#chronically fucked up

[luckypoppymilliemama]

Huge thank you to @kyra45 for bringing me to tumblr. I can basically say all my brain thoughts here and my heart thoughts and people can ignore me like they do in person.

My tags are fun today. Enjoy

#brain thoughts #heart thoughts #tomorrows my birthday #and I really don’t care #my vet is my best friend now #I call her my cats auntie #Poppy has the feline version of a diaper rash #she gets butt paste put on her #my vet gave her an oatmeal bath to soothe her bottom #I don’t know why im making all these tags #check out poppy’s go fund me #i feel like shit #i am not okay #i hate being sick #chronically fucked up #mental health #im not ready #suicidal ideations are my constant company #im ruining my children’s lives by being sick and disabled #pls ignore #how many more til 30 #TW life #tw mental health #trigger warnings #I have the fray how to save a life on repeat in my brain #also matchbox20 3am #it’s my birthday weekend and I want to go to so many concerts but there are so few handicap accessible ones #have you ever thought about how dangerous crowded places are for those with limited mobility #it’s like a guaranteed death trap #I want to go see fall out boy and new found glory and Matt rife but none of those venues are anything close to safe for us

[inkskinned]

the thing about art is that it was always supposed to be about us, about the human-ness of us, the impossible and beautiful reality that we (for centuries) have stood still, transfixed by music. that we can close our eyes and cry about the same book passage; the events of which aren't real and never happened. theatre in shakespeare's time was as real as it is now; we all laugh at the same cue (pursued by bear), separated hundreds of years apart.

three years ago my housemates were jamming outdoors, just messing around with their instruments, mostly just making noise. our neighbors - shy, cautious, a little sheepish - sat down and started playing. i don't really know how it happened; i was somehow in charge of dancing, barefoot and laughing - but i looked up, and our yard was full of people. kids stacked on the shoulders of parents. old couples holding hands. someone had brought sidewalk chalk; our front walk became a riot of color. someone ran in with a flute and played the most astounding solo i've ever heard in my life, upright and wiggling, skipping as she did so. she only paused because the violin player was kicking his heels up and she was laughing too hard to continue.

two weeks ago my friend and i met in the basement of her apartment complex so she could work out a piece of choreography. we have a language barrier - i'm not as good at ASL as i'd like to be (i'm still learning!) so we communicate mostly through the notes app and this strange secret language of dancers - we have the same movement vocabulary. the two of us cracking jokes at each other, giggling. there were kids in the basement too, who had been playing soccer until we took up the far corner of the room. one by one they made their slow way over like feral cats - they laid down, belly-flat against the floor, just watching. my friend and i were not in tutus - we were in slouchy shirts and leggings and socks. nothing fancy. but when i asked the kids would you like to dance too? they were immediately on their feet and spinning. i love when people dance with abandon, the wild and leggy fervor of childhood. i think it is gorgeous.

their adults showed up eventually, and a few of them said hey, let's not bother the nice ladies. but they weren't bothering us, they were just having fun - so. a few of the adults started dancing awkwardly along, and then most of the adults. someone brought down a better sound system. someone opened a watermelon and started handing out slices. it was 8 PM on a tuesday and nothing about that day was particularly special; we might as well party.

one time i hosted a free "paint along party" and about 20 adults worked quietly while i taught them how to paint nessie. one time i taught community dance classes and so many people showed up we had to move the whole thing outside. we used chairs and coatracks to balance. one time i showed up to a random band playing in a random location, and the whole thing got packed so quickly we had to open every door and window in the place.

i don't think i can tell you how much people want to be making art and engaging with art. they want to, desperately. so many people would be stunning artists, but they are lied to and told from a very young age that art only matters if it is planned, purposeful, beautiful. that if you have an idea, you need to be able to express it perfectly. this is not true. you don't get only 1 chance to communicate. you can spend a lifetime trying to display exactly 1 thing you can never quite language. you can just express the "!!??!!!"-ing-ness of being alive; that is something none of us really have a full grasp on creating. and even when we can't make what we want - god, it feels fucking good to try. and even just enjoying other artists - art inherently rewards the act of participating.

i wasn't raised wealthy. whenever i make a post about art, someone inevitably says something along the lines of well some of us aren't that lucky. i am not lucky; i am dedicated. i have a chronic condition, my hands are constantly in pain. i am not neurotypical, nor was i raised safe. i worked 5-7 jobs while some of these memories happened. i chose art because it mattered to me more than anything on this fucking planet - i would work 80 hours a week just so i could afford to write in 3 of them.

and i am still telling you - if you are called to make art, you are called to the part of you that is human. you do not have to be good at it. you do not have to have enormous amounts of privilege. you can just... give yourself permission. you can just say i'm going to make something now and then - go out and make it. raquel it won't be good though that is okay, i don't make good things every time either. besides. who decides what good even is?

you weren't called to make something because you wanted it to be good, you were called to make something because it is a basic instinct. you were taught to judge its worth and over-value perfection. you are doing something impossible. a god's ability: from nothing springs creation.

a few months ago i found a piece of sidewalk chalk and started drawing. within an hour i had somehow collected a small classroom of young children. their adults often brought their own chalk. i looked up and about fifteen families had joined me from around the block. we drew scrangly unicorns and messed up flowers and one girl asked me to draw charizard. i am not good at drawing. i basically drew an orb with wings. you would have thought i drew her the mona lisa. she dragged her mother over and pointed and said look! look what she drew for me and, in the moment, i admit i flinched (sorry, i don't -). but the mother just grinned at me. he's beautiful. and then she sat down and started drawing.

someone took a picture of it. it was in the local newspaper. the summary underneath said joyful and spontaneous artwork from local artists springs up in public gallery. in the picture, a little girl covered in chalk dust has her head thrown back, delighted. laughing.

#writeblr #warm up #this is longer than i wanted i really considered removing that part about myself and what i went thru #but i think it really fucking bothers me that EVERY time i talk about being an artist #ppl assume i just like. had the skill and ability to drop everything and pay for grad school. #like sir i grew up poor. my house wasn't a safe space. i gave up a FREE RIDE TO LAW SCHOOL. for THIS. bc i chose it. #was it fucking hard? was i choosing the hard thing?? yes. #but we need to stop seeing artists as lazy layabouts that can ''afford'' to just ''sit around and create'' #when MANY - if not MOST - of us are NOT like that. we have to work our fucking ASSES off. hard work. long and hard work #part of valuing artists is recognizing the amount we sacrifice to make our art. bc it doesn't just #like HAPPEN to us. also btw it rarely has anything to do with true talent. #speaking as someone with a chronic condition i hate when ppl are like u have it easy. like actively as i'm writing this my hands r #ACTIVELY hurting me. i haven't been posting bc my left hand was curled in a claw for the last week #this isn't fucking luck. after a certain point it's not even TALENT. it's dedication & sacrifice. #''u get to flounce around and do nothing with ur life'' is a narrative that is a direct result of capitalism #imagine if we said that about literally any other profession. #''oh so u give up 10 yrs of ur life to be a doctor? u sacrifice having a social life and u get SUPER in debt? #u need to work countless hours and it will often be thankless? well i wish i was that lucky'' #we should be applying that logic to landlords ONLY #''oh ur mom and dad gave u the money to buy a house? and all u did was paint it white and rent it? huh.''

[andthebeanstalk]

Today my therapist introduced me to a concept surrounding disability that she called "hLep".

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hLep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!

Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.

#hlep #original #mental health #my sympathies and empathies to anyone who has to rely on this kind of hlep to get what they need. #the people in my life who most need to see this post are my family but even if they did I sincerely doubt they would internalize it #i've tried to break thru to them so many times it makes my head hurt. so i am focusing on boundaries and on finding other forms of support #and this thing i learned today helps me validate those boundaries. the example with the milk was from my therapist. #the example with the towing company was a real thing that happened with my parents a few months ago while I was age 28. 28! #a full adult age! it is so infantilizing as a disabled adult to seek assistance and support from ableist parents. #they were real mad i was mad tho. and the spoons i spent trying to explain it were only the latest in a long line of #huge family-related spoon expenditures. distance and the ability to enforce boundaries helps. haven't talked to sisters for literally the #longest period of my whole life. people really believe that if they love you and try to help you they can do no wrong. #and those people are NOT great allies to the chronically sick folks in their lives. #you can adore someone and still fuck up and hurt them so bad. will your pride refuse to accept what you've done and lash out instead? #or will you have courage and be kind? will you learn and grow? all of us have prejudices and practices we are not yet aware of. #no one is pure. but will you be kind? will you be a good friend? will you grow? i hope i grow. i hope i always make the choice to grow. #i hope with every year i age i get better and better at making people feel the opposite of how my family's ableism has made me feel #i will see them seen and hear them heard and smile at their smiles. make them feel smart and held and strong. #just like i do now but even better! i am always learning better ways to be kind so i don't see why i would stop

[hussyknee]

my disabled ass, after (1)good day: "obviously I am cured. in fact it may have all been in my head. who can say? now to rejoin society!"

me, the next day: "it has come to my attention that i may be chronically ill."

#who'd have thunk #we're all shocked i know #i forced myself to go to supermarket and ended up clinging to the shopping cart to stay upright #took two hours to stop shaking from exertion #then immediately corralled the cat to tend to his rash #mfer struggles and protests until he realizes all over again that it feels quite nice actually #and then goes deadweight and purrs *while* warbling mournfully #presumably just on principle #but it's all still more spoons than I can spare #i need to take him to the vet for his follow up in a bit #so fucking drained #send thoughts and prayers #ugh #chronic illness #spoonie #disability #knee of huss

[wiisagi-maiingan]

I'm all for natural remedies and traditional medicine, but I think when your "natural remedy" is based on the idea that water can become medicinal by being in the presence of a teeny itty bit amount of something, then it's probably bullshit and you're getting scammed. Go buy some ibuprofen or see a doctor.

#this is a long way for me to say that homeopathy is a scam!! #and that ''homeopathic professionals'' deliberately prey on vulnerable and scared people #especially chronically and terminally ill women looking for help and answers to illnesses they don't understand #so then they end up paying absurd money for fucking PLACEBOS #literal bottles of water and sugar pills that can supposedly cure their diabetes or fibromyalgia or cancer #and it's fucking disgusting and shameful okay

[gla55t33th]

guh i want to try out a style but ive got zero thoughts (brainfog). Can people give me their blorbos or ocs in rb :3 ill draw two or three...

#Chronic pain fucking up the brain capacity but not the desire to create

[cayliecoltrane]

quick lil ETHOwO redraw

#guys whgat the fuck was with todays video. #so much goofiness and at the end we got IRL PHOTO NUMBER 2 LIKE WHATTTTTTT #etho <3 #hc etho #hermitcraft #ethoslab #hermitcraft etho #ethoslab fanart #ethos lab #i just think hes neat #he is so chronically offline #also i played two shows this weekend and they were awesome #i live in new york and i did the math and according to my calculations 🤓🤓 2.6 of my followers live in the nyc area #so maybe next time i have a show ill post about it and 2.6 of my tumblr followers will show up????? ethUwU?? 🥺🥺🥺

[ipostmysimpingstuffanonymously]

Redrew this one :3

#babii boiii haibara #im convinced that shoko satoru and suguru are all equally fucked up in the head #thats what being a jujutsu sorcerer does to you #making the most inappropriate comments at the worst time #yaga has a chronic migrane because of them #sashisu #trio #satoru gojo #shoko ieiri #suguru geto #jjk #fanart #jujutsu kaisen

[themathomhouse]

this disability pride month, stop making jokes about people in wheelchairs standing up or walking.

can I stand and walk? sure, for a short while and with pain. the consequences for trying to be out all day without a wheelchair are that I'll be in bed for the rest of the week, too tired and in too much pain to move.

but the government won't give me my own wheelchair because they have the same attitude as these jokes - I can stand up, so I don't need one. exercise is good for you, you should walk!

it keeps me trapped in the house, unable to do anything more than short stints anywhere without borrowing or hiring a wheelchair - one that causes me pain to sit in and relies on someone to push me (usually with difficulty), because they're not going to have a high-end chair for that sort of thing.

it's not a miracle that a wheelchair user can stand or walk. it's something we should aspire to see more often.

#disability #disability pride month #chronic fatigue #fibromyalgia #cfs/me #post exertional malaise #like fucking hell people we should really be long past this by now #why am I seeing these bullshit jokes on my dash in twenty fucking twenty three #i did a short walk to a cafe yesterday because I thought I was up to it #and my right leg has seized up #my ankle can barely take my weight and my hip won't move properly #also lol I almost certainly have hEDS but cannot persuade a doctor to give me a referral #in summary #stop being fucking dense #i would rather people who don't need mobility aids use them than have people struggle because they don't want to be seen as a faker #or have people think that you have to reach a certain level of severity before you need it #also if I had a wheelchair I would bring my cat with me more places but that's by the by

[spooksicl-e]

scar tissue that i wish you saw.

#and i remain a chronic pain!john truther #if i have to hobble about with a cane then the man who was blown up must too #my art #the @ is my insta #fanart #fanartist #art #digital art #sherlock & co. #sherlock and co. #sherlock & co #sherlock and co #fuck if i ever figure out which tag im supposed to use #john watson #sherlock holmes #sherlock #johnlock #bbc sherlock #i say. like a liar. #gen

[carnivalcarriondiscarded]

finally colored that Eddie scribble <3 rough day p.2!

#am i happy with this? no! but im tired of messing with it so this is what we get #i mean its not Bad but. sigh #i gotta get better at coloring stuff its my Art Weakness #no matter how much i try i cannot understand color theory #my brain simply says No <3 #i have perfect color vision and yet. and fucking yet. cant use it for shit! yeehaw! #scribble garnish #welcome home #welcome home puppet show #eddie dear #i hope he enjoys that ice cold soda - sold exclusively at howdys for a stellar deal only one hundred percen- *gunshot* #i would like everyone to know that i unironically initially wrong 'seld' instead of 'sold' #and genuinely didnt know why there was a little red squiggle friend underneath it for a solid minute #the brain is rotting <3 i go outside and the ravens start divebombing <3 #i am living up to my url of 'carrion' #dead meat walkin babeyyyyyy #i think the chronic migraines are actually frying my neurons!!! yee! haw!

[fossilizedhysterics]

sanders sides beach episode when

#YES its april NO i dont care!!!! summer is a state of mind!!!! #i dont actually like summer all that much i am chronically overheated #but l like swimming n stuff #my favorite way of drawing #is just refusing to do lineart #and taking the sketch and just. cleaning it up until its good enough #and using that #bc anytime i do lineart normally i fucking hate it #dont tag this as genderbend #theyr just trans #STILL struggling with my patton design #i also really struggled w logans fit so. ignore how lazy it is #roman sanders #patton sanders #logan sanders #virgil sanders #janus sanders #remus sanders #sanders sides #thomas sanders #sasi #thomas sanders sides #sasi art #sanders sides art #tss fanart #tss #ts sides #art #my art

[snurtle]

I've been thinking about the templars lately. they were promised honor, virtue, told that they would be charged with protection of the innocent... And then those same people are systemically exploited and abused, abuse others because they're taught to regard everyone else as either sheep who need to be lead or potential threats. Never equals, except in their brothers/sisters-in-arms. They act as the guard-dogs and military arm of an entirely different organization that they're only a functionary member of but have no governing say in. Even the chantry aren't their equals- they function as the templar order's supervisors! And all this isolation and closing of ranks ends in disability, addiction, death, and abandonment by the system they spent their bodies in service of.

To top that off, retaliations against them just confirm the paranoia they were taught to embrace. It's probably a long hard road to get out of that hole.

Like, listen. the dichotomy of mage vs templars is a satisfying and easy one, but the system is tearing them apart too. have you ever heard of a retired templar?

at the end of it, mages and templars need to unite against the real threat. the chantry.

#this is an anti chantry post i want that temple exploded NOW #the chantry controls the lyrium; benefits directly from the formari enchanter system; has a financial incentive to make and use tranquil #the templars are breaking themselves in service of a system that functionally does Not care about them in any way except #their ability to hold a sword and counteract fade magic and that messes me up #thedosians need a fucking cross-field labor union NOW #of course the kalna would probably send the carta after any potential organizations of that nature #and the coterie #cant kill em all though!!! #actually that would be a hilarious fic #dragon age #canon dont interact i dont pay attention to discrete facts here we operate on half remembered game knowledge and vibes #if there are any retired templars out there: uhh... enjoy that. happy for you king (alistair) #cullen rutherford fundamentally represents 'no retirement plans' for me #the man is fifteen chronic illnesses ptsd shit withdrawal and interpersonal abandonment in a trenchcoat with fur trim #text it #long tags

[crippleprophet]

i don’t understand how people can be so fucking cruel about people who can’t read much (including people who aren’t literate, though this post is from my experience with chronic illness). like, one of my main motivations behind posting excerpts of butch+femme writing on my main (@campgender ; it’s fine to go through my bookshelf tag but please only followers age 18+ on that blog!) is that it is fucking hard to read a full book!!

my reading comprehension & stamina decreased drastically when i developed ME, & while i’m overjoyed that i’ve recently regained a lot of that particular ability since getting blackout curtains, there are absolutely still texts i can’t even begin to parse that i once would’ve loved digging into — texts that it would be actively dangerous for me to attempt to struggle through because it would break pacing.

idk i’m not trying to be self-congratulatory here or whatever but like. the second i could access information through this means again, the focus of my (very fucking limited!!) energy has been giving it back to my people. my life has been unquestionably, deeply shaped by tumblr users who share excerpts of theory & memoir & poetry because they were providing labor of which i was in need & incapable.

finding, selecting, transcribing, formatting, & at times contextualizing passages takes a lot of fucking time & energy, but in order for me to encounter certain concepts, experiences, & histories, it’s work somebody else had to do, because i couldn’t read 200 pages of research or anthology in order to encounter the 10 that would change my life — but posted 2 or 3 pages at a time, i could save that in my drafts to get through on a good day, & quotes that were only a couple lines i could usually read right when i encountered them.

so, in memory of the years i spent unable to access theory through anything other than excerpts & secondhand summaries,

and in anticipation of the years to come where i will live the same,

and in acceptance that the brain is a muscle, in love of we the exercise-intolerant,

to you, dear reader — whatever form & frequency & duration that reading may take, even if it’s no further than this post — i make my motherfucking covenant: the issues i discuss around pulling quotes will be about the political act of the ellipse and the ethics of transcription, not shaming people for the methods of accessing information that are available to them. as often & as long as i am able, people can ask me to explain something or summarize in plain language and i will meet them with respect, interest, & effort. if someone’s looking for information on a particular topic, identity, experience & doesn’t have the energy to find it, i’m gonna give what i have towards filtering through the bullshit for the gems.

according to our abilities. according to our needs.

and the next time somebody tells you it’s not ableist to say everyone has to read [whatever work], tell them to go put their precious ability to better use in making it more accessible.

#mac.txt #continuing my trend of showing up on this blog once every couple months with an infuriated rant & then fucking off back to bed #me/cfs #reading #chronic illness #ableism

[pseudophan]

i feel like we're in desperate need of a chill and casual dapg video right now. the crafts video followed by an unbearably married sims vid followed by even more lethal crafts content has really done a number on us all

#like i thought sims would be the chill one but it was ANYTHING BUT #and then thats followed up by them sharing clothes and more hand holding? come on #give us a chance #im so chronically 13 this month its so fucking bad let me rest

[cistematicchaos]

The psych ward was hell for so many different reasons (most of the staff hated Mad people, the food was mostly inedible, it was a glorified prison, ect) but one of the worst parts for me was how inaccessible it was as a physically disabled person.

I wasn't allowed to have my cane or my earplugs (both of which I need), I was "required" to shower daily or get marked as "noncompliant" even though I have severe pain issues that make that near impossible, walking was a constant requirement because not only were there "meetings" and "classes" that you attended or got marked "noncompliant" but if you needed water or I dunno help you had to walk to the front desk and ask. You also had to walk to the nurse's desk and stand in line to get medicine or get marked as "noncompliant" because she sure as hell wasn't going to bring it to you.

I was constantly getting both my glasses and my sunglasses taken from me by people who did not believe I needed them and the chairs were all hard plastic that did not work well with a broken body.

They also did not keep food allergies in mind and lactose intolerance also did not count as an allergy so that was hell too.

I have chronic migraines but "wasn't allowed" to take any medicine for it unless I wanted one ibuprofen. There were also windows everywhere and no curtains which went beautifully with super bright lights, so I never ever felt like I wasn't dying from a migraine and general light sensitivity. There were no quiet rooms, no dark rooms, nothing but light and loud. I was also taken off all my pain meds for over a day because they "weren't sure" if I "actually needed them" and I was taken off my heart medicine repeatedly because they really just thought I was too young for that.

I was given a walker instead of my cane, which does not work the same, and doctors constantly kept trying to take it away because "you don't really need that, do you?". There was often not enough space in certain areas for my walker which made me extra vulnerable because when I was being harassed by people, I couldn't just walk away and staff was pretty much useless.

Not to mention, we were "encouraged" to wake up at five in the morning every day and if we didn't, it would get written down, which is wild because my pain meds require I get a certain amount of sleep or they fuck me up.

It would've been hell even if I wasn't physically disabled but I am and all I could think the whole time was about people who had worse physical disabilities than me and needed more support and accessibility and how they would get or did get treated in places like this. There was almost no consideration all the time and staff was actively hostile over it.

A bunch of psych wards refused me as a patient because my files show I'm physically disabled. What are we supposed to do? Where the fuck do they think we can go?

#chaos is speaking #Ok to reblog #disability #physical disability #cripple punk #cripple shit #actually disabled #Psych ward #mobility aids #disability aids #chronic pain #chronic migraine #fibromyalgia #\o/ #This isn't even all of it #it was so fucked up #ableism #disability rights