Thanks, Alice. That helps a lot. My symptoms are so very variable. Since my weakest episodes usually pass quickly, I usually just don't go anywhere during one of them, since I expect to be better soon. And when I'm strong, I don't need a wheelchair. So I've put off buying one. But I'm in the middle of a surprise weak episode--one I can't account for by the usual triggers--so now I'm all confused again.

It really helps me to hear you put my feelings in words. Thank you for that. If I can express to myself what's bothering me, it's much easier to look at it objectively.

Today I am bringing a big camp chair to church so that I can sit in the back and slump. Sitting straight in a pew does me in even when I'm normally strong.

Abby

Wow, you all are really hitting the nail on the head for me with this discussion...

I am really thinking I need to get out of denial about how limited I am and ask for what I need right now. I mean, this weakness and lack of stamina may be a temporary issue but it is significant at the moment. My husband drops me off and picks me up at the door everywhere we go right now. If I had to do this on my own, it would absolutely be impossible. I am self-employed and have worked next to zero hours a month over the last year. If I had to work, I couldn't but since I am self employed and there is no impact, I have just avoided the fact that I have not had the stamina to do it. Maybe if I could conserve more energy, I would have more stamina to do the things I need or want to do. And people probably don't have a clue in my case, including my neuro....hmmmmmmm

Abby, thanks for getting the word out. You are a trailblazer : )

debra

Debra,

Evidently, the best way for me to understand something myself is to tell other people. How convoluted is that?!?

I think that is just it: since our symptoms are so variable, we tend to dismiss them. Yes, I'm weak, but I'll be stronger soon, so this weakness somehow doesn't count...

Thanks,

Abby