Like me you need a reason to carry on to keep fighting, I feel totally useless my wife even has to open a packet of crisps for me. Stuck in this house knwoing that I'm ultra-hypersensitive, slightest knock can make it spread, slightest wound will never heal.
Theonly reason I have is fighting to make the Uk governemtn do something because we have at least 250,000 un/misdoagnosed sufferers, it's heartbreaking at times because no one over hear seems to care but it justs makes me more deteremined and when I go at least some people will know that I did everything a simple man could to help a quarter million people and thats worth struggling on for.
Perhaps you could do something similar in your area.