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.