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.
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.
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.
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.
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.
Changes. Very strange going into the treatment room it looks so bare all Wietses things have gone. I felt very sad.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
NEVER GIVE UP.
Hope you are well as you can be,
'till next time Love Gill.