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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.

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.


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.


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


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.


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.

1 comment:

Andy said...

Great post as always. Its been a tough month but you keep your head up. You're an inspiration. I'm sure most the people who read it feel the same.
Thank You!

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