RUNNING ON MORPHINE

3rd December

At this moment in time I am in a lot of pain at least 6+(out of 10) from just about every place possible, very cold legs going into spasms. Dizzy most of the time with a really bad head. My IBS has calmed down a bit but not as much as I would like it to.

4th

Physio today, Wietse and I talked about what has bean going on the past few weeks, even though I see him every week we often don't talk about RSD. I always tell him when tablets are changed or added to. I told him about my stomach, fine till I eat we both agreed its the dreaded IBS, maybe doc can give you some thing extra for it I said I would go next week.

7th

Today would have bean my Dad's birthday I still miss him very much if not more than I did. Life is so unfair.

Docs today. He has given me MEBEVERINE tablets to take with the rest for the IBS flair up they should help. Blood test next week and a DEXTER SCAN very soon. I told him the RSD has probably spread he said he was sorry but try to stay positive.

8th

Today I went to Tommy Lee's first school play it was lovely and it mostly went to plan.
To night we ( another member) are going to Pilate's in a different place (we are getting as lift with the teacher) as numbers are now down at the usual place, its the same teacher, the class is a bit more advanced than the normal one but we only need to do what we can, the session was very good and the different moves were challenging but good I managed most even the standing up ones. While another class was being taken we went for some chips they were extra good. It's the same fish and chip shop I used to go too when I was at secondary school in the village of Welton, all in all it was a good night. I was very tired as it had bean at eventful day and a long one.

10th

Wietse Day.
Physio today we talked about what the doctor had arranged for me. I had the usual acue. I asked Wietse if I could do a Santa fun run. All the runners and walkers dress up in Santa suit and beards. I did run, well sort of, with a friend in October I did not mention it to many, as I was afraid it might not happen again, also I did not want any pressure from other people like asking how I am doing. and I did not want to get my hopes up I feel now I can try again, as it is less painful to run than walk. He said yes so long as I am sensible and not to do it if I have a bad day progress at last?
Straight to Jay-Jay's school play, it was very funny and I enjoyed it a lot. Later on I felt very tired - another long day



RACE DAY




13th

Well today is the day I try to run. I have on my old running shoes last worn, for running for a race in 2004 and an active ankle support on my RSD leg, it should stop me from going over on it, its a 2.2 miles one so a short one, I hope. The day is sunny but cold so just about right. We all stand there waiting for the start, my husband Paul is doing the walk, then we are off. There are a lot of runners, 1500 in all. I needed to look where I was going and try to run; this was going to be hard.



Me before the race.


I started on the first lap, my foot does not bend or move from the foot its self so all the movement comes from the knee. Its a different style to say the least. I am pleased, no more than pleased I was running in a race the second lap was easier than the first. I got round in 27 minutes 29 seconds. I did not stop the whole way as I knew if I did my hips would probably sieze up and I would have to stop. When I finished I just gently moved about. I received a medal the first one running since 2004( I have some I got when on crutches for 3 years) I was in tears as I did not think I would ever do this again. It felt so good. Could this be the start of a better stage in my life. Paul also finshed the race.


Paul and I.


So pleased pleased to finish.



14th

Ham strings feel a bit tight and I ache a bit but not as much as I thought I would, on the whole I am on a high.

15th

Today I have a blood test. The nurse tried twice to get blood it would not flow, she asked another nurse and she was successful. My arm was a bit sore. My neck is very tight with shooting pains from the bottom of my neck to the top of my head very very painful.

16th

Pilate's again at Welton last class this year then I will find out where it is going to be after that. Again different moves some I could do, some I could not. Chips again, a good night.

Physio Wietse was very pleased that I had a good Santa run ( my son Andrew has christened my run it a RALK a cross between a run and a walk).

He did the usual acue and a massage on my neck and shoulders, the pain was crippling, and he had to keep stopping as I felt like the room was spinning. He said my neck was very tight and swollen the muscles were pressing on the nerves causing the recent pain. Andrew came with me today and watched and talked. Wietse was singing and smiling while he was doing the massage, he was very happy. He said I would feel the benefit in a few days I certainly did not at the time. I felt bruised and sore.

2oth

My neck and shoulders feel like I have bean beaten with a baseball bat. Went to the Running Club cross country; I go to watch I wish I could join in. It's a very cold day with snow.

21st

Today I took off my blanket guard (it keep the covers off my sensitive foot) to see how my foot will react without it. When I first got into bed it started to play up, pain and spasms. I thought I would give my foot a bit of time to adjust. Luckily it did and the pain and sensitivity went. I dropped off to sleep only to be woken a hour later in pain, again I waited and it went away. Not bad for the first night.

23rd

Doctors today. The results of my blood tests are good, iron levels are good for me, so no iron tablets needed. As I was getting my scooter out the house, I slipped on the ice and started to slide backwards with the scooter heading for me, I managed to stop with it resting on my feet still sliding backwards with the weight of it. I think it weights twice what I weight. I dare not move if I had I would have slipped off the kerb, closely followed by the scooter which would have landed on top of me. I would at least broken my ankles if not a lot more ( I have osteoporosis). Luckily a neighbour came out and rescued me. I was shaken up but played it down. Blanket guard still off foot still creating.

25th

HAPPY HOLIDAZE

Christmas day its very cold and frosty. Some very nice presents and a good dinner but a quiet day on the whole tomorrow however will be the opposite.

26th

Wayne my son is coming for a few days so it will be nice to see him. Lindsay my daughter and her kids, Jay-Jay and Tommy-Lee are also here for the day so it will be very noisy. Wayne got them a scooter each so they spent much of the day charging up and down on them. A real good but tiring day. We all had a very good tea cooked by myself and Lindsay. Much noisier than yesterday

29th

A lot of burning in the heel of RSD foot, all my joints ache. It may be its tired as I'm not sleeping any better. Bad spasms in legs in the night. I have now put on my electric blanket it's very nice when I get in to a warm bed which I hope will help with my foot. Blanket guard still off nearly put it back on as pain was worse, but its a small step forward if I can keep it up. Temperature changes have bean all over the place and not a lot better but there is always next year to improve.

This year has bean very mixed with things looking up then going very fast down again but maybe thing are changing for the better especially as I have had a small run. I don't like to look too far ahead as its usually brings disappointment but it would be lovely if I could run again. Five years ago three things I loved were taken away from me I thought they were all impossible to get back, so if I could run I would at least get one back.

I would like to wish everybody a happy new year and hope it will be a better one, may even a very good one.

Love Gill.

UP BUT MOSTLY DOWN

In the garden be for fireworks - Tommy-Lee

Me

Jay-Jay and Tommy-Lee



31st OCTOBER/1st NOVEMBER

Tonight my family and I went to our local football ground to see the fireworks display. The short walk there was enough to set off the pain in my shoulders and neck. On arriving we sat down, straight away I felt the vibrations from the band it did not help the pain at all. The fireworks were really very good, its a pity I was in so much pain and I could not move my neck very much.


Jay-Jay and Tommy-Lee.

Fireworks

More fireworks

Watching the fireworks

After the display we all walked home the pain was so bad, on arriving home extra, extra tablets and a lay down. As usual a good night was spoilt by RSD. Eventually the pain subsided and I was able to have a hot dog and peas. The boys enjoyed it, squeals of delight everytime a loud firework went off.

3rd

Pilate's
I felt I did not really achieve much as everywhere seemed to be painful especially in my shoulders. After the pain, spasms started, then pain again. After a lot of extra tablets, too many the pain calmed down a bit enabling me to go to bed at 4.30. Most of the night was broken by spasms or pain.

4th

Doctors today I asked him about the pain he increased my GABAPENTIN to 900mg a day at this rate I will be back up to what I was on be for. I told him I did not think the extra OXYCONTIN had done much to help the pain. I am going to try the extra GABAPENTIN for a month to see if any improvement.

6Th

Physio usual needles shoulders are very stiff.

7th

Paul and I are going to another bonfire and fireworks tonight. A proper one with an actual fire. I should be alright tonight as not as much pain. We all walked the short distance to the field even be for we got there I was in pain again so much for a better night. I think it might be some thing to do with the cold air? Again it was a very good display and the bonfire was very warming but spoilt again by pain more extra tablets.

8th

Dentist today everything okay, while I was in town I decided to see if I could get an eye test I wear glasses for distance so not all the time . I was able to get a test, while waiting I talked to one of the ladies she noticed my glasses were a bit bent, ( there are the bendy type virtually unbreakable memoforme, when I first got them I broke them in three days) I said I usually have them on a cord she said that usually bends them. As I sat waiting for for the test I looked at my glasses and just bent them back they broke in my hands, as they were unrepairable I had to have some more £274.00 worth I get transition's lenses as my eyes are sensitive to bright light.( They go dark and clear sun glasses and glasses in one). This was a bill I was not expecting. Also my eyes were unchanged so had not my glasses broke my bill would have been £25.00. Quite a day.

9th

I went to see one of my friends today it was his birthday 87years old, he said he did not know how many birthdays he would have left, not like me you would have plenty more to come. I said I did not know if I wanted many more with all this pain, he said was it that bad. I said most of the time it was. The good days are few, the bad plenty. He said chin up darling I know there are a lot worse off than me with but at times the pain really gets to me .

13th

I went to see my sister in law Pam and brother in law Malc, Pam now has had her titanium plate fitted in her head she had a massive stroke and brain hemorrhage a year a go and had part of her skull removed because of the swelling she did not have much chance of recovering, she is doing amazingly well. She is able to lift her leg up and down take a few steps and move her hand slightly. I feel quite guilty because of what she has bean though but on the other hand she is not in any pain, its the pain that is the worst thing with RSD I think most (if not all people) with RSD would agree.


16th

I have got a cold bad head feeling rotten body is very sensitive my hips are bad clicking and locking at times, quite painful at times I could do with out this. My knees are also bad. Here I am 54 years old and my main topic is pain. What would I give to be back how I was five years ago when I had a life.

19th

Today is not a good day for pain my whole body hurts, my right shoulder feels like ants are running over it, my foot is swollen and very sensitive. When I try to walk to relieve my shoulders my hips hurt. When walking to help my hips, my shoulders hurt. Which ever way I walk I am in pain. My hips are bad, laying on the floor doing some exercises my right hip locked and I could not move, when it did give way it clicked loudly like it had bean dislocated. My left foot, my good one has bean hurting it probably feels left out its about the only part of me that has not had a lot of pain.

20th

Physio
I asked Wietse about my hips he showed me some stretches to do. He thinks it is the way I walk and the osteoporosis to blame, which could be getting worse. I am to see my doctor about it, he will probably do another Dexter test to see how the osteoporosis is doing. I have to have a full blood test as well to check on iron levels and any other levels.

22nd

It is five years to day since my dear Mum unexpectedly passed away. I was told after the first few years things would get better it has not. With Mum and Dads deaths being so close together, eight weeks apart, it was too much to take I think if I did not have RSD I could have coped better (having only beaning diagnosed a few weeks before) f *** RSD.

24th

Temperature changes have bean extreme one minute red hot all over then cold. Wietse thinks some is RSD, some the change. I have come off CLONIDINE and did not really want to go back on it side effects cause stomach upsets, it is also a drug not to be on long term. So I am putting up with them hopping they die down or even go. To day I have a lot of pain in my right foot and both hips, I creak like an old woman and most of the time feel like one.

25th

Went to the crematorium to see my Mum and Dads place of rest. I have bean having a battle try to get some sort of memorial for them like a seat or plaque but it has bean no go so far had more or less given up. I spoke to a lady she works there who told me I could buy a little plot where we could all go and lay flowers, also we can have a stone put on, it will not be where they are laid to rest but its good all the same. I learnt more from this one person, than I have in the last five years from all the others put to together. She even showed me the plots that i can have, and where my Mum and Dad were laid to rest also my brother. I thought as did all my family, there ashes were scattered, they were actually buried. When I had bean going to visit them I had sat on a seat just a few yards from where they were. The day was very upsetting but I felt better over all as I had at last achieved something.

27th

Physio
Wietse put usual needles in. I told him I had bean having pain in my arms like the pain I have in my foot and shoulders. He thinks may be its the RSD going there as well. When will this stop? Pain levels have varied from 5 to 10 over the last few days. I have not had many good days. Are they still to come?

30th

A couple of dare I say it better days I even slept last night for about four hours with out waking up( 4am to 7.45). Less pain but still enough I think when the worse pain goes, other pain that I don't usually notice comes out as be for it is hidden by the stronger pain. I feel like I have to suffer a tremendous amount of pain to be able to have a few good days, is this some kind of punishment?

I can hardly believe its nearly Christmas the weather has turned very cold with a north wind may be snow is on the way, I like snow but if its bad under foot I wont be able to get out.

Hope you are all as well as you can be.

Love Gill.

GOING FOWARD IN REVERSE

October 1st

Today I had my last monthly B12 injection now I can now go a whole three months between them and this one did not hurt too much. I have a lot of pain thought out my body today and bad spasms. I have taken far too many extra tablets, but still the pain does not seem to want to go.

2nd

Physio Wietse massaged my shoulders and neck he had to keep stopping because of the pain. Usual needles. After the session had finished I had to lay down for a while as I felt dizzy and light headed with the pain. After a rest I was able to leave. The bus journey was very bumpy causing yet more pain. On arriving home I had a lay down, but did not feel much better. Bed about 4am just as I was dossing off to sleep a house alarm went off, it kept stopping and starting the rest of the night I got less sleep than normal.

5th

The pain has lessened a bit but still far too much. I feel very drained my hip is bad, so is my foot sending a shooting pain from my toes up my leg every time I put it to the floor. Also my ear is playing up high pitched squeal and pain, dizzy on standing. Just about had it with all this pain but what can I do?

9th

Physio again Wietse said my neck and shoulders were very tight he massaged them it was very painful yet again. He reminded me about the breathing try to breathe the pain away I said it was not easy to do sometimes, he said I know, but try to keep smiling.

10th

Today is the running clubs annual race, The Ducks and Drakes, ten mile off road. I went by bus as Paul had gone earlier to help with the car parking. I realised after a while I was stood in the wrong place to catch it and had to walk quite a distance to get the right bus stop. Once there I had a few words with a few running mates then I went on the banks to watch. Later I gave out the memento bags for finishing the race. This lasted till after dinner then I went to a meeting about herbalism and reflexology. It was a very interesting talk which was recommended to me by my Pilates instructor. I bought some sleepy time tea, well you never know. Later on I was in a lot of extra pain I think I had done too much and as usual paid the price. Lucky I got a lift home and rested for the rest of the day.

12th

Early hours of the morning I took my sock off and my foot and leg were wet through with sweat even though my foot and leg were ice cold this is the first time this has happened.
Doctors appointment he has increased my morphine(OXYCONTIN) to double what it was (20mg to 40mg a day) we both think this is for the best as I am taking too far too many extra tablets and will have bad side affects from them as well. I was disappointed as I did not want to go higher but I think it makes sense for now. My CLONADINE all so has bean stopped to see if I can cope with out it as temps swings are improving.

13th

Pilates I had a lot of trouble trying to cope with the exercises I could not get my body to do what I wanted it to do. A lot of pain and creaking of my joints - not a good class tonight.
The relaxation did not go well either it made me feel very down, a lot of the others actually go to sleep I have never got anywhere close to doing that.

15th

A lot of hot red skin, I feel so itchy, its the extra morphine I think. Pain is bad it went down but is now back to its full evil. Hope the extra morphine will help.


16th


Physio I talked to Wietse and Michelle about how I felt he thinks the weather has a lot to do with the pain I am experiencing now. He said try to stay positive I said it was hard to do a few tears and a lot of talking, I felt a bit better. They are both a big help as I have no one really I can talk too. Usual needles and massage.

17th

Went to a birthday party a hog roast and Céilí (Irish social dance) it was very good and funny to watch the dancing I wish I could have joined in a bit but it was too fast. The vibrations from the speakers and tiredness caused a lot of very bad pain and sensitive body I cried out in pain when anyone touched me. I lasted the evening out at a cost I was in agony now getting full body spasms, the ride home was a killer. Very painful night.

20th

On the whole, pain is down to a more manageable level, not as much as I hoped when I started taking the extra morphine. But one I can just about cope with, still a lot of pain in wrists. I am dropping a lot of things, they just slide though my fingers. Had a small bump, fell towards the door leading in to kitchen, grazing my face same side as before (MAY accident fall) so very sore bit swollen.

22nd

Physio again Wietse put needles in ears,neck,shoulders and right hand to try to ease the pain in wrist. The one that went in my right hand felt like electric shocks that made my fingers tingle. He only left them in a short time. They were very painful. The ones in my neck and shoulders were left in longer. I asked him about the high pitched noise in my left ear and dizziness, he thinks it might be tinnitus and to mention it to my doctor. He took out the rest of the needles, then massaged my neck and shoulders. The pain shot down my right arm to my fingers the same pain I had got in my hand when the needles were in. He said my muscles were not as tight as last week. I left in quite a bit of pain, with strict orders to rest. The journey home was very painful and I did as I was told and had a lay down. Later that day the pain levels were higher than normal 6-7 spiking to 8 at times. My foot was about at its normal pain level.

24th

Bad day, head really pounding, slurred speech, double vision, sensitive in most places and very wobbly on my feet, not a good day. My right ear is swollen from the needles. Lindsay and the boys came round which did not really help but I love seeing them. Slept for just over an hour in bed.

26th

On the whole I feel a lot better but have a sick feeling in my stomach. A sudden sharp pain made me have a quick dash to the bathroom, where I renched for a few minutes but was not really sick. After about 20 minutes I felt a lot better, may be I have picked up a virus or something. Skin still feels itchy body temperature up and down.

28th

Good night sleep for a change I slept from 4am to 8am without waking up. My son Andrew and I went into town to do a bit of shopping. We manged to get every thing we wanted, it was a very enjoyable day, but as usual the RSD is not far away, pain and intense tiredness took over. On returning home I had a good lay down. On the whole a lot better day all round.

30th

Physio Wietse did usual needles they did not hurt as much this time. No massage today.



This last month has bean very much up and down. The RSD seems to have to go to the full pain level to almost as to remind me its still there, not that I need much reminding, to calm down again to a more sociable level. The weather I know can very much affect it. I am not really looking forward to the cold much. I used to love winter.

Well thats October gone - another year all most gone.
I hope you are all in good health and have not got too much pain.

Lots of love Gill.

SEPTEMBER SPASMS

Well here we are in September already nearly another year gone, most of it to pain and let downs.

September 1st

Today I have more left hip hip pain than usual. Both my wrists are bad the right one especially things seem to just drop through my fingers - I have dropped a lot of things today. I went into town so I am more tired than usual, where have the days gone where I could just keep going and not really be tired? Pilate's later on was good though, and made me feel more relaxed I am getting most of the exercises right and enjoying it a lot.

2ND

Paul and I are going to Twycross zoo today with my daughter Lindsay and my grandsons, Tommy Lee and Jay Jay.




The journey was not too bad even thought it seemed a long way. There was lot to see. The monkeys were very funny and kept chasing each other and kept putting a hat on.







We saw a baby elephant that no one else had seen (well almost) only a few days old it was very sweet and was being fed with a bottle. Tommy and Jay Jay really liked this. As we walked my body got tighter and stiffer. We stopped for dinner and had a rest while the boys played on the play park.


I took extra pain tablets and used BIOFREEZE to stop the pain from getting worse. After we were all full we carried on, seeing giraffes and other animals. By now I was in a lot of pain, every step was torture and more painful than the last. Pain level of 10 plus or more. I put on a brave face as not to spoil it for any body else but it was so hard. I took more tablets, it did not seem to have any affect on the pain. All too soon it was time to go (not too soon for the pain - I'd had enough). The journey home was very painful, I felt every bump. On arriving home about 5 pm, I took yet more tablets, I rested as much as the pain would allow, it just would not go. It had gone to the point of no return. I finally went to bed at 4.30 after taking a total of 16 extra tablets the pain now was bearable. I did not have a good night but that not unusual.

3rd

Physio today Wietse did the same I told him about yesterday he asked how I felt now I said very stiff and achey. He hoped the pain would calm down soon he had a bad cold so did not feel too good himself. After physio I came home to rest. A few more extra tablets so the pain did not get out of hand

4Th

I feel so stiff today my whole body is trying to spasm up. One good thing I have noticed that the temperature changes have been much improved more cold than hot, so that's one thing that better at least. At the end of the day my whole body aches and feels very weak, a good nights sleep would help if only I could.

8Th

Pilate's again we did some different moves my joints creaked like an old lady. Still very stiff and a deep bone pain. Later that night my right foot swelled up all along the heel to the toes they looked like fat sausages, it was very painful to walk.

10Th

Doctor today I told him all about my pain, he thinks it could be the OSTEOPOROSIS playing up he said the pain will come and go it does from a 3 on the pain scale right up to a 10 very suddenly. He said I can reduce the COLNIDINE to 1 morning 1 night half the dose to try, also my IRON can be stopped to see how things go. I was pleased about that one as it has a bad affect on the the stomach. I told him about all the bloating I have he said try CHARCOAL BISCUITS. it should help. I will have blood tests later on in the year. Body still stiff and painful but not as bad.

11Th

No physio today; Wietse not too good, Went into town instead on my bike thought it might help to release my stiff joints. I could not get CHARCOAL BISCUITS. I order from a catalog for vitamin's so will get some tablets from there. I feel a bit down today thinking about the past, mum and dad the accident, and how it should have bean.

13Th

I watched part of a film about running it was called the LONG RUN its about a girl being trained to run a marathon, by a man, who usually trained boys, in the time when girls were not considered to run very much this man did not give up. During the race I became her, my heart was pounding and I was shaking, when she nearly gave up I shouted at her to carry on. She ran the race and won, a complete outsider. 2005 I was hopping to run my first full marathon it did not happen and I felt cheated, I seam to get all the shit while others get all the good stuff. Life can be so unfair. I miss running so so much you would have to be a runner to under stand this. I have bean thinking about my Mum and Dad I miss them so much it hurts, bit of a down time.

15TH

My body feels like it has bean hit with a baseball bat I don't think there is much of me that does not hurt. My foot and shoulders are burning hot, but ice cold to touch. Electric shocks shoot across my shoulders and neck making it very stiff. I feel very tired but can not settle to sleep. Lot more spasms than usual. I have taken far too many tablets for the pain but it still continues striking back what more can I do. Most people would be out for the count with strength and amount but it seems to work opposite by keeping me awake.

17TH

At last a better day a lot of the really bad pain has gone and I am left with the usual every day pain which I can cope with better.

18TH

Physio Wietse did usual acue He gently held my foot and massaged it did not like it one bit and straight away went into spasms. He asked me about my knee which had bean too bad, he squeezed it and to my surprise it really hurt. He continued to massage it, while I was talking to Michelle he made a surprise attack pressing hard I said that was a bit mean he said it was a bit grinning. My son Wayne is here for the weekend so that will make a nice change. I have now started taking CHARCOAL TABLETS two a day as advised by my doctor hope they help.

20TH

Today its the turn of my joints to hurt my left hip creaks like an old lady's my knee keeps sending a shooting pain though it and both my wrists hurt. I decided to go with Paul to take Wayne back to Halifax. I don't usually go as it can be too painful traveling. I had not seen his new room since it had bean decorated and also wanted to see his cat, Timmy. The journey was not too bad till Paul had to stop quickly making me shoot forward, almost like whiplash. My neck shoulders really hurt after that and got stiffer and more painful as we went along. At last we arrived time for a rest and cup of tea, a play with Timmy and look round his room, which looked a lot bigger and a lot nicer.

We all went for a meal a Toby Carvery, where you help your self, by this time I felt quite hungry as I had not eaten much over the last few days because of all the extra pain, it was very nice. On getting back in the car I put my bad foot down too hard and caused excruciating pain to shoot up my leg. Pain scale 10 ++++. I could not speak because of the pain and kept breathing deeply to try to take the pain away. After what seemed a very long time the pain did die down. Not such a good journey I remembered why I don't usually go.

22ND

Foot still a bit sore all most as it has had something drop on it but better than it was. My wrists have bean playing up a lot recently and I have gone back to wearing the night time splints. The pain seems to be worse in the morning and last thing at night.
Palates I have not bean for two weeks as not too well last week. My joints were a bit stiff and kept going into spasms, but still very enjoyable. I am sure Pilate's has helped me with my balance as a lot of people have told me I am walking better.

25TH

Physio again, I asked Wietse why he has not done electric acue for a while he said it would up set the nerves at the moment he will just keep on with what he is doing. He massaged the foot again it did not complain as much this time but still went into bad tight spasm's.
Much of the pain still persists but I suppose that's life with RSD. Wietse said little steps, one day at a time see you next week be good.

26TH

Pauls birthday we are going for a family meal later tonight. Russ came round, he helped me to put together a chest to keep the Wii games and controllers in, well he really did it on his own but I passed the screws and kept looking at the instructions to make sure it was right. I had planned to do it on my own but it came in more pieces that I imagined. He made a good job of it. The meal out was very good two lots of pudding plus ice cream. I deserved it who told me so, I did.

28TH

In town with Paul I walked too much and paid for it later my shoulders are so tight and painful. More extra tablets. My foot feels like it is on fire but apart from that I am not too bad. The splints seam to be working at night. I wish I could have a magic spell to make me sleep. I feel so drained all the time. The nights are so very long and lonely but it is sleep time for most people, may be one day it will happen. The more it goes on the more I think it will never be a normal night ever again. The pain seems to be in more different places plus the usual ones. Not a good month for pain.

29TH

Cleaned all down stairs, and painted the Wii chest, no not painted - varnished ( Paul said) but you use a paint brush. Any way whatever its called it looked good, did it all on my own this time, unless you include Sandy (my dog). I am having a lot more temperature changes than normal hope its temporary.

30Th

Was woken very abruptly by extreme spasms in my left leg; the good leg. I shot out of bed at lighting speed trying to stretch out my leg as fast as it released it spasmed up again with trying to release that leg the other one joined in. What a start to the day things can only get better cant they?! The spasms finally loosen leaving both legs very stiff and painful to walk, When I took Sandy for your walk I looked like a drunk as both legs did not seem to know what to do. TIGER BALM has helped a lot so have IBRUES.

Well another month gone and probably summer as well but we have bean having a lot of warm days. Maybe next one will be better for me. It could be a lot worse though.

Hope you are doing better and pain is less. Bye till next time and thanks for the emails, I always reply.

Love Gill.

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

Five Years 2/3

Continued from 1/3

PAIN

Yes there is lot of pain, different types nerve pain which burns like a fire from within that can strike at any time I think this is the worst pain. Muscle spasms are also very painful and can last days. If I just turn my neck a little too fast it can result in lighting pain shooting down my arm or arms sometimes actually paralysing temporary often the pain shoots up into my head and there it will give me one hell of an head ache. Then there is the every day pain which never goes away just subsides when it feels like it. All the pains can combine to become a living nightmare it often does. There is pain if somebody holds me just a little too long or tight. Pain that starts else where other than my foot, like if I hit my head or hurt my knee will often make my foot join in as it does not want to miss out.
Vibrations, bus journeys, scooter trips, cold, heat, noise, touch, weather changes and draughts can and will make it much worse. One minute I can be fine the next in extreme pain putting me in hospital this has happened many times three times at least at physio. My body just shuts down if put under too much stress or pain.
Once when in hospital last year, I had such severe full body muscle spasms that they lifted me off the bed, this went on for two days I pleaded with them to knock me out they did not. they just gave me more pain relief DIASAPAN was one of them, resulting in tripping out, pretty colours, far far away.
A minor illness can make things much worse and can take a long time to recover.
In RSD a pain scale is used, called McGill pain chart, where it is rated one of the highest there. Most of the time my pain is 7-8, ( on my scale) 10 being the highest, at the moment the pain is 4-5, so a good period. The pain never goes away but hangs in the back ground ready to pounce when it can. After time in hospital it can take a long time to recover and regain my strength. Another thing RSD does is extreme body temperature changes, one minute cold (I am mostly cold) the next sweating and red hot then freezing cold again. My foot is very sensitive at times to touch or cold drafts, noise and vibrations, at one time I could not where socks or even the softest slippers but fought the pain to where them again. My first physio told me RSD was like a spoilt child you had to control it not the other way round. I think there is a lot of truth in that. I have a cage on my bed to keep the quilt off my foot, this I have had since the first few weeks, I removed it once but the pain was too much.
I use a mobility scooter a lot of the time with a wheelchair when I am really bad. I can walk quite good on the better days.
I went to pain clinic but all they seem to want me to take more tablets. I tried Guanethidine blocks they were so painful I did not finish the course as it caused me more pain than relief. also tens machine this seemed to make it worse putting me in hospital on weekend away. I tried the MS therapy tank, the Hyperbaric oxygen chamber, this worked to a point but affected my ears and head very badly my body also had problems coping with the extreme temperature changes, again putting me in hospital.


MEDICATION

Oxycodone for pain at present 20mg at one time Up to 120mg a day.
Gabapentin for pain up to 600mg a day.
Dihydocodeine for pain up to 800mg a day.
Ibuprofen for pain up to 2400mg a day.
Tizanidine a muscle relaxant 12mg a day.
Ibandronic acid 150mg a month for osteoporosis.
Calcium carbonate+Colecalciferol 3gram 20mg a day for osteoporosis.
Clonidine 50mg micrograms a day for temperature changes.
Ferrous sulphate (iron) 400mg a day for anemia.
Omeprazole 40mg a day for protecting stomach from tablets.
Furosemide 20mg a day for water retention
Ibuprofen gel as needed for pain.
Peppermint oil 0.6ml a day for ibs.
Sno-tears 10ml for dry eyes as needed.
Vitamin b12 injection 1 a week for 3 weeks, then 1 a month for 3months, then every 3 months for low vitamin b 12. these are for life.

I all so take Multi vitamins+probiotics
Ginkgo Biloba 600mg
Siberian ginseng 600mg
Vitamin c 500mg
Cod liver oil 400mg
All these are one a day
I use a lot of white Tiger Balm that is so good for pain and muscle tightness.
I also use Bio Freeze that is stronger and makes every thing cold but it also works very well.

On a good day I take 20 prescribed tablets, on a bad day it can be 40. I tend to alter the dose according to my needs, trying to keep in the prescribed dose as more make me feel ill and sick it is quite easy to over dose as all I want is the severe pain to go.

Before RSD I hardly ever took tablets for pain choosing to go for a walk instead.
I have physio once a week still, with the one and only Wietse, this helps I have up to 13 needles the average being 10, usually electric acupuncture, this does not cure RSD but helps in keeping it under control, sometimes. He massaged various different parts most weeks as the RSD is mostly all the right side now having spread, sometimes because I walk different my left hip really hurts. I had to come off crutches (2007) because of RSD spread to my shoulders and was in a lot of pain I missed them a lot as I could get round a lot faster.
I all so did races on them doing very well.
I was told it is highly unlikely I will be able to use a stick or other walking aids as it would make the RSD worse. My Fiibromyalia can be very painful. Some times its hard to tell what is actually causing what pain.



THINGS I HAVE NOW GOT SINCE RSD.

Carpel tunnel
Cronic fatigue
Fiibromyalia
Insomnia
Osteoporosis
Vittimun B12 diffiency
THINGS I HAD BEFORE

Anemia
Arthritis
IBS (Irritable Bowel Syndrome)
Raynauds


SLEEP OR LACK OF IT

I do not sleep more than four hours a night, l only going to bed when very tired ,exhausted more the word. I have tried various tablets but none seam to work or if they do make me feel like a zombie for the rest of the day.
One night when on zopiclone I took four tablets in one night as I was desperate for sleep I pasted out but still only slept for three hours. So after that, gave up on any sleeping tablets.
Day or night I fall asleep sometimes just for a few minutes even stood up or talking, as my body is so exhausted a lot of the time.

EXERCISE

I try to keep active when I can, either by walking or ridding my bike (when I am aloud by Wietse) I also have a cross trainer. I go to Pilate's and yoga at the present time. Some days it can be so hard as the pain can be too bad, but I am in pain doing nothing and sometimes exercise can help loosen tight muscles, it also has a feel good factor.
I also have a WII FIT which I try to use it can be good fun so long as I don't over do it.

To be continued...

Five Years 1/3

I can't believe its bean five years since this nightmare began. Well where do I begin, the beginning seems like a good place as any, so I will start there. It all began 13TH July 2004 no not Friday the 13TH, Tuesday 13TH, though a fall while running stubbing my toe on a raised ntl cover. It was a bad fall requiring an ambulance and four days in hospital. I hurt my hands, still got the scars my knees, still got the scars, my elbows still scars, my ribs, still got. My foot took a lot of damage resulting in a sprain at first thought this turned into three muscles tears which was later diagnosed as RSD, by my physio. I think the RSD set in the first few days after the accident because that's when my foot began to feel different even in the hospital my foot was turned in. Other changes took place, my foot felt like it was in a plaster, cold, sensitive, burning pain, blue and purple in colour at times. PAIN did I say pain I thought I felt pain, when I fell, this pain did not stop. Not being able to move my toes was all so a worry. When I was told I had RSD I felt some relief at first as I thought I was going mad.
The relief soon turned to horror as I was explained briefly about RSD. I was given a stick to help me get around. Physio did what she could, I was seen very quick I fell in July seen in September, some of the treatment I received was tens ,ultrasound and massage. All was very painful. I was prescribed TRAMADOL for the pain the first of my many, powerful pain relief tablets. A few weeks later I was given crutches (as I was leaning to the side with the stick), these I was on for three years. Only coming off them as the RSD had spread to my shoulder and using them was too painful. This slowed me down a lot.
After a while this physio felt she was not helping me and introduced me to Wietse, the one and only, he was to try acue puncher.


CLAIMING


When I fell every body said I should claim compensation at first,I was not bothered but as time went on and things got worse I decided to pursue it. I contacted a solicator who said if the object you fell over is not a inch high it is not worth going any further. I got in touch with another one who said the same. The cover I tripped over was 5/8 inch high. If I had bean able to claim it would have bean a good amount, but it was not to be to, the money would have softened the blow. There is an advert on television Lawyers for you that states after an accident they will get what you are in titled to, that really gets to me.

LIFE CHANGES Before all this I used to run at least twice a week plus races at the weekend also extra training when racing . I delivered a free newspaper, about 700 of them walked every where or biked. Some body once asked me when I would stop running I said when I don't enjoy it any more. I never thought the choice would be taken for me. I ran because I loved to run not for fitness or weight loss, just because I loved it so much. Over night all this was taken away it has bean so hard to come to terms with, honestly I don't think I have still. The sudden deaths of both my parents only eight weeks apart Mum a few weeks before Christmas Dad a few weeks, after did not help the RSD only bean diagnosed a few weeks before. I have had a lot of things go wrong health wise, before RSD, but fought back to be a stronger person but this was very hard. I was told once I bounce back from most things but RSD has yet to be beaten. Be for RSD I took so much for granted like just getting up dashing to the shops I could pop to the shop near me and back be for the kettle boiled, not now. Some days
I am in too much pain to stay in and too much pain to go out. I still do most things my self like house work, cooking and gardening which I love, but I stop and take rests if I need to. Shopping is hard as it is very tiring where as before I would have walked into town and back I now use buses or my scooter..

To be continued...

KNEE AND NAILS

JUNE 2ND

Tuesday night I went to Pilate's, my foot and leg kept going into spasms, so I had to keep stopping or not doing that part of the exercise. My face also bled a lot. (30Th may accident) Bed at 4.30. I am still awake at 5Am I thought the exercise would make me sleep, wrong again.

3RD

During the short night I was up at 8.30 my face stuck to the pillow so it bled again.
I had a go on the WII FIT at jogging, mines not really a run more like a lopsided sprawl.
It felt good though and I did get a good score. Both legs felt tight afterwards.

4TH

Physio Wietse was not that surprised when he saw my face as I was not too good on Friday when I last saw him. He thinks I probably had another blackout he did usual the needles hurt in my neck.

5TH

My legs are very tight and going into spasms its turned a lot colder so may be that why right leg is blue purple and swollen. I sorted out my running gear it made me cry to think I will never wear it again for running.I thought why me now I have nothing to aim for or look forward to. I can wear it for biking when I am given the go a head to do so. I have not ridden my bike since last September. I feel quite alone you would not think I would feel like this after nearly five years but I do.

9TH

Getting out of bed this morning my leg gave way and I dropped to the floor its happened before so I though nothing of it. My shoulder is tight and painful. Legs are both tight.
Pilates again I though the exercise would help the legs and relax my body, it did not seem to help. I walked down and got a lift back.

11TH

A lot of pain in my right knee, so much I have bean taking IBRUROFEN and
DIHYDROCODEINE up to 8 of each a day. Sleep is no better than it has bean going to bed between 3 AM -5AM and getting up 8-9 AM. I think I had another black out while washing up tea things as one minute I was standing up, the next I was slumped to wards the sink with my arms in the bowl and my sleeves wet, not knowing quite what was going on I did not hurt my self though. No physio this week Wietse is on a course I could have done with some massaging on my knee.

12TH

Went to a funeral today to say good bye to a friend it was so hard and it up set me a lot.

13TH

My knee really hurts it feels like my kneecap is in the wrong place if I walk in a way that my knee doesn't hurt my foot hurts. The top of my leg is very purple and cold I am thinking the RSD has spread some more, it is a concern.

14TH

In the early hours when most people are asleep I would like to be as well, I had a accident my leg gave way causing me to fall forwards the backdoor stubbing my toe, tearing off part of my toe nail, it bled a lot the toe nail still was attached by a little bit. The earlier accident when I kicked the ladder my toe nail did not come off.( Last blog.)

15TH

Another blood test requested by the hospital.
My knee is now very swollen and sore ankles also swollen my shoulder is all so pain full.
I went to look at a yoga class to see if it would be better than Pilate's I only went to watch but joined in the ones you could do seating on a chair I will be hopefully going back next week to join in properly.

16TH

Pilate's went for another session as 3 weeks was not long enough to see if is for me. My knee and shoulder stopped me from doing a lot but I managed a few exercises and the relaxation at the end, so it was not a total loss.

17TH

Went to bed at 5.30 AM
I did not sleep at all My knee and shoulder are bad but I don't think the pain kept me awake still taking a lot of IBRUROFEN and DIHYDROCODEINE I just did not feel tired.

18TH

Bed at 4.30 AM
I can't sleep any worse than last night, managed about 3 hours up at 8.30AM. Physio at last, Wietse to save me. He did usual needles then looked at my knee. He said it was twisted probably due to a spasm in the short night I have. He massaged it, stopping to get me to breathe, something I forget to do when in a lot of pain. He said the purple colour on my leg could be RAYNARD'S and may be not RSD. Something I had not thought about that. When I left my knee was throbbing and painful but I trusted Wietse so I know it would be alright soon.

19TH

Stormy weather I have a bad head it feels like it will split open. It is now very hot. I don't mind I can cope with the heat. Summer at last!?

22ND

Doctor for usual check and tablets . He said some of blood tests where back vitamin b12 was now too low, it had bean monitored for a while but has now gone down too much. Mine is 101, it should be between 170 -270, so I now need to start injections tomorrow one a week for three weeks then one a month for three months then once every three months. Other tests not back yet. Also given water tablets as he thinks I could be retaining fluid, as I have swollen ankles and legs. I do not feel to good today I think I might be in for something or it might just be the hot weather.
Late PM I felt very cold and not well I ache and have a bad head.


23RD


When I went to bed and slept I woke choking and not able to swallow, now very hot. I recover from that it has happened before (some thing to do with spasms in the throat). So I went back to sleep to awake wet through with sweat. My daughter came with me to the doctors as she was concerned as I was not well. While waiting to be seen I said knowing my luck, I have probably got swine flu. You should have seen the The look on peoples faces. The nurse gave me the injection she said it would sting, it did, but only for a few seconds. She said the injections were for life, something the doctor had not said. This is another thing I did not expect to happen, still waiting on more blood tests to come back I think next week.
I came home rested for the rest of the day my head was a real killer my eyes were sensitive to light and my throat was sore and my knee still hurt but not as much. Things can only get better. Paul (my husband) had gone to pick up Andrew (my son) from the airport as he and a friend had a few days in Amsterdam.

25TH

I feel a lot better today headache about gone. Knee is not as swollen as it was. My ankles and legs have gone down in size already and look much better. About six forty five, Paul was dreaming and kicked me very sharply on my bad foot, it woke me up and I screamed with the pain, it lasted for about two hours. Not too good as did not go to bed till gone five.


26TH

Physio again Wietse put in needles, the ear ones hurt today a lot. He did electric acue as normal. Toe nail has now come off.
When he took the ear ones out one of them bled but not the one that hurt the most he said it would bruise it did a bit but not too bad. Just after he took out the needles he made a surprise attack on my knee he just grabbed it. I said that was a bit mean , he said it was, just a bit.
My knee has improved but still painful he had to keep stopping to tell me to breathe something I forget to do when I am in pain. I asked about if I could ride my bike he said YES, but to be sensible.

27TH

Running club BBQ. It was a good night, no rain saw a lot of people I had not seen for a long time so that was good. There was cake, I had three lots. I would have had four but I don't like pavlova.

29TH


Pain levels are down at the moment about a three this is the lowest they have bean for a long long time. Maybe this is the start of better days or am I dreaming, no I cant be dreaming I don't sleep long enough.
Yoga tonight I joined in a bit more than last time but found it hard to keep up with the others, by the time I had looked at what they were doing and did it my self they had finished.
I will get better I hope.

30TH


Still very hot. I had my second vitamin b12 injection, this one stung for a lot longer.
The day has arrived at last I finely get to go on my bike did about two to three miles on it with Andrew (my son) to watch over me.
Pilate's again I did a lot better but foot kept going into severe spasms so had to stop on certain ones.

That brings me to the end of Junes entry, half way though the year all ready....
I hope you are all enjoying the sunshine and having less pain than usual.


Love Gill.

P.S





































This is the same drug (oxycontin) that I'm on so looks like I may have something in common.

[full story]

ROLLER COASTER




Wietse my very laid back friend and physiotherapist.




MAY 7TH

Physio again Wietse did the same as always, he told me not to move this time unless there is a fire or earthquake, or both. Needles in ears hurt more than usual. Brought Wietse up to date with all the changes and pain levels, he was pleased the pain was not as bad


10TH

I had a lay in today if you can call it that I went to bed at 5am and got up at 10AM. My foot is very stiff and tight, pain levels are up a bit 4-5 but that still good.

11TH

Full scale 10 +pain shot through my foot when I was putting on my boot it lasted about a minute its the sort of pain if some one handed you a gun you would use it on your self. The pain went just as it came, though out the day there were short bursts of pain on the same level. Its a very cold day so may be that's got something to do with it. My hand is still infected green stuff still ouses out it is still quite swollen.

13TH

I feel really bad today all my joints ache my head pounds, I feel very cold and shuddery but sweating as well I have most likely got a virus. Hope it doesn't spread to my PC . I have taken a lot of IBRUS and H CODEINE to help with the pain and to relax the muscles.

14TH

Physio - Wietse said I looked very pale I told him about all my aches and pains, when he put in the needles they hurt more than usual as the muscles seemed to stop them going in. After physio both Michelle and Wietse told me to go home and rest. Which surprising I did. Later on I felt very cold and had goose bumps on my legs and arms. My shoulders neck, knees, foot, in fact every where hurt. Bed at 4.30 awake a lot of the night with pain and spasms in most of my body.

18TH

Joints not as painful today, thank goodness may be the virus(?) is going? My body felt quite heavy but I was light headed. All of a sudden I felt very sick and wrenched a lot of times. I was not really that sick as had not a lot to eat all the same it made my stomach feel very sore. Though out the day I improved and by the end of the day I felt much better.

19TH

Today I went to my first Pilates Class. The lady asked me if I had ever done any like this before I said no. I could not even pronounce the name properly calling it paraletics. I decided to give this class a try as it was a disability class also I hoped it would help me relax and tone me. The class started I tryed hard to listen to her voice telling me what to do. I had to hold my self in, pelvis and bum and at the same time, breathe in and move my limbs then breathe out and still holding my self in, its at lot for my RSD brain to take in but I gave it a good try.All the exercise are done laying down or kneeling. The session ended with the mediation I listened to a tape tell me I was walking and going to a undiscovered place you are meant to totally relax as to shut out all other things, it did not happen this time. I will be giving it a month to see if my body will cope and to see if there are any benefits.

After the class Paul picked me up to go to the running clubs handicap (LINCOLN AND DISTRICT RUNNERS) at Whisby park it was a cold wet night. I was not sure if I even I wanted to watch as it is still hard thing for me to do as I miss running more than any thing. I manged to keep it together until some one shouted "HI MY PAST RUNNING BUDDY" the tears flowed, it was not meant to hurt me in any way at all, its just thats all I will probably be now. I mention it to the person and we hugged and talked, they said they had bean reading my BLOG and enjoyed it, as did a lot of the others that were there. The night was hard for me but I enjoyed it.

21ST

Physio again I asked if I could ride my bike now Wietse said not yet, get a bit stronger and as it may take too much out of me. I all so told him about Pilates he said it could be good for me try it and see how it goes. Usual physio.

Doctors appointment to see about tablets and for him to look at my hand (dog bite) its still infected he gave me some FUCIDIN cream as its only infected on the top.
I have had a lot of pain in my foot and shoulder also really bad headache but its very stormy so it might be just the weather playing my body up.

24TH

Did some gardening my foot was really pain full but I tryed to ignore it the best I could, a lot of pain in my knees also head still bad, shooting pain in neck. I feel very tired and drained. Very warm today.
My grandson Jay-Jay stopped the night and we went into town the next day, I got him more some new shoes as his dog Suey chewed up the last ones. He had a ride on the roundabout, and we did a bit of shopping. There and back he rode on the scooter with me, which he really enjoys. We both had a good day. On the way back I saw a dog that was not there I am seeing things that are not there a lot. Wietse said its because I am exhausted most of the time I need to rest more..

27TH

Burning pain in both legs woke me up very aburtly I have not had pain like this for a while. I have taken extra GABAPENTIN . Head a lot better now but a lot of pain in wrists. It never ends does it?

28TH

Lindsay my daughter and friends organised a fun day for the children at the local park I went along all the children were having a good time. Russ came down also, After a while I felt tired and my eyes felt weird so Russ and I decided to go home. On the way back I had a job to control my scooter my eyes felt so heavy I felt like I had bean drugged or drunk ( I was neither) I made it back with a lot of help from Russ stopping me from crashing in to things and going on to the road. I got back and rested. I felt a bit better later on but still not right.

29TH

I still feel strange but I will still go to physio as it helps my pain a lot.
Physio Weitse put in needles slightly difference place to hopefully help neck pain. Told Wietse about dog and seeing things he said its exhaustion I must rest more. I rested after the needles came out and even managed a few minutes sleep on waking I had a severe headache. As the session came to an end I began to feel worse Wietse Took me outside to get some air. We sat on the bench as I stood up I was very wobbly on my feet, and felt drunk again. Wietse got me a taxi and told me to rest and do nothing else today. I did not really feel much better for the rest of the day.

30TH

Early morning about 4am I was going to bed and some how I fell and hit the door frame in the bathroom grazing my face not too sure what happen, but I did not hit the floor.

31ST

My face is swollen and sore but my hand ( dog bite ) is much improved I actually feel more with it today. Did a little bit of gardening. Also a lot of resting. I had another accident I stubbed my bad foot on the ladder which was placed on the ground near the door. Suprisingly my foot stopped hurting after a normal amount of time. My foot bled and it looks like I might loose a toe nail. Its bean quite an eventfull month.

Well that's about it this time hope you are all well and having more luck than me. love Gill.

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