I have already opened all the windows in the hope that getting the place cool before the cloud burns back that I will be able to have a reasonably cool house for the rest of the day. I had my normal nap yesterday but found myself once again lying down searching not just from relief of fatigue, but also from the heat. I am guessing that the reason this year has hit me harder than previous summers is partly due to my breathing problems, it gets harder and harder to breath as the temperature rises. I woke yesterday and today again with my right arm numb from the shoulder down, I still have full movement just that mild pins and needles that always accompanies numbness. I can’t be sure but I did yesterday question Adam if he thought there was a chance that the physio could have caused it, neither of us could but we left out working on my body yesterday just in case. Waking again with little feeling and no other changes I guess it is just me, so back to the physio today.
I just seem to be dreamy and lost today, I don’t actually have any great drive to do anything and I could happily just lie on my bed and dream the day away, that just isn’t me. It is so rare for my get up and go, to get up and leave, I don’t think anyone in any part of my life could have called me lazy, even just for a day. I think I know where it has come from though as a letter arrived yesterday from my doctor, it has the details I requested for sending on to the Job Center and as always reading an assessment of myself written by another, has knocked the wind out of me. I know that everything she has written is true, but it isn’t how I like to see myself, there isn’t any single statement in it that stung to read but still it kind of hurt. I don’t think any of us see ourselves as others do, but when suddenly it is placed in front of us in black and white it hurts! As mad as it sounds I can sit here watching TV and see ordinary people doing ordinary things and I can still see myself there in their place, the truth is I probably couldn’t do any of what I see, but in my mind I’m still there fit and able. Ask me to just hoover round the living room and I couldn’t do it if my life depended on it, I couldn’t even get the hoover our of the cupboard far less plug it in and get to work with it. Still though I want for some reason to deceive myself and can picture myself doing it with ease. I suppose that self deception is something we are all good at, none of us want to believe that we are possible less than our most perfect images of ourselves. That old, slightly over weight woman who looks back at me from the mirror, just can’t be me, so I change that image for one I can live with, even if it is miles away from the truth.
I suppose I made things slightly worse yesterday by going on an internet search for medical research on the effect of MS on lungs, heart, bowels and bladder, it took a while to find what I was looking for as the normal sites just ignore or brush over the ways MS can actually kill. I had stayed away from doing this when I first came home with my new diagnosis, I think it is always wiser to wait until you are settled again. I really didn’t find anything that I didn’t know or expect but again it’s in black and white and you can’t run away from it. As I knew there can with ease be a slow decline in all of them, they are controlled by nerves and well anything that is, is a possible victim. Most people with MS will have no breathing, heart or bowel problems, but those of us with the rarer forms can and do, as I know. What I was wanting to check was the prognosis once the brain damage started in those control areas of the brain and/or the mylin of the vagal nerve was begun, like most things there were no hard and fast rules, but it seems to be about the same 10yrs as I was given for my Emphysema. The real danger is having a flare in those areas as that could just simply shut everything down if it were bad enough, the worst case scenario. I did read through some of this before I went to the hospital but I had skimmed more than absorbed it all, as I didn’t want to build a monster in the corner without some grounded reason. I need to read it and to be able to get a fuller picture, when you are told something, that is one thing, but when you have all the possibilities clearly there in front of you, it is only then that you can start to really understand what is ahead. I really think that it is important to know all the possibilities, I now feel that if something were to happen, I would at least have a calmer reaction to it, not panic and fear.
I think that my fact finding session combined with the doctors letter and of course the weather combined, is probably the reason for not wanting to do anything, it has kind of taken the wind out of my sails if you like. A long sleep seems to be on the books, just how long I guess we will find out.