I seem to be running on low again today, just the simple act of getting from my chair to fill my lighter, moving a distance of 3 feet from here to the draw then sitting while I filled it before returning here, has drained me. I am noticing my arms lately feeling as though a tap was opened and bled to empty after the smallest tasks. It used to be my legs that let me down all the time but in the past week or so my arms are beating them by a mile, just the simplest act of lifting a glass or carrying a small plate of food is ended in my arms wanting to do not one more thing other than hang or lie motionless. I mentioned the other day that my posture at time seems to be twisted when I am walking, it has actually been my arms that have brought my attention to it, as they are there hanging, flopping against my side and at different levels. It seems that my upper body is catching up with the speed to the rest of me, I knew it would happen but like everything else it is always a surprise when it actually happens. It will eventually start to create new problems as I am now carrying everything from the kitchen to the living room using both arms, but what happens when I am not able to do this any longer? I know there are trolleys and other gadgets that will be able to assist, but I don’t like giving into these things, at least until there isn’t any choice left. I just had a thought, if my arms can’t manage the weight of a glass of coke, I am not going to be able to push a trolley that weighs far more, but that is a thought for the future.
Loosing control of you muscles is an odd one, yes I have had spasms for years but that is different, they are a short painful jerk or jerks, but once past they settle back to normal reasonably quickly, leaving pain behind but that to clears slowly. Now I am loosing their actual strength, the muscles just can’t do what they have always done, once again it’s a reversal of life, I am back to the ability of a child, two hands required for everything and even then holding things steady isn’t always possible. Then there is the after, the after of what ever it is I have just done, when I am still doing nothing, limbs that ache and pulse and feel as thought they are incapable of ever doing anything. Just as I feel that my posture when walking has become warped, I feel when sitting that again I am sitting all wrong. I am there with my arms and legs just where they landed, unpositioned, just there where they flopped at the end of their journey, allowing what every they are touching to take the weight as they can’t any more. There is no real recovery either, they just lie until required and task done it’s back once again to just being and waiting for the next command. Every muscle fatigued from even the simplest act of holding a cigarette, they tell me they just can’t quite keep up with what I want to do.
I don’t need to flip backwards through my posts to know that everything has change dramatically in just over the period of summer. I can’t give you the date where I was able to do all the small things I can’t any longer, but I know all to well it has all changed. I can’t give you a date as I don’t think there really was one, this has been slow and it has been downwards and downwards only. It doesn’t matter how many times you read of what the future could be like, you still can’t really get to grips with the reality that what you are reading is the truth, your truth. Then it starts happening and still you try to kid yourself that it will just get better and go away, you keep trying to ignore it, to pretend it isn’t happening, then suddenly you have to stop playing games and you have to accept it is really happening to you. So you accept and you wait, just in case you have got it wrong, just in case it all goes away, but is still doesn’t end and you have to go through the acceptance all over again. Eventually you file it along with all the other things that you live with, you stop talking about it as what is the point, it isn’t going to change. Eventually it slips into that spot where everything else lives and when asked if you are OK, you answer yes, despite the fact you have no strength to hold your arm out to draw your husband towards you for that kiss before he heads off to work. It’s just another morning, just another day, just another symptom and life moves on again.
Yesterday slept away three hours of the afternoon, waking at 6pm and back again to sleep at 9pm, another day where there was more to the hours of sleep than there was to those awake. When life is like this there is so little choice about anything, it is a case of just doing and getting through before sleep takes over and you can do no more. I never imagined that my life would be so out of my own control, although I was always one of those people who gave everything to my work, regardless what the job was, or what the wages were, so in a funny way my entire life has been controlled by something, I guess everyone’s is. But the control that your health has over you is something very very different. It is as though my body now even controls my mind, as when my body demands sleep my mind just has to give in, I have no choices, no decisions and no options, I just have to obey. It is really a very back to front world within which you as a person is only allowed to appear for sort spells now and then, before once more the zombie is free to roam. It is clear I guess to everyone, if they were here, that I am almost two different people just now, one who is awake and with it to a certain point in the morning, then after my nap, one that doesn’t want to be awake at all. I don’t believe that I could sleep from 3pm right through to the next day, but I actually think it is possible now that I could just lie there for that length of time, just lie there and do nothing.
In the last couple of days although the sleep has increased I actually do feel some benefit from it each morning, not only am I more awake, I am also more with it, two very different things. For just that short period of hours I actually feel as though my brain can make connections and I am able to make my thoughts flow more, rather than the stilted and jerked second of light before it all goes kind of grey and I sit waiting for the next opening to appear. As always though it is once again back to front, I want those bright spells to be when Adam is at home not at work. I guess we can’t all have what we want.