This is the first time I have ever really spoken freely about my illness outside of my immediate family. I don’t know if I like to talk about it always or not. It has become so normal to me that perhaps I see no need to talk about it. It is taken as a given that I feel poorly everyday. My symptoms are ever present, lucky me! I think I needed this outlet though. I did. I needed to feel that I could communicate freely with others who are in the same boat. We are in uncharted, rocky waters, but at least we are together. Even if nobody reads it, I think I needed to do it for myself, to get things out of my system…
I can understand that people want me to be the person that they knew and loved for 21 years. Nobody wants that more than me. But for better or worse, times change. With M.E. most things are out of our control. There is very, very little we can control. We will inevitably have to cancel plans because our brain has decided to be an awkward bugger for no apparent reason. It is no ones fault. You may not hear from us from time to time. We may not reply to a text. We are not ignoring you. We are poorly. Very poorly. We are not doing it on purpose. We are not pretending. Why on earth would we have chosen this life of invisible but constant illness? And nor are we depressed and lying around feeling sorry for ourselves, wallowing in our own pity. Depression can come as a result of our illness. M.E. has taken our lives, but it has not killed us. We are in some kind of limbo.
Who wouldn’t feel down in such circumstances; When you are too weak to make it to the toilet and so you wet yourself or have to have someone spoon feed you or dress you and brush your teeth for you?! Our 100% may not be nearly as much as the average persons 100%, but we do try to give all we’ve got to maintain our relationships.
Fatigue is not tiredness.
It is hard to imagine how weak or fatigued you are with this illness. I’m sorry if you can imagine as it means you must be a fellow sufferer. I wouldn’t wish this on anyone.
Sleep does not improve our condition. In fact the mornings can be the worst for me. We never wake up feeling refreshed or rested as human beings should. We are often hit by night after night of insomnia. Staying up all night is not nearly as fun as I remember it being at university!!! We are not lazy louts who lounge around all day watching television. We are often too poorly to watch tv. It requires energy that we do not have. It is simply too much for our brains to process. With me, my vision is still affected by my M.E. and so this makes it difficult to read a book or magazine. If my vision was to behave, my concentration levels are not always up to the challenge anyway because of the overwhelming fatigue.
To cut a long story short, our bodies are not able to produce energy like they once did. Our batteries are flat and nobody knows how to recharge them, other than to rest but even that only charges us to a fraction of what we’d hope for.