November 9, 2006 at 4:18 pm

I am so sorry you had to be affected by this syndrome at such a young age. I was almost 49 & am still angry about it. It is even harder when the people who are supposed to love us can’t understand how difficult it is to try to make damaged nerves work all day, & the resulting fatigue that goes with it. No matter how tired I tell my family I get, no one can really understand it. But I did have a very severe case of CIDP & was in a power chair for almost 3 years. I now walk with AFOs & a cane, but everyone seems to think that I am sooo much better, when in fact, I feel pretty crappy most of the time. If your mother doesn’t understand by now, she probably never will.

What I worry about more for you, is the stress you have to live with. To me stress & lack of enough sleep are our worst enemies with this illness. If you can’t work things out with your mother, try to find alternative living arrangements. I know, easier said then done. I have a 30 year-old daughter & would be devastated if she came down with this illness. I already have a 25 year old son who is a para from birth, but at least he feels good. He has always required a lot of sleep since birth, but I could understand that, as everything he does is harder for him than for a normal person.