#the only positive is that my hip doesn’t sublux the way it normally does where it feels like I’m being stabbed

[nope-body]

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[makeroomforthejolyghost]

ok well i originally drafted this while thinking about this post, but it’s relevant to what i wanted to say about (my tags on) this one too so i’ll just post it now, how ‘bout that.

i mean, Getting Used to It (and thus expanding your definition of “i’m fine”) isn’t always as dramatic as your brain completely turning off its pain response to an event, so that you don’t realize you’ve injured yourself until some other clue tips you off. that’s certainly happened to me? (and w/ smaller injuries it happens to healthy people too, as when you cut yourself on paper without noticing, and it doesn’t start to hurt until you see it bleed.) but the more everyday/pedestrian forms of this phenomenon are, like. that the level of pain i rated as an 8 in 2016 now reads to me as, like, 5. and that when you’re depressed (or at least when i am), pain goes up but interest in that pain goes down, because of depression’s tendency to normalize negative stimuli.

i think these are two manifestations of the same thing: your brain removes fear from the equation, and since fear makes pain more intense, most pain experienced in fear’s absence seems like no big deal. and that goes double for painful stimuli you once associated with fear but no longer do? in a sorta feedback-loopy way. or at least it does for me. less fear-->less pain-->even less fear the next time something similar happens.

if i sit in nearly any given position too long, one or more of the joints in my legs will sometimes... well, i think subluxate is technically the right word?* but it’s not like a sudden pop: it’s like, as the muscles around them relax my joints slowly slide out of place. as you can imagine (given the low bar required to achieve it), this happens A Lot; i don’t keep track, but probably once a day on average? i know it’s not every day, but also that some days it happens many times, and that both these latter and the days when it doesn’t happen at all often strike me as a change from the norm. so, yeah, probably a mean of once per day. but until sometime in 2019, it used to freak me out—a lot—every time.

it’s often one of those above-mentioned doesn’t hurt until you notice for other reasons scenarios, too, like the paper cut. so i’d be like innocently sitting there, then look down or attempt to adjust position and suddenly OH GOD MY LEG(S). and every time it happened i’d think, “oh god, is this the time i really and truly get stuck and have to be scooped out of this position on a stretcher. fuck, please, no, that would be so humiliating, there’s no way the paramedics would believe me, strangers must not see me like this,” &c., and the more determined i got to prove to myself that i could move, that i wasn’t stuck, that i could get myself out of this, the more horrifically painful these attempts became—partly because fear of pain leads to greater pain, and partly because when you’re panicky you don’t tend to move with much patience or care.

but, of course, every time i would eventually get out of it. it’s hard to say how long it took, because, again, i never timed it, and also because time does weird shit when you’re freaking out. (plus i have adhd, so my estimates of how long things take aren’t the greatest to begin with.) i want to say though that the longest i ever took unpretzeling myself in this way was an hour and a half—and i usually took way less time than that. (it’s hard also to estimate because these days exceeding ten minutes marks an especially long battle of this kind.) iirc, the ~90-minute incident was like, my right hip already felt not quite right, and someone on the internet recommended W-sitting as a way to reduce a subluxed hip, and i tried it because i either didn’t know at that time or had forgotten that when i W-sit for more than a few seconds i often misplace several toes, up to two joints per knee, maybe an ankle, and/or at least one hip. some of these will reduce themselves automatically as soon as i move; others i can only move passively until after i’ve reduced them. so like, that endeavor was a fucking jigsaw puzzle, and good luck figuring those out when a. every wrong move doubles the pain and panic you’re in, but b. leaving the puzzle unfinished is also agonizing. most of the time it was not that bad.

…what was my point? oh yeah: this sat-wrong-now-my-leg’s-stuck business still happens a lot, and it’s n o t like sitting on a pen, where your brain eventually gives up on signaling your discomfort.** nor like when you’re running on adrenaline and your brain doesn’t bother to tell you you’re hungry. nor like what tumblr user bibliosphere described, where her brain evidently just… prioritized other tasks over the “hey please fix this leg” alarm that pain would have signified. but incidents like this do, literally, hurt less the tenth time they happen than they do the first time, and it’s not because your body Toughens Up or whatever either (that only works w/ exercise-related muscle pain); it’s because your brain learns that this event does not pose imminent danger. a subluxation you know how to reduce will hurt less than one you don’t.

that’s what the “i’m always subluxing” version of the hulk meme means. most chronically ill people describe this whole phenomenon as more like the argument from “shot in the knee theory.” as like, you stop screaming because you learn screaming doesn’t help. and i mean… yeah? but ime it’s more that you stop screaming*** when you learn what does help. the OP in that post asks rhetorically,

Are you going to scream and cry the entire time, or are you going to come to grips with reality and accept the fact that freaking out isn’t going to make the ambulance come any faster?

and jesus christ, OP, are you kidding? in real life? definitely the first one! if you literally got shot in the knee, you wouldn’t just scream because it hurt—you would scream also because holy shit, am i gonna die of blood loss? why did they shoot me? are they going to shoot me again??? and pain you’ve had for years, or an injury you’ve sustained many times before, is nothing like that. if it scares you at all, the content of your fear is more like, oh, crap. what’s this gonna feel like tomorrow. will i have to cancel my plans again?

*n.b. i’ve never had this confirmed by a doctor. i just assume that’s what’s happening because 1. the sensations’ non-pain components are very similar to what the subluxations i have had confirmed feel like; 2. if it’s a joint i can see from my position (e.g., the ankle pressed against the floor when criss-cross-applesauced), it usually looks a little fucked up; and 3. it behaves quite differently from regular stiffness, joints in this scenario feeling not so much too tight to move properly as like i keep aiming for and missing the lever that moves them. (and each failed attempt HURTS like my soft tissues are pumpkin guts and my bones are knives trying to scoop them out.)

**i’ve never actually tried this experiment, though, and i’ve heard it doesn’t work on some autistic people. hopefully this goes without saying lmao but my sensory perceptions are Weird in General, so, any hypotheses i build upon them should be salted liberally

***well, whimpering, anyway. for me at least, if i literally scream at an injury it’s not from the pain, it’s from the surprise. i’m more likely to scream when i stub my toe than when i try to bite and my jaw crunches sideways, because the latter is a possibility i sign up for every time i put food in my mouth, whereas like. ob…viously you wouldn’t have stubbed your toe if you’d already known the object you accidentally kicked was there. (except i guess in movies when people kick objects to express rage, forgetting that this will hurt them. in that case i suppose they scream partly from surprise and partly because negative stimuli encountered in “fight” mode reinforce preexisting anger. wow i digress lmao sorry.) but reactions like whimpering, clenching your teeth, &c. only partly come from surprise; they’re also stims, i think, tho clearly not ones unique to ND people. the woman who pierced my ears when i was a kid told me to focus on tapping first one foot and then the other, so i wouldn’t shrink away. i think it’s kinda like that: it releases nervous energy, gives you a competing stimulus to focus on.

[lachryphage]

for at least the past week my shoulders and elbows have been absolutely KILLING me while I sleep. I’m used to needing to shift what side I’m sleeping on maybe three times throughout the night to keep the pain down but I swear I’ve been waking every hour but it’s still not enough and the pain grows throughout the night and lingers in the morning.

it’s not too bad, maybe a 5 at most, but it’s the persistence that’s bothersome. today the pain in my right shoulder goes all the way into my hand and has been lingering even though I’ve been up for an hour

I sleep with a specific size of plushy so that when i cuddle it against my chest the arm that I’m not laying on can rest on the plushy nearly straight-out from my body, thus preventing my shoulder from being pulled on throughout the night by the weight of my arm and the force of gravity. this is usually enough to mediate pain. I really don’t want to have to start sleeping on my back.

my arm muscles have also been hurting in the night, I think because of poor circulation? they hurt worse if my elbows are too bent which I think maybe restricts blood flow? either way, more pain. 

I know I need to see a doctor. It’s hard for me to admit that my experiences aren’t the norm. I mean, they aren’t, are they? does anyone without a joint/connective tissue/circulatory problem experience things like this? is this just a normal part of aging? I don’t know. when I compare my body with others’ I get mixed responses, people are either alarmed and freaked-out or they’re like yeah that’s perfectly normal.

below the cut is a list of things off the top of my head that I experience that may or may not be normal. If someone reads through them I’d really appreciate a comment on what may or may not be normal. I mean if no one comments that’s a-okay too, I need to start listing things as prep for seeing a doc anyway. the list is by no means comprehensive.

- the above described shoulder pain if arms are not properly positioned at night - muscle pain at night from poor circulation caused by bent limbs or if cat(s) sleep on top of me - legs and knees swell up with blood painfully in the shower, resulting in difficulty bending knees and needing to sit for most of the shower - joints that commonly pop/crack (namely shoulders, elbows, knuckles, spine, coccyx, neck) doing so approximately 4 to 10 times a day. become painful if not cracked and/or crack more often if painful already - feet frequently going numb even if I’m not sedentary - livedo reticularis (blood under skin looks all mottled and lace-like) on hands, sometimes legs, not necessarily as response to cold - easy skin impressionability, i.e. if my skin rests against a textured surface for a minute or more it will retain the pattern of that surface for at least five minutes after contact ceases - isolated muscle spasms unassociated with any obvious stimuli - ability to sublux hips to increase range of motion, becomes painful if done too often. taking stairs too often makes it happen anyway. this is the only joint I can for certain sublex - stretchy skin. least stretchy on upper arms (cannot pull away from body), most stretchy on stomach (can pull 6 cm away from body and create pockets by folding in on self). subcutaneous fat is included in stretch - lots of tiny wrinkles/creases around joints, many of which are becoming permanent. e.g. I have three or four creases where my neck joins my body I am nearly 23 and skinny (probably normal) - when bloaty the circumference of my tummy increases up to 4 inches and it’s noticeably distended. jeans go from probably needing a belt to being too tight to wear - difficulty swallowing certain textures such as grains of rice, chewed raw carrot, nuts. bits of food linger in the throat and can cause (short term) choking or even (long term) tonsil inflammation - difficulty drinking water (it just... pours out my mouth idk man) - sometimes food just hangs out in my esophagus for like an hour?? like it doesn’t go into my stomach and if I angle my head downward it’ll just... slide out... back to my mouth... - I frequently have to lie down after eating because it makes my stomach hurt/I feel queasy/I feel exhausted/I feel dizzy - my joints just hurt all the time for no obvious reason - and TMI: I usually alternate between diarrhea and constipation

I do have celiac, so some of this might be from that??? and like I said, this is just off the top of my head and not comprehensive and I’ve also purposefully left out things I think may be due to SPD (such as skin hypersensitivity and poor body temperature regulation) 

if you’ve read through this you’re a champ and thanks for listening. comment if you feel up to it, but like I said a lot of this is for my own benefit...