chronicallyill-loser08

[chronicallyill-loser08]

TW: ableist language

Haven't been on here in a bit because my life's been pretty good but because I'm disabled ableism just had to come and ruin it. I've been trying to get a wheelchair since January, it's July now (disability pride month too, ofc that's when i find this out but whatever) and my doctor who I've only seen once (I recently had to switch my primary care doctors because of reasons i wont get onto on here) and she declined my wheelchair perscription. Mind you I didn't ask her for the perscription I asked a previous doctor for that and she just came in and declined it. I sent an email to follow up on our first appointment together where i requested forearm crutches which she also declined, putting in a perscription for a rollator instead which okay fine whatever. But I sent the follow up email and she told me that for my health she couldn't do that because using a wheelchair would weaken me as I would be using it on a daily bases to help with my dizziness. First of all, none of that was true. I would only be using it during my FND flares which make walking difficult, painful and sometimes impossible so she got both of those things wrong. And I'm just so pissed because A) she declined a perscription that I didn't even ask her for and B) the reasoning she gave for it was bullsh!t. I know this is the life of being a wheelchair user and I just want to cry and scream and talk to my mom but I can't because I have and each time she's sided with the doctors who have refused me this mobility aid. She'd sided with the people who told me "it wasn't that serious" or that me getting a wheelchair "wasn't a prority" even though I came into the doctors office unable to walk, and my flares leave me stranded on the couch for days and sometimes even weeks. Once it was almost a month. And these people who don't even understand my body keep telling me the same thing and refuse to help me because of their ableist ideas. And I love my mother I do, she just wants her healthy babygirl back but she wont get her. The least she can do is help me regain the freedom and independence that i lost when i got sick. Unfortunately I know that isn't going to happen, that's just life for disabled and chronically ill teens, especially women of color like me.

[chronicallyill-loser08]

FND flare in heels <<<

[chronicallyill-loser08]

Does anyone else pretend like they have a ton of energy and go out and do a bunch of things whenever they feel a flare starting, or am I just insane? I've been feeling myself start to flare for the past couple days, my symptoms have been increasing, and overall, I just feel off. So I took the scenic route to my aunts house, 15 minite drive turned into an hour walk. Played with my cousin, ran around, and danced. Now I'm going to the movies, tomorrow is two family outings. I know I'm going to end up bedridden whether I do these things or not, so I'm kinda just trying to stuff everything in before I can do nothing

[chronicallyill-loser08]

I'm not mad. Why would I be mad? Yeah, my mom prioritizes my brothers getting new glasses over me getting a wheelchair. And it's not like they repeatedly break them like to the point that she got my youngest brother a back up pair and he broke his the day after he broke his first pair doing the same thing he broke he first pair. They went what two weeks without glasses only because the optometrist couldn't get them in any sooner. Meanwhile I've been having difficulty walking for nearly ten months and have been asking for a wheelchair for about five of those months and all I've gotten is

"what about a rolling chair for the kitchen?"

"You can just lean on me."

"Oh its fine, we'll just cancel or someone can stay home with you"

"there will be plenty of places for you to sit down"

Or you could just give me a mobility aid suited for my needs so i can have independence. And this of such a common theme with able bodied people, they always put disabled needs below everything. They project their fears onto us. Me using a wheelchair isn't going to suddenly make me contagious and force you to use one, too. I just don't understand what the difference in this scenario is. My brothers have a hard time seeing. Without glasses, they get headaches due to eye strain, and it negatively impacts their life. So you get them glasses. Shouldn't the it be the same for me?

[chronicallyill-loser08]

This but because a certain song inspired a fic idea and now I have to coordinate every moment, every scene and every character to a lyric so i keep replaying it over and over and over again

sometimes i have to listen to Song not Music. same song. only one song all day nothing else even sounds like music but That Song

[chronicallyill-loser08]

"You can't pour from an empty cup"

Watch me.

[chronicallyill-loser08]

Forgot I was a writer and that being chronically ill isn't my entire personality so enjoy some quotes from some random writing I've done recently and their titles.

"I don't really respond. The heavy cloud is too much and too heavy even for something with a weight. It's filled with rain and twenty storms, but it's been like that for a while. It's not really new, so I try to smile. I think my face tears a bit when I do." [The House on West Spruce Street]

"That’s the thing about houses, they rarely stay. Once my grandmother dies the house will go somewhere else, to someone else and become someplace new. The flowers, sparrows eggshells and the not-red shudders will be changed and gone. The not quite spruce tree will be cut down or maybe someone will attach a swing and maybe that person will be me. But I don’t need it to be. Because just as a mother must let go of her son and daughter and a father must let his children grow and change, becoming wild, so will The House on West Spruce Street because I am too strong to be detained. But that’s okay because The House on West Spruce Street didn’t change me it raised me. [The House on West Spruce Street]

"Some stories didn’t need an epilogue. Some of them didn’t even need an ending. Could this even be considered that? An ending. It barely even had a beginning. " [Forever Has Always Been a Myth (But Not to Me)]

"She was everything wrapped into one, like a walking antithesis. She was a heartbroken scream and the kiss of a lover, someone with a silver tongue who was able to cut and patch a wound all in the same breath." [Forever Has Always Been a Myth (But Not to Me)]

"How did you manage to break my heart so beautifully?" [(Don't) Kill Your Darling]

"But where else in this world am I to find someone as crazy as me? Not in heaven and certainly not in hell. Maybe that someplace in between is where you landed, far too wicked for the angels but too pure for the devil." [(Don't) Kill Your Darling]

"She lived a couple more years ’til the landline clicked and the background traffic turned to screams. I always knew there was something wrong with her—my sister I mean. I just didn’t know what it could mean." [Smoke]

"I drop my pack of cigarettes off the bridge. They fall and fall and fall and something in my brain clicks, like the landline. This is the end for me. " [Smoke]

[chronicallyill-loser08]

Beiing disabled is so strange. Early this afternoon I was cooking lunch with my brothers and teaching them how to make tuna sandwiches and open the cans. 4 hours later I started experiecing tremors in my legs, had a functional seizure, and my legs gave out on me stranding me on the floor. Really wish I had a wheelchair rn

[chronicallyill-loser08]

"Are you tired of me yet? I'm a little sick right now but I swear When I'm ready I will fly us out of here..."

[chronicallyill-loser08]

Holy shit, i've been sick for almost a year, that just clicked in my brain. I’ve been sick for about ten months, eleven in late June and a year in late July and it’s not going to end, there’s no limit or one year free trial im going to be sick forever, tomorrow, next week, next month, next year I’m going to be sick forever and I know that I’ve known that but getting close to the one year mark has suddenly put everything into a different perspective that forever really is forever. 

[chronicallyill-loser08]

I think something’s wrong with me. I'm suddenly terrified of being sick. I haven’t had a flare in a while. I mean yeah while on vacation my legs gave out and I had to be dragged through the museum which totally could’ve been avoided if I just had a wheelchair but I'm trying not to think about that right now because that’ll piss me off. But I feel so terrified of having another flare and I don’t know why. Flaring is normal for me, it’s a part of the chronically ill experience and i'm suddenly so scared of it. Of losing my ability to walk or closing all the blinds again, of being able to do nothing but sit in the dark completely still because any sort of movement, even breathing might trigger my debilitating vertigo again. I don’t have a wheelchair or forearm crutches so ill just be stuck at home, isolated and alone and embarrassed and this it normal for me i've been going through this for nearly ten months i should be used to this by now. I've managed to remain nonchalant to everyone through my seizures and unexplainable episodes of passing out, letting them carry me when i can’t walk but suddenly i'm scared and angry and pissed and i just want to be not any of that again. I want to be the strong chronically ill teenager able bodied people expect  I don’t want to be tired, angry and scared. 

[chronicallyill-loser08]

I don't think people realize just how much being sick affects you mentally. And I'm not talking about mental health even though becoming chronically ill and disabled does impact that, I'm talking about the way you function and think. Before I got sick I could do schoolwork all day, have time for two extracurricular activites, study for said extracuarriular activities, do homework, help my siblings with their homework, and stay up late reading and writing. Now I can hardly do schoolwork for two hours without needing to take a 10-30 minute break, it's like my brain physically won't let me. I struggle with meeting deadlines not because of procrastination but because I can no longer work for long periods of time. I can no longer particptae in AP and Honors classes because the curricum is paced too fast and the assignments take so long to complete. What used to be my normal now feels impossible. I feel like I've gone from an academic weapon to just average. And I know it's the brainfog from my dysautonomia and FND and that I haven't physically gotten dumber, but it feels that way.

[chronicallyill-loser08]

That feeling where you realize that the life you've pictured for yourself all these years is gone. That the career you've been chasing is no suddenly unattainable due to chronic illness and disability. You guys know that feeling, that kind of grief? Yeah, I wouldn't wish that upon anyone.

[chronicallyill-loser08]

Guys please talk about Palestinian prisoners’ day. It feels like everyone has gone full mask off and just stopped bringing attention to this entirely - but a lot of detainees you advocated for one year ago are still detained today. Still facing the same conditions of squalor & torture & being indefinitely separated from their loved ones. The stats on Palestinian detainees are still as bad as they’ve ever been. Please talk about it

[chronicallyill-loser08]

Dysautonomia is so dumb, wdym I got excited about something, and now I have to lie down for 40 hours???

[chronicallyill-loser08]

Do able-bodied people have any idea, do they even have the slightest f*cking clue how embarrassing it is to “just lean” on them?

like today, I was forced to walk through a museum with horrendous vertigo and tremors in my legs. my legs literally would *not* cooperate. I couldn’t walk properly. so what happened? I had to lean on not just one, but two people. and not even a casual lean. I was *gripping* onto both of them just to stay upright.

and the whole time it’s “take a seat, you need rest.”

yeah, I do. you’re right. but I didn’t come to the museum to sit on a f*cking bench. I came to see the museum. the art. the exhibits. the stuff I was excited about. not to sit and watch everyone else enjoy it without me.

“just lean on me then.”

sure. why not. that’s already mortifying enough, but okay, because my cane isn’t helping today and that’s the only mobility aid you’ll “let” me use. so yeah. I’ll lean on you. not because I want to, but because I have No. Other. Choice.

and then while I’m doing that, you’re constantly stopping to look at stuff *you* like—stuff I don’t even care about—but I don’t get a choice, do I? I can’t just wander off and go see what *I* want. it’s either stick with you or try to walk away, collapse, and make a scene.

or worse:

“you wait here, I’ll be right back.”

so now I’m standing awkwardly in the middle of the room, no one to lean on, completely unsupported. and someone asks me to move. I can’t. and I have to explain myself, again and again:

“yeah, I can stand, I just can’t walk.”

“no, really, just go around me.”

“sorry, my human mobility aid wandered off.”

and all of this wouldn’t even be a problem if I was allowed anything else. I’m not even asking for a wheelchair at this point. just something. forearm crutches, a rollator, literally anything that lets me support myself on both sides. anything but having to rely on you.

it’s humiliating. it’s exhausting. it’s frustrating beyond belief. I just want to be able to enjoy things like a normal person. I just want to walk without it turning into a whole thing

I’m so. damn. tired.

[chronicallyill-loser08]

My 👏cane👏 isn’t👏 the👏 solution👏 to everything👏

It helps me with balance and stability, and on days when my legs feel relatively steady and my dizziness is mild, a cane is perfect. But on days when the world is spinning, or when I have tremors in my legs, a cane can actually make it harder to function. Sometimes I need a wheelchair, a rollator, or forearm crutches instead. FND and dysautonomia are *fluid* disabilities—our symptoms change constantly, even within the same day. One hour I might be dizzy and nauseous, and the next I’m dealing with full-blown vertigo while the nausea eases up.

If our disabilities are fluid, why shouldn't our mobility aids be?