Mere,
I DO hear your feeling that you will 'check out'. I have said that a million times in the last 10 years....but...I am still here! I guess that merits a hooray!
The huge KEY to living with this condition is an acceptance that I indeed MAY check out, and not much I can do about it! I would so love to be 'normal' for one day. (On the other hand, if that happened, I would bemoan not being normal for yet another day.)
Yes, it is depressing...but it is what we have been dealt. At times I want to bop some healthy person on the head, just for being healthy!