I also have some permanent health issues (not as serious as yours probably, but still) and I totally get the frustration of people applying wishful thinking to your situation without having any experience with the kinds of problems you're facing (as is happening in this thread).

I know it's not what you asked for, but feel free to drop me a line anytime if you need to talk to someone who has at least a slight chance of getting it. I can be reached on gmail under the same username.