There's a laundry list of weird and ever-changing symptoms which is pretty typical of LHers, but I can try to sum it up with:

• there's not been a clear means of diagnosis, everything is uncharted territory and the symptoms have been hellish

  • about 90% of doctors don't believe you
  • 1/2 of the doctors that do believe you only believe anything they're told when it comes from me, the non-sick person because I'm a guy. Seriously, even women doctors mostly just assumed we were making stuff up.
  • arguing with a neurologist to get a referral for a dysautonomia specialist, having him literally roll his eyes at us and saying 'fine, whatever, I'll send the referral'
  • getting a positive diagnosis for dysautonomia from the specialist, dysautonomia is a common comorbidity with LHers

• the sick person asking if she'll die from what her heart is doing to which the cardiologist pauses for a good 20 seconds, stares at the ceiling, then shrugs

• terrifying neurological/cardio/mental/etc symptoms (and so, so much more)

  • There was something akin to sleep apnea for 6-8 weeks where blood oxygen saturation would fall into 70s-80s, nearly every time a REM cycle would begin, then she'd jolt and panic
  • persistent tachycardia/chest pain/palpitations

• Lay people and non-doctors constantly trying to tell us that they've got it all figured out, we just need to meditate/drink tea/buy snake oil/etc

  • hot tip: they don't know shit

I kept a journal for a while but I really don't like think about it if I can avoid it. What I've typed here is just hitting a few high points that came to mind first- the earlier days were far worse than now but we still have bad days and deal with PTSD. I'm worried I'll snap and get violent with people who are callous and foolish about prevention measures, the vaccine caused a pretty major relapse (a crapshoot for LHers) so it's extra dangerous for us with the numbers being as high as they are.