I am aware of this every day, in every decision I make. Can I afford a bath today? [Afford = how much energy will this cost me? How much do I have in the bank?] Must I take a nap? [This will take 2-5 hours from my brief day.] If I don’t take a nap, how much pain will it cost me? Will my eyes blur? Will I be able to watch tv, or read, or make an art piece, or – most tiring – write?
I try to discipline myself to not think “I used to . . . “ or “What if I weren’t sick?” Pointless reflections.
This has been my life for over twenty years, measuring out my energy in teaspoons; knowing how to make it worse; no assurance of what would make it better.
Still, I’ve been relatively lucky. I’m often – mostly – housebound, but not bed bound. I have, still, my home, my pets, a few patient friends. I have the internet. Brain fog interferes but does not paralyze me. Sometimes I can even drive.