I’m lucky that mine isn’t as severe as it could be. I’m not bedbound and I work from home, which I can still do, though on some days I need to lie down for a couple hours midday and work into the evening to make it up.
But I can’t do the things I used to enjoy like hiking, cycling, going to the gym. Even non-active stuff like chess - the brain fog affects how well I can calculate and I’ve lost a ton of rating after six years of steady improvement. Immune system is fucked and I keep getting skin infections. Can’t digest food very well, can’t even chew very well due to inflammation in my jaw. Can’t sleep more than 4-5 hours a night. The nervous system impacts everything.
So basically it still lets me do my job and pay my mortgage but everything I did for fun is out of reach. Not a great quality of life.