Here is a little diagram I drew to try to explain why managing this invisible, variable illness can be so damn difficult.
(I've been having an unexpected few days of reprieve: clear headedness, less symptoms and I seem to be getting away with a higher level of activity than I have for several months. I talked to my housemates and had a good laugh for the first time in a month, and I even played the piano for the first time since Christmas! In the past I would've thought "yay I'm finally getting better!". But now I totally don't trust it. It's like if a cruel jailor suddenly starts being nice to you. I know Im probably pushing the boundaries and falling for the 'do too much when you feel good, then suffer later" trick. That I'm probably in the green and purple zone, rather than an expanded blue zone. But still, I can't stop the hope that this improvement is for real from bubbling up....)