I spent most of yesterday in my bed, not always asleep but always feeling terrible. On Monday evening I was shattered, I simply had not strength or inspiration to do anything other than sleep. I had pushed myself to stay up until the 10 o’clock news but I couldn’t even make it thought to the end. After just two hours sleep I woke in not just pain but with the feeling that my entire body was wrapped in shards of glass, some piercing me with a cold so intense that it burned, others twisting their way through my skin with a force that left my insides feeling as though they would explode. I spent the entire night between sleep and pain, having to get out of bed on occasions as the pressure of the mattress was unbearable.
Yesterday I was drained, there was little that I could do and little I wanted to do. The pain had subsided to bearable but had left behind bruising, not physical but deeply felt. I was zombied, no other description could apply. Apart from a couple of hours in the afternoon I still couldn’t sleep. All of my muscles were tensing independently, some to cramp level others within a whisker, none responding to my command to relax. There was a complex combination of crippling numbness, pins and needles replacing themselves with swords and sewers. I couldn’t write, I couldn’t play complex games just mindless one’s, badly, but that was more successful than my attempts to watch TV. There was little escape and little relief and nothing I could do.
I know that I shouldn’t have done it, but I fiddled my meds and managed to get 10 hours of much needed sleep, waking with the alarm and the instant knowledge that I still wasn’t clear. This is an MS flare, nothing about it is within my control, nothing about it is pleasant. What it’s outcome will be and when it will settle is unknown. I am forcing myself to think and to type to get this down as it is happening so there is a record. I couldn’t have done this yesterday, so that means there is an improvement today, but I want at this moment is to escape it. I wish I had the drugs to safely put myself to sleep for a few days, I don’t, I just have to keep going.
Adam is on holiday and I am doing my usual act as much as possible that things are normal. I know I can’t hide it and I know that he can see it, but I am not going to let him feel it. If I am honest I would rather he wasn’t here today, the act is hard to keep up and I would rather have the space to cry, curl up and vanish. It has taken my over 3 hrs to get to this point, my fingers are dyslexic and my hands made of slippery sponge, my mind is spinning through areas of nothing, finding small sparks of normal. The centers of the pain today are my legs, so I am moving as little as possible.
This is life with MS, this is were I and thousands of other are at this very second in time. I don’t want sympathy, I don’t want pity, I want relief.