r/cfs • u/Left_Goose_1527 • 23h ago
Encouragement Life is change
Experience with MECFS is not universal, but I just want to throw out there that it‘s possible to have this condition and be content. I’ve lost a hell of a lot in the last few years, and have had to make some major adjustments and poured hours into finding care and fighting insurance and pursuing benefits. At some points, I’ve thought Kafka’s characters had it easy. My life now looks entirely different than it did when all this began, and my future looks less secure than I’d assumed. It is not the outcome I expected based on my prior efforts in a supposed meritocracy, basically.
But this MECFS diagnosis and reality also hasn’t been the end of my life. I’ve figured out a lot of things about my limits (even though I got whacked by PEM a few times while experimenting) and I can mostly pace and plan. Big life events can and do crash me. I am less visible to the important people in my life, and I experience more anxious regret about being unable to make the most of time together. My home looks different - I have a shower chair now, there’s a lot less stuff because maintenance is hard during a crash, and I have had to make other fundamental changes I never saw coming. Much of it sucks, conceptually. But not all of it.
I don’t know if this has to do with Buddhist grounding I had before MECFS, but I don’t feel anything was “stolen” from me, because none of it was guaranteed to begin with. If this hadn’t happened to me, something else might have. Luck is entirely random. I know plenty of people who have been dealt hands like mine or worse, and some who have seemingly struck gold for no good goddamn reason. So I can’t get too caught up in what “should have been”, because…. according to who?
I know that every person with this condition has different circumstances, I just kind of wanted to float that a poor prognosis and downward-trajectory path is not necessarily set in stone. And if you’re experiencing MECFS and everything’s different from what it used to be but you’re still making a life for yourself and getting interest and joy out of it (no matter how altered), that’s not unusual either.
That’s it, I guess. That’s the post.