It's so hard to say something that will help because it's so hard for someone who hasn't experinced this to understand the difficulties. It's hard to understand myself how it has changed my life. Even the mechanisms aren't always apparent. I'm sure it's pain and fear of pain but there seems so much more, so many little unidentifiable things that just undermines one and his desires. It seems it's a process that damages functions which I always have to try to keep at bay. It's the "work" required to divert one's attention from pain.

How does one describe such things to someone who hasn't experienced the pain and can hardly imagine fighting this 24/ 7 (well, I usually get 5 hours of peace at night)( the pain can shut off like a light)

Sorry I can't help. I've pretty much been a victim of whatever is thrown at me but I shouldn't complain since it could be worse.

This thing probably isn't final. It seems there's always another step in the system. If it goes poorly try not to despair.

Good luck.