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.
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| Tommy Lee when he saw me |
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| Hi Nanny |
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| It's me! |
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| Performing. |
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| Saying his lines. |
9th
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.
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| Jay-Jay Fizziwig with guitar on right. |
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| I hope my shades don't fall off. |
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| Jay-Jay performing. |
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| 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.
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| Summer liked the lights so much she did not want them to go on the tree. |
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.
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| 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.
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| Paul, Andrew and me. |
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| All the boys - Andrew, Wayne and Will. |
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| 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.
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| Are you sure I look alright? |
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| Wayne. |
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| Andrew. |
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| Merry Christmas! |
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| Very excited Jay-Jay. |
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| Thoughtful Tommy-Lee. |
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| Wayne!? |
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.
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| Lindsay, Andrew and Wayne. |
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| 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.
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| Happy New Year from me! |
Here's wishing you all
A VERY HAPPY NEW YEAR
Love Gill.
A VERY HAPPY NEW YEAR
Love Gill.
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