the-chronic-files

[the-chronic-files]

stop calling me differently abled.

8x10 in. 2022. acrylic on canvas.

[ID: an acrylic painting of the words ' "disabled" is not a fucking bad word' in red text with alternating hot pink, pale pink, and red stripes contouring the text going out towards the edge of the canvas. end ID]

[the-chronic-files]

it's only been two years since I've gotten to the point where I need help with multiple things a day and by now my parents get upset when I tell them I cannot continue doing something and people have started to refuse to help me on repeated things like getting me water when I can't move. These are the people who love me unconditionally, too.

imagine the most meanspirited, unlikeable, rude, bitter, self centered, negative person you can think of. not a rapist, not a murderer, not an abuser. just a charmless, tactless, dyed in the wool asshole you wouldn't want to spend two seconds with. now assume they get sick, not with the flu, but with a long term, serious illness that limits their ability to provide for themself. a society in which that person is left to die alone because nobody likes them on a personal level is a failed society.

[the-chronic-files]

Healthy people who say stuff like “they’re still doing things so they can’t be in THAT much pain” need to understand that after a certain point pain becomes boring. No, you never get used to the pain, but you do gradually become bored. After months or years of mindless suffering in bed eventually you learn how to watch TV, do a light hobby, etc., even while in extreme pain, simply because chronic pain is incredibly dull and humans need entertainment.

[the-chronic-files]

are you disabled or suffer from other chronic conditions that often leave you bed bound? do you often feel like you’re in the “damn bitch you live like this?” meme because cleaning is too exhausting?

my protip is get yourself one of THESE bad boys and hang it by your bed

it’s an over the door shoe rack and the pockets are perfect for holding a lot of household objects.

you can use the pockets to store trash, snacks, meds, and water bottles. if you worry about hygiene, you can also keep some for dry shampoo, deodorant, body wipes, clean undergarments, or toothbrush materials. on good days, you can clean it out and restock it, or have someone else help you. on bad days, you won’t have to worry about getting food and you’ll be able to feel a little better about hygiene.

it’s also really great if you want to keep your hobbies close by!! i can often only work on my bed, and then i have to worry about putting everything away if i have to lay down. if it’s a hobby that has materials that can be stored in the pockets, it can feel more accessible to jump in and out of and take less spoons to set/clean up.

[the-chronic-files]

So I'm feeling a little down and very low energy, and writing and helping brings me joy, so here's some "it's far too overcast and cold for me to be mentally well" witch ideas:

Light incense. Don't visualize or do magic. Light it up and say, "yay, I like incense."

Make tea. Sloosh it around in your mug a little. Say, "it's just like the ocean." Drink the ocean.

If you are a little cold, say, "I manifest warmth." Go find a bigger, cozier sweater or a blankie. Get warm. Your spell has manifested. You are magic.

Find some of your clickity clackity rocks. Make a crystal grid of no more than three rocks. No matter what grid you make, the intent is, "I have just done a productivity." When you are done, your spell has simultaneously been cast and become manifest.

Wash one dish. Look at it and know that it loves you. You and the dish are friends now.

Imagine what kind of cat you would like to have, if you did want a (new) cat. Think about its appearance and personality. Give it a name. It is now your thoughtform. Enjoy.

Watch that one Netflix show you've been saving forever for a time when you're ready to focus. Do or do not focus. When you are done watching the show, say, "I knew it."

[the-chronic-files]

People who have symptoms but no official (or unofficial) diagnosis are just as welcomed into the Ouch Community as anyone else. I don't care if you're in the "tummy hurted for too long" or the "i have no arms or legs, my skin is made of paper, my bones are made of glass, and I have the most advanced Disease ever" category.

The community is "it hurt and is now my life"

[the-chronic-files]

you know what i find infuriating? when you see a healthcare professional, you have to walk a very thin line as you talk about your symptoms and conditions

if i don't baby myself down and use smaller words or talk as if im unaware of parts of my condition (which i am very knowledgeable about) they will dismiss my concerns, assuming im a "google doctor" hypochondriac rather than an intelligent disabled person

i asked my intake nurse at an urgent care today (waited 3 and a half hours for a uti diagnosis btw) what specialist she would recommend for my joint dislocations because they were staying out longer and it hurts

she looked at me and said "Oh I don't know sweetie. I thought you were going to say arthritis, but there's a very long word for what your joints are doing."

ma'am....i know what a subluxation is i just wanted a provider recommendation

honestly as soon as you let them know you're disabled they assume you are just a dumb sweet little baby and the moment you demonstrate any medical understanding of a condition YOU HAVE they get combative and will actively work against your attempts to receive adequate care

and in this case, i apparently did not act "stupid" enough, because they failed to tell me a word i already knew, or that my lab results even confirmed my uti, much less that it was severe enough to be with hematuria- i had to ask for confirmation after she rattled off the prescriptions she was sending and read my discharge papers for my full diagnosis

tl;dr Healthcare providers: stop treating chronically ill and disabled patients like they are not smart enough to be engaged with like the adults that they are

(this includes people with mental and learning disabilities too)

[the-chronic-files]

sick of environmental and climate-friendly movements/fads throwing disabled and chronically ill people under the bus and even outright blaming us for the state of our world. “using albuterol inhalants is poisoning the atmosphere” “people who use non-reusable dishes and plasticware are responsible for landfills” “don’t use plastic straws or straws in general” “walk places or ride a bike or use the bus instead of driving everywhere” “don’t use same-day delivery from amazon” how about “don’t dump tons of oil in the ocean or burn a hole in the ozone or pollute the air with fossil fuels to make a quick buck”? how about “celebrities stop using private jets to fly to your vacation home every weekend so you don’t have to see the poors in commercial”?

like yeah, okay if you can walk or ride a bike or elect to not use straws, by all means, do that. but stop acting like people who DO need to use straws, or drive everywhere, or use inhalers, or eat with disposable dishes etc are the leading cause of global warming because we’re not. corporations and people with way too much money are. stop judging us for existing our disabled, ill lives because we don’t have the same options you do. it’s exhausting.

[the-chronic-files]

Ableds be like wow I can't believe you, a disabled person, are experiencing symptoms (tm)! Didnt you already experience symptoms yesterday? What, are you going to experience them tomorrow as well?? Unbelievable.

[the-chronic-files]

sending love out tonight to everyone who is progressively losing their abilities, whether that's movement, ability to walk, eyesight, or hearing.

it's hard to come to terms with the fact that you can't do things that you used to be able to do. I'll be honest, it feels like you're losing control of your life. it can feel very isolating and hopeless. its scary and overwhelming, and it's so hard to deal with.

you are not less than just because you can do less. im proud of you for still being here, and i wish you ease with adjusting to new ways of life. please take care of yourself, i love you.

[the-chronic-files]

perks of being disabled and unemployed: can nap. like. all the time. SO many naps. little bit sleepy at ten in the morning? nap. eyes starting to droop while doing some silly little hobby? nap! want to make some bread but dont have quite enough spoons yet? nap!!

downsides of being disabled and unemployed: unimaginable boredom. all the time. constantly bored. you've got a list of shows to watch but you're tired of watching shows. a list of books to read but brain fog prevents you from just picking them up and reading them. so many video games in the steam library but somehow the thought of playing any of them is exhausting. also. no money :(

[the-chronic-files]

Honestly it’s really fucking ableist when I get tired and my friends leave me bc I walk too slow. I have chronic fatigue syndrome and it’s messed up that I’m always laughed at for being slow. Cause guess what? Lots of people walk slow!! I’m not the only one!! Abled bodied people can walk slow too!! You don’t need to make fun of anyone who walks slower than you or god forbid needs to sit down. We’re not the punchline for your jokes. We’re not “turtles” or “sloths”, we’re not exaggerating when some of us say walking up/down a staircase is hard. We shouldn’t have to be embarrassed for being tired

[the-chronic-files]

Fun facts about the past few weeks from but they get worse the further you read:

I made it to school before spring break

I've mostly been getting along okay with my sister

I got a journal/diary and I've been writing as often as I can (and accidentally hurting my wrist because of it)

I've been excessively clumsy for some reason, leading to many random bruises (I don't bruise easily)

I've been sleeping for 15+ hours every day

I haven't texted my friends just to have a conversation with them in ages

My parents were exposed to covid (idk how long)

I've been eating in my bed because I can't make it downstairs to eat full meals most of the time

My sister continually would rather play Roblox and watch TikTok over spending any time with me

I'm beginning to feel a depression episode starting

I've almost died from IKEA food twice recently

It's getting far more difficult for me to walk around my own house without hurting myself accidentally

I can't tell half of my problems on here for fear of them being traced back to me

I fainted from standing up for around 10 minutes last week

I fell (my legs gave out) in the bathroom two weeks ago and I had to wait 3 hours alone until I could get up to leave

My doctors won't allow me to have a personal wheelchair

My doctors are trying to take away the wheelchair I borrow at school

I'm pretty worried I might have to drop out of highschool and not do college

I don't think I'll ever be able to have a job or live alone

The constant pain I've been in has been worse recently

My parents are having money troubles and we were burglarized a while back

My doctors want to put me through GET I'm pretty sure

In struggling to keep up with the medicine that keeps me from being in constant freefall

my sister is the most ableist person I know and she doesn't apologize ever

my family occasionally wants me to do near impossible tasks and gets upset when I can't / when it takes a lot of energy / when it takes AGES for me to do it

learned that one study found cfs to have a far worse quality of life than cancer or even a stroke

becoming invisible again; everyone talks over me or forgets I exist and goes on without me

my cat is diabetic and has to be given two shots a day

no one, especially not my doctors, will listen to what's actually happening with me and always brush it off

I don't know how much longer I can keep on like this, every time I think it can't get worse it does

[the-chronic-files]

I miss my friends. I'm supposed to go to school once a week but I've been lucky to make it twice a month. Since they don't see me every day they don't tend to message me. I feel like I'm losing them and I can't do anything about it and it's breaking my heart.

[the-chronic-files]

I got to try a wheelchair at the zoo a while back and holy cow it was amazing how much it helped! Hopefully I will have my own soon, so I can get around without having a crash.

[the-chronic-files]

one month into school update:

So I had to kind of change schools. Basically I could've been handle going to school every day, so moved to a separate program. Now I go to school only on Wednesday, but even that is awful pain. My friends are angels I stg. I try to go over to the high school main building every week to hang out with them. Right now (Thursday, Oct 7 2021) I'm recovering from going to school. I'm looking into wheelchairs and service dogs, but my parents seem pretty opposed to me having either.

Today I've been struggling with this.

I had the chronic pain before the quarantine but it was almost never this bad. I was able to do normal people stuff and do the walking/standing I needed to. Also, I was incredibly optimistic all the time.

These days I've been in constant pain and I've been having trouble keeping my spirits up. I've been trying not to text my friends often because I'm kind of depressing. The problem is that in a few months, I'm going back to school. I'm going to be face to face with my friends and I don't know if they'll want me back.

[the-chronic-files]

if this is for the rest of my life, which is likely, I just realized there's a ton I can't do and a ton I can barely do. I won't be able to drive, dance (I used to do musical theatre), live alone, take long walks, and there's more but it's pretty depressing so I don't feel like listing them all.