#ehler's danlor syndrome

[gon-and-killuas-mother]

i'm doing it. i'm ordering an upright rollator. i'm taking charge of my own treatment so i can be more self reliant, i am tired of asking my neighbor to help me unload my groceries or do my laundry or whatever. and i wanna go to a fucking renaissance fair!!!! i can't do that with just crutches

i'm also ordering a u-shaped body pillow so i can MAYBE get some better sleep. this was recommended to give me support and to keep me from moving around in my sleep too much, and it's a hassle moving my three to four pillows plus stuffed animals around all the time

and last night, i ordered some swim gear! gonna start doing laps at the gym's indoor pool. i doubt i can do more than two or three laps right now, but i have had so many fucking dreams about walking along the beach and yearning to swim that i'm convinced i'm missing something crucial in my life.

which is weird, bc i spent the last six or seven years really uncomfortable with swimming (a mix of the Trans Thing™️ and the sensory nightmare of wet clothes) but then? i look back at my kid self, and how they absolutely loved to swim. the weightlessness, the silence when you're underwater, the easy full body workout, even the smell of chlorine. i even remember, if my parents ever took us to the gym but, for whatever reason, didn't let us swim in the indoor pool, i would feel this overwhelming longing to jump in anyway.

this only applies to pools, and indoor pools even more so, bc outdoor pools tend to be freezing and lakes/rivers/oceans have too many critters for my anxiety to handle. but i think this is gonna be really important to my overall health and happiness

[elizabethbcn]

✨✨WARNING✨✨ It is M.E (Myalgic Encephalomyelitis) Fibromyalgia, Lupus, Chronic Fatigue Symdrome, Lymes Disease, Chrons, Ehlers Danlors Syndrome, Mental health etc awareness week from May 12th and I will be sharing lots of stuff to raise awareness (More than usual) and to try to get people to understand our lives more. 🙌🏻❤️ If you are bored of hearing it or just don't care enough to read anything I share, please feel free to just unfollow or unfriend me, I honestly don't care. Having M.E, Fibromyalgia and Osteoarthritis isn't all there is to me, but it does affect every single minute of my life and until we get the respect and recognition we deserve, I will continue to do what I can to help myself and all the other sufferers. 💯 We deserve a treatment or a cure and until we get one, we will carry on the fight. 💪🏻 All I ask is that for those of you who do care, please take a few minutes to read the articles i'll be posting over the week. 😊 Sufferers don't want or ask for sympathy, we just want people to try to understand the fluctuating part of the illness and to stop judging or disbelieving us. 👋🏻 So you have been warned!!💁🏼

[gon-and-killuas-mother]

idk if i've posted about this yet, but my physical therapist has more or less diagnosed me (unofficially, bc my state prohibits PTs from diagnostic and prescription licenses) with, drumroll please . ...

yeah it's POTS, or dysautonomia, w/e it is. once i learned that both my mother AND my (paternal) grandmother experience the same symptoms i immediately realized i had more investigating to do. moms case was more likely triggered by covid, but that could also mean she already had a genetic predisposition.

and nana, after i described the symptoms, actually went "Oh...! I've had problems like that my whole life. There's a name for it?"

(⁠,●⁠_⁠_⁠●⁠')

i have to talk to my PCP tomorrow about this and what kind of help i can get, but i'm not expecting much. i might still be able to get a handicapped parking pass at the very least.

it's been a week since i saw the physical therapist and i've been. pondering, sorta, in the background. as with my other diagnoses, i felt a mix of relief and also of dread.

like. "Thank god I finally have a diagnosis!" followed by ".... Oh god i have a diagnosis"

at the same time, POTS actually fills in the missing pieces of my symptoms. everything clicked when my PT told me that symptoms often worsen with puberty. which is exactly when i started "lagging".

i've literally told multiple doctors and therapists and family and friends this exact thing: "I've been exhausted since middle school. That's when the "fog" started".

I LITERALLY CALLED IT FOG BEFORE I UNDERSTOOD WHAT BRAIN FOG WAS

and this just tells me that i'm not lazy, i'm not under-motivated, i don't have my "priorities" mixed up, and i have NOT been making excuses

i am sick. i have an illness. my body is doing the best it fucking can and i have to listen to it when it says that's enough

[gon-and-killuas-mother]

HELLO???

i need it i need it i NEED

as soon as i saw the images of folks wearing them i started crying because this could help me get the exercise i need without overextending myself. my normal knee braces are too constricting and, in the absence of regular physical therapy, have actually weakened the connective tissues in my knees (the concept of "use it or lose it" applies a lot more when you have loose joints, sadly)

but this body braid looks like it could hold my entire body together, not just my knees! my back, my shoulders, my hips, even my knees and ankles with extension straps.

the full getup is over $300 which, yikes, but compared to wheelchair this is pocket change. and will probably be worth the investment.

[gon-and-killuas-mother]

i need to start counting every time a nurse asks how to spell Ehlers Danlos, bc it's been more than a handful. not that i blame them, but damn

[gon-and-killuas-mother]

why shoulder feel like it's falling out?? not dislocated but like. loose screw. i hate it here.