rocky with his human thinking machine, learning about the median human on earth and getting disturbed by grace's horrific posture and joint instability .
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rocky with his human thinking machine, learning about the median human on earth and getting disturbed by grace's horrific posture and joint instability .
I'm here, I'm queer, my joint pain is moderate to severe.
so fucked up that "most comfortable position" and "least painful position" are Not the same.
"you're so lucky you get to stay home and watch tv + play videogames all the time"
no im not. i feel uncomfortable all the time. im in pain all the time. i feel sick all the time. im exhausted all the time. i mostly sit on the couch and watch anime or youtube, because i cant do anything else.
i cant even play videogames that much because it makes me sicker. there have been times where im really enjoying a game and i end up with a rapid pulse, sweating, shaking, and spinning. ive gotten mindbreaking headaches from the lights changing on my screen.
my body cannot tolerate existence. i dont sit at home doing this every waking moment because its what i want, but because my body has given me no other choice.
you're lucky for having the abilities requried to work. you're lucky to not be dependent on the state for every single aspect of your life. severely disabled people are not just having fun and relaxing. we are suffering, and trying to make the most of our lives as they are.
If you feel the need to gift your chronically ill friends things for whatever reason, here is my "starter pack/gift guide"
A pack of their favorite gateorade flavor, great for hydration, tastes good, easy and quick. Body armor, prime, etc are also good options if they dont like gateorade
Some of their favorite powder electrolytes. Liquid IV and drip drop are some good options. There are also the generic brand electrolyte packets at Walmart, I think they taste good. There is also bouy if they like the squeezy ones, i dont but if they do bouy has an unflavored one as well as like 30 different options
Kt tape. Regular, extreme strength, cooling, heating, literally any type of kt tape. They can probably find a use for it. Most ((not all but most)) chronically ill people, at least the ones I know, suffer from some type of joint issues and kt tape is a life saver. On this vein, I would stray away from braces unless you know what joints/muscles specifically give them the most trouble, kt tape is a bit more versatile
Compression socks, there are cute ones on Amazon, Walmart, many small business sell some nice ones. I would go for a higher compression, or at least upwards of 15 mmhg, for the best chance of them being worth it
Temperature devices, im putting these in the same bullet point bc it felt unnecessary to put ice packs and heating pads in different points. Ice packs are really nice for swelling and heating pads are really good for pain. Both are a good option ALWAYS. I will say, the reusable ice packs give you a better bang for your buck than the single use crack and use ones.
Their comfort foods. A bit of an ed tw for this bullet point, but i have noticed quite a few of my fellow chronic illness sufferers deal with an ed, and while it isnt all of us, those who do probably find it a bit extra hard to eat on rough days. So comfort foods/snacks
If they have to take their blood sugar for things, lancets. They usually come in like 100 packs for really cheap, like under 5 bucks cheap. Just check to see the brand of their lancing pen before you buy them tho
Batteries, it sounds weird but stay with me. Do you know how many medical devices I have that require batteries?? MANY. My hr monitor, my glucose monitor, my blood pressure monitor- like bro, a pack of triple a batteries will mean more than you think trust
A weighted blanket/stuffie. Stuffies are cute and easy to carry around, blankets are nice when you need some extra weight
If they have a service animal, an accessory for their vest/leash/collar could be nice
One of those reacher things that grab things for you. I want one of those. When your stuck in bed, cant move, ill, in pain and suddenly drop your mother fucking phone cord off the side of your bed and now you have to MOVE and grab it- 10/10 worst experience. One of those grabby things would be amazing
A migraine cap. I got mine from target but I have seen them at Walmart, on Amazon, weirdly one on depop, some on shein, some at places like tj maxx, etc. Migraine caps are especially wonderful for those days where your shut in your room, blinds drawn, fans off, three ice packs on you in constant rotation, barely mobile and for some gods forsaken reason your blinds wont close all the way so the light keeps catching your eyes and making you want to lose your ever loving shit bc you cant move to fuck with them. And more normal experiences Im sure lmao
If your short on funds, just being there with them, listening to them, watching a movie, body doubling so they can get some help with chores, running errands with them, literally anything so they remember their a human person with human feelings that you love and care abt. Who knows, it might help you feel better too
More than anything, listening to what they want and need is a bigger gift than most think
haha yeah yeah that's really great that we're having so much fun. oh what's that? everyone is going to sit on the ground? everyone is going to sit on the ground and look at me weird when i say i can't sit on the ground? there are no chairs in the room so i have to stand with my cane or just lay flat on the ground?yeah no that's great yeah i'm so glad none of you are ableist
being disabled will have you being like “oooo should i splurge on this 👀 I really want it… 🤭 oh it’s so expensive! 😱 ….i’m gonna treat myself 💅” and it’s about a foam roller and electrolytes that you need daily.
When ppl call hEDS/HSD an invisible disability and act like we're not as oppressed as ppl with visible disabilities when its like... idk I'm pretty sure other people can see my crutches and braces but who knows maybe im wrong