ONE STEP FORWARD

August 2ND

Sleep seems to be getting worse. I am going to bed even later, maybe its the hour I lay down or its just because its warmer at nights, I don't know. I am going to bed between 4am and 5am, then I don't go to sleep for a while.

3RD

I went into town today I think everyone had the same idea as me - it was packed. I had a few near misses with my scooter, but just about managed to keep the bumper to its self. There were a few people I would have liked to hit though.
Pain levels are quite good about 4+ spiking to 9 but not too much. Temperature changes about the same. When I returned from shopping I had a lay down and actually went to sleep.

4TH

First monthly injection vitamin B12 this one really stung for about an hour the worst yet, It was still sore after two hours. I have bean told they sting because its a vitamin and its a reasonable dose 1ml.
No lay down today as Russ came round had a go on the WII. I won him again at bowling and drew at table tennis.
Pilate's. I am enjoying it very much now and I can now go on my bike. For the last few day I have bean suffering with my IBS, a lot of pain and severe bloating. I thought I would sleep better tonight as no rest earlier but no luck, I slept worse.

6TH

Lot of shooting pain in my right foot. Also pain shooting from my left side of my neck up to my head, they really drains me. I had a weird sort of black out later in the evening, Andrew said I was like asleep with my eyes open and not responsive. When I came out of it I was terrified like waking from a bad dream. Bed 5am I had a rough night with spasms throughout my body.

7TH

I woke to bad pain in my right wrist and arm joints I thought it was the WII at first may be overdoing it, but the pain spread to all my joints as the day wore on I took IBRUS and DIAHYDROCOEDINE. This helped a little.

8TH

Joanne from Pilate's gave a talk on tapping, the alternative to acupuncture.
(for more info: www.emofree.com )
Russ went with me on the bus, it was very bumpy and played havoc with my foot. It was a very interesting talk. Later in the afternoon I began to feel very dizzy and in a lot of pain and spasms though most of my body. Russ made sure I got home OK. I rested, then later on felt a lot better. I think it was the bus journey starting the pain off and tiredness.

10TH

I now feel a lot better, pain back to normal rate. Temperature is all over the place I wish it would calm down. IBS is still playing up.

13TH

Doctors today I asked him about dizzy spells and black outs, he thinks they are side affects of the tablets. The pain is probably the fibro. He took my blood pressure it was a little low so that could account for some of it. I went into town but was in a lot of pain. I came home and had a lay down.

14TH

Physio - Wietse said I looked very pale and I was not too good on my feet. He agreed about the tablets and fibro. On the way home on the bus I had trouble sitting upright my body felt very floppy and I was very unsteady on my feet. I really ached all over. Am I coming down with something? I hope not. On getting home I had a lay down. Later on I did not feel any better and was having trouble talking.

17TH

We are going on a few days holiday to Caistor near Great Yarmouth. My little dog Sandy is coming with us. The journey was alright not too painful. When we arrived it was very sunny.

18THSandy chilling on her holiday, she even had her own room with her basket in.

We went into Great Yarmouth to look round. Its a very hot day. I walked too much and paid the price with a lot of pain. Back at the chalet I had a lay down.

19TH

We went on the beach it was very warm but windy the sand stung the backs of my legs. IBS still playing up. My joints are still painful.

20TH

Today we went on a steam train BURE VALLEY STEAM RAILWAY ( www.bvrw.co.uk ). The train was very small almost like a toy. Two of the carriages were named Annie and Carbelle off Thomas the tank engine. The train chugged along though the country it was most pleasant. We looked round a few shops then got another steam train back. The weather is still very hot but more windy.

Me and Paul in side the train as you can see it was tiny.

21ST

Home today the journey was quite smooth. It rained on the way home the first rain of the holiday. The joint pain still continues.

24TH

Balance is better than it has bean. I think the Pilate's has helped with this. Pain level are on the whole mostly down. Even the temperature changes have bean better the last few days.

27TH

Physio again have not bean for two weeks. Wietse was pleased with the way I look, a vast improvement on the last time I was there. He said the joint pain was more than likely the osteoporosis playing up. I told him I always get worried as every time things look up, I seem to get knocked right down again. He said think positive, one step at a time.

27TH

I walked too far today and have upset my foot. Its Pam's birthday today We got her a Lincoln City hat and scarf. She loved it. The football club gave her a signed football as I told them how ill she had bean. She and Malc go to the home matches now. It was a lovely gesture - she was almost speechless.

I feel this month all though I still have had a lot of pain but things are a lot better than previous ones, no accidents. May be this is the start of better days. I hope things are reasonable with you all and you are enjoying the sunshine while it lasts.

Love Gill

One step forward, two back, one more forward.

JULY 3RD

I have a real bad head today, the weather is very stormy and hot. Pain is still down about 4-5 but shoulders are stiff and painful.

4TH

My son Wayne is here for a few days so that will be good, he has no computer to sort out either this time. I hope the hot weather keeps up.

6Th

Woke with very sore eyes, they are very dry used SNOTEARS that made them feel a bit better. I feel dizzy a few minutes after standing up and a sick feeling. My body temperature is going though extreme changes. When changes are this bad it is almost as bad as the pain.

7TH

Last weekly B12 injection today then they go to monthly, this one stung like the rest but not for long. I have still got very sore eyes. I went to Pilates I think I am getting better at most of the exercises and I even manage to relax.

8TH

I pulled my neck by looking up to a shelf, the pain shot to my head like a knife being thrust in it, also the pain went down my arm temporarily paralysing it.

9TH

Physio today Wietse did usual I had 13 needles in total around head, neck and ears the average being 10. Wietse massaged my neck and shoulders as they are very tight it really did hurt he kept stopping to get me to breath. The muscles that are causing the problems and pain are called the TRAPEZIUS muscles.

11TH

My neck feels a lot better as not as stiff but it is still painful from massage. Pain levels are up a bit today mainly shoulders, but knees and elbows hurt as well.

13TH

5 years today since the fall it is 3.45 am I am in a lot of pain I am just sat here crying wondering why all this has happened to me. Was I so bad in a past life and this is my punishment or am I just bad ? I slept less than normal I just laid there thinking how it used to be. Paul and I went to Mapplethorpe for the day I needed to do something, it was a good day walked too much and paid for it later with a lot of extra pain but was enjoyable and it took my mind off other things.

15TH

In town today, the scooter always make my shoulders hurt. I have double vision while reading or watching television not too good when I see two of everything this makes it very difficult to read and look up phone numbers. The TV I am not too bothered about.
I leaned forward in the cupboard and bashed the top of my nose causing it to bleed. Pain levels are up a bit more about 6-7 I think this is because of the hot and stormy weather we are having. All this lovely weather and I am in too much pain to enjoy it, but that's RSD, always out to get me. I had a lay down and felt a bit better.

16TH


Not a good nights sleep again, because of the pain took H CODEINE. Physio again Wietse did acue without the electrics. I had a good talk to him he said I did not look too good and need to go to bed every day for hour to rest or I will end up in hospital again. I feel like I have bean thrown from a tall building everything hurts.

18TH

My hands are dropping things mostly the right one I think the carpal tunnel is playing up again I have spilt a lot of hot drinks, mostly on my legs. I am still in a lot of pain with the right wrist. Where I bumped my nose is swollen and sore also my eyes are swollen and dark.

20TH

Doctors today, he has stopped water tablets, they seamed to have done there job. He will restart them if ankles and legs swell up again. I asked him about double vision he thinks a side affect of tablets or exhaustion, I have had a recent eye test so its not actual eye problems. Bad spasms in my feet and legs in the night and early morning.

21ST

A kind lady has given me a magnetic bracelet to try for pain relief to see if it helps, you never know it might I might have hit on a cure if only it was that easy

23RD

The pain is going down again back to about a 3-4. So I feel a lot better. I looked after my grandchildren for the afternoon we made pirate hats and coins. They also had a sword fight; I think they had a good time I did.

25TH
While its still good weather, I did a bit more gardening. I have bean wearing a wrist support on my right wrist this helps it. I had a lay down, you never know when Wietse is watching. I always feel more tired afterward. I am still not sleeping any better during the night. Paul has gone to Wayne's for a few days to help him do some decorating so its just me Andrew and Sandy.

27TH

Last night I took of my blanket guard to see if my foot would stand the weight or go into a pain and spasm session, guess what I went all night with it off no extra pain and just a few spasms. The quilt felt a bit strange, as used to a tunnel affect and cold feet in winter. I still have a lot of pain in right wrist. All my joints ache, I hope I am not getting something.

28TH

Again left off guard but this night woke in pain moved foot around a found a better position but did not sleep much. Had a lay down in the afternoon, but feel quite tired as I probably only got about two hours sleep last night..
Pilate's, I have found that I can do the exercise that involve just one movement any more my brain just seems to shut down and I have to stop and restart but I think it will get easier I can only hope.

31ST

I have put guard back on my bed as foot is playing up without it. Pain level are still fairly good but I am having pain spikes quite a lot. Physio again, Wietse did normal acue no electrics, he said I locked a lot better than last time. I told him I was going to bed every day for an hour he was pleased with me.


Well that's July gone, I don't know what happened to the very hot weather we were predicted for the whole summer but never mind. I hope every body is enjoying some good weather and alot less pain.

Love Gill.

Five Years 3/3

Continued from 2/3

PEOPLES ATTITUDE'S

RSD is not heard of much, so when I tell people what I have got, some are numb struck especially people that have know me a long time. Some people are very strange towards RSD whether its because they are afraid or just don't care I don't know. Some ask me how I am, and then tell me about them selves or other people they know, before I have time to answer.
Friends and relatives who used to come now no longer do, for one reason or another.I get a lot of so called promises of help or relaxation times but they are not always kept and I am let down a lot. Sometimes it feels like my only true friend is Sandy, my dog. A lot of my running friends still keep in touch.
I used to be know as Gill the runner, now, Gill with the RSD. Comments like you should be used to the pain by now have all so bean said. I was told I did not like this person doing an activity because I could not do it my self. Told the RSD was caused by running and if I had stopped when told I would not have got RSD, I was not told to stop running. ANY BODY can get RSD though falling or an operation ANY BODY. Told I did not know what pain and suffering was as I was not old enough. RSD is one of the most painful condition there is. Once I was told quite rudely that I should not be in a shop on that thing (my scooter), comments like that can really hurt especially if I am down. If I went to bed at a normal time I would sleep, NO I would not I have tried. I go to bed between two and five am, mostly about four. When I so tired I usually sleep but not for long.
I was called a cripple, that really hurt. When I am in my wheelchair people talk to the pusher and not me as though I am are deaf or stupid. Some times people look at you and say there is not much wrong with you as I don't give in many times and carry on much the same when I can. Probably if I sat down all day or spent the day in bed or really played on it like some, people might think differently, but I am not like that. I need to be doing things if I can, if not, thinking about doing things

SUMMING UP

My RSD is most likely here to stay but there are things to help your self, like trying to remain positive enjoy things when you can. rest when needed, ignore people who think they know better than you, manage it the best you can after all who knows it better than you. Take no notice of people who don't care.
People walk away from very bad car accidents with hardly a scratch, I was so so unlucky to get what I did I did not deserve it. RSD is a very lonely disease as you are unlike to meet someone with the same, I can feel so isolated at times. With cancer there are so many people that have got it, or recovering from, so there is a lot more help and support.

Well I hope this better time keeps up and the pain stays low.

Love Gill