Maybe the worst part of being undiagnosablly ill is people thinking that you aren't sick at all.
They see him drop Yoda off at school, and have no idea how hard he struggled to get out of bed, much less out of the house.
We have lunch at a restaurant and people stop to say how glad they are that he's feeling better. He's not, but he smiles and nods, because saying "I feel like a $#!+ taco," just isn't something you tell people in polite conversation.
He walks out to get the mail and it might be the only time he sees the sun all day.
He's not better.
To be fair - he almost died. That's real. He laid in ICU and when I told the nurse I was running home to check on our kids and she said, "I wouldn't." I told her I lived three blocks away. She shook her head and said, "You might wish you'd stayed."
It was that close.
It's true, we are no longer hanging on every breath like we were before Christmas. But we still hang on every laugh, every dinner together, every smile, every good day.
There is no name for what is going on, but it's always here.