Yeah, like I'm not that bad all the time, usually I'm pretty okay, and can live my life fairly normally, but when it gets bad it's BAD. And when that happens I can't push anything, physically or mentally, I just have to rest. I go for walks when I'm up to it, try to have some semblance of a routine, eat fairly healthy, get some exercise, hang out with friends, all that stuff. I'm actually doing way better than I was a few years ago. I still have a long way to go, but I've already come a long long way. I still end up in a slump quite often, but it's in general an upward trajectory. I count that as a victory. Not in the "I'm accepting that this is the end" way, but in the "hell yeah I came this far" way.

[–] Zink@programming.dev 1 points 11 months ago (1 children)

Right there with you! I remember saying multiple times in appointments that as long as my trajectory has a positive slope, I can’t be unhappy with my progress.

[–] Captain_Waffles@lemmy.world 2 points 11 months ago

Yep, like at one point only needing my rescue med three times a week was an improvement. I can only take it three times a week, and would just have to suffer waiting till I could take more. Then it was two doses a week, and now at about 1.5. It's not good, but it's better. I'm not expecting miracles, I know it's incurable, but I'll still try for better.