I imagine it’s hard for a parent to hear their child say that they’re feeling so poorly they worry they won’t wake up tomorrow; that they feel so poorly they’re scared that they might die in their sleep. There are no tears or hysterics when I say this to my parents. Just a matter-of-fact statement indicating just how poorly I really feel. The smile hides a lot you see.
This fear is different from mere worry. I’ve always been a worrier and about the most ridiculous things too! If I could go back in time I’d grab my younger self by the shoulders and give her a firm shake… But then I probably wouldn’t be the person I am today. Now it is definitely fear that I feel though, not worry.
These fears aren’t ever present but when they hit me, they can hit quite hard.
I imagine these are shared by my fellow sufferers: The fear that benefits are being cut and if it happens to us we will be left unable to afford food. The fear of being left homeless if we cannot afford this months rent again. The fear of what we will do as our parents get older and need caring for themselves.
There is the fear that things will plateau or decline and I will spend the rest of life like this. Sometimes I think I fear the uncertainty of it all. The only thing I am truly certain of is that I will wake up tomorrow feeling poorly. Sometimes it is very hard to fall asleep knowing for certain that it won’t be any better in the morning.
There is the fear of what I will do should something happen to my mum; the one person who seems able to read my mind. I fear it so much that I almost start to prepare myself for when I cannot turn to her. Yes there will be others around and I will always be looked after, but my wonderful mum has slotted into her role as my Wonder Woman with apparent effortlessness. It just wouldn’t be the same.
There is the fear of payback. I am careful to have days or weeks between ‘activity’ because it’s the sensible thing to do, but knowing that the payback will be worse if I see friends too frequently or bake a cake too frequently can almost prevent me from doing things too and that isn’t fair when I am already having to miss out because of my physical health. I have a fear of being forgotten by the friends I shared my life with before I was ill. I have a fear of the future. Sometimes I even fear tomorrow. I fear what is happening inside my body.
There is little comfort in people saying “Keep things in perspective.” What is the perspective? That I’m not terminally ill?
This fear is unfixable. It comes hand in hand with an incurable chronic illness.
Mostly I am in fear of the illness itself and its unknown. I am scared of M.E. I am petrified that I will have to move my bedroom back into the dining room for a start. I am petrified of having to start all over again. I am petrified that this might be a relapse rather than just another setback. Petrified.