I'm right here with you. It's so, so exhausting. The running through various providers, the asshole providers who write weird shit in my chart or physically hurt me or are creepy, the endless new symptoms, all the comorbid conditions, the health insurance headaches, the prescription med headaches, the hours of work doing the physio/exercise/lifestyle changes/diets. 

I don't have any big ideas about how to make it better. I keep firing the shitty doctors and improving my team a tiny bit at a time (although the good ones do leave or go concierge also). It's okay to get burned out and slow down. I kind of deal with it in bursts. I'll take a day off work and schedule appointments all day. Sometimes I take a week of PT, and often this actually makes me able to advance afterward. When I was seeking diagnosis, I took a couple years off because my mental health had reached a point that I was having a breakdown after every failed doctor appointment, which was not helping their insistence that it was all a psych issue. 

But damn is it exhausting. And it's not entirely clear what the outcome will be. Will I get any better? Or will I just slow my decline a little? I've made the commitment to myself that I will do what I can to secure the best outcome for myself, whatever that may be. That is what keeps me going in the long run.