In the midst of one of those not so good phases at the moment, I've been pondering on how best to explain to those who don't understand all of this (including my neurologist, who I'm due to see next month), that I really am making good progress - even though I still seem to be as bad as ever most of the time. Words don't explain it very well, so I decided to draw a graph instead.
"ill" is at the bottom of the graph and "well" is at the top
Before CAP, every 'flare-up' - over 23 years - left me worse off than the time before. Since CAP, every improvement - glimmer of hope - has been better than the time before. Still a way to go - but that definitely seems to be heading in the right direction!