Today is ME/CFS Awareness Day. “Making the truce, a short note for ME Awareness day 2011” by Jane Winter talks well about flare-ups: how they are not just hard for what they mean in the moment—even more restrictions than usual—but how they are frightening because they could be the beginning of the end. And remember: it’s invisible.
“Here’s the thing though. Every time, *every* time a flare up happens, even after six and a half years of being bounced up and down by ME, you think “Is it now? is this the time I won’t bounce back? is this the time I will get worse and worse, back to how I was at the beginning, or further, into the 25% of sufferers who are bedbound?” The thought is, every single time, terrifying.”