I just saw a video of a woman with ME who was set to be medically euthanized in 2024 (because severe patients qualify in most countries) and it's just....scary to know I could get severe enough for that. at my lowest I actually looked into it, and obviously as a moderate case I wouldn't qualify, but to know that one wrong move could throw me into the very severe category is terrifying. One mistake and I'm bedbound, no sound or sight tolerated, lying in the dark with an eye mask, unable to digest food anymore, body shutting down.
thats the same disorder i have. its the same one. those people, who have a quality of life often described as similar to end stage AIDS, are me.
people fluctuate between stages often and dramatically, and Ive gone from mild to moderate pretty slowly. it feels like only a matter of time before i get severe (not to be confused with very severe) and then what if I get even worse??? Sure it sounds like im worrying for nothing but im not. i can do something as simple as cry at a tv show and suddenly find myself bedbound.
im constantly terrified. im constantly trying to upkeep my baseline, and any time i do something to throw myself into PEM, i wonder if this is it. if this is the time i get sicker.
its a hellish way to live.
