There is something that I know Adam is very use to and that is the point in the evening when my body goes into shut down, I can be sitting quite content beside him on the settee watching what ever is on and my eyes will slowly shut, I’m not asleep, it’s just suddenly, keeping my eyes open is the one thing too much. I can still sit there, still content but using my eyes has become unimportant, I listen to the TV and even talk to Adam, but my eyes are closed and their role unimportant. My legs and my arms will then start to go numb, usually legs first, I loose them. That’s really the only way I can explain it because my awareness of them is more by their absence than their presence. I can sit like this for ages, making the logical step of going to my bed is actually even beyond me as the thought process required is somehow avoided. One thing that I become incredibly aware of at this point is my breathing and how shallow it is, almost as my body needs and looks for little oxygen. Most nights it is me that eventually spots the logical step and I say goodnight before vanishing into the bedroom and true oblivion, but occasionally if I stay there for more than half an hour Adam will make a comment, not telling me to go to bed but reminding me that that should be the next step. Some nights I can vanish as early as 8:00 others as late as 11, but no matter what is happening I can’t stay up later.
You would think that if I am so clearly tired that I would go to bed and sleep but that isn’t always the instant out come and most nights I lie on my back motionless and so aware of me, that I find it a great point to listen to my body. During the day there a distractions that mean your mind has no space to hear the more subtle moans and groans, if I don’t notice them, you might think they are not important, but they are. Those little warnings allow me to prepare, MS isn’t normally a wake up in the morning and you can’t walk type illness, it is a longer slower process and if you listen the warning are there. Probably my left arm is the best example of this that I have.
I remember that for about a week before the lets play dead day, I had had loads of warning. My arm from my elbow to my finger tips became more and more painful, with spells of welcome numbness when tingling replaced the pain, my strength slowly started to slip away and it so happened that it was the week we were putting up the Christmas decorations. I had sat down in tears several times as I either didn’t have the strength or the dexterity to do something, I wonder now if I had listened then and requested a course of steroids if I would have lost it as I did. I didn’t listen and I had that wake up moment. In a darkened bedroom I had put my dressing gown on and headed into the kitchen to make the morning coffee. I put my left hand out in front of me to push the kitchen door open and instead of the palm of my hand feeling wood I felt nothing but heard the thud of knuckles hitting wood. It took years to get back the use I have of it but I will never again have the strength or movement I had before. So now I listen. I take that time to simply lie there waiting to feel anything, anywhere and ready to call out for help as soon as I have an suggestion that something is going wrong. I try to check off the feeling that night, compared with those of the last time I lay and listened, I note the changes and I try to analysis the possibility at that point. I would rather take another ridiculously huge doses of steroids than loose anything else if I can avoid it.
I don’t think it would do anyone any harm to listen more to what they are being told by their bodies, we all ignore things until it is too late, I would seriously suggest if you haven’t listened lately, that you take a little timeout of staying busy, to get to know what it is telling you, if it could save you from just one future problem, those few minutes it takes to listen, could be the most important.