I had to head to bed early again last night, a bit upsetting really as for the last couple of weeks I have made it through to 9 pm every night, then last night appeared and I disappeared at 8. I had found myself drained almost as soon as I had gotten out of my bed from my nap, it sometimes happens like that almost as thought that sleeping during the day has left me with less energy, than I had before I went to bed. Yesterday was pretty much like that, I slept well during the day and didn’t want to get up when my timer sounded, I had a great urge just to switch it off and return into warm comfortable sleep. Once out from under the covers I headed as fast as I could through here so that I could cover myself in my sleeping bag and finish the odd bits I hadn’t before I gave in and slept. I guess I had been tired all day when I think about it, as I had spent all morning cuddled up in my sleeping bag which I have here at my PC. I can’t work out where it comes from, but there always seems to be cold air around my legs and just like keeping my feet warm makes a huge difference, I also need my lower legs warm, a sleeping bag has proved the best option. The house wasn’t cold in any way, but that’s how I know I was tired, the two always are locked closely together, by the time Adam came home I was sat on the settee with my huggy blanket tightly arranged around me, something he commented on as soon as he entered the living room. I don’t know why I have been more awake recently or even why I am now once again tired, it just happened with no trigger that I can find. Sleep really is one of those phasic thing when it comes to illness, once triggered it hangs around for a while and you just have to go along with it. If I was being totally truthful about yesterday I actually wanted to go back to bed at around 7, but I also wanted to spend some time with Adam. Yes you can fight sleep but only for so long, eventually it will win regardless what you do to try and beat it, fight it for more than a couple of days and you will pay for it in big style.
I guess almost the same can be said of any of the symptoms I live with, you can fight so far and they will them win. It’s not just sleep that has suddenly started to beat me again, I am also once again finding sitting a painful thing to do. It has been building up slowly again and has now hit the point where I feel pain within half an hour of getting up each day. I have once more spent many hours switching around my collection of cushions, shuffling myself from one side to the other and repositioning my weight on each thigh. No matter what I do I can find little relief for more than a few minutes, then it starts all over again. I am really not sure what you are supposed to do when your entire waking hours are spent sitting, despite being supplied with cushions, none of which actually give any of the relief I am searching for, all you can do is accept yet more pain. Well there is actually one answer but not one I want to accept, I could stay lying down all the time. I can’t accept that I could be made bed-bound by a painful bum, it just sounds so silly, mind you I suppose if I was in bed all the time I would soon stop worrying about how much time I slept, as I know me once horizontal I would just sleep all the time.
I can’t say I have actually ever really put in much thought in to what my life would be like if that happened and I confined to my bed, I guess it is like becoming housebound, I avoided thinking about that possibility until it happened. If not thinking about something stopped it happening, I wouldn’t be ill at all, as even when diagnosed I tried not to think about it, just to live with it. I guess none of us want to face up to the facts of the future as they are just to painful to bear, so we shuffle them into a space in our minds marked “not happening”, then pretend that space doesn’t even exist. I know I didn’t think about being housebound until the day it happened, waking up with a dead arm and no way of working my wheelchair, kind of forced the issue. So you would think I would have learned my lesson by now, especially as I keep telling people that you have to plan as the reality isn’t as horrific as it might seem, yet I still won’t plan what might be the next steps. I guess none of us even when it is staring us straight in the eyes, want to see ourselves in a worse condition than we already are. So I still tell myself the same silly lie, I have loads of time to plan, so much time that it doesn’t matter right now, does it.
It wasn’t just a painful bum that started me thinking about the possibility of being bed-bound if I am honest. All morning I have been sat here with spasms passing through my legs and my feet. They started in my toes as they suddenly curled and locked, I tried to flex them with the result of my calf muscles joining in, which always causes pain in my shins as well. For three hours now I have been trying to unlock them without much success, I wanted to go to the kitchen but when I tried to stand up the spasms got worse, with pain also in the backs of my knees, I was going nowhere. I was really stuck here for about half an hour, yes if I had had to go to the loo, I would have accepted the pain, but there is a danger when my legs are like that, that I wouldn’t have made it there, I would have found myself either on the floor or stranded at one of my perch points. This is far from the first time this has happened but if anything was going to make me bed-bound other than my legs not working at all, this would be what would put me there. Despite being able to think that all through I still don’t want to make the next step and plan anything. Being human means not facing reality or even thinking about it, we really are strange creatures.