I went to bed last night really looking forward to a comfortable bed that would at last give me the sleep I needed without the worry that should I need to get up during the night, I would be able to return to my flat bed and sleep the rest of the night. I had been in bed for seconds before I know there was something wrong, the edge of the mattress where it was usually well padded and smooth was cutting into my wrist, if I moved it to another position it cut in to my finger. I had to get up and check what was wrong, the top layer of my mattress arrangement was gone, I went and checked with Adam and yes he had removed it at lunchtime as he thought it needed washing. I bet he never even thought that I would notice it’s disappearance at all, but as we have noted in the past I am like the princess and the pea, change what is in contact with my body and I know instantly. It’s actually due to all the different things wrong with me that means I have to lie in a set position that I have worked out over the years. Just so I know what time of day it is I now sleep during the day with my pyjama top on, which allows me to bring my arms closer to my body as I don’t have to worry about the skin on my arms holding onto the skin over my ribs. Anything no matter how slight that adds to the restriction of the movement of my lungs seems to increase that feeling that they are changing into concrete. I had discovered that just that extra little restriction actually can make a huge difference, I don’t understand it but it does. At night I take my top of but this means that my arms have to be positions so that they don’t touch my sides at all and that is how my wrist found the solid edge of the feather topper.
Reading that back just screams back at me the madness that has taken over my life, but it doesn’t matter how mad it sounds, that is now my reality. I seem to spend a ridiculous amount of my time positioning my body down to the millimetre, just to change a sensation by as small a degree. I remember a time when I just got into bed and went to sleep, not now, although I sleep huge amounts of hours, they are all spent in positions that don’t seem to change even when I am no longer aware of them, I will wake in the morning just where I was when I lost concious the night before. It doesn’t matter how many times I have tried to change it, I am now totally unable to lie on my sides. I actually can’t even get over onto my right side unless I have something to hold onto, to pull myself over using my arms, my body can’t just get there alone. I can get over to my left side with much more ease, but once there the pain is incredible, if I can stay there for more than a second I will not stay there any longer and flop with glee to be back once again on my back. In the past year I have become more and more unable to get my body to do what all other bodies do, just lighting the fire is now guaranteed to find me then crawling to the settee to get up again, once on my knees there is no way back to my feet, even using the settee as I did yesterday, was an amazingly difficult thing to do. My leg muscles just aren’t able to make those adjustments and movements to lift me, without my arms I would not be able to stand again and they are now finding it a really hard thing to assist in.
I doubt any of us ever thought that we would find ourselves going backwards, that the simple things we learned to do as a toddler, in fact allowed us to be called a toddler, are going backwards all the time. I can’t help wondering just how long it will take for that journey to be completed, We all learn to roll and to pull ourselves up on furniture by the age of 1, I’m 52 right now and I am guessing that it will not be that far away, before I will have lost both of those basic skills for good. When your arms and legs can’t help you change with ease the position you are in, getting it right and keeping it right becomes more and more important. I know now how to sit here at my PC, I know now the best position although the least comfortable place to be on the settee and I know how to lie to sleep. Because my health is totally progressive, I know that all these now well thought out and painfully found positions will have to change in the future, but I don’t see what I can do right now. Sitting here is the one that is going to need changing first, not because of the pain in my legs, or the constant loss of feeling in my arms, but because of my diaphragm, it seems to be racing past most of the muscular pains that my MS is causing.
I guess we all like to think that we will spend our lives enjoying it all with ease, touched by the thought that yes in our latter years we will fade and have the same difficulties we witnessed in our grandparents, but to be here 30 years sooner than I ever thought, well it can be hard to accept and I guess that will be my downfall in the future. The hardest lessons to learn are the ones that start with the words, “I can’t do this”, I got it into my head a few years ago that I “I can’t climb ladders” and a list of other things that just didn’t really matter, but how do you get it into your own head the list that is clearly in it’s formative stages right now. More and more my body dictates for me how I do the things you would never even spend a second thinking about. When you sat down, did you think about the folds of your cloths that might cut into backside and legs, did you put your feet in a particular position, as there they are less likely to loose feeling or start to burn. Did you set yourself as closely as possible to the position you were in yesterday, as well it worked OK there. Is there a clear area on your desk so that you can use your fore arms to start that push required to stand, have you planned it all and set it all out, or have you just done it with no thought at all.