#physdis

i& am in debilitating pain 24 / 7 . i& have a high heart rate + high blood pressure , and my& joints always hurt . my& toes , ankles , knees , hips , entire back , shoulders , traps + neck , and the base of my& skull always hurt , with my& sensitive areas being knees , hips , and neck .

along with this , i& am always fatigued . i& wake up around 10 and go to bed around 8 [ when i& can ] , and am never able to fight off my& tired feeling .

after almost two years and two canes later , my& mother brought me& to the doctor . i& go , do my& physical , get my& blood + urine drawn the next week for every test BUT the one i& thought they'd do [ a crp for inflammation ] , and i& go home and wait .

nothing . they said i& was sick , on my& period [ blood in urine ] , and dehydrated , and nothing else .

now everyone in my& house is acting like im crazy .

i& dont know what to do , and every time i& think about it , i& cry . two years of waiting for ... nothing . i& cant stand without support , i& was kicked out of band for my& inability to march correctly , and i& cant go up / down the stairs without falling .

it hurts . living hurts . my& partner and friends are the only ones who believe me& and my& family is treating it like its all in my head , that im& working myself up over nothing . that life is supposed to be like this .

it isnt , something in me& KNOWS its not . something in me& knows that this is not normal , and every time someone says that they go even a few minutes without pain i& just want to curl up and cry .

standing hurts right now , laying down hurts right now . i& barely have enough energy to make this post because my& fingers are cramping and i&m so fucking tired . its 2am , way past when i& sleep , and i&m up crying because i&m in so much pain .

it is normal and okay that it’s hard to change your bedsheets. it’s okay that it’s hard to fold blankets and tablecloths. maybe even impossible for you.

it’s not shameful to ask for help, and not shameful to have unchanged sheets. hygiene isn’t morality. sometimes you can only change them when they get dirty, or less, and that’s okay. you’re doing your best.

people don’t really talk about it, but changing sheets is one of the most common impossible tasks for arm and shoulder disabilities. it’s often easier to lift weights than pull up just one corner of a sheet.

you’re not lazy. you’re not weird (unless you want to be). you’re not alone.

you’re doing your best, even if you don’t think you’re trying. you and your disabled body deserve compassion.

.🌻

so. my sense of direction sucks. that's something i've accepted - i can orient myself via landmarks, but that isn't always possible (both because sometimes there aren't any landmarks/ones i can easily remember, and because sometimes i need more specific directions; i could guide you through a forest, but sadly i am not a deer, so). it's equal parts the autism messing up my ability to navigate certain enviroments, and the brain fog making it so that sometimes i just. get lost. i also cannot walk for too long, nor can i stand up still too much.

as you may guess, getting lost is... kind of a big issue. some of my friends, who do not have these struggles and/or have them differently, are able to either orient themselves quicker or keep walking until they find a spot they know - this is a good solution for them! it's not doable for me, though. i also can't often ask for directions, because stress tends to cause me to lose speech (and pain, too - since standing/walking tends to be painful, well...).

this means that, say, even if i'm on a building fully accesible for my mobility issues (meaning elevators, scalators, etc*), if it isn't accesible for my navigation issues (like, say, it doesn't have maps easy to see, signs indicating where certain landmarks are, etc), then i cannot use the building. not alone, at least.

in an emergency, i'm fucked - not because i couldn't get to the exit/a safe spot physically, but because i wouldn't be able to know how to get there. and "following people" also isn't easy - crowds are so deeply overwhelming that most of the time i'm unable to follow them**, and i'm also slow at walking, so even being able to keep up with people isn't always possible (or likely).

places i've enjoyed going and considered accesible to these specific issues had big maps not too far from each other and clear signs indicating main landmarks (bathrooms, food courts, STAIRS i cannot thank the people in charge of the signage enough for marking where stairs/escalators/elevators are, etc). sadly at least where i live this isn't really common - a lot of the signage is small or unclear, there's like one map at most.

*i am not including ramps on this list because my mobility issues, and the fact that i don't use mobility aids, make it so they're sometimes harder for me to use - they're really important but this is a personal experience post.

and i remember finding spaces radically inclusive of disabled people, online, and finally realizing that, no, being forced to function (somewhat) even by medical professionals didn't make me any less disabled. that i was allowed to think of myself as disabled, even as physically disabled. and i still struggled, because i didn't want to "take up too much space", when i "could manage" - but those spaces were the ones that helped with those struggles.

anyway. not too long after my ability to function deteriorated (thanks to one summer of sleep deprivation + my bad leg getting significantly worse + one big flare-up following illness that made my baseline of symptoms a lot worse). so i would've eventually had to refer to myself as disabled, i guess. but it did help with the grief, and the (mental) pain, to have those spaces.