[poem] I want to be fragile
I want to cry and scream without worry of tomorrow's body, the ways my actions create myself. The last few months have been hard, and I'm tired of bargaining - half an hour of distraction in exchange for letting fatigue lodge for a week in my brain, body, extending the contract because I need something, anything - and all the cleaning up afterwards. I want to let go, to curl up with my head in someone's lap and cry as they watch over me. I want to be fragile - and I want it not to matter that I'm fragile. But who could protect me from my own body? I play both roles, watching vigilant over myself, checking my actions, always, against hard won knowledge of what will hurt me too much to be worth it. I let only part of me curl up small, scared, another creature crying for things that will never change.
One of the cruelest parts of ME/CFS is post exertional malaise, a worsening of symptoms after physical or cognitive exertion. This can lead to a very limited set of safe activities that won't trigger symptoms. Dealing with Disabled grief and traumatic symptoms requires emotional processing, but figuring out how to do so without triggering PEM is... difficult.