I'd much rather talk about my sex life and, as may be, non-sex life, but sometimes I need to vent about this stuff.
And keep my friends in the loop.
I'm declining fast. On the #MECFS side, I'm well on the trajectory from housebound to bedbound. I haven't driven in well over a year. I haven''t left the house at all since January, after a half-day of cognitive testing devastated my capacities.
We're not making many more medical appointments--even telehealth--or diagnostics. Because the vast majority of doctors can't bring themselves to say, "We don't understand much of what's wrong with you. Even if we did, we have no clue how to help you. You're not dying, but let's switch to focusing on palliative care."
They won't do that. They'll send me to another specialist. Or for another test. I do have a palliative care provider, and he's great, but he keeps cautioning they may yank me out of his rota at any time since I'm not dying.