Being exhausted is a state of the now ‘normal’, one that you can’t escape or find a way to cure, it just is. There are so many things in my and all others with progressive illnesses lives that become so much part of our lives that we don’t really think about them any longer. Just as you expect to get up and wash and dress and be out of your house on the way to work in under an hour, I expect to get up put on my dressing gown and sit at my computer, never feeling that I could make the journey to the bottom of the stairs far less all the way into the city, that is now normal.
Yesterday when I took a shower and washed my hair, nothing much for most people, but the whole process of getting undressed from my pajamas and dressing gown, sitting in the shower washing myself including my hair, found me having to just sit there with the water keeping me warm for several minutes, as I was simply to exhausted to get out and dry myself. Adam has often offered to help me but somehow I think that for now would be harder for me to deal with. Facing that point when I have to start thinking about taking help is odd, I’m not there yet, but when I was sat there waiting to feel ready to simply dry myself made me realise that it may not be the too distant future before some help may be needed. That is a big step and as an adult not the kind of thing that you ever think you will need any help with ever. We all take it for granted that our lives will continue upwards from the point we can truly call ourselves adult. When we leave the family nest and take the responsibility for ourselves we just don’t see anything else ahead other than an upwards slope, better jobs, better wages, bigger homes, nicer clothes and new relationships. Then suddenly all that is reversed! Doing things that we learned to do as a child and finding like a child we actually need help and to relearn or find a different ways of doing things to achieve the same result is tough.
Progressions are tough, if I were to spend the rest of my life as I am now, well that wouldn’t be too bad, but to not know or have the slightest idea what or how it will happen, isn’t always easy. I know that my muscles are not what they were, that they won’t do the things I want them to and even at times something as simple as typing forces me to take rests, as they just can’t manage the next letter. My entire body is slowly loosing it’s strength, but for now I still manage without assistance, but the progression is showing me that the next step is getting closer every day, I just wish I knew when that step will arrive. How would you manage your life if suddenly on Monday morning you went for your shower and instead of the normal 10 minutes start to finish, you were still there in the shower after 20 minutes, unsure how you will dry yourself. It is a simple thing in life that may give you a glimpse in to what it is like, slowly every simple thing is becoming a slower and longer process, one day it will be so slow that I have no choice other than to accept the help on offer, how easy would that acceptance be for you?