For a quick background, here are my current diagnoses: ME/CFS, clinical encephalitis, Interstitial cystitis, severe OCD, and hyperadrenergic pots.
I live with very severe fatigue and have constant crashes, I spend a lot of time stuck in bed resting, not sleeping, just laying there. A lot of preparation went into this week, lots of rest, my mom drove me 6 hours to south Florida to see my favorite band. I hardly got any rest (in the hotel). When I got to the venue we realized it was standing only; that probably messed me up but I made it through the concert and back home. 3 days later was my uncle's funeral, as we drove up to the funeral home I got out and fell towards my grandpa and he caught me, my mom asked 'are you alright?' and I said, 'no I'm going to pass out'. They both carried me to the back of the truck to rest. Whatever it was passed and I made it inside to perform my uncle's favorite song; I haven't played in front of a group of people since 2007 b/c I'm so ill.
I'm back home and I feel like I'm dying. Spent 6 hours in bed today resting, it never seems like enough.
I'm not doing all I should for my dysautonomia. Really all I'm doing is taking Bystolic which has helped tremendously. The OCD took everything else away (salt tabs, compression socks, etc.) because it is torture. I can't drink a ton b/c of severe IC, I already wake up every hour at night to use the bathroom and I've done everything for that except for having my bladder removed. I also need long periods of rest.
Any ideas? Tips?