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.
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.
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.
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.
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.
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.