I’m having an odd week. I think I am mentally, emotionally and physically tired. I had another run of terrible gastric pain and my trouble sleeping has continued. I think it’s taking it’s toll.
Through ME/CFS Awareness Day I read so many stories of people with ME for years and year. 9 years, 10 years, 15 years, 20 years, 35 years …
I know I believe, from what I have read (and read extensively) that ME is not cured. It can go into remission but you’re never completely free of it. I don’t want to believe this – I want to believe I have something that can be fixed. But no, 95% of what I hear and read and feel is ME is an illness that never totally leaves you.
Somehow I manage to pin that belief on all sufferers except for me. Until this week – when it finally rang in my head that I may never never be rid of this illness. I might achieve remission and maintain hope. Hope of remission, hope of treatment, hope of a cure.
So I have this thought in my head and it’s creeping into my heart that I’m always going to battle with this. I’m never going to have a clean bill of health again.
It’s infinitely easier and more possible that I will get worse than better simply because I only need a small window of stubborness and/or stupidity to worsen my health. And I want to scream and wail and let go.
I am not ready for this idea. I am not able to think it can be true.
I’ve always thought “One day I will go for long walks again”, “One day I will cycle all day”, “One day I will spring about with energy and ethusiasm”, “One day I will be able to do all those jobs around the house for my mom”, “One day I will have that fitness freak phase I always promised myself”.
This does not sit well withe the idea that I will always have ME.
I can only hope that remission will allow me these freedoms.
But for now I can only try not to think about any of it too much.