thanks for the replies it is nice to know there is people who have some clue what it is like. i will be a regular member and i'm glad to not have to act like all is well.
today is better day off work and good long sleep in
I know the comments are well meant, but sometimes the "this only makes you stronger" stuff drives me nuts. I don't want to be stronger! I want to be normal. I want to be healthy. I don't want to have to pack my own personal roll of toilet paper everywhere I go. The only meant-to-be-encouraging comment that bugs me more is "well, at least it's not cancer!" Gee, thanks. That helps a lot. I try not to let the comments bother me, because I know they're trying to be supportive. But sometimes I have to hang on to my temper with both hands.