Wow, my illness has gotten concerningly severe! Not yet bad enough to be called "severe ME/CFS," but my risk of deteriorating to that level is higher than ever before.

Severe ME/CFS is really bad! It means you're stuck in bed at all times, can't move much, can't tolerate much light, can barely communicate, need a bedpan, possibly can't have normal solid food, etc. It's this on-your-deathbed state that you can be stuck in for many years. (It obviously puts you at a high risk of death from anything else, but it's usually not fatal on its own.) If you ever need to leave home, eg to go to the hospital, that can make things much worse indefinitely.

(See: Physics Girl, Whitney Dafoe)

Unfun fact: There have been a few rare cases of people being involuntarily psychiatrically admitted for this. This is, of course, extremely bad for their health.

A few months ago I started thinking I was in the clear. Because I went 5 years without ever deteriorating that badly beyond my initial severity. But now, I HAVE deteriorated! Oof. Who knows how far I'll fall.

Two things stand out:

1. Wow it's socially awkward to handle this. If I tell people about this, and they truly understand me, they are often horrified. And when people are horrified, they don't know what to say and they feel alienated.

And then I'm socially isolated! Oh no! Bad for mental health.

2. Outsourcing labor is hard. Oof. Sam's doing SO MUCH for me, but we're still bottlenecked on his cognitive/emotional energy. I have more money than I have health, so I'd like to throw some money at this problem, but it's hard to find the ways to do it.