game called go fish and pontoon. Tommy-Lee won most of the time.
When it came to Jamie-Lee's sleep time she would not let me do her nappy. She was running around without one on and sat in Summers basket. Eventually I got one on and she got in her buggy and had a little sleep. Ben came round to play also. They all played together upstairs and outside. Later my friend John came round for a cup of tea. He found it bit noisier than usual. Ben's Mum Nez popped in later as I saw her going pass with Emi. Jamie and Emi played as well but Jamie is quite rough at times and kept knocking her over. Every time she cuddled her better. Emi is very dainty We joke that she will do ballet and Jamie will be a rugby player. On the whole they got on well. All the boys decided to go back with Ben so a bit quieter, only Jamie who can be very noisy at times.
Lindsay got back about six and had a bit of quite time, then went and got the boys and headed off home. Along day but good as well.

22nd

Voice not too good and chest very tight. Still coughing up stuff. I feel cold then hot I think that's the infection, almost certain I have in my chest. Back is sore from massage and my right wrist is swollen and hurts. A lot quieter day nice in a different way. I love have the children here I just wish I could do more with them.

23rd

A better all round with pain and no extra pain tablets OROMORPH either.

My leg has improved so much just about better now.

Summer had a bath the first one for a long time so white and fluffy now. Still a ginger chin- this is from staining from water and the common, most westies have it some a lot worse than Summers.

I will not be clean for long Mum.Wait till I get on the common and roll in all that mud and horse Poo. It does feel good though, to be clean and smelling nice.

Paul and I had a few games on the WII. One game called the CUBE Paul did very well first attempt on two games I was down to my last life and failed to beat the cube.

At night time I spoke to my RSD friend Billy who lives in Spain. He has had RSD for less than a year so in the early stages. So nice to be able to talk to some one that under stands what I am gong through. I told him if he has any questions I will try to help him. Theirs always Wietse as well.

An awful of spasms later though out my body some painful. This could be a bit of extra strain from playing on the WII or just the RSD playing up again, the moon, who knows? Bed four thirty.


24th

Whole body hurts not a good night spasms continued and I did not sleep much at all. I felt very light headed on the common. Apart from that, good walk, nice almost a spring like day. Some of this could be down to my chest problem but I know a lot is down to the RSD. I think it has woken up. For the last few weeks after all the hospital stuff it seemed to take a back seat. Now it could be ready for a another fight. A quite knitting and sewing day.


25th

Weight still eight stone four pounds.

I spoke to Doctor Mehta he agrees I have a chest infection and he has put me on ANTIBIOTICS two a day for a week. I am coughing up a lot of yellow stuff and also blood.There is a place in Bath that treats chronic pain conditions---   http://www.rnhrd.nhs.uk/page/79--- He is willing to refer me when I need to go there. At the moment there is no need as the RSD is not too bad. (Thank you Billy)

Went into town on my own today this was nice. I now feel better in myself apart from my chest which is quite tight. Hip not so good and shoulders are not as good as there were. But I am better than I was.

26th

At last I am ready to go to Pilates I have missed it, but have bean doing a bit at home but its not the same as a class session. I did pretty good, even did the one legged balance at the end. I was pleased with myself. I got given a book called "Mindfulness for Health". This explains in easy terms how to cope with pain and everything that comes with it. I have started reading it and its very interesting.
Thank you Jo. Some of the hints I do already, like music to keep the brain occupied and trying to keep busy

I felt a lot looser later on in the day as well. I could ache tomorrow though. Very tired later but I could not switch off. Bed after four even then I did not sleep well.  

27th

Physio-- Stephanie did about the same as last week as this seems to work for me, without my body going into melt down mode. Treatment was four needles in each leg, two in each wrist, one in each of my arms and the soothing one in my forehead. My legs were warm that's a change they are usually cold to ice cold. My arms were very cold though. After the needles were taken out I had a nice soothing massage on my lower back and shoulders. This was very nice, shoulders hurt, but not too bad. My shoulders have bean very tingly with electric shocks again. Well at least my hips are a bit better. Walked home today and bought a book about smoothie recipes. Some very interesting ones to try out. At the moment I just put things in I like and hope for the best. Some good some not so good. As I use it more I will put on my blog a few different ideas or strange ones knowing me. After all I like jelly baby sandwiches- good but big sugar rush.

Later on I had a headache other wise feeling good. Legs now cold and arms are too even after a bath.
Chest infection doing well.

28th

Bad head it feels very tight and when I bend forward it makes it worse. Every so often I have a soft lump that comes up on the right side of my head. Just feels like I have  bumped it or bean hit over the head very soft and quite painful. I think its to do with the Fibromyalgia. Also my skin is hot not like me at all usually cold. This could be to do with the chest infection I have.

My friend Carol popped in to see Paul and I, so nice to see her its bean quite a while. I used to run with her.- Happy days.

Paul and I went to meet Loren the girl who helped me when I was ill in the university cafe. (11th Dec).  I wanted to thank her for everything she and her boyfriend did. I got them a box of Thorntons chocolates.
She is a lovely girl and I am very pleased to have met her. I wish her well in everything she does and I hope she achieves all she wants to do. Saw a few of the physios there as well.

Paul and I had fish chips and mushy peas for dinner, very nice it was too. We got a bit of shopping mostly fruit and veg for the smoothie maker. I am making different ones, you could say experimenting. So far they have all bean good. Made one today of spinach, cucumber apple and grapes. The colour looked like I had blended a Teenage Mutant Ninja Turtle tasted good though.



This is a better month for me, well things could not have got much worse could they? My brain seems to be in gear and working well. Sometimes I struggle a lot with writing and computer work. Lack of sleep and pain does not help.

To all my friends, I hope things are going well for you all.
Summers on its way so warm days ahead. I do hope so. All my love Gill.

The shame I have to share the chair with POO BEAR.

Maybe if I look the other way he will disappear.

JANUARY- DROWNING.

Jan 1st

Well a New Year what will this one bring?
I am back to my normal self which is far away from every one else's normal even before the RSD.

My left hip is not too good, feels like it has slipped out of place again. I must do some more Pilate's.
My mouth is just a bit sore on the upper roof part. The rest about healed. Summer has recovered as well and back to her normal Summer self.

Wayne and Will are going back home today. Wayne is not too well MAN FLU. I hope he feels better soon.

Late night early morning I started to get the bad spasms again I thought they were starting up again like before Christmas. A lot of pain in left side of my neck. Pain ranging from a five to a nine. A lot more than usual of the burning pain as well. Very hot feet and legs.


2nd

A sunny and windy day, Catching up with the washing of the sheets from the beds used over Christmas. With three extra here it was more work but so nice to have the family all together for a while. 

Going into town with Lindsay and family to get shoes for the children. Jamie-Lee has gone up a size and half. She got pretty pink ones half price too.  Jay-Jay got some very smart boots also half price this is going too well. Tommy-Lee had no luck, he did not see anything that was in his size there. Another shop and Tommy-Lee got sorted out a pair a trainers and football boots yes you guessed it half price again. Jay-Jay also got trainers the ones he wanted before Christmas. Everyone happy



I got myself some gel heel pads as I put a lot of pressure on my right heel because of the way I walk.
Well everyone sorted time to head home. Once home and showing Grandad their footwear we realised that Tommy-Lee had bean given the wrong boots, this was a bit much for him and a few tears were shed. Lindsay rang the shop and they are going to swap them over tomorrow when I go in with Paul. A long painful tiring day but so much worth it just to see them so happy. Jamie-Lee kept looking at her shoes and saying shoes pretty. Jay-Jay was so happy as he got the ones he wanted and even Tommy-Lee cheered up.


3rd

Disturbed night lots of spasms hot burning pain to feet and legs. Back is tight and jumping. Heel pads are good they take away a lot of the pressure and some of the pain.

In town with Paul got Tommy-Lees boots and the rest of the things we needed. Another tiring day I hurt a lot. Home for a rest but taking Summer for her walk first. 


4th

Sorted out the toy cupboard  because it was such a mess, while I was in hospital it did not get tidied up, stuff was just thrown in. Tommy-Lee said there was an explosion in there so that's why it looked like it did. Strange the rest of the house was not touched!! Also did the bedrooms so upstairs is all done and tidy we have four bedrooms in all. So quite a big house to clean and keep tidy. Paul started on the downstairs.

5th

Cooking dinner for Paul's Mum and Dad. Roast pork with all the trimmings and Christmas pudding for those who wanted it. Everything cooked well. A good day.

I ache a lot but I will rest now and hopefully that will  help.

6th

I feel a bit strange-  Far away like I have slipped out my body, weird. The walk with Summer did not help either. 

Lindsay phoned and said come and meet us we are coming back from bowling. So Summer and I went to meet them just under a mile away. Jay-Jay spotted me and ran to meet me. Tommy-Lee was shouting Nan and Jamie-Lee just went crazy.
We walked along the river going back, a lot further but nicer for Summer and the boys so they could run around and let off steam. Oh to be like that again.

Lindsay said I did not look too good, I said I have had better days. They came back here for a while.
I was trying to do stuff on the computer with the boys but found it very hard to think. After a while my words became slurred I found it very difficult to help them.

 I am getting electric shocks to all parts of my body.

 Off they went home. I took Summer for her afternoon walk and felt like I was not even touching the ground and floating above it. Paul even came too.

Teatime my hands lost feeling and I found it difficult to hold things I kept dropping my food, fajitas for tea. Sick as well, Pain everywhere spasms as well. Paul thought I had the bug that was going round but it did not feel like that, too much RSD things going on. I felt like I did before Christmas. In and out of consciousness all night I felt very strange limp arms and legs hardly able to walk.I felt totally spaced out but I had taken nothing extra only a bit of ORAMORPH about twenty mls throughout the day, four teaspoons. I have taken loads more than that with no side affects.

I don't know why but I insisted on going to bed how I got up is another mystery to me. Paul said it took a while. This was early morning Paul had stopped up as well sleeping on his reclining  chair in the front room because of back pain. I started spasming almost straight away.  Stronger ones were coming as well. I was throwing myself about drifting off and loosing consciousness. Paul said this went on for awhile.  He asked me if it was time for an ambulance I reluctantly said yes. He then dialed 999, an ambulance came very fast. I have not got much memory of this though. I was taken off to hospital. 



7th

I was kept in hospital where I continued to fit/spasm till teatime. Not as violent as last time but bad enough to have another padded bed. Blood test and usual things done. Doctors and neurologists came to see me. I am to have some tests done.


9th

Catheter put in as I could not wee. Still fits and spasms but I think they are calming down. In a lot of pain. MORPHINE and CODEINE given helped a bit. Late night pain back, hard to tell what does not hurt as so much pain. More MORPHINE. Fits/spasms seemed to have slowed a bit. 

10th

Moved to Navenby Ward early hours of the morning. The porter was very gentle moving me as I was in so much pain. This was the Ward I was in at Christmas but a different part. One lady waved to me while she was getting up to use the toilet. Seems a nice ward.

I was awakened by some one shouting and asking me if I wanted breakfast and something about an appointment for a bladder scan. I think Paul and Lindsay were there. I felt bad not right at all. 

Things went from bad to worse I started fitting, spasming again more violent this time. Pain and more PAIN.
From here on I have not much memory of what was happening to me.
  
I know I saw monsters that loomed towards me and everywhere was red. Voices so far away I was very scared.

What I have written next is mostly from notes that Lindsay and Paul had left me to put in my blog.
I have very little reality of the time between the 10th to the 15th. Night and day just merged into one.

I was given an injection of LORAZEPAM at 10-10am. these injections or tablets were to last the next few days. (Four days at 3 or 4 injections or tablets and three days of one tablet or injection). This did little to stop them, they were very violent and I was throwing myself around.  Another injection given 4-20pm still spasms and fits. They were not getting under control. Also MORPHINE was given to me.

Night time after Paul had gone home, Lindsay was here with her friend Tracy. I stopped breathing and had no pulse. CRASH TEAM called. My pulse came back and I started breathing again on my own. Lindsay and Tracy did not know this yet as they were taken out the room.

I think at this time Lindsay called Paul who got up here straight away.
I knew nothing about this until 18th Jan.

  12th

 I was moved to a side room for my sake and the other patients as my bed was squeaking and I was shouting a lot. I thought I had bean in my side room from the afternoon of the 10th. I did not find this out until I went home and started asking questions to fill in the gaps, and there was a lot of gaps to fill.  

11th/12th/13th/14th

 Not sure what is real and what is fake any more. Lots of pain fits/spasms still continue to come and go, not sure if it is day or night.


15th

Slightly more with it but even then far from right. Out of my window I can see this for the first time.
Telly Tubby Land. E- OH

More fits and spasms. I am going for an EEG today to see what is going on in my brain. Very noisy and bright away from my room.

 Not much difference may be slightly better but still hard to separate the real and non real world.

Visitors, Nerida, a neighbour. Michelle and Pete, Paul's sister and brother in law at night time. Lindsay said I would ask what was real as the two merged into one. I remember seeing the lady who smiled at me when I first came into the ward, standing at my door with another lady and not knowing if this was real or not.

A card from little Ben (6), and Emmie (19mths)  Nerida son and daughter.

16th

Neurologist came and said the fits were called PSEUDO NON EPILEPTIC SEIZURE SYNDROME. I am still in bed and I have not even really sat up  properly yet. A bit more with it today. My catheter was very painful so it was taken out. Hopefully I will be able to wee ok. A lot of blood was in it. I have bean told its TRAUMA  to my bladder and possibly my kidneys, from throwing myself about while having the fits/spasms. This hopefully will settle with time. I have an irritable bladder anyway so this will not help at all.
I have pain everywhere even though my bed is padded my body has had some hard knocks, bruises and scrapes one bad one to my RSD foot covered with a dressing.

 17th

Tried so hard to wee but too painful so the catheter had to go back in late evening. A nurse who I saw later said how much better I looked. I have no recollection of her or in fact most of the ones I saw over the next few days. They had bean with me from the first day of Navenby Ward. They all said how different I looked.
One said I must have good stomach muscles to cope with the last few days. Also I scared my daughter and friend Tracy, plus Paul nearly to death. Also I think most of my family as well.
That's the thing when you are ill you are not aware of what is going on. Your family and friends suffer more than you.

The physio came and said I can now sit up but to be careful as I have bean laid down a long time. I will get head rush from my blood pressure adjusting to being up right again. I sort of brushed this off but she was so right. Bad head pain and very dizzy. Pinging in left ear. I sat up for a while then laid down. One small step at a time.

 

 My padded bed which was not removed until the day before I went home. The bed squeaked a lot so they knew when I was fitting.

A psychiatrist came to see me to talk about what had bean going on. Well in fact there was two, one in the morning a very nice lady I got on with her very well. Another one in the afternoon a man not so good with him at all. Also the lady from earlier. He asked where the proof of RSD was-- I said HERE ME. I had a lot of MORPHINE that day and I told him to speak direct, not in circles. He did not listen much and things did not go too well to start with. We parted friends. I am to see a cytologist tomorrow. A lot has happened to me in the last ten years. This leaves scars.
 
While having tea, my throat decided to go into a spasm and trapped the bit of food that was in my mouth. I was choking, I put my fingers down my throat to dislodge any food this just made me cough up blood. I tried to find my buzzer to call for help but could not. Finally I did and a nurse came and got a doctor straight away. A lot of blood came up then and more choking then I was alright. The Doctor looked in my throat and was pleased it had stopped spamming and bleeding, so was I. I continued to cough for a while bring up bits of food a piece of bean about an inch long came up as well causing more blood. 
A spasm with me can happen anywhere in the body even the throat.

Sore eyes, sore throat and a bad head. I was told not to eat or drink anything for the next two hours as not to start it off again. No tablets, but I could have an injection for the pain if I wanted. I declined the pain was not too bad.
Since being here I have had injections in my bum  LORAZEPAM to stop the fits, my arm B12, and stomach to stop blood clots every night I was there. Plus drips and blood taking. A lot.

John my friend came to visit as well, not able to talk  much though but good to see him.  My hairdresser Helen and Chris her husband later. So nice to see them all.

Things settled down later. Throat very sore still coughing a bit raspy voice.

Paul, Lindsay and Tracy have bean everyday, even though a lot of the time I did not know anyone was there at all.


18th

A lot of bladder pain at 3am given OROMORPTH settled a bit but still very sore. I am quite dizzy my head hurts as well. When the physio said this would happen I thought it would be mild.
I am frustrated as I still have to have the padded bed. The nurses say they are just being careful as the fits may not have stopped yet. Throat is still very sore and voice very raspy still. I have no appetite and am eating very little. I want to get up and move and go home.

One of the MAD Housekeepers was having a joke with me showing me the shower and bathroom in my room. Saying oh look nice shower shame you can't use it. I laughed so funny. I will very soon.

Small fit after dinner but I was alright, Paul said I started shaking and got the nurse, I came round to him asking if I was back. For a minute I didn't know what he meant. I soon recovered after all it was a big day yesterday.

I have bean told about my crash team moment. The crash bell went later in the night and I began to shake and cry- flash back I think even though I can't remember it.

My friend Bev and Russ came to see me so good to see them again. They brought sweets and Russ sat and ate some. He said he was going to put his feet on my catheter bag to keep them warm. Just the same Russ.

Night time my brother David and Bev my sister in law came to see me. That was nice of them they brought sweets as well.


19th

Three big achievements I washed myself, half a dish of bran flakes for breakfast and I went to toilet.
I felt exhausted, the feeling I used to get after a race, tired but happy. This made me sad then thinking about running.

The lady who I made the teddy for before Christmas, is still in hospital and loves her teddy. Paul and Lindsay went to see her. The nurse said she cuddles it and its with her at all times. That makes me very happy.


Mid afternoon the physio came. One of the male nurses arranged this early for me as the physio said it would be Monday. Thank you very much mate. They said I could get out of bed. YES escape plan. I also got weighed 8 stone 2 pounds. (52.4kg). Quite a bit lost about ten plus pounds in total some from before Christmas..

I walked the few steps about three to the chair with help and sat down. Very shaky I gripped the chair very hard. Light headed and sweating heart pounding a lot but I had left the bed. Three cheers for me.  I was sat in the chair when Lindsay and Tracy plus Jamie-Lee came to visit. They were happy to see me out of bed. Jamie-Lee said hi Nana. She laid on the bed and said some thing that sounded like night,night.

I sat for about an hour and a half, maybe a bit too long. I was helped back into the bed after Lindsay and family had left, by the nurse that had called the physio and I thanked him. Very tired. One side of the padding was left off but the sides were still put up.

20th

Not much sleep I think my mind was racing about walking today with the physios. I think I can do it.
I walked with one physio, a walking frame and did quite well very shaky and right foot did not help as it went into a spasm. I am safe to go home very soon. Just need to do the stairs tomorrow. I think I will be fine as you have something to hold on to.


I am told the catheter will come home with me to give my bladder time to rest from all the trauma it has had being bashed about a lot. One of the nurses gave it a name PAIN UP THE BUM not quite appropriate but it will do. I used the bathroom today, I was so pleased.
All the time I have bean in hospital over the years I never had my own private room with en suite and when I am nearly going home I can use the bathroom for the first time, and I never did get to use the shower.

Lindsay bought Jay-Jay and Tommy-Lee up to see me, that was really nice. I have not seen them for ages, since the 6th January. Jay-Jay asked about the catheter I told him what it was. He said, I wished I had not asked. He laid on my bed Tommy-Lee on the chair. He said I should have got TV but I'd sooner listen to the music.

Not so good late night, too much thinking, going over what everyone had said over the last few days, it all became too much for me and I sobbed for about four hours on and off. A nurse talked to me for a while. Thank you very much..
The stress and pain of having a chronic pain condition is bad enough but when everything goes wrong its very hard to cope.

The song by the Beatles Eleanor Rigby- words sums it all up. Face in a jar by the door etc
I did not really sleep.

21st

Break out day?

Slept for about two hours very excited.
I have walked to the bathroom with the frame and got washed and changed. This felt very good.
Physio came and I did the stairs, safe to GO HOME.
The cytologist came back to see me and we talked about going home and told me to look after myself and not everyone else.

About 7-45pm ish I left the hospital with Paul to go home. Complete with walking frame and catheter (Pain up the bum).
I am looking forward to seeing Summer.

I would like to say a VERY BIG THANK YOU to all the Nurses and House Keepers especially the mad one. Also the Doctors and managers for the kindness and support I was given. Also the care when I was very ill. I felt like I was very special and lucky to have bean in my own room.
I know it was done because I was so ill and also because I was quite noisy shouting out when I was very scared. Also the squeaky bed, at least they knew when I was having my seizures. This did not bother the other patients then as the room was away from the main wards. Also I would like to thank everyone you came to see me. Especially Paul, Lindsay and Tracy.

On arriving home Summer went crazy ten big high fives even before I left the car and another twenty at least inside. Lots of kisses as well. She sat with me the rest of the night. I have missed her a lot.

My baby.

Paul's account.

It’s Tuesday 7^th January and because Gill hasn’t been well lately. I decided to go to bed at the same time as her at about 2-00am. At 3-00am the full body spasms started with her throwing herself including her arms just like an epileptic fit. So as not to hurt herself I decided to try and hold her down on the bed, bearing in mind that I am nearly twice her weight I found this nearly impossible, for a little one she showed signs of real strength. The spasms/fits went from one to another to another with Gill unable to control what she was doing. Gill and I have this agreement that we both have to agree before I can dial 999 for an ambulance. At about 3-30am we made the decision and I dialled 999, within a short period of time 2 ambulance men arrived and very quickly decided to transport her to hospital. I gathered up her medication and a prescription form along with an RSD printout and a print of her medical conditions. Arriving at A and E at the same time as the ambulance we were shown straight into a cubicle. Nurses took readings and a Doctor examined her trying to make her as comfortable as they could but with the spasms/fits continuing then this was an endless task. It was decided to give her IV painkillers, fitting the cannula was not the easiest of jobs for the Doctor because of the spasms, and the spasms seemed to ease off and by 5-30am they were wheeling her to MEAU, this seemed to start the spasms off again.

On reaching MEAU and with the nursing staff witnessing the spasms they quickly put bed guards up. One of the nurses tried very hard, phoning nearly every ward in the Hospital, to obtain cushions and pillows so they could be fastened to the bed head and bed guards, 6 pillows and 3 blankets were used for this, in the end she had a total of 10 pillows. The spasms continued. Towards teatime I decided to go home to look after our westie Summer and to get some sleep. Daily I would go up to see Gill arriving between 9-30am and 10-00am, joined most of the time by Lindsay, who will give her account, taking her home at lunchtime, grabbing a bite to eat then back up the Hospital until between 4-30pm and 5-00pm.

Gill was transferred to Navenby Ward at about 1-45am on Friday 10^th and to be honest she couldn't have gone to a better Ward, as some of the nursing staff had nursed Gill before so they knew her and were all very helpful and friendly and this includes the housekeepers. But on the down side the spasms seemed to get a lot worse and she also started to hallucinate quite badly. How often did the spasms occur, well they varied from hour to hour and day to day but I would say on average the spasms lasted between 15 seconds and 2 minutes, at times she could have 5 episodes in 6 minutes  and roughly 40 plus per day. 

I did morning and afternoon visits daily giving me the evening to rest and relax a bit and look after Summer and catch up on the household jobs.

Then I received a phone call from Lindsay, a call which you never ever want to receive. It started with Lindsay crying, Dad come up quickly they've got the crash cart to mum, she stopped breathing and they could not get a pulse and Tracy and I have been taken away from her bedside, there’s loads of Doctors and Nurses working on her and they've put pads on her chest for the defibrillator.

I can’t remember the journey to the Hospital too well because of what was going through my mind; mainly would Gill be alive when I get to her, with tears rolling down my cheeks and I have shed a swimming pool full, these last few weeks I think this was the most frightening journey of my life. 

It was around 8.30 pm when I got up there, was the love of my life alive ...YES.... thank God, I think she was chatting to Lindsay and Tracy. Relief. With Lindsay and Tracy heading home I decided to stay, exchanging text messages through out the evening, with having trouble settling the nursing staff advised me to go home and at midnight I gave in to there suggestions and they stressed that if there were any problems they would contact me straight away. With no phone call by 3-30am I decided to go to bed setting the alarm so I could be up at the Hospital at my usual time. I woke thinking thank god no phone call.

The Spasms continued then about lunchtime on I think it was Saturday 18^th the spasms stopped with a flutter of the leg muscles in the afternoon, had they started again, NO.

At about 8-15am on Saturday 18^th I answered a phone call, hello this is Staff Nurse ***** on Navenby Ward. I thought oh no not again and in about 3 seconds 1 million thoughts went through my mind. The Nurse said there’s nothing to worry about, again relief, Gill wants to know if you’ll bring her camera in as she wants to take a photo of “Tele Tubby Land” outside her bedroom window. The mad lady (nutty nanny) is on the mend. She was out of bed for a short period on Sunday evening. Then up nearly all day on Monday with no spasms. The physio’s arrived on the Tuesday to see if she could walk a bit and do some stairs, and if so, it was home for her. I know Gill’s determination; the stairs would definitely not defeat her so it was homeward bound for her after teatime as we had previously decided. 

Lindsay's and Tracy's story

Dads account of the hospital stay is a pretty good one so I wont repeat too much,  the night things took a turn for the worse, the spasms seemed quite violent mainly going into the chest and throat area.  During one bad spasm as it went into her chest, she stopped breathing going a grey in colour, I slapped her several times very hard round the face, shouting, mum, mum, but no response,  Tracy pulled the emergency cord on the wall and the room filled with doctors and a crash cart.  Things suddenly became very scary, the doctors fussed round mum and started to charge the shocker machine, at this point we were asked to leave the room.  Tracy and I were obviously very upset, we went out and waited in the main corridor to compose ourselves as once mum came around she wouldn't see how upset we were and we didn't want to worry her as to how bad this one had been, the doctor met us in the corridor and my first thought was 'oh no please don't let it be bad news'. Thankfully it wasn't and the doctor proceeded to tell us that this was the way mums body was dealing with the pain.

Next is video of one of my milder seizures. This comes with a caution as may upset some people. I thought people would want to see this as its part of my RSD life.

22nd

Not so good I hurt everywhere, bladder very painful. I think all the bits I bashed about are now hurting because I am moving about now. Temperature all over the place hot cold hot. Legs are like ice as are my feet. Resting and not doing much. Using the frame to walk, very wobbly without it, quite dizzy as well at times.

23rd

Had a lovely surprise gift, I opened it and a Get Well Balloon floated out making me jump and scaring Summer who barked and grumbled at it. This was a gift from Nicola and Stephanie my physios. What a lovely thought. Thank you both very much. A teddy for me after all the ones I have made. This even had a hat like mine.  PRICELESS
 

 My hat. Dippy hat as I call it.

 Got for cross country 11 years ago to keep me warm while awaiting my turn to run, as ladies were mostly last to race.

  
Stomach a bit upset. I got weighed 8 stone 1 pound. I have lost quite a bit of weight in the twice I have bean in hospital. About ten or eleven pounds.


24th

Paul bought me some very pretty flowers. Thank you Paul.

 I had a visitor my friend Debbie who walked Summer when I was ill the first time, she brought me a plant and a card from her and Snitter the dog. Thank you very much.

 


I am still getting a lot of blood in my catheter also pain before hand. The  pain is like cystitis  I wish it would settle down.


25th

Getting stronger not using the frame as much. Lindsay here with family its bean so long since they were here last. The day before I went into hospital.

Little Jamie-Lee bashed her head on a chair a very big lump came up. Jay-Jay and Tommy-Lee are a bit off it, quite for them. Later after dinner Lindsay put Jamie-Lee in her pushchair for a sleep in the front room watching television Mr Tumble her favourite she actually sits still when he's on. Jay-Jay came down and said wheres Jamie? and before Lindsay or I could answer, a loud Jamie voice shouted IN HERE. Jay-Jay went to join her. Later Tommy came down and joined them. They all looked like they could go to sleep, Jamie-Lee did for a short time. Her bump had gone down a bit as well and she was a lot happier.

26th

I am dressed for the first time since 6th of January my trousers hang off me. Blood in catheter first off. Rang Lindsay, Jamie-Lee is fine, head bump a lot less.
Paul's Mum and Dad came to see us. They asked me how I was.
Not using the frame as much and able to walk mostly on my own.

 

 Spot the Westie.

 A lot of spasms in my legs later at night some quite strong. I thought here we go again but it settled down again. I think because my legs are always cold that does not help. Catheter clear most of day.

27th

Seeing Dr Mehta today. He looked at me and said you have lost weight. We talked about the hospital stay. I asked him if he could take out the catheter but he said no as I still under the Hospital. If things did not go well and I had to have another one put in this would then stop for a lot longer, like a month. I tried. He has prescribed high calorie build up drinks two or three a day to get my weight back up.

28th

Physio went well - eight needles in legs two in hands one in forehead, a calming one. We talked about the last few weeks. Nicola knows quite a bit about the  PSEUDO-  non epileptic seizure syndrome. Nice to talk to someone who does. A good gentle session.

I was ice cold later and could not get warm. Did a bit of knitting, Jamie-Lee's little cardigan that I started before Christmas and did not get finished in time. The high calorie drinks could be affecting my stomach, going a lot.

29th

I escaped outside for a walk with Paul and Summer, this felt so good as you all know I enjoy my walks. Very cold though. Saw a friend and her dog. She said it was nice to see me out and about again. Pain in my neck shooting down to my back and head. This had gone away for a week but now back with vengeance. I think all the seizure activity moved something for the better at least for a while anyway.

I have now finished off Jamie-Lees cardigan quite pleased with it as well. She can have it on Saturday when they come.They did not come this week as every one ill. Get better soon every one.

30th

I think things are picking up, my bladder's behaving better. Still bad stomach. I feel very week and at times dizzy and a bit wobbly but that will improve with time.

A bit of snow first of the winter - nice - I like snow so does Summer.
From teatime a lot of bladder pain and of course, blood as usual, when I get the sharp pain blood always follows. Took ORAMORPH. I will be so pleased when this comes to an end and is removed.
Wednesday can not come too soon for me.

As you can see not the best start to the New Year.

I think I have worked out how RSD builds up and destroys me when I am at my lowest time. Think of Transformers- how they combine to become a giant one. I think that's what happens with RSD, first a leg becomes strong then another, arms, body, then head. Then it becomes powerful and very difficult to fight off. This monster will fight back at everything that is thrown at it and does not like to loose. Even when under control it will still try to win. That is my view any way.



Hope you all had a good New Year, for me things can only get better. Love Gill.

I am looking after my Mum because I love her, and she loves me.

DECEMBER- SINK OR SWIM.

1st December

Sharp frost to begin the day and new month. I took these pictures, the trees look so lovely this time of the year I think. The sun was very warm so a lot of the frost had gone. Good walk with Summer on the common she likes the cold weather better than the hot. Good job we get more cold here.

Two views of the river.

 2nd


Just about finished all the Teds so very soon they will be going to their new homes. All will be revealed tomorrow.
Quite a lot of pain in most places a gnawing type that gets to me. Sensitive everywhere, a few extra tablets IBRUES and OROMORPH. While making the teds I tore my finger on a pin. This caused  my body to go into melt down mode. I had a bath this helped a bit.

3rd

Teds all done and bagged up thirteen in all. They are going to all the physios that have helped me in the past year. Just a thank you gift.
 As without them I would be in a worse state than I am now. Also one each for the Tutors as with out them they would be lost some of the time. Third years now so more confident.

  

 All the Teds for physio.

Since September I have made twenty six teds.

4th

Pilates- This was not one of my better sessions. Spasms everywhere starting in one place and spreading to another. One started in my foot and ended in my shoulder. Pain as well.
Back home for a while then physio. I took OROMORPH.

 

 Stephanie Ted, she loved it so much she did not want to put it down.

 

 I got a present as well from one of the physios.

 Physio was fourteen needles in my legs and three in my wrists. Just about all of them hurt. A heart to heart as well, this made me feel a little better. Going home very shaky my legs felt like they were on ice not firm ground.
A big nose bleed about nine pm. I just stood up and it started to drip then it poured. I did not make it to the bathroom, so sat on the kitchen floor with a  load of kitchen roll.
Nicola is handing out the rest of the teds for me today. Thank you Nicola.


6th

I ache today but Wednesday physio was a big session in more ways than one.
Cleaning up in the morning. Lindsay came back with Paul after shopping. They left Jamie-Lee in the car while the shopping was brought in. She did not like it and kept shouting ME ME all the time. She is very funny little girl.

Shopping in the afternoon. Lincoln was plunged into a blackout no lights or electric at all.  I was half way down Marks and Spencer's steps. Some shops closed some had back up generators. The lights flickered then all black. I got most of what I wanted. By the time I was heading home the lights were back on. Some people's were off a lot longer. We were told there was a problem at the main grid.

Lincoln is a terrible place to get round by car, it can take a long time to get through the city centre because the rail line run straight through it. Trains come through about every five to ten minutes in peak time. Goods trains as well lots of trucks. So its easier to walk instead of spending half an hour plus on a bus stuck at the railway crossings. The traffic builds up so nothing moves anywhere very fast.

Still a lot more pain than I would like, more tablets. Early hours my leg went the same as it did before (26th Nov) when I hit my foot on the door frame. Another nose bleed.

7th

Not really any sleep, bed about 6am up at 8am. I don't really feel tired though. Good job because Lindsay and family are here today. Andrew reminded me that MORPHINE can cause nose bleeds. So perhaps its that. Another nose bleed late night again, that's three big ones in as many days.

Marzipan all the cakes four in all.

8th

A nice dinner out today with Paul.

 

 More Teds for presents. 

One of the cakes is for a present which I need to take soon, so I decided to ice them all. All done now.
My ankles are swollen but not painful. That makes a change.

10th

Awake early, out for the day at Beeston near Nottingham to see my friend Bev. We are exchanging presents. Having to finish off a tea cosy there as I didn't know where the holes wanted to be for the handle and spout.
Not a bad journey there but it feels like my nerves are having a party. Bev took me to a place called Attenborough -  http://www.attenboroughnaturecentre.co.uk/ --  a nature reserve park very nice but very cold. We saw squirrels as well, they seemed very tame too.

 

We had some soup and a roll all home made very good too. The cafe is designed so you can still see all the wildlife. I was hurting a lot by now so more tablets.


11th

Pilates not good. More pain and spasms.   Quick dinner then off to physio hopefully they will help.
Fourteen in my legs six in hands. Another big session. Feeling not too good, I decided to have a hot drink at the Cafe. I got there about three thirty and sort of passed out. The next thing I knew it was gone five o clock. When I was aware of my surrounding about an hour later. I was told what happened, I had bean out for about an hour and a half. They could not bring me round for any length of time. At first they thought I was a sleep, after all it is student land. They were considering an ambulance, they said I kept saying no. I could not stand, pain everywhere. They phoned Lindsay my daughter and Tracy, her friend and they came to pick me up. I could not walk and felt very bad. A girl called Loren and her friend helped me a lot. Thank you very much. Hopefully we can meet up so I can thank them better.

Once home I did not feel much better.  Jay-Jay looked after me till they went home. I feel very strange and a lot of pain.

Jay-Jays Story, Grandson age nine.

We arrived at Nans, I shouted  Nan, Nan are you home. Grandad said she's gone to town she will be back in half an hour. Later Nans phone rang but it was not Nan it was this woman called Lauren. Telling my Mum hi its Loren your Mums here with us, would you like to come and pick her up as she is not well. Mum replied yes.
I looked after Nan for the rest of the night and stroked her head. she looked a bit strange more than usual. I was quite worried about her.


12th

Still feeling crap I did not bother to get dressed, so unlike me. Spasms and pain and shaking most of the day. Could it be a virus?
Paul went to pick the grandchildren up from school. When he got home he found me collapsed on my chair half hanging off.

Paul takes up the story from here. 


As time went on things got worse more violent spasms started. Fit like ones. Gill was in and out of consciousness. I dialled 999, within minutes a Paramedic came, (I have a vague memory of this).  An ambulance was needed. They gave her GAS and AIR that helped to relax the spasms but as soon as she stopped breathing it the spasms got more violent. Throwing herself around. Quite frightening. Off to the hospital, no choice this time.

Once there not sure what went on in and out consciousness all the time.

My daughter Lindsay arrived. Her story--

I arrived at A and E and had to wait twenty minutes to see Mum as she was having bloods taken.
Saw Mum at 7-00 pm. Mum was in and out of consciousness. 7-53pm urine test came back clear. 8-30 -- bloods ok. Now awaiting on infection and inflammation bloods to come back. Pain and spasms still coming in waves managing to control them on gas and air. 10pm Mum becomes unconscious till 12-08.-- during this time they put in a cannula and saline drip. Doctors tried for about 20 minutes to awake Mum. Banging on her chest pinching her ear and shouting at her, all to no response.

Friday 13th

12-10. Mum awake for 2 minutes, sore neck from laying funny. no spasms or extra pain.
12-51-- being admitted to MEAU awaiting a bed.

01-43 -- Full body spasms started immense pain, whole body fitting and spasming throwing her self all over the bed. About 2-30am-- the spasms got terribly worse the nurse shouted for some help and about 15 Doctors came rushing in the room and lined up both sides of her and held her down. This continued for about 2 hours during this time Mum was severely hallucinating and was in serious pain. Gas and Air seemed to help. Whilst Mum was spasming she was banging her head and throwing her whole body around like she was the exorcist. It was pretty scary.

At about 5am-- Mum was given a MORPHINE injection and some DIAZEPAM. Mum got transferred to the MEAU ward. The staff were lovely and stroked Mum to calm her, I left about 5-30am she seemed more settled.
 Thank you Lindsay for looking after me I don't think it was an easy thing to do and at times terrifying.


 I think this is when I got the padded bed.  

14th

This day was very much like the 13th a day I do not remember much about.



15th

I feel a bit more like me but far from right. I hurt everywhere I have bitten my tongue and mouth and lips are very sore and bruised. Cuts and bruises everywhere.

I do not remember the last three days very much at all. Just the fit like spasms. I have a padded bed, as well to stop me from throwing myself about and causing more damage to my body. Everywhere hurts, increased tablets as well. Lindsay told me I have had three bags of fluid for dehydration. I was told by the Doctor or nurse, all my veins had collapsed and they could not get a line in. I have loads of marks where they tried.


16th

I have bean moved to Navenby Ward now. Still a lot of pain I feel like my ribs are broke they hurt a lot, moving and coughing are the worst, but just breathing hurts. Still having spasms but not as violent now. I am covered in bruises and cuts. I bit my tongue a few times, also my mouth inside and lips have chunks out of them. I think if you imagine falling off a building or being hit by a car that's just about how I feel.
The nurse gave me a shower that was nice she said I had a lot of cuts and bumps in my head.
I tried a bit of dinner but the stew was horrible and made me wrench and feel very sick not good with sore ribs.

The Doctor came to see me and was pleased how I was doing he said physio was coming to get me walking again.
Physio came and I had a very wobbly walk legs going into spasms very painful.

17th

Pretty much the same as yesterday crap night pain and bad head pains. Another bad nose bleed it poured. the nurse took my blood pressure and it was high. 179/107. Later, when taken it went down to 145/104. This is still high for me usually its 140/80 and does not vary much only when the RSD strikes.  The nurse said it was a lot higher a few days ago.

Physio came back and I walked a bit safer and less spasms I tried the stairs but my legs just buckled under me. I was so disappointed because unless I can do the stairs I cant go home as I would be unsafe.  Another nose bleed but not as bad as before. My mouth is very sore with chunks out my lips. Hardly able to eat.

18th

Better night I feel rough but anyone would after what I have bean through. A lot of back pain when I move, bean sat still too long. Loads of ORMORPTH and BECLOFEN to help spasms and pain.
The doctor is pleased with my progress, and if I can do the stairs and walk a bit better I can go home. He thinks what happened was my body just shutting down and the RSD playing up big time. Not proper epileptic fits but RSD type ones. I am to take it very easy as over doing things could bring them straight back again. I could quite easily have another attack.

A lady in my ward is recovering from an infection that made her go very strange not knowing who she was and trying to get away. She is very much alone and has very few visitors. I got Lindsay to bring in a Ted I had made, she just sat looking and stroking it-a very emotional moment.

Physio's are back, I am determined to do the stairs so I can go home, I have bean trying to keep calm.

Success-- stairs cracked I can go home after dinner. I am so pleased just six days this time. Lindsay did not agree with the treatment neither did I. I just wanted everything to stop hurting.   (OROMORPTH and increased BECLOFEN- plus more pain tablets half the time I did not know what I was taking). I think they could have helped me more, as they did in A and E. As I was just left to get on with the spasms until my body helped it self. Three days of hell and pain. At one point I was given DIAZEPAM again. I am in a lot of PAIN but that will go with time. I have battered my body to the limit.
The lady I gave the Ted to has improved and knows where she is and is talking sense now. I am so pleased. she thanked me so many times for the Ted. I told her she will never be alone now she has him. She did not know what to call him. Said goodbye to every one else and left a tin of sweets for the ward.

HOME WARD BOUND. Quick before they change there minds.


19th

I feel quite good considering what I have  bean through. I am moving around a bit slow and painful. My mouth is a mess, big swollen lips and very sore inside. No appetite very painful to eat anyway. I have lost weight, about six plus pounds. Well at least I have a head start now to gain a bit more weight over Christmas.  Another nose bleed later.

20th


Fair night- woke to ice cold legs and feet. I am lucky they managed to get me a physio appointment not Nicola or Stephanie but one I have seen before plus one other. She thanked me for the Ted and gave me a decorated cake that her son had helped her do.

  

   Everyone is so nice here.

Treatment was six needles in my legs and two in arms nothing too much. She took my blood pressure 150/76. She has advised to have it checked at my Doctors. I am seeing him later. I felt better after the treatment more relaxed.

Dr thinks I am alright and my blood pressure is a little raised but what I have gone through is to be expected. I am to rest and carry on as I normally do. He said I will fight back because that's what I do. I need to slow down a bit but the RSD will not let me relax or switch off.
I hope I will be able to cope with all the Christmas stuff.


Lindsay was going out tonight but little Jamie-Lee is ill, very sick, a bug I think. Poor little thing.


21st

Mouth is very sore more swollen looks like I have bean in a fight. Cold sores as well. Very difficult to eat and clean my teeth, just using mouth wash. Pounding head ache. Hurt everywhere but spasms are just about normal RSD ones now.
Wrapping presents and a bit of knitting.

Went into town with Paul to get the rest of presents. Half the time I was high on MORPHINE. Just wandering along not even sure what was going on. Somehow we got most of what we wanted.
Very tired and a fair bit of pain.


23rd

Much the same, cuts healing inside my mouth. Lips very sore bleeding at times as well. A lot of these are where I bit them when having the fits. Some from Lindsay forcing in the gas and air mouth piece.
Back to town to finish off. Everything got now. Chris and Helen (hairdresser) here tonight. Not having hair done though, head still too sore.
We had Chinese for tea. I managed one chicken ball two spoons of rice and five chips. My stomach felt like I had eaten a full course meal.

They helped me make the little cakes as some are for Cilla and Ben, as part of their Christmas present.
I am finding it hard to think straight. I dropped the icing sugar then could not find things that were under my nose. I did manage to get them done with their help. Thank you both.

 

 My Christmas cake, one of four I made..

 

 Little cakes.

24th

I don't feel Christmasey at all, thinking of people who should be here. Mouth is healing but so slow, but I suppose there was a lot to heal. Sometimes I think you don't know how ill you have bean until 
you start to get better then its a long road back again.
Andrew here from Amsterdam for the Christmas time. Wayne from Halifax here only two day then home to work. He will come back on Saturday with Will.

Christmas day--
Dinner went perfect. I ate my biggest meal since 10th December even then a child's plateful. Lindsay and family came round after dinner. We did originally say they were all coming here, but I did not think I could cope. Noise is a big factor for me, it produces a lot of extra pain.      
Everyone had a good day with traditional and unusual presents. The boys and Jamie-Lee mostly had clothes from us with a couple of games. Everyone liked their things.
So nice to be home. A really nice day.

Wayne making the boys laugh in his onesie.

Its Christmas.

Andrew.

Wayne again.

Busy busy.

Jamie-Lee, Tommy-Lee and Lindsay.

I got Jamie-Lee a new hat.

Jay-Jay cool as ever.

Tommy-Lee cool as well.

Wayne on the wine not so cool.

Pretty girl.

Wayne and Summer.

Paul.

Andrew. Peace and pot.

Hard work Christmas.

Andrew.

Andrew and Summer.

So tired.

Me and Summer.

Thumbs up from Jay-Jay.

Jamie-Lee and Lindsay.

Jamie-Lee with her little bag.

Tommy-Lee and his curls.
 

Tracy not a good one but the best I got on the day.
 

Jamie-Lee and Lindsay. 

Bye bye-- going home.

Family picture. Jamie-Lee kept turning round and made everyone laugh.

Too much for Summer

We had the cat, ginge, from two doors away here with us as well. I think he came to see Andrew. When Andrew was here he used to sit on his knee a lot outside.

 

 Andrew with Ginge.

 

 

 In Summers basket again. He thinks he lives here!

 
 26th

Wayne's gone back home, he's here again on the 28th with Will.

 These are the slipper we got Will. Wayne took them back with him. Helen bought them for me while I was in Hospital. Thank you Helen.

 

 Lindsay and co here very excited they are too. Summer just plays and loves everyone.

 

 A very happy dog, even though ginge pinched her basket.

Late evening a lot of powerful spams and pain. The pain went from a 4/5 to 9/10. Hopefully its just the long day I have had, and not the fits starting again. I am very tired.



27th


Popped into town to change a few things that I got wrong sizes of. Walked there bus back for once, I got home in about fifteen minutes. I thought the trains were on strike or was I just lucky?
A lot of pain in back and hips, also right heel is burning and sore. This is pain from walking.
Does not matter what I do the pain will get me some how.

Finished off the last Ted for after Christmas- late present.

 28th

Wayne and Will  here. Will is having his presents from us and family ones today, also shared ones for Wayne and Will not forgetting Timmy the cat. Plus presents from them, another nice day.

Will getting excited at his Mums house.

Tracy, trying to keep the boys calmer.

Now Jamie-Lee joined forces as well no chance.

             Me not looking too bad considering the melt down. As you can see my lips are still bad.

Will looking very Happy.

29th

Very sharp frost cold as well but beautiful on the common. I feel just about me again still quite a few sore bits but mostly healed. A lot of spams in my head and neck quite powerful ones too.

Wayne and Will out for the day. Andrew back to Amsterdam later, tea time flight. I think he will be pleased to be back home. So just me and little Summer most of the day. Summer is not well keeps being sick. She has had nothing different so she must have picked something up on her walks. She is not eating at all and very tired. poor Summer.

Message from Andrew the plane has landed he is back home again.


30th

In town with Wayne, just having a look round, he even treated me to dinner, a Subway sandwich, nice it was too. Not often I am treated to dinner out, thank you Wayne.


31st

Awake a lot of my short night not too sure why as not in any more pain than usual my feet were very hot though.
My bother David and his wife Bev are here for tea. Tea went well a buffet type help yourself. I made them a Christmas cake and was a bit worried that it would be dry as I fell asleep (About four in the morning) and it cooked for a little longer. They said it was beautiful and moist. A nice night good seeing them.
Summer has perked up a bit and is eating now. Spoke to someone that goes on the common with their dogs and they said quite a few dogs have bean ill..I am just pleased she is a lot better.
    

SINK OR SWIM.

I feel at times like I am in a boat with a hole in it and I am battling to keep afloat bailing out the water as fast as I can. Along comes some debris and blocks up the hole and things are good for a while. The water flow gets stronger and the debris gets washed out and I am back to bailing out again. 

I know that's life, but its a lot harder with RSD. sometimes it all gets too much !!!

Hope you all have a Happy and Safe New Year and things go right from then on, or better at least. 

All the best to you all Love Gill.