I'm lucky, because now people can actually tell something is wrong with me!
I used to find myself trying to explain things like fatigue, balance, etc. It still drives me a little crazy when someone will say, "you seem to be walking so much better" or some such thing. I know that they are just trying to pass on their positivity to me, but I have to bite my tongue to not respond "actually, I'm not walking any better than I was the last time you saw me".
I don't feel guilty anymore that my house isn't dusted or the floors aren't mopped. I never have kept a dust-free house because it seems like such a waste of time and effort only to have things become dusty again a few days later. Anyway, the only thing I try to do is keep the toilets, sinks and shower clean.
I also try to run the Swiffer over the floors every day because of the massive amount of hair that comes off of Montana.
I don't work, and don't feel the least bit guilty about that. I read a lot, knit, and spend a lot of time on the computer. I love to play mindless games, it's quite fun!