- it’s fun to be awake & in an upright position

- consciousness is a gift

I have a friend I know from when we were both 6. She is the only person living nearby and so she saw me go from walking through limping to wheelchair on a daily basis. I keep her updated on my health even tho we rarely hang out anymore. She was gonna come over yesterday and I had to cancel. She asked if I can’t hang out later that day. When I said i won’t feel better later, that if I feel that bad in the morning later will only get worse she got annoyed and “joked” that I’m just finding excuses. And I was surprised, she knows all about me being disabled after all? So, a bit taken aback, I told her it’s a normal thing for me.

“But you got the diagnosis now, aren’t you better?? I thought you’ll get better now”

My OH gets upset sometimes because I try to not talk about being sick to their parents and I rarely take up their parents’ offers of help, but it just involves so much ongoing Not Getting It that it uses far more spoons than it could ever save.

We travelled a long way to their cousin’s wedding a few months ago and the hotel turned out to be monumentally inaccessible, and it was made *so* much worse by them not getting that after a nine-hour drive and then the lift being broken and the receptionist being *horrible* and forcing me to crawl up the stairs on my hands and knees, that no, I was physically incapable of going out for dinner and was in fact barely restraining myself from weeping in pain and fatigue. And we’ve been married for more than 15 years; they’ve seen me the entire time I’ve been sick.

And I’ve had total crashes in front of them before, and it was awful, and they were incredibly worried and upset about it, and I had to use spoons I really didn’t have to explain it all, and in the end they seemed to get it.

But it doesn’t *stick*. It all resets.

So that after a couple of months it’s as though it never happened.

It’s like living in Groundhog Day.

Healthy people are just, apparently, incapable of processing the idea that *this is our lives*, and no, we can’t turn it off for fun or to make their lives easier, and resting in advance or getting a good night’s sleep doesn’t solve it. It’s what we live with constantly, and it really does suck on its own, but the constant lack of getting it and blaming from healthy people really does make it so, so much worse.

"It's actually bad."

*I watch the movie*

alicent, literally a day later, barging into rhaenyra's room: hey you chop my dad's head off can you send his ashes home so his urn can go next to my mom's