DECEMBER-BUMPS, PLAYS AND CHRISTMAS.

December 1st

I am cleaning up downstairs today. I am in pain but as long as I keep moving I can cope with the pain. I am very tired. My left hand has come up in a bump like it did last April. My wrist is swollen also. I am having trouble gripping things and it's painful when I open doors.

Wietse, my old Physio, phoned today. He said he is well. I brought him up to date with my treatment and what I've bean up to. I miss him a lot.

2nd

Physio
Vel massaged my shoulders and neck. He went on to massage my foot which was quite painful and kept going into spasms. The foot did not want to be disturbed, so he stopped.

I have bean given a lot of exercises to do for my neck and shoulders. Walking my hands up a wall and down slowly, moving neck from side to side and pushing my head back and side ways on my hand to cause tension. Also a few for my foot trying to move my toes. Flexing my leg and foot and pulling it back to stop it going into spasms. Plus others. Bed about 5am a lot of pain could not get rid of it.


3rd

A short night up at 8.30 I feel alright though. Lindsay is here today with the boys. She is having a lot of problems with her thyroid even though she is on medication her levels have not risen to anything near normal. The medication makes her very sleepy and dopey. We're told the side effect hopefully will pass with time.

4th

Today Paul and I are out to dinner with his IA group at a small pub in Nettleham, The Black Horse. They still do traditional dinners. It was very nice.

5th

Not a good day lots of spasms and PAIN. Too much, go away and bother some one else for a change.
Very cold today, had a little bit of snow first thing this morning. There is snow settled up north (we are east midlands) so we might get some here.

6th

Today I am going with my neighbour and her carer to her Christmas party at the Hospital. She has emphysema and has a lot of trouble breathing. The group she belongs to is called Breathe Easy. There was a buffet with lots of good thing to eat. Also a raffle, I won two prizes, a necklace and a watch. I also got a present from Mother Santa (a woman dressed as Santa), a photo Album. Very nice day but painful and tiring. My knee is very sore I am going to ask Vel what it might be. Since I have stopped BACLOFEN on a regular basic my IBS has bean a lot better. I only take it when the spasms get too bad. So that is good, less things to cause pain.


7th

Pilates - not bad managed most of the moves. At the moment my shoulders hurt when I raise my arms so not quite able to do every move. Jo understands, and just lets me do what I can manage. Had a friend round in the afternoon for a cup of tea, John, he used to belong the Pilates group. It was so nice to see him, caught up with all his news and him with mine..
Today would have bean my Dads Birthday I miss him very Much.

8th

Tommy-Lees play - Sparkle.
I went with Lindsay to watch Tommy in his school play he was a Shepard and did very well he had to say a few words and was not shy at all. A very big play with over 100 hundred children taking part, aged from four to five. They did all the lighting and music themselves. A very good play.
Here are a few photos, they have been taken from a video so aren't the best quality.

Tommy Lee when he saw me

Hi Nanny

It's me!

Performing.

Saying his lines.

9th

Had a bad night, I forgot to take my tablets. I thought I had but took dinner time ones at night instead. So no morphine. I had a lot of pain and a weird feeling. My body was asking for its Morphine fix and when it did not get it played up. Morphine withdrawal. You would think because I take so little now ( 10mg a day plus OROMORPTH when needed) it would think it would not make much difference but it does. As soon as I realized I took them. A few hours later I was back to normal again, well most of me. A lot of my friends would disagree though.

Physio - When I walk into the treatment room it still feels so strange with out Wietse. He was a shoulder to cry on, cheered me up a lot of times making me see the better side of things even if there was not really one to see. He answered a lot if not all of my questions so I miss him. Vel is good and understands a lot what is going on with me though. I will with time I hope be able to talk to him the same.

Physio went well but painful. While he was massaging my neck, I felt very light headed and sick, pins and needles in my arms. So he stopped. He knew there was some thing wrong as he could feel my neck get very hot and my head went down. After a while he was able to start again. He explained that he was pressing on a nerve that goes down my arms and legs. Massage much the same. He looked at my knee and said there is a lot of fluid there that's why it is swollen and sore.

I showed him my hand and was surprised when he said, he thinks it from my CARPEL TUNNEL the nerve going up from my wrist has bean damaged and is exposed so that's why there is a lump and pain. He massaged my hand and showed me an exercise for my knee, rolling up a towel and putting it behind my knee and pressing down. He said this will help to release the fluid. I hope so as I want to do the Santa Run on Sunday. Other exercises to do the same as be for. Long session again. A lot of pain on the bus but my neck certainly felt looser

10th

Lindsay and the boys here again it does not seem like a week since they were here last. this week has bean very busy. Lindsay is still not responding to her medication her thyroid levels have gone down . She assures me that she is taking them. Another change of tablets for her.

The boys were good and played well. I did not feel too good today very tired a lot of pain which is to be expected after physio. Paul said I even had an hours sleep later.

11th

Did the Santa Run today, more on that here: http://www.gillsrsd.com/2011/12/santa-run.html

12th

A fair night awake a few times with spasms in my feet. I expected some pain and spasms because of the lack of running. I do walk every day so I think that helps. Always in the back of my mind is some thing I read about RSD. USE IT OR LOOSE IT. I really think it works I have tried very hard to keep going and be as mobile as I can be. I know this helps as the RSD seems to back down, It knows it can't win them all. I know of a few RSD suffers that have given up because of the pain and other nasty things that make up RSD and are in wheelchairs now, most probably for good. I know it's hard but you have to fight it. The alternative is bleak!!

13th

While walking Summer I slipped on the common and wrenched my shoulder. The pain shot down my arm and leg. As the day wore on the pain got less if I kept moving.

Jay-Jay school play - Scrooge: A ghost of a chance. A modern twist on the classic Scrooge. Jay-Jay was a Fezziwig dancer. He play a guitar and danced. He was good, not as big a part as last year when he was Elvis but very well acted. Well done Jay-Jay.

Jay-Jay Fizziwig with guitar on right.

I hope my shades don't fall off.

Jay-Jay performing.

Take a bow.

14th

Pilates I did as well as I could. The moves above the head I could not reach very high. I felt quite stiff from yesterdays slip. I did the best I could.

Russ's Mum came to see me today .I have not seen her I think since last year. She also runs so we exchanged running stories. A very nice afternoon. Later in the day I pulled my left hand the one that has CARPEL TUNNEL. Now swollen a lot more. Pins and needles and numbness. I am having a job to grip and hold things.

16th

Physio- I am getting on with Vel alright. He hurts a lot more than Wietse but he is using a different approach as Wietse did acupuncture and massage. He does massage only and exercises. My neck has remained unlocked from week to week. The fluid on my knee has gone down also. He massaged my foot but I had to tell him to stop as the pain and sensitivity was too much. I am keeping up with the exercises he gave me. Some of the ones I do in Pilates most weeks. I know they are helping.

Met Paul in town and did some shopping. Got home about 5pm very tired, and in quite a lot of pain. Sat down for a while. I did not take any extra tablets but I think I should have done as the pain was bad. I am trying to get by on as little tablets as I can. Slowly my body is helping to regulate its self. The less tablets I give my self the more I hope my body will do. By late evening my pain was back to my normal levels.

17th

Average night sleep. I have got Jay-Jay and Tommy-Lee for most of the day as Lindsay is going shopping, its easier without them, and cheaper. They played and did what little boys do, made a lot of noise, but they were very good I think they were threatened before they came. My friend Tracy came to see me which was a nice surprise. She had some dinner with us as well. Lindsay picked up the boys. I sat down for a rest. My whole body aches, more so when sat.

18th

On the common to watch the clubs cross country annual race. This is run just about every year.
Mixed feeling as I used to do it and do it well. My friend Emma got First Lady, something I have won three times. I thought I was coping well with my emotions, until I was shown the shield that you won, with my name engraved on it from the past years.
I won it three times. The tears flowed, thinking that's what I would love to do again. I managed to hide them I think, from most people by looking across the common. I know I am doing a little bit but, I miss cross country the most . You never know one day ???? Talked to a few of my fellow runners. A very mixed day for me.

19th

Tonight is a meal with Paul's family, his brother and sister his Mum and Dad. The meal was good but I had a lot of pain and spasms which always spoils it.

20th

Shopping in town. Got too much and suffered carrying the bags back home. I think I could do with a carer to help me. May be I would buy even more things then knowing that some one else would carry them for me so may be not such a good idea. I am having quite a lot of extra pain these last few days. I have bean busier than normal though.

Lost Summers lead on the common. Even though I looked I cold not find it. I think some one must have picked it up. I had to carry her back home as I could not trust her to walk along side me. The way back is next to a very busy road. Even though she is little by the time I got home my arm was aching. She lays very relaxed and often goes to sleep.

21st

Pilates- The last one this year. Not so good this week a lot of stiffness everywhere. I know most weeks it helps loosen my tight muscles and relaxes them but not always. Looked again for lead but could not find it. I will buy a new one tomorrow.

22nd

Delivered the last of our Christmas cards then carried on into town. I got Summer a nice pink lead which she like as she played with it for ages. Took her for a walk later it seemed to be alright. I have small hands so I like a soft grip. As we were going on the common a man said he had dropped his lead he pointed where he went. I said I had lost mine also two days ago. I told him I would look for it. I met a lady who had seen it she showed me where it was. She did not move it in case the owner came back. I took it to him he was pleased. I thought it was funny how I found his but was not able to find mine. I suppose that's life.

23rd

Physio-Vel did massage on my foot and knee he said knee had improved slightly. When he massaged my shoulders and neck he said they were very tight, worse than last week. I told him they felt it. I mentioned my hip hurting as well. He thinks its to do with all the extra walking I have bean doing as I put more weight on my left side my good side or should I say better side.

He then went on to look at my hand. That is a lot worse than last week I can hardly hold anything and the pain is really bad. He did a little massage but decided to leave it alone for this week. I am to rest it as much as I can. He had asked me to see Dr Metta but he was away so hoping to see him next week as he wants another opinion on my hand.We both wished each other Merry Christmas and I went for the bus.

Summer liked the lights so much she did not want them to go on the tree.

24th

My friend Tracy came round to see me, then just a bit later my brother and his eldest son (my nephew) came also exchanging presents. Very nice to see them all.

Paul has gone to Halifax then Manchester to pick up Wayne,Will and then Andrew from the airport. They are all here for the Christmas Holidays. This is the first time Andrew has bean home since he went to Holland last year January 17th. I am really looking forwards to seeing them all.

Lindsay came round later and left Jay-Jay and Tommy-Lee with me while she went shopping. I turned round and there was Suey the dog as well, never mind she kept Summer happy. They were very good boys and helped me a lot as my hand is still bad. About eight the rest of the family arrived from Manchester. Summer went mad giving Andrew high fives (this is some thing Andrew learnt Summer be for he went to Amsterdam when she was only six months old). Summer then said hello to everyone else.

Summer getting a long awaited cuddle off Andrew.

I think she was wondering why every one was here. I gave every one a cuddle and hug its so nice to have them all here again. Lindsay is here tomorrow as well. Full house.

Paul, Andrew and me.

All the boys - Andrew, Wayne and Will.

Summer loving the attention, Andrew and Me.

Rolled the pastry for mince pies with one hand they turned out alright though. Cheated a bit, as I bought the pastry as the lot I made last week was very hard to do and was not my best.

25th Christmas Day

Are you sure I look alright?

Wayne.

Andrew.

Merry Christmas!

Very excited Jay-Jay.

Thoughtful Tommy-Lee.

Wayne!?

A lot of present opening and Summer getting a lot of attention as well. Andrew brought me Tulips from Amsterdam bulbs and a doll plus a dutch tile and Christmas tree hanger. Wayne a mobile phone. Will got me bath things and a phone case. I got a dressing gown, clothes, money plus, from Paul and a dog that looked just like Summer from Lindsay, plus many more things. Went for a walk with Wayne,Will and Andrew on the common, very nice not too cold. Summer enjoyed it, having more than me there as well.
Then back to do dinner I had a lot of help this year as my hand is still bad. Hip painful as well just like before when I lift my leg a lot of pain. Apart from that not too bad. Dinner was perfect every thing cooked well. After dinner Lindsay and the boys came round for there present more opening and two very excited boys. A very noisey day and long day but nice.

Lindsay, Andrew and Wayne.

Andrew and his friend James.

27th

Full house again as the full family here in the morning. Went into town with Andrew later. Walked there got shoes, boots and jeans for him. The idea was to bus back but it was Sunday service as to day is classed as a bank holiday, I had forgotten. We were the only ones in the bus station plus a few pigeons, as the last bus had gone. Pressed down on my hand and made it hurt a lot. Still very painful. We walked home it was not too bad as Andrew carried everything. Very tired later on. Andrew is out tonight so I can have a quiet night on my own.

29th

Today Andrew and Wayne go back home Will went yesterday as he was at work today. The time spent with them has bean good good but not long enough. Took Summer on the Common and took pictures. Said an tearful good bye and they were on there way. I will see Wayne soon but Andrew I don't know when as its expensive to go to Amsterdam.

My hip is a little bit better not as much pain. Hand also improved. I am getting pain down my arm as well shooting down to my hand. I will ask Vel if it related to the lump on my hand. Andrew has arrived back in Amsterdam and everything is fine he is tired but happy. Paul arrived back, everyone back at there own home now. It will seem very quiet now every one has gone. Just me and Pup most of the time.

30th

Physio-

Vel massaged my foot he said it felt and looked better than last week. Next, knee which was also much improved the swelling has gone down a bit . My hand also is a little better. I asked him about my arm and he said the Median Nerve runs along the points I showed him. He said it all points to CARPAL TUNNEL playing up. Neck quite swollen and sore. He said he could feel the ARTHRITIS he said its in the fifth and sixth vertebra. Everything apart from my neck hurt less than last week. I am to carry on with the exercises and try to put more weight on my right side and put the heel lift back in my right shoe again. I took it out before because it caused me a lot more pain or I thought it was that. With RSD I am never too sure.


31th

Well the last day of the year what will the next one bring no body know. Hopefully better than the this one but I say that every year and so far it has not happened. There is always a first time maybe it's this year I hope so I think all my family could do with a better year.
I hope yours will be good as well.

Happy New Year from me!

Here's wishing you all
A VERY HAPPY NEW YEAR
Love Gill.

SANTA RUN

Today is the yearly Santa Run/Walk. A run that takes place in the uphill part of Lincoln. The most historic part, in aid of charity. British Heart, Samaritans, the Siemens Club and other local ones this year. I am doing the run 3.5km about 2 miles. I have only run once since July. I hope things will go well. At the moment I have a sore knee. Vel my Physio said there is fluid in it. I am OK on the flat but in a lot of pain going uphill and sometimes down. The race is in a very undulating part of Lincoln. I will do my best. Some of you might think, FOOL for even doing it or even thinking about it. I say I still want a life apart from RSD and the other things that take over my body. The high I get from this lasts for just more than the race its self. Paul (Husband) is doing the same race but walking.

Me before the start.

Me again.

This little dog was doing it as well.

This little one could not wear his suit from last year as he had put on a little bit of weight so is a reindeer instead. I don't think he was very keen to walk as he was quite content just to be held.


Paul before the start.

Little Santa's

Wheelchairs Santa's.

Running shoes/boots?

Santa's everywhere.

The finish just in case I don't make it.

At 11.30 prompt we were off . The race more or less started on an up slope so my knee started niggling straight away. I did my usual thing and ignored it. Downhill was next, not much better. I was trying to get in a sort of stride so I was able to keep going comfortably.
I found I had to walk a little this year, as my knee felt like it was going to break but I ran most of it. My shoulders were quite painful as well but not enough to stop me. Two laps, the second was easier than the first. I kept going and finished! In pain but real pleased! Not as fast as last year so slightly disappointed. 25min. Last year 23.48. I was fitter then I think. I was still on a high though I DID IT....

Me with the prize/medal.

I did it.

Paul after he did well 33.48 mins. He was pleased.

This man ran as a turkey so I said I would put him on my blog.

The real Santa?

A good day. We had dinner out we deserved it. As I said I was a little disappointed but Paul pointed out I was in Hospital just over eight weeks ago, unable to walk and was paralysed for 24 hours due to medication change. So not too bad what do you think?

I hope you like this extra blog of the Santa Run/Walk.

Love Gill.

NOVEMBER-CHANGES

1st November

A bit of a rough night. I could not get in a pain free position. Hardly any sleep.
I had a phone call from Carhome Court the place I go to for Physio. I have lost my physio of six years though change of his circumstances. I feel lost and uncertain how things will go without him. Wietse has treated me for a long time and got to know me very well. Just walking in the room he could tell how much pain I was in and where. He has become a friend as much as a physio. I will miss him greatly

I have bean appointed a new Physio who's name is Vel Ramasamy. I met him before when Wietse was treating me. He did some of his training in Holland so is on the same wave length as Wietse was . My first appointment is on the 11th of this month.

3rd

The pain I am getting now seems out to get me. Just about every where is painful. I think a lot of this is FIBROMYALGIA pain my joints are so tender just a touch, sends pain shooting around my poor body. I took Summer for a walk my shoulders were going into spasms and getting very tight. At one point I did not think I would be able to get back home but I did. Rest does not seem to help.

6th

Less pain able to cope more. A lot better day. I am getting a lot more temperature changes like I did be for I thought they had taken a back seat, but seam to have jumped back in the driving seat again. Just the same as before sweating one minute, very cold and shaking the next.

8th

Wietse came to see me today, just a friendly visit to see how I was doing. I told him I am seeing Vel next week so will see what he has got in mind for me. I will be asking Vel lot of question regarding my treatment. Wietse does not think he does ACUPUNCTURE.

9th

Went to get the bus for pilates but the road was closed due to works further down so it went a different route so I did not get there. There was a note on the bus shelter inside but I did not see it until it was too late. Last week Jo was ill so I couldn't go last week either.

This pain is really getting to me, grinding me down. Missing pilates did not help either. Some very down days, I think about the future and weep. My life now is surrounded by pain even on a very good day there will still be pain. On a really bad day its almost too much. I don't have that many down days like this but they do creep in at times. Most of the time, I cope very well. Yet I do yearn for my pre-RSD life that I will never have again. I will fight this RSD as much as I can. The amount that my little body deals with is amazing its not surprising it breaks down occasionally.

11th

Physio day-
Changes. Very strange going into the treatment room it looks so bare all Wietses things have gone. I felt very sad.

Vel - My New Physio.

Vel took my history he was smiling a lot at the beginning but by the end he looked a little concerned. I asked him if he wished he had not taken me on . He said no and he will do his best for me. He does not do ACUPUNCTURE like Wietse did. He will treat me with massage and resistance exercises and strengthening ones.

I asked him a lot of questions about how long can he treat me and what he knows about RSD. He said he will trial me till the end of the year to see if the treatment helps. He knows very little about RSD but will look it up for next time as he is very interested. He specializes in FIBROMYALGIA though, so that's very good for me. He is very much like Wietse; very quietly spoken and a good sense of humour. I hope things work out and he can help me.

12th

Lindsay and the boys are here so no peace today. Lindsay is on a trial of new tablets for her thyroid complaint and not coping very well she does not think they suit her. She looks very pale and is in a lot of pain. The boys were quite good today, they played Lego and were running around outside. It was very noisy.

Summer was very ill later in the day with projectile diarrhea and later on she was sick. Poor little Summer. She is such a little pig and picks anything up, even on the common she'll eat the horse and rabbit poo if not stopped. I am told most dogs do. She also loves rolling in it. One very smelly mucky dog.

14th

Another very painful day with a lot of pain in my knees. Sometimes it just starts in a place like my shoulders and works all the way down. Very hard to relax or even sit still as the pain is worse when resting. Violent RSD pain in my right foot. Spasms just about everywhere. I find a hot bath still helps. As long as I don't stop in more than a few minutes as my RSD foot does not like it and it makes the spasms worse. I don't think the RSD can cope with the change in body temperature.

16th

Pilates - I actually got there this time.
Found it very hard as a lot of pain still. I hope it will help to loosen me up a bit. After a good rest and dinner. I decided to go for a run I have not bean since July 5th when I scraped my leg. The spell in hospital left me too weak to go so I am giving it a go. You all might think that's madness because of the pain but running helps my mind, if I feel good I can cope better with the pain. Left off my active ankle (support for my right foot) as it presses on the painful bit. This is sort of a risk, because if I go over on my ankle the damage I cause will make thing very much worse.

The run was painful but brilliant I enjoyed it very much. Only about two miles in twenty eight minutes. So not far, a bit less than I normally do. I would love to do the local Santa Run next month. A run where every body wears a Santa suit of some sort. A very good run just about two miles. I have done it twice before, once last year running and once on crutches. A very enjoyable day.

18th

Physio day - Val began by massing my RSD foot it behaved quite well allowing him to touch it. I then had to try to move my toes. They jumped a bit and trembled but did not really move much. I then had to flex my foot and ankle, no problems but then my foot went into a spasm.
Next my shoulders and back got the treatment, a massage and he used a taping motion with his hands to try to release the tightness there. Very painful he told me to tell him if the pain was too much as he has still to learn my pain levels. I like Vel and am hopeful he can help me.

He told me I had a good approach to my condition and was amazed how I cope. He went on to tell me about a lady who was fine leading a very active life in April till she found out she had FIBROMYALGIA. She just gave up. She can no longer stand without help. It just shows what power the mind has.

I told him I went for a run. I can run better than I can walk I told him. He was very surprised I could. I said with a lot of things if you think you can do them you can or a least give it a good try. I said the run makes me feel more like the way I used to me. He said well done. I told him sometimes it helps loosen the muscles. He has given me a few exercises to do. Stretching, flexing and rotating my foot. Pressing my head on the front and sides (one at a time) and pushing my head into my hand to strengthen my neck. Also pulling my shoulders back again to try and strengthen them. A lot of these exercises I do at pilates as well. I think the session went well. I am back next week for another session with him.

20th

A bad day with PAIN lots of it starting from my neck and going all the way down to my leg on the left side. The right side as not to be left out is also very painful but with spasm's. Not a good day things can only get better.

I took Summer for her morning walk on the common. A very foggy day. You could not see very far. I was walking with my friend Nicky and her dog Basil, when a large Labrador came up behind Summer and scared her. She set off running, not too sure of what was behind her. We both shouted her and she started to come back, that was until the Labrador went after her again. I shouted to him to put it on the lead. The owner did not. Nicky went to get her as she can get there quicker than me. The Labrador again went after her. Now Summers no greyhound but when scared she will run, anyone would. By the time Nicky got to the place she was, there was no sign of her. The man shouted "its there" and walked off. I don't think the Labrador wanted to hurt Summer but he was so big he scared her.

We searched and shouted but could not find her. We did not know if she was hurt or just hiding. Nicky said would she go home, I did not know as the road we have to cross is very busy, also she would have to go though the park.

I got my mobile out to ring Paul when he appeared at the common gate, very worried as he did not know what had happen to me. A lady had seen her near the house and thought she was our dog and rung the bell. She said she crossed the road and the cars stopped for her. All I know of the lady is that she was wearing green wellies. I hope I see her again to thank her.

I have always taught her like a child with crossing the road and waiting for the green man. Maybe she did use the crossing with some one else. I was so relieved. Usually I am so careful and put her on the lead if any dogs we do not know come near. But with the fog we did not even see it. I will tell the man with the Labrador if I see him again what happened, as he needs to take more control of his dog.

22nd

Pain again a mixture of RSD and FIBROMYALGIA. I have taken a few extra tablets IBRUS and BACLOFEN to see if this helps. I also put on so much muscle rub that's all I can smell. However I sit or stand the pain will not go. Every joint is very tender.

23rd

Pilates - I really don't know how this will go as I feel very stiff. I can only give it a try. Some of the moves I could not do but some helped. I am trying to keep moving so it does not get worse or go into spasms. When I got home had a rest then made the second Christmas cake. Lovely smell. Took a extra few tablets. Bed at about 3.30 even then found it hard to get comfortable

25th

Physio - First foot massage and stretching my leg. My foot did not spasm up as much as last time it felt a lot loser I still could not get much movement of the toes apart from a little twitch. Next came the neck and shoulders turn. My neck felt a little less tight than last week, he agreed with that. When he pressed a certain part of my neck it made me feel very dizzy and hot so he stopped for a while, it soon passed. He was then able to massage some more. I then laid on the bed and he manipulated my arm and shoulder, sort of pulsating it. The pain was getting bad so he stopped and the session came to a close. I was given a stretch band to work on my legs with. This hopefully will help strengthen and tone them to enable me to walk better. The session was longer than usual.

I went for the bus the pain going home was very bad. I felt every bump. The driver who I have got to know asked me what Vel had bean doing. I said helping me improve. Went to the Dentist, then a bit of shopping then home. I felt very sore and my back was spasming up. After a rest I took Summer for her walk. Later I had a violent head ache, used Tiger Balm and it helped a bit. Bed about 4am. I was quite comfortable with not too much pain.

26th

A better night than I thought I would have. Up about 8.30. Quite sore shoulders and a bruise on my foot. I have less pain than I thought I would have.

Lindsay and the boys are here with Suey. Summer was very happy playing with her most of the day. I helped the boys make a catapult or as Jay-Jay called it, a sling shot. All was going well until Tommy-Lee decided to fire Tomatoes off the garden at the dining room window. They slid down the window and looked a mess. They came in. Although it was funny he should not have done it. They ate there dinner and played with Lego and cars then Action Man till they went home.

27th

The day began quite good, average pain even after Summers walk. I have bean sorting out Lego and washing it. Paul bought some second hand that had bean in a loft, a bit dusty so I decided to put in my net bag and put in the washing machine as there was so much I put some in a pillow case. What I did not realize that there was a hole in the pillow case and a lot of the Lego came out. I stopped the machine be for it did any damage. I then spent the next half hour picking out tiny bits of Lego. So much for my time saving plan. My friends Ali and Steve came to see me and brought me some chocolates, which was very nice (thank you). So nice to see them again. Ali had not bean well so could not get before.

As the day wore on my pain got worse my knees are very bad. Took Summer for her afternoon walk. Shoulders bad and hips. I think bending and sorting out all of the Lego bits put a strain on my body.

28th

Very cold I think Winter is here. Summer had a long walk on the common, met a lot of her friends and mine. Most of the people I don't know there names but I know a lot of the dogs names. She had a good time running around. I walked too far and too high up hills, and paid for it later with a spike in pain levels. A few hours later things had calmed down to normal, well normal-ish.

30th

Pilates - Not a bad session. I could not do all the moves because of pain in my shoulders and arms but I did my best. I can now balance on one leg when I need to. I know that Pilates has made a big difference to me. Before I started Pilates, I had little coordination and not much balance. I think that could be said for most people though. Now I know a lot of weeks I do better than some of the others.

Well that's just about it for this time, its certainly bean a strange month with a new Physio and Summer's episodes plus getting back to normal. That took a lot of doing after my Hospital stay but I am just about back to where I was before I was admitted.

NEVER GIVE UP.

Hope you are well as you can be,
'till next time Love Gill.

PLEASE RELEASE ME

October 1st

Still in Hospital. Fair night about what sleep I normally have. I am going to have a shower on my own without the nurse. They will be listening out for me to make sure I am ok. The shower was nice, but quite forceful it caused pain in my back and shoulders.There is a seat but I kept sliding off. By the time I had finished I was hot and sweating but felt cleaner anyway.

My foot is still in a strop and not letting go of the spasms or swelling, my toes are like fat sausages. I am still unable to put any weight on it. I am very bored here, at night when most are in bed I go along the corridors in my wheel chair. My arms and shoulders hurt from pushing it myself but at least I can leave the ward.

3rd

Woke to a blinding head ache. When my blood pressure was taken it was high 210-98 . Physio came to see if I could walk yet. I could not as soon as my foot hit the floor it went mad. Pain and spasms every where going up my leg. There is no way I could bare any weight on it. I explained there is no need to be in hospital as this will get better at home. Physio was not having any of it and advised for me to have a few more days.

Feeling very misunderstood I went out side for a while even though it was dinner. I was in no mood to eat. They know very little about RSD, but still think they know best. Went back after about hour and half even though it rained. Blood pressure taken now down a little 178-70. A new girl has come into the ward that look like she could be a friend. Played dominoes with her, a nice change. Went for a shower then bed about four.

4th

Doctors around today I asked them why I need to stay. The spasms are worrying them as they are not reducing at all. BACOLFEN has bean increased by three times what it was. I usually take 20-30mg a day mostly 20mg, and the doctors have upped it to 60mg, starting now. I said is not too much all in one go they said no it was quite acceptable. They are getting in the pain team again, to see if they can do anything. The team suggested that I take DIASAPAM low dose to see if that's helps I am not very keen but if that is what it takes to unlock my foot I will do it short term . I had a bad experience with it when in hospital before. After some discussion with the doctors they ruled it out all together as the neurology man is coming to see me soon. Played dominoes again.

6th

Better night I think my body is so sleep deprived that it had to give in. This extra BACOLFEN is making me feel a bit strange, even more than normal. I'm light headed with tinging fingers and a far away feel. The neurology man has bean to see me asked about my RSD. He started by saying not everything that looks like RSD is. By the time he had finished he said he was sure it was 100%.

He has increased my GABAPENTIN from 600/900 a day to 1600 a day. I said that's a big step to take. He said it would be fine to do that. Also he said if that does not help to increase it to 2700mg a day if no better reduce GABAPENTIN then try CARBAMAZEPINE starting with 100mg then increasing it to 800mg in two doses. I said I need to have a life as well, with all that lot I will be a zombie in the corner. With all the extra tablets I am now taking it makes me very worried how my body will cope. My Air mattress has gone down I can not lay on it at all. I am sort of laid on my chair with my feet on my wheelchair because I feel so dizzy and far away and I have a bad head. My mattress has bean replaced with a ordinary one till tomorrow. When Paul was here at night my foot went into a bigger spasm and would not release. I have had enough of this pain and feeling bad all the time.

Spoke to Andrew on Skype today as Paul brought in his computer. The talk did not go too well so the nurse said he could ring here I talked to him for quite a while and the nurses did not mind one bit. In fact when I said I will have to go, they said no speak a little longer. Andrew worries about me as he so far away (Amsterdam). I was very grateful for that. More spasms in the night.

I got out of bed after watching a DVD, to go to the toilet and felt very week and dizzy I am still using my wheelchair, I felt like my body did not belong to me. On the way back I was having trouble controlling my arms. When I tried to stand I could not. I felt very cold. I could not move and could not reach my buzzer to call the nurse. I sat there very cold for a long time as all the nurses were at the far end of the ward. At last two came and helped me back into bed they said I was ice cold and brought me extra blankets. I am sure its the BACLOFEN that is responsible.

7th

A rough night I did not move out of bed till eleven even then I felt bad. The doctors came and reduced BACLOFEN by 10mg at dinner. A bed has come but will not blow up. I think its faulty. I laid on my friends bed as I felt so bad. Another arrived and that was a good one. Later we played dominoes again.

My foot is so painful hot red and going into spasms all the time. When will this end? Went to bed and read for a while. I do not feel right at all. About three o'clock the lady opposite told me to lay down as I had gone to sleep and was sat up right. I tried to get out of bed but could not find the floor with my foot. Everything was so weird, like a dream. No more like a nightmare. I was so scared.

Some one shouted the nurse and she helped me out of bed to the toilet. I was very floppy like a rag doll and they said I was ice cold even though I did not feel it myself. I had trouble sitting in the wheelchair and kept sliding out. I was put back into bed. I was shaking with cold and pain. Some warming pads were put on me. The night was like a very weird experience with me trapped some where in the middle. I felt very frightened but of what I was not sure. I was told that light and noise bothered me a lot. Some one watched me the rest of the night.

8th

I feel so bad I can not move, or feel my arms or legs. I can not hold anything. The nurse had to wash me. I can not tell hot from cold, as I thought the wash water was cold but they said it was hot. I can not hold a cup or move my hands. I am very worried. I even had to have a bedpan that tipped up, so then I had to be washed again . This feels like a hundred steps back. The pain in my back is really bad, they moved me with a slide sheet as not to hurt me more. In fact I have pain just about every where. This is a reaction to increased BACLOFEN I know. I am NOT taking it any more while here. As the day wore on I regained some movement in all my limbs. I stopped in bed all day. It was a terrifying experience.

9th

A bit better night, well it can not be any worse can it. Nearly full movement now. Back in my chair and out of bed. Still very rag doll like. My legs gave way in the bathroom I did not fall to the ground but it scared me. I sat in my wheelchair for a while. My foot is going crazy with pain and is ice cold but burning at the same time. A lot of ORAMORPTH today. Went for a walk later with another lady that night about eleven and got lost. Got back to the ward about midnight. Had a shower then went to bed. Read for a while. I could not sleep.


10th

Hopefully today I can go home as I can sort my self out better there. Physio lady came to see me and I walked with help for first time since I went in. My foot kept going into spasm but I still did it. She was quite surprised but said I need to walk better. I said I walk the only way I can, it will get better as my foot behaves. She was not convinced and started going on about sleeping down stairs and various things to help me. I told her that things will get better fast as soon as I can get back to normal life, or normal for me anyway.

11th

I am trying to walk pushing my wheelchair but my heel is very red, from a bad bed sore. My daughter was told on May 24th she had CANCER LYMPHOMIA. She found out today it is not CANCER - the best news yet. The problem is her thyroid gland GRAVES DISEASE plus something wrong with her blood they are still doing yet more tests. Anything is better I think than CANCER. She said, now I will see my boys grow up.

Doctors came and said if physio was happy with me I could go. I should go back on BACLOFEN I did not agree at this time. If I need to I will discuss it with my doctor when I get home. At last I can escape. Physio lady came and had me walking up the steps I did them all right. She said my foot was still spasming up . I said that RSD is very unpredictable. She said I can go home as I was safe on my feet. I told her within a week or less I would be walking my dog, she was not convinced. After getting my tablets and saying good bye to every one I was on my way.

Summer, my little dog, went crazy crying and licking me. Its so nice to be home. I know the hospital is the best place if you are ill, but with something like RSD where nobody really knows about it, all they can do is alter tablets and a lot of the time make things worse. Then you have to recover from more things. There is no where to go to get away from the ward as there are no day rooms now. Also there are no baths only showers. I like to lay in the bath when I can as it helps my muscles to relax.

12th

Awake most of night but pleased to be home. Summer is following me every where I think she thinks I will leave her again. I hope not but with RSD I never know. I miss the people I made friends with as they were very nice to me. I will also miss the nurses.

I have reduced GABAPENTIN from four times a day to three. I will reduce them as much as I can over the next few weeks. I want to take as few as I can without being in too much pain. BACOLFEN I will take if needed. The episode that happened in hospital frightened me a lot. I know I am on strong drugs but you think being in a hospital that they would take notice that it was the BACOLFEN that was making me worse. I kept telling them but to no avail. I went to bed at one thirty, I was so cold it took ages to get to sleep. Its nice to be home again though.

14th

One of my friends came to see me I used to run with her. I WILL run again soon I just need to get a bit stronger. I will prove the physio wrong. She said that I would find it very hard to run a gain. I feel alright nearly back to normal.

15th

Lindsay is here today with the boys. They were pleased to see me. Tommy asked me if I was better, I said just about. Last time he asked this he wanted the balloon back he brought it to get me better, as I was better now, but he never asked for it back this time. The boys were well behaved most of the day but very noisy. Quite a good day but very tired. Very cold again when I went to bed.

17th

Paul is back at work today so its just me and Pup. I am taking her out in the afternoon. Paul took her this morning. Quite a bit more pain today probably because I am doing more things. Still the cold feeling as well. A good walk with Summer she went mad running around. I enjoyed it a lot.

19th

Taking Summer for her two walks a day now. I gave her a bath she looked so clean and sweet. Later in the day I pulled the arm chair on my bad foot I screamed with pain. Also when I had my bath my foot reacted badly to the hot water going into a spasm. Very painful, I rested it on the bath side that helped a little. Still very cold feeling thought out my body. Used foot warmer but it made my foot swell up. My shoulders and back are very painful today.

20th

First frost of the season very cold today. Did a bit in the garden and green house. My temperature levels have sorted them selves out a little so not as bad as they were. My feet are cold the right one ice cold. If my bad foot is cold It seems to hurt less. As when it swells up, it becomes very hot and more painful.

21st

Spoke to my doctor he is happy for me to choose when to reduce the tablets. He will check up on me of course though. Wayne my oldest son is here for the weekend so that will be good. I am in a bit more pain today shoulders, back left arm and right knee. Lindsay is here with the boys they are both in a argumentative mood. Still it is nice to see them all though.

23rd

Wayne sorted out my documents on the computer, he tidied everything up for me so I can find things. He went to Egypt a few days ago so was showing me pictures he took while on his holiday. He went on a camel ride in the dessert, it was really hot he said. All too soon it was time to say goodbye and off Wayne was back to Halifax. A very nice weekend.

25th

Went into town to get some pyjamas. Got some in very soft fleece, they should keep my legs warmer. A lot of pain while walking. Pleased to get home and sit down.

26th

Pilates today, the first one since I was ill. I enjoyed it very much. I was a little out of practise, but I think I managed quite well. A lot of them said they were pleased to see me back. Had a rest in the afternoon with Summer sat on my knee.

27th
A restless night. Reduced GABAPENTIN again this time 300mg morning instead of 400mg. My left hip is quite bad it hurts to lift my leg. My shoulders are still bad as is my knee. Though my new pyjamas are are lot warmer than my others and so soft.

28th

A bad night lots of spasms in my back and shoulders. I think the pain is more FIBROMYALGIA related than RSD. I have taken 1 BACLOFEN and 1 IBRUE to see if will help the pain. Putting my shoe on is very painful so is going up stairs.

Took Summer for her booster injection and check up. She was weighed 8.8kg. The vet said she is perfect weight. I was pleased. She is such a friendly little dog and everybody loves her.

The pain seems to be in most places though out my body. I have bean walking different, putting more pressure on my right side so it has caused my foot and knee to join in on the pain front. RSD pain now. I am walking around like an very old woman.

Jay-Jay and Tommy-Lee are here and staying the night. They are so excited. After playing with Lego and watching a DVD the settled to sleep about eleven o clock. When I did finally go to bed, I hardly dared move for fear of causing more pain.

29th

Pain still about the same. Jay-Jay and Tommy-lee slept till about nine o'clock

30th

Bit better night no spasms much. Still a lot of back pain, shoulder a bit better. Went into town with Paul to do a bit of shopping, then on to do some Morrison's shopping. As the day went on the pain in my body got a bit less. What a relief! I am able to walk in comfort well almost again.

31st

A better day with pain. Most of the spasms and pain have moved to the right side now, neck and shoulders, not as bad as the past few days. I am now able to move without as much pain. It's heaven. I had my hair done today as well, so now I look human again.

Well this last month has bean different to say the least.

RSD is so unpredictable I never know what will happen next.

Best wishes love Gill.

BLOG COMING SOON / UPDATE ON GILL

Hi Everyone, this is Andrew, Gill's son.
She asked me to let you all know that she is unable to post her blog at the moment as she is currently in hospital due to her RSD. Her pain levels are very high at the moment and she is unable to put weigh on her foot. We all hope that she will be home soon and she is eager to get back on with her blog and keep you all informed.

Please leave any comments/get well messages below! I'm sure it will make her smile.

Thanks,
Andrew (Gill's Son)

SEPT(PAIN)ER

Hi, its me back from the land of pain. This blog will be brief as Octobers will be here soon but I feel I need to update you all.

September 2nd

Doctors again, I can not get on top of this pain. He has told me to up my GABAPENTIN at night to see if this helps. My pain is a lot worse if I am not moving a round so I try to keep active when I can. I spoke to him about my neck and he thinks it might be a compressed nerve.

3rd

Got Suey for the day Lindsay's dog so her and Summer are going mad chasing each other through the house. About tea time I felt sick and dizzy my words were slurred I had trouble standing up.I went to bed and was sick till my stomach ached and my back was going in to spasms. I slept very little listening to my iPod instead.

4th

I have at last stopped feeling sick but feel very battered. I only took the minimum of tablets as not to make it start again

Tommy-Lee and Jay-jay.

5th

Big day, Tommy-Lee is starting school. Jay-Jay is going to the same one as well. When I spoke to them both later on in the day they said they had enjoyed their day. Tommy-Lee said some of the girls were touching his hair, he said he liked it though. Jay-Jay enjoyed the day as well. I was pleased they both had a good day.

7th

Pilates today I am having trouble with my neck again when I turn my head and getting quite a lot of pain and pins and needles down my arm. A lot of spasms down my leg at least my stomach is better.

8th

Tommy-Lees 5th birthday we have got him a remote control tumble car with flashing lights. He loves it, Jay-Jay does as well. We got him some clothes and I made him a cake.

Jay-Jay thinks its great.

I love you brother.

9th

Physio
Good to see Wietse again, about 12 needles in and around my neck and ears. He was going to use the electrics but it was not charged up. He agrees with my doctor about the nerve in my neck. Hopefully he can sort it out.

12th

An appointment today for my nose most of the bleeding has stopped. He told me to use the cream every day not just for the two weeks that I was told last time. He all so cauterised it, I hate the smell of burning and the taste it leaves behind. Otherwise he was pleased and signed me off.

14th

I gave Summer a lamb bone, she loved it. After a while she no longer had it. I went into the garden and she had buried it near the rhubarb. Later she dug it up again had a bit more. then reburied it, it was so funny. One very mucky white dog.

Tired out after all that digging.....

16th

Physio Wietse had trainee with him and he was very interested in my RSD. We talked quite a lot Wietse filling him in with the medical info. Had a session of electric acupuncture, little pulses down the needles. My neck is very tight and shot out one of the needles he said he would hammer it back in, it felt like he had. The electric felt very soothing

17th -18th

Paul and I are going to Halifax to see Wayne and stopping the night. The journey was very painful, my shoulders were very tight, infact pain just about every where. Some days I can travel with no pain or not much and others loads of pain - it does not make sense. When did RSD make sense any way. The ride otherwise was good no hold ups. We had a Chinese takeaway for tea. Bed early for me about one as I did not know how to sit to ease the pain. Not a lot better in bed either. A trip in the town was good not too much pain. We had a pub lunch which was very good. His cat Timmy was playing as well. All to soon it was time to set off home again. Lindsay had summer so she will be having a good time with suey and the boys.


21st
Pilates was quite painful and hurt with every move. Took an extra BACLOFEN maybe that will help. I sat down to rest for a while felt a bit sick. Went on to pick the tomatoes and water the greenhouse. Then I felt very sick and had trouble standing up. I just made it to the bathroom and was violently sick, this went on a long time. I passed out.

When I came to. I was sort of half laid on the cold tiles with Summer tucked under my chin I thought it was the bath mat. I pulled my self up and walked like a drunk to the settee to lay down. Paul came in and I asked him why he was home and he said it was four o'clock gone. I some how had lost two hours. The sickness started again and I started shaking a lot. Paul called an ambulance. I was in and out of consciousness for a long time. Kept in the over night at the Hospital. The doctor said to Paul he was concerned that it might be an drug overdose because of my junkie eyes . Paul explained about the strong drugs I was on . He said he seemed happy with that.

22nd

Blood pressure a bit low so it was decided I had to stay a few more days. I had trouble standing. My foot will not like this as it likes to be active. Moving to Burton Ward soon.

23rd

Feeling worse than I was lot of RSD pain put on oxygen as levels are low. A doctor came today who knew about RSD he said he would put me on ORAMORPH every two hours as needed. Boy did I need it. Lindsay was there as well . This is the first time I have ever spoken to some one at the hospital that knows anything about RSD. Started wrenching over night, two nose bleeds and my stomach is very sore. There is a lady here that shouts a lot and wakes everyone up. She cant help it but when I am in a lot of pain it does not help.

25th

I have bean having CALAGEN drinks to build me up. Quite a bit better but very tired as had no sleep last night. My eyes are very sore and sticky. A swab has bean take to see what it is. Played a game of dominoes with another patient on my bed. I am now off the oxygen as my levels are better. Another nose bleed.

26th

I had a shower with help today it felt really good. My eyes are still very sore. Paul brought my wheel chair so I can go to the bathroom on my own instead of waiting for a nurse. I still have not walked really since I came in as my foot is very swollen and hot, and will not tolerate any weight on it.

Lindsay brought the boys to see me, they brought me a balloon each. When Tommy-Lee gave me his there was only the stick, the balloon had dropped off, his face was a picture. That cheered me up a lot.

28th

Physio came but my foot would not let me put weight on it. I said I can carry on at home as it has happened before, but they said no as I need to be walking before I go home. I said I did not walk in here so why do I have to walk out?
Pain clinic also came to talk to me they have increased my GABAPENTIN to 1600 mg a day I was on maximum a day of 900mg. Also my OXCICONTIN has doubled from 10 to 20mg a day. I feel very light headed as well. At last cream and drops for my eyes, very soothing.

29th

A better sleep but I feel worse for it. Left eye was closed when I woke very sore and red. Having lots of ORAMORPH for the pain it is getting out of control. Went to the toilet and felt dizzy and in pain, but could not get back on the wheelchair. I held on to the grab rail and must have slid down and passed out.

When I came round I was laying on the floor very cold. I shouted but the ward is very busy so was not heard. Then I started banging the foot rest on my chair. There is a lot of building work going on so every thought the banging was the work men. The light went out as they are motion detected I was in darkness. After quite a while I was missed and at last some one came. I only hurt my ankle. I was put in bed and obbs were taken. I was fine apart from being so cold.

30th

We are having a Autumn like Summer very hot, and I am stuck in here. I miss my pup.
Doctors came round and said just carry on the same. Some more drops and cream have arrived for my eyes. My foot is going into spasms all the time and more painful than it was. Lots of pain and burning. I am having a lot of extra ORAMORPH. My pain levels are bad. Rang Wietse and asked his advise. He said don't let any one touch it. I am to raise it up on a pillow behind the knee and massage it from the knee down and try to keep off it. My foot is burning like a fire. My shoulders are also on fire I am fed up. I can do this at home.



To be continued in Octobers blog.

Take care everybody,
Love Gill.