…Is how my life seems to be slipping away from me at the moment.
A few months ago I went to see a specialist in Leeds – an immunologist, no less! – who has now officially confirmed what I and my GP already knew. I have M.E.
I’m lucky in that I seem to have settled at the moderate level; the level that on a good day means you can still potter about and still manage some day to day tasks. I’ve only got to deal with the pain in my joints and muscles much of the time, the days when it hurts to hold my head up and the days where making a sandwich seems complicated. It makes a cold – the normal head kind that only last a day or 3 – last upwards of a month.
Think of it like this (and this is a very simplistic explaination); your immune system fights things off for you. Often the symptoms that make you feel bad are those caused by your body fighting the interloper rather than being caused by the interloper itself. My problem is that my immune system keeps switching itself on and attacking interlopers that aren’t there and so I get the flu like symptoms of my body fighting the flu without the virus being present.
Its taken months for it to sink in that I won’t suddenly get better next month, or that there isn’t currently a medical treatment for the illness, only management methods. With my medical history its pretty much a text book case of M.E. and over the few months, I shall hopefully be guided in how to manage the condition with pacing/graded activity.
In the mean time, I really am having to take it a day at a time. I’m just about sticking to a daily routine.
One of the things that is keeping me going is the Spoons Theory.
Written by a lady called Christine Miserandino about explaining her lupus to a friend of hers it explains very well how hard trying to cope with a “hidden” illness, can be. She has a website called butyoudon’tlooksick. My favourite part of the theory that is she would say to people that “they should feel special when I spend time with them, because they have one of my “spoons” “.
I’m doing my best to learn how to keep a spoon or two in reserve.
Just to give you an idea, this post has taken me well over a month to put into words.
I desperatly want to keep this blog going and entries may be sporadic depending on my spoon levels.
Photos will come as and when I feel up to taking them or remember to post them, but I will try and include them as often as possible.