Unfortunately, there's always a fall after a jump...
After the fabulous weekend and Monday is here and I am not too good. I cannot get rid of the pain in my head - then again I haven't been able to get rid of it for weeks. It feels like a really heavy weight inside my head just sliding from side to side, yet at the same time it is focussed over the right side of my head. My vision is blurry - and I guess it isn't helped by trying to focus on the laptop screen.
It hurts to sit upright, so I'm sort of propped up with pillows but lounging back. If I go more upright I get too dizzy and have to come down again. I managed to feed myself cereal, but I missed my mouth more times than I got it in. Yet again, it took more effort to swallow than I like. With the aid of my walker trolley I have managed to get myself to the bathroom, but it takes time and I feel as if I'm going to pass out constantly whilst moving. Once there, I have to sit and wait to build up the energy to come back to bed.
I've managed to drink, again dribbling everywhere and finding it a strain to actually lift the cup. The weakness in both arms is annoying. I'm used to the lack of co-ordination in my right side. I know it's weak, I know I can't grasp things properly but I'm now getting a weakness in my left side too. My body aches all over. It is laborious to even breathe. Everything takes so much time and so much thinking about. Even the basics. Cup moves towards the mouth, I need to tilt it, I can feel liquid in my mouth what do I do? Okay need to swallow, and then repeat. I cannot take anything for granted.
And why am I writing all this down? Believe me I do not want sympathy. I want to be taken as being just like everybody else, but I do want people to understand what a struggle everyday life is for me at the moment. Mand and I were accused of being negative about everything a few months back and never looking on the brightside. But I am being positive. If I didn't I would go even crazier than I am now. The very fact that I can celebrate the fact that I have managed to feed myself this morning and show it as such an achievement. I'm not being negative by saying that this is only what I can do. By saying it I am showing it as a positive.
I am grateful for being alive and being able to do things. There are so many people out there that cannot do as much as I can. I have had to come to terms with not being the person I was. I will never teach again. That is such a hard thing to accept. I have accepted it. My life needs a new direction. My longterm target set with the CFS specialist is to be able to shower myself. A tiny insignificant thing that so many take for granted everyday. I have to build up the energy to be able to get into the shower and sit down on the shower stool. I often don't even have enough strength to hold the showerhead. I cannot raise my arm high enough to be able to aim the water at my back to rinse off. I have to have Mand wash me and help me every step of the way. I try to do what I can, but it is very little. And after Mand helps me out of the shower cubicle I have to be wrapped in towels and sat down to recover before I can start the process of drying myself. And then wait again before I can dress. Or have Mand dress me which is more often the case. This is everyday life.
Life is a struggle, I am determined to keep living. We had plans to do so much, we are not giving up on those plans but having to adapt them. I am not giving up.
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