gloamy

-you're not going to understand the short answer

-you didn't ask the right question

-there is no short answer

-there's a dozen short answers and i think that's neat

-there's a much more interesting question you could have asked, buckle up

-this is going to be really funny in five minutes, hold on

-last time i said no you got mad but the answer is still no

-last time i said no you got sad and i can't take that again

-i've been thinking about neolithic bedbugs all day and you cracked the seal

-this reminds me of something more important than whatever you just said

-i just remembered what i meant to tell you last time you asked something sort of like this

-i don't like you so we're gonna talk about my thing instead of your thing

-i love you so here's the coolest thing i learned lately

-im not hungry so i forgot to do the part of the conversation where i tell you i dont want dinner when you asked what i wanted for dinner because i don't want anything so the question is returning a null integer. did you know bed bugs might have originated in neolithic caves and switched from infesting bat fur to infesting human furs when humans started inhabiting caves and driving all the bats out, and they've lived in our beds for a hundred thousand years. did you know that cellar spiders are almost always the descendants of cave spiders, carried from quarry to foundation and left to flourish for decades, centuries. did you know that a possible origin for the american house cockroach was probably a bark-dwelling species that kept getting transferred into the walls and roofs of new houses and then found an endless wealth of crumbs in their new big square tree. can you feel some kind of love and reverence for these strange neighbors of ours that we built into our homes over and over and two whom humans are an endless and eternal blessing. isn't it nice to think that to a few precious, annoying little critters, we're home.

-i know there are social conventions that will influence how you perceive my response / what that response should be but i dont know what they are so im going to be as explicitly clear as i can be but it takes longer to explain

-i didnt understand the question or hear it properly and am sort of hoping youll take the hint because ive asked you to repeat it three times already and its embarrassing

So when you're through with the epiphany of how to make it physically possible to make the thing you're making, and you're sharing the plan with excitement, because the hard part is over, and now you only have to get your hands moving and do it, they get mad at you like

"it's not that easy! It's a lot of hard work! >:C"

they mean it, because

to them, working is the hardest part.

this is the first I’ve ever heard of “knives” in the context of disability, but I’m disabled and retired entirely because I took more knives than I can even begin to count at my old job, and was never given a chance to recover from all the stabs and slices

Until my neck subluxated and now I can’t sleep on that side without compressing some vital nerves and blood arteries. I also can’t sleep on my back right now because the pressure compresses my occipital nerve. Basically sleeping has been a nightmare recently, but that’s not the point of this post.

The point was I brought this up in physical therapy to talk about how great this pillow is because I can now sleep on my right side without the stupid thing going numb or waking me up because it hurts. And my PT was like wow, great! How did you sleep on your left side for so long without it being an issue?

And I said, oh that’s easy. I just tuck that shoulder out of the way.

And she said, ...what?

And I said, yeah, I just tuck it out the way. Not like my right shoulder. That one doesn’t move as well. It just hurts, I think there’s something wrong with it.

And my physical therapist asked me to demonstrate what I mean when I say I ‘tuck my shoulder out of the way,’ and haha, you’re never going to believe this, turns out I’ve just been casually pulling my left shoulder out of the socket for, oh, let’s see, 30 years? And then napping on it like hmmnm yess comfy.

Anyway. I looked up from my demonstration and my physical therapist was making this face:

I felt like a toddler being gentle parented by a mother doing her absolute best to use her “gentle” voice and not yell after watching their child lick a fork and attempt to stick it in an electrical outlet.

Turns out that rheumatologist who said I had zero hypermobility and just needed to exercise more was full of shit. We already knew this. But it’s good to have it reconfirmed.

“Normal” range can vary a lot and some people can go farther back than that without causing issues. I think up to 60 degrees is considered within “normal” range but don’t quote me on that, I’m in pain and trying to remember what my PT told me yesterday.

As we can see on the right, the person with EDS and cranial instability is going much much farther back. Kaitlyn is considered severe enough she’s had numerous surgeries and wears a neck brace and you can see how Not Good it looks.

My neck goes back about the same if I let it. Which explains some things… Basically:

I feel like the hypermobile/POTS/ADHD trifecta has just been supremely validated ( @thebibliosphere I very much want to tag you in this.)