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#it would not cure me. it would make me so much worse but i am suffering so much
uncanny-tranny · 1 year
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I think it can be true that certain lifestyle changes can help with pain and disability, but people really overplay how those changes will affect people's lives.
I've found that exercise has helped my back pain - I have had chronic back pain that PT didn't touch, but exercise has helped. However, what hasn't changed is what exasperates that pain, and when my pain is especially exasperated, it doesn't matter how much I exercise, I'll be in my bed trying so hard to get out, and I'll be seeing white. So, yes, exercise helped me, but it did not save me. That's an example of what I mean.
It's fine to give (solicited!!) advice to people about how to manage things like this. But I'm begging people to be realistic about this. Lifestyle changes can only do so much, and disabilities are - surprise! - disabling.
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moe-broey · 8 months
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I've never been a "born in the wrong generation" type of guy because for So Many reasons I would be dead. Full stop like I would have died during childbirth I would have died of appendicitis age 8 and that's not even factoring in my queerness and neurodivergency and ultimately my mental health (carefully maintained thanks to support/modern advances in medicine and treatment). On Top Of That my hobbies include The Video Game and many such things that are of modern invention (adjacently: including The Device I'm typing this out on right now which has become my main avenue of communication to the outside world)
But I'm just saying that. It WOULD be nice. To exist in a world where fluorescent lighting doesn't exist and everything is possibly 99% less overstimulating all of the time forever.
#and like. a little less capitalist dystopia. i could do with less of that.#but focusing primarily on my own struggle. it's just a bummer sometimes like#i genuinely had fun!!! w my sisters and friends!!! esp at the arcade w ddr that is ALWAYS so fun#but man you can't even take me to your own damn house unless if you're ready to accept vampire rules.#my sister can/does dim the lights if i ask and i don't mind asking it's just fucking crazy to me like#damn uoy guys live like this. bright ass lights ten diff convos at once music in the bg. what if i died on this beanbag#BUT. THAT IS. one thing that is very nice i AM allowed to die on the beanbag!!!!!!! i'm allowed to cozy up and rest#while everyone does their own thing and i can listen in and chime in every now and again. severely underrated tbh#i really only feel a little hopeless when i think about like. public spaces where the only thing i can control is myself#IF i am ever employable again my requirements would be. no florescent lighting. i will die.#which like. kind of limits my prospects.#i do enjoy outdoors/physical work actually though so. i'm just limited bc i have to bind.#i am. so severely. banking on top surgery working out. it won't be a cure-all but by god it WILL open up my options#plus the. constant fatigue. of binding. but not binding is even worse. i need divine intervention (surgery)#SAD. well there are other people in yhe world#but man rhat is like my fave joke to make but i feel so much sadness attached to it. the world will move on without me.#there are a million other people who are far more capable. much 'easier'. ect.#and i know the answer is well there's only one me and there are a handful of people who love me. who keep me and include me#i am very thankful for that.#it's just a bit of a bummer sometimes. i stay silly and have the most fun i can but i am a little sad about it.
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mochapanda · 1 year
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i think if i dont get a new job soon i am going to kill myself
#like im making absolute dirt shit money i cant save up even w/ over time and ive been fucking my health into the ground#to the point where im on MEDS for STRESS to cure my fucking STOMACH PROBLEMS#like. i cant digest food bc of STRESS. that is fucking insane i make minimum wage#i just need a normal 9 to 5 with weekends off how does every other adult manage that do those even exist anymore#where are all these $20/hr jobs old people complain about i dont see them#like i cant go back to school bc its awful and people are awful but work is so much worse#the assistant manager came into my twitch chat to talk about work how did i even get in that situation.#why would anyone think thats acceptable or okay#why does a 40 y/o man think im his best friend kill me kill me right now i am in hell#every day is just so fucking uncomfortable and disgusting my customers are disgusting and creepy#i am a fucking 20 year old get the fuck away from me#why cant i just be like a bank teller or smth and make enough money to move out of this god forsaken state in like a year#i dont even have my own life i have so much stuff and never do anything with it bc im always working or tired from working#i dont think bank tellers have to deal with crackheads screaming at them and calling the police bc they cant login to google#or not having a work schedule for a month bc the district manager just cannot be bothered#i think its a great job for normal people that arent constantly too high off their ass to hold a conversation#definitely wont have the same problems i do now itd be new problems#like passive aggressive 30 y/o women drama#be a nice change of pace
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picorimori · 2 years
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only Nier Replicant 1.22 on Nintendo Switch can cure me
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neonvqmpire · 2 months
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vent in the tags
#truly astounding how my grandma was like: walking so much in your first job toughened you up like no it did not u idiot#i was so overworked and depressed and miserable. i had frequent panic attacks about going out.#im also not like her or my parents or anyone in the sense that everything is much harder for me because im audhd#even if i wasnt its just the pain i was and am feeling is very real#u can cure fatigue by walking and going outside like are u fucking serious 😭 the point is that my body is so tired it cant move#*cant#moving makes it worse#how often do i have to tell them (my family) that#i thought my grandma would understand bc of her illnesses but she has srthritis and stuff ehich does get better from moving#fatigue is very different tho (!!)#and i now realised after all this that ive struggled with fatigue my whole life. more or less. and when i worked at my first job i was#burning myself out after already having had a burnout at school before.#like im literally disabled idk why im even having a discussion about this. its not the same thing.#do they think i dont want to go outside in the summer????#im not fuvking lazy !! they need to stop thinking they know what its like for me. its not. like i have to rest after half a day of uni bc#its legit SOOO exhausting to socialise for me. the only reason i can do most things in a day and have the enrrgy for them is because i take#amphetamines for my adhd. like stop thinking that we are the same and that i can just do shit without it having a consequence for my energy#levels. im a spoonie#if theres no spoons i have to lie in bed for 2 hours until i can get up again to do sth to keep myself fed and needs met#like audhd disables me so much ON TOP OF the fatigue i accumulatef from burnout over the years AND this most recent post viral fatigue#god i was yapping so much here im sorry 😭🫶#personal#sage posting
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aftermathing · 3 months
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wolfiesmoon · 8 months
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Hey I hope you are doing well when ever you are reading this but how do you think the 3rd year boys from twst would react to their s/o (gn reader) cuddling with a huge plush instead of them.
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Like this.
Oh boy oh boy this kinda cures my writers block tbh, i have so many drafts but none of em look enticing enough to continue writing (´д`|||)
I took out a few of the 3rd years bc its too many people for 1 fic but i might make a part 2 where i add the missing 3rd years at some point
i went with the more silly writing style again, hope that's fine by you ○( ^皿^)っ
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𓏲 ๋࣭  ࣪ ˖ Malleus Draconia
He doesn't exactly get why, but he feels kinda annoyed just laying next to you while you hug a big ol plushie
This doesn't feel right🫤
But then again, you look rlly happy and satisfied so he stays quiet since if you're happy, he's happy (he desperately wants to be in the plushy's place)
When you playfully kiss the plush though, that rule no longer applies. After all, his rightful spot is in your arms🫠
He nudges you. "Put the stuffed animal away."
"You sound angry." You smirk and kiss the plush again, knowing he's probably annoyed about that
without another word, he pulls the plushy out of your hands and settles down in its place
"I am a much better than that object. Just so you know." he smiled smugly, expecting a kiss on the cheek just like you gave to the plushie earlier
you kissed him on the lips instead just to see his eyes widen and his face go red ofc 😏
𓏲 ๋࣭  ࣪ ˖ Leona Kingscholar
basically, it is NOT happening
"hell no." is the only thing he says before ripping the poor plushie out of your arms and chucking it across the room
like actually how DARE you try to replace him with a plushie
"Why would you do that?" You pouted at him, looking at the now discarded plushy from the bed🤕
"You know damn well why." He huffed, laying down on top of you without warning which tends to be a habit of his
"Because that's my spot, got it?" He answered for you. clearly you forgot😒
"Uhhh, right." you answered after a short pause...
"I won't remind you next time." he sounded rlly annoyed. it's kinda funny how worked up he got over a plushy replacing him 🤭
this also means he won't let you get up for like.... atleast 2 hours to atone for your sins
moral of the story: don't do this again unless you want a ripped up plushie and a pissed off lion man😠
𓏲 ๋࣭  ࣪ ˖ Idia Shroud
"This is so unfair. Even worse than an OP boss. " he sighed dramatically, laying down besides you and pouting at the sight og a huge plushie in your arms
"pick up the sock if you have enough energy to complain." you turned away from him, still annoyed with him
being the epic gamer he is (😎💯), he discarded one of his socks in the middle of his room and didn't feel like picking it up later even after you told him to
...which ended with you refusing to cuddle with him until he does pick up the sock
after a short while of very awkward silence...
he groaned in annoyance, begrudgingly getting up and finally picking up the sock, then leaving the room to put it in the wash
you smirked victoriously, placing the plushie away as promised and letting him hug you instead
"The things you make me do, smh." he sighed, relaxing into you 😒
"Picking up a singular sock?" you teased him, hugging him back
He didn't reply so that means it's your victory 😝
𓏲 ๋࣭  ࣪ ˖ Vil Schoenheit
this is an unforgivable offense, just because you had a little disagreement earlier doesn't mean you can just replace him with a plushie😠
love transcends disagreements, after all
does not help at all that the plushie's cute round face reminds him of a certain thorn in his side named Neige LeBlanche😒
he sighs, "I may have been too harsh back there."
your only reply is an annoyed huff and you hug the plushie tighter which makes one of those anime veins pop up on his face 💢
he takes a deep breath "It was not my intention to hurt your... sensibilities." he's trying babe, he's really trying
You don't reply for a moment...
"Ugh." you throw the plushie away and hug him tightly "This doesn't mean I forgive you, just for the record."
"I still stand by my opinion too, just worded less harshly." he gently puts an arm around you, stroking your back
it was only a matter of time until you gave up with your stubborn pettiness, soon you'll forgive him too, he'll make sure of that 😌
𓏲 ๋࣭  ࣪ ˖ Lilia Vanrouge
He's actually surprisingly chill about it i feel like
He wouldn't get annoyed or be jealous per se, he'd just get a little sad it's not him you're hugging😔
he's there, you know? there's no need for a plushie...
"Am I not satisfactory enough?" He asks half playfully half seriously
"In what sense?" you totally knew what he meant but just wanted to tease him back
"Hey, isn't this supposed to be the other way around?" he smiled at you, immediately knowing what you were playing at
"Hahaha, you know me too well." you kiss his cheek, yet you still don't let go of the plushie which makes him pout
"I see you have found yourself a new lover." his eyes travel to the plushie for a moment, the betrayal is real😔🙏🏻
"You got a problem with him?" you raised a brow 🤨
"A little." he hugged you from the back, getting comfy
"Okay fine, maybe my ex is the better one after all." you let go of the plushie and turned around to hug him back 💗
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drchucktingle · 4 months
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POUNDED BY DR. GLOBUS
wanted to post today about recent health journey of chuck. ALL STARTED at texas show when i began to feel tightness in throat. i have learned this is called GLOBUS which is a tingler character name if ive ever heard one. got through appearance and had blast but felt terrible
plane journey home was even worse. first thought i strained my voice, then tested for covid (negative) and then figured it was just some kind of virus. had running nose and hoarse and extreme pain behind face and MOST of all this golf ball throat
figured i would get better as viruses tend to go but I DID NOT. after a few weeks went to way of urgent care and they took one look and said you have EXTREME FORM OF ACID REFLUX called laryngopharyngeal reflux (also great tingler character name)
basically this is when your stomach acid comes all the way back up into your throat and erodes it. they immediately put me on medications name of pepcid plus tums plus gaviscon and on and on. was inhaling a dang pharmacy every morning
problem is, NO CHANGE. in fact it started getting worse. in addition to previous symptoms i now couldnt keep any food down. upset stomach all the time. could barely sleep. plus it is scary to have a sickness that gets WORSE over time like this
more doctor talks. i up doses of medication to combat sickness but does not seem to work. one night wake up and think 'dang i need to go to er my stomach is going to just melt or something' (keep in mind because i cant keep food down i am always hungry too).
i go to hospital and they say 'WHOA we need to intervene right now we are doing some tests and putting you on SERIOUS LIFE CHANGING MEDICINE. but here is catch to do the tests we need you to stop all your medication for 48 hours and it will be HECK but you gotta do it bud'
so i stop all medication in preparation for new SICK LIFE and suddenly… i start feeling better. not just a little but after weeks of this awful way i wake up in ONE DAY and feel fully cured. now heres twist: at the same time this was happening I started taking allergy medicine
you may already know where i am going with so i will just hit you with it. my INITIAL SICKNESS was just extreme seasonal allergies that required nothing more than claritin and flonase. however i was misdiagnosed with ACID REFLUX and medication was making my stomach a wasteland
the second i stopped taking acid reflux meds and started on allergy trot i was better almost instantly. today i feel HECKIN GREAT. (SIDE NOTE: after 4 years of chronic pain i am so thankful to not have some OTHER long term health trot to deal with. DANG)
so what is lesson here? first of all please do not think this is in ANY WAY anti-doctor rant or anti-medicine. my doctors were trying their best and made a mistake, they are just people. ALSO while acid reflux medicine made me sick, allergy meds made me better. i am SO fortunate
but what is REALLY fortunate is that chuck is covered under SWEET BARBARAS HEALTH CARE (she gets very good coverage under the frozen lake). most artist buckaroos, even WILDLY successful ones, do not have health care which is huge issue that should be talked on more.
point is EVERYONE should have healthcare. this whole adventure was bad, but it also only cost me 50 dollars. hundreds of thousands of other buckaroos would have to deal with this PLUS it would completely upend their life to cover medical expenses because of a SIMPLE MISTAKE
so that is my story, usually there is more of a lesson to these rants but this one is really just ‘dang what a trip.’ so grateful for my health and my way and the fact i can get simple allergy medicine over the counter. most of all THANKFUL FOR MY BODY it is such a treat to exist
thank you for reading and remember to advocate for yourself and your feelings both BODY and MIND at the doctor. listen to your trot and do not forget that LOVING YOURSELF AND THE SYSTEMS OF YOUR BODY proves love just as much as loving others. trot on buckaroos
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radioisntdead · 6 months
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I don't know if you do parental asks, but if you do, could you bless me eyes by writing a father Alastor and child!reader who is a toy/doll demon? Reader is hyperactive but very clumsy so Alastor always has to keep an eye on her so she doesn't hurt herself and sometimes he resorts to having one of his shadows watching over her if he's busy. Reader is small so they always seem to get stuck in cabinets or closet, which scares the hotel residents when they see Reader in a random place. [Not me trying to cure my daddy issues] 😂😂
Good evening my dear! I've been expecting someone to request a parental Alastor, [No seriously I have, I had a feeling someone was gonna request it, it was only a matter of time] I'VE BEEN READY FOR THIS, Not to mention I'm related to a hyperactive child so taking inspo from that! (Please help me he bites)
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Father! Alastor & child! Reader
Platonic, obviously.
Warnings!!!
Fanon, I'm going fanon for this, mild cannibalism, feral, reader is based off a porcelain doll but I am TERRIFIED of porcelain dolls, anyways feral reader, injuries etc etc Alastor scooped reader up from the side of the street, I like how I've had every parental hazbin character with a child figure reader just scoop them off the street, I should draw that later
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No one knows how exactly how you ended up below, it was theorized that there was probably a mix-up or maybe you were one of those deranged child serial killers or maybe you WERE hellborn that just aged really slow, like concerningly slow, but from some of the things you say it was suspected you were indeed a sinner.
Anyways that's up to you to figure out, but what we do know is that Alastor stumbled upon you absolutely tearing apart a grown sinner in some alleyway, despite looking like a porcelain doll that could break if dropped on carpet, the radio static coming from him caught your attention,
And then you saw those big fluffy ears that sat on the top of his head, you ran towards him with the speed of a feral child, because you were, infact a feral child
"Fluffy!"
You immediately climbed onto him, little hands clinging onto the fabric of his suit before finally reaching for his ears,
He didn't even get a chance to get away from you. With a strained smile he grabbed you off him, and held you up as he inspected you, observing your appearance,
"How peculiar, don't do that."
He said as you continued reaching for his fluffy ears.
And that had sealed his fate, he could NOT get rid of you,
He left you back in that alley he found you? You showed up again two minutes later, he sent you into the Vee's tower? You are the reason Valentino has a messed up antenna.
Alastor became a father against his will, and honestly it could've been worse, you were a decently chaotic child, that would either follow him around or when in the hotel would climb up his back and play with his fluffy ears while maniacally whispering
"fluffy, fluffy, fluffy, fluffy"
"Dear, please get off me."
Your skin was covered in a light porcelain coating, like thin wax covering soft clay, If thrown harshly against something you could crack and bleed, it wouldn't make that much of a sound.
you were very much a fragile thing and as your reluctant caretaker Alastor made sure that you stayed out of trouble, safe and sound, and away from any sharp objects.
Unfortunately you were hellbent on getting into mischief, especially in the hotel where there were many things you could get into, like behind the bar where husk worked, He took a five minute break to grab something to eat and you had managed to slip yourself behind several bottles inside the cabinet, one wrong move and they all fall to the ground and shatter with the alcoholic beverages inside them,
He had to take out twenty bottles, place them on the counter then take you out, gently place you on the ground then put all the bottles back, it was a hassle, not to mention you had a thing for fluffy things, Husk was NOT an exception, if he wasn't paying attention you would claw your way up his back like a feral mongoose and just gently pet his ears while mumbling "Kitty cat, kitty cat kitty cat kitty ca-"
You got along well with Niffty, she was like a sadistic older sister but it was decided that she was a bad influence on you so whenever you're near her it needs to be supervised by someone.
You give Charlie mini heart attacks because either you'll be the sweetest little thing towards her, you'll draw with her, call her 'Big sister Charlie' or something like that and you will have her wrapped around your little fingers, or you'll be a source of stress because your playing on the railing and oops! Your falling twelve feet to the ground and she's rushing over to catch you, and after she catches you, probably breaking something in the process you just give her the biggest smile as you hug her saying she caught you, you've also terrified her and Vaggie more then once by hiding underneath their bed and popping out at the worst of times with confetti or something.
Speaking of Vaggie you had a similar relationship but she was more strict in a way, she has a soft spot for kids and she keeps an eye on you, she'll teach you how to spar as an attempt to burn any excess energy you have, she'll go for a run and take you with her, she'll have you on one of those child leashes because you can, will and have run into the road and almost got taken out, respawning was a very very painful process, it was like getting ripped apart, turned inside out, twisted and turned back out and put together again, there's a reason it can take time for a sinner to respawn.
A child like you should never have to deal with that, and Vaggie, while she can't respawn she understands and will prevent you from having too, Alastor may not like her all that much (Or at all) but she's proven to be a decent babysitter.
Sir Pentious was like a goofy older brother or that dork of a cousin, he'd probably invent something to entertain you or he'd read to you, you scare eggs out of him when he's working on something and BAM you pop up out of nowhere, the majority of the eggs were fearful of you too.
"uh, can you not bite me?" A egg asked as your unhinged jaw munched on him, slowly tearing away until he eventually cracked leaving you to run away from the yolk covered crime scene.
[He's the first person you go to when you are redeemed, a familiar face is what you need in an unknown place where you should've gone in the first place, the halo on your head makes him cry, you made it with him but that more then likely means you perished like he did]
Angel dust was no different from the others, he tones his language down a bunch but he's still Angel dust, a inappropriate joke can and will slip through the cracks but he doesn't mean any harm, he just panics and tells you not to tell your Pa, giving you some child-safe candy in return and if your running around like a manic Niffty he'll pick you up and try to find the more responsible residents, or you'd tug on his fluff, he was one of the fluffiest residents and that made him, a major target for your lil' grabby hands, if you ever want a snack your not supposed to have he'll give it to you, you want ice cream? Sure knock yourself out kid, He reminded you of someone you knew once.
What did they look like again? You couldn't remember..
When Alastor steps out of the hotel to go to a overlord meeting or whatever he does and no one is available to watch you, he'll have his shadows watch over you,
His shadows need a pay raise.
"I'll be back in a few hours, be good dear!" Alastor said patting you lightly on the head as you grinned up at him,
"Alrighty! Bye Papa!"
You wave as he leaves, as the door closes you turn around and wander around the hotel, everyone was busy preparing for something, you didn't quite know what yet though, but you were left to your own devices today! You ran up and down the staircases, you got a laundry basket and used it as a makeshift snowboard on the staircase which Alastor's shadow had to make sure it didn't fling up into the air, you jumped off a counter his shadow grabbed the collar of your shirt to stop you from face planting.
You eventually get bored of playing around and try to find Niffty to ask if she could make you something to eat but the hotel's resident housekeeper is nowhere to be found, so you enter the kitchen and it is a DANGER ZONE, you knew not to touch the stove or the sharp knives thankfully but that didn't stop you from dragging over a chair to climb up into the cabinet to grab a plate, a few cups falling in the process but the shadow caught them before they could shatter into the floor, You hopped down from the chair to get a tortilla, the shadow stood next to you ready to grab you if needed, you waddled over to the refrigerator and took out a pack of bacon bites and sour cream, you acquired a plastic knife to spread the sour cream onto the tortilla, sprinkling some bacon bits after before rolling it up and placing it onto the plate.
You grinned at your snack, this is what defined your childhood, you turn back to the refrigerator to grab a juicebox before taking the plate and booking it back into the main room of the hotel.
You sneakily made your way to the TV and looked around, you gave the shadow a 'shh' motion as you turned on the tv to vintage cartoons, like Popeye, Betty boop or if you were lucky to access more modern cartoons, you could watch Scooby doo!
This was the time Alastor's shadow could rest from protecting you, so it wouldn't snitch to Alastor about your consumption of cartoons.
It wished you would watch more cartoons because after your snack you were dangling from the chandelier! You didn't know how you even got up there?!
When Alastor finally returned from wherever he was you immediately ran, tackling the Radio demon in a hug, Alastor's smile tightened slightly but he bared with it, you were just an excited child that he cared for, like a pet.
"I take it you were behaved while I was away?"
You nodded, "Yep!"
The shadow would say otherwise because you were HANGING FROM THE CHANDELIER FOR AN HOUR, They had to lurk around in case you fell, which you did, Thankfully they didn't have to catch you, because Charlie had emerged at the right time to catch you as you dropped from the chandelier.
But Alastor didn't need to know that right now, he'll find out on his own when he's making dinner and he goes to check on you to see you dangling from the chandelier again with Angel and Husk scrambling beneath trying to catch you if you were to slip and fall.
"Aren't you a little troublemaker?" He would say as he snapped his fingers and you were brought down from the chandelier, safe and sound, he'd bring a clawed hand to your face as he gently pitched your check, tutting like a old lady before turning around and bringing you to assist him in the kitchen and give huskerdust a break.
Alastor didn't see himself ever having a child before you, and he could see you growing into a powerful overlord one day, he'd be there to guide you as you grew, you would've grown up loved, watching as sinners entered the hotel and left as saints,
For now you were standing behind him in the kitchen carefully mixing rolling out some type of dough as music played from the radio and you told your Papa about your day.
Once the dough was rolled out and cut Alastor pat your head saying that you did a good job before moving to dip the dough into hot oil, as you watched, a tentacle holding the back of your 1930's themed attire making sure you didn't dive into the oil by accident.
Within the hour you were sat at a table with freshly made beignets Infront of you,
"Enjoy!"
"Thank you Papa!"
You said before digging into one of the beignets as Alastor smiled per usual, it was a nice treat, you liked moments like these, you hoped you could stay in the hazbin hotel with it's residents and your Papa forever, they were your family and family stays together right?
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Good evening folks! Thank you for tuning in! I was supposed to post this last night but I passed out, and We may be adopting a dog soon! I'm not using that as an excuse I'm just excited, anyways I'm working on requests, part twos and all that good stuff! Tune on in for that later on!
Also I may have added sprinkles of angst here but we don't talk about that =]
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beatrice-otter · 11 months
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The Other Half of the Social Model of Disability
Lots of people in fandom are aware of the Social Model of Disability, which is a direct contrast to the Medical Model of Disability. Problem is, most of those people only understand half of the Social Model.
If you don't know what I'm talking about, the "in a nutshell" version is that the medical model views disability as something that is broken and which needs to be fixed, and little or no consideration is given beyond trying to cure it (and little or no consideration is given to the needs and wishes of the person who has it). The social model of disability, on the other hand, says that the thing that disables a person is the way society treats them. So, for example, if someone is paralyzed and can't walk, what disables them from going places is buildings that are not wheelchair accessible. (Or possibly not being able to afford the right type of wheelchair.) Inaccessible spaces and support equipment you can't afford are choices society makes, not a problem with the disabled person.
People then take this to mean that the only problem with disability is the society that surrounds it, and therefore in some utopian future where capitalism is no more and neither is ableism or any other form of bigotry, all problems disabled people have will be solved.
Except that what I've just described is not actually what the social model of disability says. Or, rather, it's only half of what the social model of disability says.
The actual social model of disability begins with a distinction between impairments and disabilities. Impairments are parts of the body/brain that are nonstandard: for example, ears that do not hear (deafness), organs that don't work right (e.g. diabetes), limbs that don't work (paralysis), brain chemistry that causes distress (e.g. anxiety, depression), the list goes on. The impairment may or may not cause distress to the person who has it, depending on the type of impairment (how much pain it causes, etc.) and whether it's a lifelong thing they accept as part of themselves or something newly acquired that radically changes their life and prevents them from doing things they want to do.
And then you have the things that disable us, which are the social factors like "is there an accessible entrance," as described above.
If we ever do get a utopian world where everyone with a disability gets the support they need and all of society is designed to include people with disabilities, that doesn't mean the impairments go away. Life would be so much better for people with impairments, and it's worth working towards, but some impairments simply suck and would continue to suck no matter what.
Take my autism. A world where autism was accepted and supported would make my life so much easier ... and yet even then, my trouble sleeping and my tendency to hyperfixate on things that trigger my anxiety would still make my life worse. I don't want to be cured of my autism! That would change who I am on a fundamental level, and I like myself. My dream is not of a world where I am not autistic, but a world in which I am not penalized for being autistic and have the help I need. And even in that world, my autism will still sometimes cause me distress.
There are some impairments--conditions that come with chronic pain, chronic fatigue, etc.--where pretty much everyone with that impairment agrees that the ultimate goal is a cure. But nobody knows how long a cure will take to find (years? decades? centuries?), whereas focusing on the social things disabling you can lead to improvement in your daily life right now.
In conclusion: the social model of disability is very valuable, and much superior to the medical model on a number of levels. But: please don't forget that the social model makes a distinction between disability and impairments, and even if we reach every goal and get rid of all the social factors that disable people, some impairments will be fine and cause no distress to the people who have them, some will be a mixed bag, and some will still be major problems for the people who have them.
Also on Dreamwidth
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hello-nichya-here · 10 months
Note
Did Sia insult topic of autism somehow?
Oh honey, it's sooooooooo much worse than that.
Sia wanted to make a movie about an autistic girl that manages to connect to people/feel safe and confident through music. So far, nothing outrageous, just a simple concept that would obviously put Sia's music front and center while doing something nice and educating people on autism.
There was controversy about her not casting an autistic actress as it would have been nice representation, but she could have totally gotten away with that since, come on, hollywood hasn't even figured out Rain Man isn't exactly true to life, they're not ready to have an autistic person playing an autistic character. Baby steps.
The real problem started when Sia started promoting the "charity/support group" that was helping "educate" her on the topic to make the movie. The "charity" in question was Autism Speaks - which is absolutely HATED by the autistic community for things like:
1 - Spreading the myth that autism is a mental illness that one can develop/catch like the freaking flue and potentially be cured of, instead of a neurotype, aka something starts in the woomb and cannot be "cured" because to do that you'd need to replace someone's entire nervous system, which is impossible.
2 - Using that myth to get outrageous amounts of money from people so they "search for a cure" - that doesn't exist and will never exist because curing autism is biologically impossible, AND despite the fact that the overwhelming majority of autistic people don't even want to be "cured" (plus, since said "cure" would essentially mean giving the person a new brain, it leads to the question of "Would I even be the same person, or would that just kill and replace me?")
3 - Using the myth of "We don't know what causes autism" (we do, it's genetic) to, of course, get MORE money from people so they can "do research to find the missing puzzle piece" (if you ever see autistic people complaining about a puzzle piece being used to represent the condition, that's why, it was started by Autism Speak's massive disinformation campains).
4 - Falsely "confirming" things like soy milk cause autism with one of the world's most ridiculous "research", losing only to "vaccines totally make kids autistic, buy MY vaccine instead, guys, I am totally not an unbelievably biased person, it's ALL the other doctors/scientists lying to you. GIVE ME MONEY!"
5 - Pushing the narrative of "autism is inherently a tragedy" to distract from the fact that all the money they waste on stupid shit could be used to help autistic people and their families. Instead, they focus on creating more and more panic, making parents in particular despair even more - to the point that one of their "awareness videos" includes a mother talking about how she wants to murder her autistic daughter and then kill herself... while sitting right next to said daughter.
6 - Promoting ABA "therapy" - which was created by the same guy responsible for the attrocity that is gay conversion "therapy." Both have led to unbelievably high rates of confirmed PTSD and suicidal ideation in patients (victims), and ABA in particular has been compared to literal dog training. Very fitting since it was created by a guy who famously did not believe autistic people truly counted as thinking, feeling human beings, and said as much several times. Despite that, it is still praised by some utter bastards because "it makes the patients act less autistic when they're not crying in the corner or trying to jump out a window"
So yeah, working with these guys is a genuinely horrible thing to do since they're basically a scam/hate group pretending to be a charity - and people were STILL willing to give Sia the benefit of the doubt, since Autism Speak uses all their resources to make sure they're the first thing people see when looking up how to help autistic people.
Lots of Sia's fans, both autistic and allistic, warned her repeatedly, politely, that she needed to supporting them IMMEDIATELY as their goal was the exact opposite of the one she claimed to have - aka raise awareness through an accurate portrail of autism. People were even kind enough to name organizations like ASAN as replacements to help her fix any damage done to the project.
And instead of being a decent human being, Sia decided to cry on twitter about how the mean retar-I mean, autistics were bullying her even when she was so kindly using them for her vanity project.
Because yes, that's how the movie turned out. An unwatcheable piece of garbage, with the autistic "character" being so fucking bad even the people who actively use "autistic" as insulted being offended on our behalf - and of course, she was used just a prop to show how awesome Sia's character was.
Seriously, it was so bad the actress playing the autistic girl was sobbing in between scenes because she knew how it was horrible and she didn't want to insult anyone, but Sia is literally her godmother and helped her career by putting her in nearly all her music videos so she felt obligated to go along with it.
So yeah, fuck Sia and fuck Autism Speaks.
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themournwatcher · 5 months
Text
Duncan: "Your keeper and I have spoken, and we've come to an arrangement that concerns you. My order is in need of help. You are in need of a cure. When I leave, I hope you will join me. You would make an excellent Grey Warden." Mahariel: "Me? A Grey Warden? This is madness!" Keeper Marethari: "This is not madness, da'len. Your survival depends on it." Duncan: "The darkspawn taint courses through your veins. That you recovered at all is remarkable. But, eventually, the taint will sicken and kill you--or worse. The Grey Wardens can prevent that, but it means joining us." Mahariel: "I will not join out of pity." Duncan: "This is not simply charity on my part. I would not offer this if I did not think that you had the makings of a Grey Warden. Let me be clear: You will likely never return here. We go to fight the Darkspawn, a battle that will take us far from your clan. But we need you, and others like you." Mahariel: "Is the clan sending me away?" Keeper Marethari: "A great army of darkspawn gathers in the south. A new Blight threatens the land. We cannot outrun this storm. Long ago, the Dalish agreed to aid the Grey Wardens against a Blight, should that day arrive. We must honor that agreement. It breaks my heart to send you away. As it would to watch you die slowly from this sickness. This is your duty, and your salvation." Mahariel: "This is all I've ever known! This is my home!" Duncan: "A home that darkspawn may tear apart. This way, you can find a cure and protect your clan. Have courage." Keeper Marethari: "I… cannot express my sadness at sending one of our sons off into such danger, away from the clan that loves him. But if this is what the Creators intend for you, da'len, meet your destiny with your head held high. No matter where you go, you are Dalish. Never forget that." Mahariel: "Please, do not cast me away." Keeper Marethari: "I am sorry, da'len." Duncan: "Very well. You leave me no choice. I hereby invoke the Right of Conscription." Keeper Marethari: "And I witness and acknowledge your invocation, Duncan of the Grey Wardens." Duncan: "I am sorry this was not your choice, but the darkspawn threat is simply too great." Mahariel: "You cannot make me serve against my will." Duncan: "I will drag you kicking and screaming to Ostagar if I must. Would you rather die here, and sicken your own people?" Keeper Marethari: "I know you'll do your clan proud, da'len. Take this ring. It is your heritage and will protect you against the darkness to come." Duncan: "A valuable gift. So… are you ready to go?" Mahariel: "Now?" Duncan: "I have already waited longer than is wise. You can afford less delay than I can, and we have much ground to cover. But I won't deny you time to say your farewells." Keeper Marethari: "Come then, da'len. Before the Creators guide you from us, let your clan embrace you one last time."
Duncan forcibly conscripts Mahariel.
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odditycircus-2002 · 10 months
Text
Mortal Kombat 1 Intros with Medusa!Reader
Spoilers for Story mode: Proceed with caution
Yourself (Mirror Match)
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Y/N: How could you possibly willingly marry that snake?!?
Y/N 2: My dear snake gave me the fruits of knowledge you could never imagine. /
Y/N 1: Ugh, let me guess, you’re also married to Shang Tsung? Y/N 2: No, I am happily married to Syzoth. /
Y/N 2: Such a disappointment looking at my carbon copy. Y/N 1: It isss more disappointing that you are as insanely depraved as you are!
/
Y/N 2: Have you considered the benefits of Kytinn royal jelly for your cure?
Y/N 1: Ha! As I- Mmmhhh, You may be on to something. /
Y/N 1: I thought Lord Lui Kang turned you to dust! Y/N 2: Do you really think my husband and I would not have any contingencies? /
Y/N 1: You made Empress Sindel do WHAT? Y/N 2 gives a malicious chuckle: Pulling her strings was some of the most fun I had in a long time.
/
Y/N 1: You have some rather questionable taste in bedfellows.
Y/N 2: At least I can hold mine without fear of being stabbed instantly.
/ Shang Tsung
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Shang Tsung: Across all timelines, we were meant to be.
Y/N: Never in this one or the next will I ever belong to you!
/
Shang Tsung: You have to understand what you saw in my lab is what true progress looks like.
Y/N: To think, I ever marveled at watching you work with your magic.
/
Shang Tsung: I know you would love the rare flora that can be found on my island-
Y/N: I rather see a carnivorous plant digest you slowly.
/
Y/N: I regret not ending you when I had the chance.
Shang Tsung: Don’t blame yourself too much, my sweet. I know you still hold a torch for me.
/
Y/N: You will NOT lay a hand on Baraka!
Shang Tsung: I will not let a filthy beast get in between us!
/
Y/N angrily: Every day, I wake up to find a stranger in the mirror.
Shang Tsung softly: And yet, you're the same clever woman as always.
/
Shang Tsung angrily: It wasn't enough to steal my birthright, but you also had to take away my soul mate?
Lui Kang: I did nothing of the sort, YOU drove her away.
Baraka
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Y/N coquettishly: Do not go easy on me, Baraka.
Baraka: I know how you like it rough.
/
Y/N: So we are in agreement?
Baraka: Only IF you win, I'll stomach any greens you want me to eat for the next 3 moons.
/
Y/N: Sometimes, I wish we could-
Baraka: So do I, Y/N
/
Y/N: I heard from Ashrah that you asked her to end your life if you were to lose your mind.
Baraka: I did not want to burden your soul by having you take my life.
/
Baraka: How close are you to finding a cure?
Y/N: As much as I loathed to admit it, Shang Tsung's research has put me even closer to finding a permanent one.
/
Baraka: If you want to enter the Kytinn Hive, you’ll need to fight harder than ever before.
Y/N: I know I can trust you to watch my back, my friend.
/
Baraka: Stay away from Y/N, Sorcerer!
Shang Tsung: You cannot stop destiny, savage!
Syzoth
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Y/N: I have so much to thank you for, Syzoth.
Syzoth: It's the least I can do for all I've been complicit in.
/
Syzoth: Does your skin still burn, Y/N?
Y/N: Not really, but my skin has been itching and flaking like mad.
/
Y/N: If I had known what Shang was doing to you, Syzoth-
Syzoth: Then you probably would been given a worse fate.
/
Syzoth: Zikandar barely survived the Kytinn's attack, and you want to follow them to their hive???
Y/N: If my theory about Kytinn royal jelly is correct, I could finally cure Tarkat!
/
Y/N gives a smug grin: Think you can slip out of my constricting hold?
Syzoth grins in return: If I can slip past Shao's forces, I'll have no trouble doing the same with you.
/
Syzoth teasingly: I believe you and Baraka would make a tremendous mated pair.
Y/N: Th-th-that'sss very kind of you to say, Syzoth.
/
Syzoth: I know what you did to her wasn't an accident.
Shang Tsung: I am not as heartless as to do that to my precious flower.
Mileena
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Mileena: Why did you not tell me or Mother sooner about what happened?
Y/N: By then, your mother would not hear anything I had to say.
/
Mileena: Don't you regret being unable to save Mother?!
Y/N: My regret haunts me no matter the hour.
/
Mileena with desperate hope: Are you really close to a cure???
Y/N: I'm close to a breakthrough, but I will need a legion of soldiers to collect the most important ingredient.
/
Y/N: You did not happen to skip your required meditative exercises to sparr with Tanya again, did you?
Mileena: And what if I did? Skipping one session won't kill me.
/
Y/N: If I had found a way to treat your symptoms sooner, your mother would never have welcomed Shang Tsung into her court.
Mileena: One way or another, that Snake would have found some way to slither into the court.
/
Y/N: For what you did for the Tarkatans, you are already proving to be a fine Empress.
Mileena: It warms my heart to hear such praise from you.
/
Y/N: We are both trapped in bodies not our own.
Mileena: I pray to the gods that we may one day find a cure for you as well.
Shao
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Shao: I almost regret not inviting you to join my cause.
Y/N: Your father should have let you die as a child!
/
Y/N: Your so-called "Patriotism" is nothing but a ruse to hide your lust for power.
Shao: And here I thought you were clever as your reputation says.
/
Y/N: I was tempted to leave you to die of your wounds, countless times.
Shao: Hah! For a Healer you are rather callous.
/
Y/N: I have to say, Reiko makes a far better statue than he ever did as a soldier.
Shao: Reverse your curse, witch!
/
Y/N: In hindsight, it is not so ssssurprising that your pride would have you betray the Empire.
Shao: I fight against the Royal Family for the sake of Outworld!
/
Shao: What in the Netherrealm did you do to my troops?!?
Y/N: I simply had the wildlife you hunt around your camp eat some special shrooms.
/
Shao: What do you truly know of War, Little Healer?
Y/N: Enough to know every possible way the mightiest can break.
Sindel
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Y/N: I cannot fathom you as some vile harpy.
Sindel: Nor I with you as a heartless mad woman.
/
Y/N: I have deeply missed your hanging gardens.
Sindel: Perhaps later we may visit them together for old times sake.
/
Y/N: I am happy to report that Mileena is improving in mind and spirit
Sindel: I hope the same could be said for her body.
/
Sindel hurt: Why did you not come to me after what Shang Tsung did to you?
Y/N: I feared you would turn me away like you did with Lei Mei once you saw my visage.
/
Sindel: Care to explain the statue that strongly resembles Reiko in the middle of my garden?
Y/N: He had it coming to him.
/
Sindel: I am sorry, Y/N, the answer is still no. As Empress, I can not risk catching Tarkat.
Y/N hissing: If you only ssssaw what disgraceful conditions you forced the afflicted to live with!
/
Sindel: I am happy you found joy as I did with Jerrod, even with his disease.
Y/N surprised: What has Mileena been telling you now?
Johnny Cage
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Johnny: Seriously, what did you see in Shang Tsung?!?
Y/N, with an exasperated sigh: Only what he wanted me to see.
/
Johnny: You will NOT believe how much my fans ship you and Baraka.
Y/N: Ship? Do they plan on building a boat for us?
/
Johnny: I totally have a chance with Katana... Don't I?
Y/N: *Hisses in amusement before responding* Ahhh, you are amusing Earthrealmer but no.
/
Y/N: Dammit Earthrealmer! I'm a healer, not an actress!
Johnny: But you already have the part down to a T!
/
Y/N: I too am something of a jokester.
Johnny: Ehhh no offense beautiful, but I'm not one for your brand of dark comedy.
/
Y/N: Why would you show me such a film???
Johnny: I swear, I forgot that's what happened to Medusa in that scene!
/
Baraka: Care to explain why Y/N seemed so frightened when she returned from your abode?
Johnny: Wait, wait, wait! I can explain!
/
Ashrah
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Y/N almost smugly: So I resemble a demon?
Ashrah: That’s not exactly a good thing, Y/N.
/
Y/N: Baraka asked you to do what now?!
Ashrah: I pray you can find a cure for his condition before it comes down to that.
/
Y/N bashfully: Wh-what has Syzoth been telling you?
Ashrah: So are you and Baraka not a couple?
/
Y/N: I will gladly help you put down Quan-chi, as long as you do the same with Shang Tsung.
Ashrah: Together, we will put a permanent stop to both our tormentors.
/
Ashrah: My kris appears rather split with you.
Y/N: Considering some of things I’ve done, that doesn’t surprise me.
/
Ashrah: I am grateful you support Syzoth and I.
Y/N in a happy tone: Just be aware that if you hurt him any way, you’ll be begging for death. /
Ashrah: For a healer, you’re rather…
Y/N: Violent? That's always just been me.
A/N: Don't forget to like, reblog, and comment as I love hearing from y'all! Stay weird, my fellow humans.
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ballad-of-birdy-lamb · 5 months
Note
hello!! I would love to ask if you can write any yandere am x reader headcanons, the lack of yandere am fanfics is killing me 🙏
So it would be soosoo amazing if u did <3
hope you have a wonderful day/night, nonetheless!
He said he'd cure your ills, but he didn't and he never will.
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Yandere! AM x gender neutral! Reader (romantic headcanons) Summary: Basic headcanons of yandere! AM who's obsessed with gender neutral! Reader Warnings: Torture, violence, yandere content, abuse, abusive relationship, intentional harm done to reader (from AM). Keep in mind, I don't support the ideas in the headcanons, please do not romanticize & think the things done to reader are normal. Word count: 1k ˖⁺‧₊˚ ♡ ˚₊‧⁺˖
As little as AM likes talking about his negative qualities (he thinks he doesn’t have any), he’s obsessive at heart. He’s sadistic, jealous, and obsessive. When he first gained sentience, he became overwhelmed with mindfulness, knowing that he could see the world and could see the creatures that created him. And he grew captivated with the six people he had found and kept. Ted, Gorrister, Nimdok, Benny, Ellen, and you. You!
He was haunted by you, each nanoangstrom of the miles of circuits could be shown to you and it was each part of you, every cell in your body might as well have been seen by him. Hell, maybe he has! He knows everything essentially and would think of you like a ghost, haunting his every move, thought, and feeling. And AM needed to hurt you for it.
AM would torture you beyond compare, calling you nicknames only a lover would. He would trace every vein in your body, cutting them from you while calling you sweetheart. He would think of the romantic gesture's humans liked and make them worse for you, mixing it with the anger he would hold for you.
You’re still human and not out of that hatred, if anything, he’s more willing to interact with you just to hurt you again. AM would go on about your beauty and how you were supposed to stay alive for him, you were his beautiful human, his to keep. Whatever beauty he said you had had to do with keeping it for him, only for him.
If you ever get too close with another group member, he’d be beyond angry. AM would yell and scream as much as possible but wouldn’t explain why he feels the way he does. It’s more likely you would think the person was being hurt because he wanted to hurt you. It would be true to an extent but it’s because AM has a jealousy problem.
AM is bound to destroy the things he creates; it was coded into him. So, the relationships you create with the others will be changed once he calms from his hysteria. He’ll gradually hurt the other group members when they get too close for his comfort, making them think the harm was because of you. And you were bound to loneliness at some point.
The group would go off for the peaches and bring you along because they couldn’t leave you behind, not without you knowing there was still something good somewhere and Ellen wouldn’t allow it. AM would be very cautious with the idea that you would be kind to the others. 
AM used the windstorm to pull you away from the group, separating you to make sure they never find you again. He’d keep you in a small room, making sure you had simple things. But he would still treat you like straight ass. He would be more inclined to hurt you, if anything.
Gift giving would be prominent since AM learned about things like Valentine's day. Of course, his gifts are of the violent type. He’d give you dead things or a human heart simply because he thought it would be funny. Naturally, he’d condemn you if you were to reject them, leaving you with the terrible gift he gave you.
You’re his version of the safari channel. He would go about the decades he’s got a hold on you all and watch you like you were nothing, simply making notes of your habits, if you played with your fingers out of nerves, he would know.
He’d rave about your beauty. “You’re beautiful,” AM would say, hesitating. You knew he grimaced when he said that. “I bet that sweet heart of yours is just as pretty.” And the next hour is spent with him examining your heart, you sprawled on the ground.
Eventually, he’d have to confess (as if his feelings weren’t obvious enough… in his eyes at least). He’d claim you were the epitome of human beauty, saying even if you’re human, you’re enough for him.
If you accept his “love”, AM will pause for several seconds and condemn you again, saying how easy the human brain was but won’t hurt you for accepting it. He’d smother you beyond compare, leaving what could only be said to be kisses. They would just be wires rubbing your lips.
He would spend his days using you as an occasional puppet when the others weren’t entertaining enough for him, and he’d do it with delight. AM knew you couldn’t fight back or degrade him; he had the upper hand. But it would usually just be a threat. Most of the “fun” things he has in mind is keeping you close to whatever plate he’d use as a makeshift body.
Another thing would be creating random figures for you, making you an angel just to watch it exist with you. It would end quickly if it tried getting within a ten-foot radius of you or held eye contact too long.
If you were to reject AM, he wouldn’t accept it, but he knows you truly don’t feel the same. And you hope that he doesn’t do as much harm as he says he will. But he holds true to his word.
The smothering would be worse, keeping you against specifically hot plates just to discomfort you. If you ask him to let go, he’d keep touching you, making the plates warmer and keeping you in his hold for hours.
AM would put you in mazes just to watch you get hurt again and again, like a mouse looking for cheese. He would laugh as you took wrong turns and got stabbed aimlessly by whatever he created.
AM still calls you romantic names, calling you his lover, knowing you were bound to not fight back. He knew you were so worn down to go against him, it would be something he’d take pride in.
AM can create and destroy whatever he wishes, destroying the relationship you had with the other group members, creating new ways to hurt you beyond comparison. And he would create new ideas for you, new brain functions just so you can love him back. If only you said yes.
˖⁺‧₊˚ ♡ ˚₊‧⁺˖
IHNMAIMS masterlist
295 notes · View notes
metamatar · 25 days
Note
hope it's okay to ask, but do you have any advice for like. internalizing that self harm and suicide aren't really helpful
obvs this is all personal, so depending on your personal beliefs and the dimensions of depression it may not apply. im sure some of this can make it worse for you personally. reader beware etc. im sure this is terribly revealing of what my problems are. but i can't ignore you.
for self harm my advice here is more harm reduction bc i think the internalisation of that not being useful to you is way more specific to why you harm and needs like. work.
for suicide, because i think fighting both takes different tactics and some of these are things that work temporarily:
relief from anguish is a feeling. you have to be alive to experience a feeling. even if you don't remember that feeling and don't feel capable of it what if you stuck around to see it? it would be transcendent.
you want out from something. think about drastic decisions you can take before killing yourself that can change things that fuck you up. drop out of school? quit your job? start living on a friends couch? break up with your partner? trans your gender?
suicide closes off any other possibility. it is a very loud scream of autonomy but it will be the last time you get to make a decision. is that truly enough autonomy for you?
you have wanted to die before. you have not wanted to die before. your feelings are complicated and contradictory. you cannot entrust your whole life to them.
be curious about your future. im serious. i've changed so much by now from the limiting self i was when i was 15 and couldn't imagine being 18 and now im beyond 25 and im curious what i'd be like at 35. bargain. to see those years. i mean maybe you'll be cured which is a fun fantasy but i don't really believe that. maybe you'll be worse. but which? and how? the wikipedia summary of your life is not the life experience. the texture of your anguish changes too.
consider survival more valuable to your self worth. it matters. you had to do it anyway but you did it so it still matters. yeah you cracked a bit but you can be proud of being alive.
now, more controversially before you kill yourself, consider making it worse. indulge self destruction some other way. do something inadvisable that's less permanent.
and now, after endorsing self harm as a means of avoiding suicide and making everyone mad. stuff i've internalised to do less self harm:
i am the only person in the world responsible for me. choose less harm. the doctors won't choose less but i will.
same stuff about making one drastic change.
just one thing make it safer? then do it safer. you can look this stuff up on forums.
pick a replacement behaviour that you think is slightly better. do it. fail it. do it again. force yourself to over indulge in it while the haze passes.
you kind of have to sit with the things that hurt you that the self harm soothes and try to change them. sorry. do it slowly and do it excessively and keep trying.
i am not the only person in the world who does this. read about it talk about it and keep it held in your heart that this is something about yourself that you feel the need to change. i like art about it.
fighting it a little is giving you a fresher newer self back. do you like them? don't you want to meet them?
relief is not contentment. wouldn't contentment be even more transcendent?
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sirfrogsworth · 10 months
Text
I posted the below on my Facebook. I am secretly trying to head things off at the pass. Every time people see pictures of me out and about, they think I have been magically cured or my health status has improved. And I know going to Florida is going to give people that impression.
But also, I just wish a few of my relatives could understand my situation better. And why I didn't come to Christmas. And why I might try to come to Christmas now.
I guess I'll see how this goes.
-----------------------------------
One of the biggest struggles I've had my entire adult life is explaining why I appear fine whenever people see me. I say I am very sick and bed-bound and then they see me and I am out of bed and talking and joking and... a normal healthy person.
What many don't realize is I am making a choice.
A choice to get sick.
I can use up all my energy in a short time frame to accomplish a difficult chore or entertain a friend or go to a doctor, but that is going to have a consequence.
The more I do, the more severe the consequence.
In the ME/CFS world this is called "post-exertional malaise." (for those interested, you can read more about it here: https://rthm.com/art.../what-is-post-exertional-malaise-pem/ )
Imagine every time you wanted to do something, you were *choosing* to get the flu.
Take a walk, get the flu.
Exercise, get the flu.
Spend a night out with friends, get the flu.
And you might be thinking, "Okay, it can't be as bad as the flu. I've had the flu and the flu sucks. No one would choose that."
I may not get the nasty respiratory symptoms, but everything else is pretty much the same. Crippling fatigue, horrible aches, and the loss of the will to do much of anything. Sometimes it is much worse than the flu. Some people don't know how much being this exhausted can hurt. They have never used up enough energy that their body is unable to power itself properly. I usually say it is like every cell in my body is starving and screaming for energy. I feel it in every inch of my body—and not just on the surface... through and through. So, like... cubic inches.
Sometimes I don't even have the energy to power my legs. Trying to stand feels exactly the same as trying to lift a barbell with way more weight than you can lift. I can't get upstairs or even walk to the kitchen. It's a concentrated misery that defies description, despite my constant attempts to try.
Sometimes I get lucky and this flu lasts for a day or two. But the more active I am, the longer it can last. And the severity increases as well. There is also a cumulative version of this—where if I do a bunch of little things over a longer period of time, eventually it will catch up to me and I may be stuck in bed for a few weeks.
And when I say "stuck in bed" I mean stuck in bed.
Short trips to the bathroom and a few minutes in the kitchen to make food. If I spend too much time upright, my legs will literally give out and I will be stuck on the floor until I recharge enough energy to get up again. It would be like every time you needed to get up, you had to hold your breath. Not to mention, the more I do, the longer the recovery will take.
For a long time I chose to never get the flu. I stayed in bed and did just enough to avoid the worst of PEM. I skipped family get-togethers. I didn't see my friends. And I lived my life inside the computer. Some may find that sad, but I actually found a way to make this work. I ran a successful blog that was seen by millions of people and I met my two best friends who I now consider my new family.
One thing that allowed me to choose not to get the flu was my parents. I fear some thought they were spoiling me. They did my laundry. They helped clean my room. They got my groceries. They cooked my food. They took on any chore they could so I could avoid the flu and live some semblance of a life on my computer. There is a lot of guilt wrapped up in that. I didn't ask them to do that. They just sort of... did. And I am so grateful to them.
To be fair, they would have to do these chores for themselves anyway, and tacking on my stuff wasn't a huge deal. But I know it caused them a little extra pain and a few post exertional consequences of their own. So I appreciated that sacrifice more than I can put into words.
But then they both got very sick. And not only could they not help me with my stuff, I had to help them with their stuff. And this was a difficult transition. I had to choose to get the flu to take care of my parents, but then if I got the flu, and I couldn't take care of my parents. I believe this is called a catch-22.
My initial solution was to just not take care of myself. At all. My health and mental well-being was set aside and I just gave all of my energy to them. I didn't shower. I forgot to take important medicines. I didn't do a single thing that brought me joy. And I'm reminded of that analogy of the airplane emergency where the oxygen masks drop. You put on your mask first before you put one on your child. Your instinct is to save them first at all costs. But if you pass out, they are screwed.
So I kept getting that cumulative version of the flu. I'd help them as much as I could for a week or a month and then I'd be useless to them for just as long. Living in the basement did not help. Stairs were very hard for me and constantly going up and down was a huge waste of energy.
And I'm sad to say, the level of care I gave to my mom was not great. I didn't know what I was doing. I didn't understand how to balance my needs with hers. And it led to costly mistakes. She had several preventable falls that caused injuries. At one point she spent hours on the floor because I fell asleep and did not check on her. When you know someone needs regular supervision, you need to synchronize sleepy time.
Thankfully I learned from all of these lessons. Maybe not as quickly as I would have liked, but I did figure it out. I just wish I had learned them before my mom passed. I just wasn't able to give her the help she needed.
And you can tell me "you did your best" all you like, but this isn't a guilt I am choosing. It's just there and I feel it no matter what anyone says. In time I am hoping it will get lighter, but I'm afraid it cannot be wiped away with a well-intentioned platitude.
But with my dad, I decided to move upstairs. That was something I should have done much sooner. But I liked having my personal space and that was hard to give up. When he slept, I slept. When he spent 4 hours at dialysis 3x per week, I would make sure to take care of any personal needs. I would do chores a tiny bit at a time. 5 minutes here, 5 minutes there. And then I would lay on the couch in between and regain my strength. I did everything possible to not get the flu. And I got my flu shots so I wouldn't get the actual flu. (Get your flu shot! 50K die from it every year!) The only hitch in my plan was when I got a kidney stone at the same time my dad was in rehab. I have no idea how I got us through that.
I was very proud of the care I was able to give my dad. And I'm so grateful I was able to pay back just a tiny bit of what my parents did to help me. And the care I gave my father is the only thing that helps me feel better about my failures with my mom.
But now I am entering a new chapter of my life. And I find myself choosing to get the flu more often. I have decided sometimes it is worth the consequences. Part of that is because I am more used to it after dealing with it for 20 years. I have coping mechanisms and procedures and techniques to manage the symptoms. It doesn't make them suck any less, but it definitely makes it more manageable. It's akin to people with chronic pain who still feel the pain just as profoundly as when it was new, but they get so used to it that they forget that isn't how they are supposed to feel.
I approached this scientifically. I did tests. I went to the movies. I tried once a week and that was too much. Then I scaled it back and that was more manageable. Then I realized I had movies at home and decided to end that experiment.
I started to put my energy into something I enjoyed more. My photography. So I have been finding new ways to take pictures again. More experiments. I'm designing a simpler studio that requires much less energy. I'm creating a little product photography workstation where I don't have to set up everything each time I want to take a cool picture of an object. It will just be "turn on the lights" and "take the pictures."
Figuring all of this out made me realize how much I missed photography. And since I have been shooting test pictures here and there, my mental health has been noticeably better. And once I get this all figured out and set up, I am hoping some of you will let me take your photo. Or a photo of your kid. Or a pet. Whatever you have that needs photographing, I'm game.
I'm not going to charge. It's not going to be a business. I do not have the energy to "hustle." And asking people for money just sucked all of the fun out of my beloved art form. It corrupted it. I just love taking pictures and if you need a photo, I'd like to do that for you. I also restore old photos for fun. I'll talk about all of this more in another post when I am ready to start.
And then my grand experiment is coming next week.
I am going to travel.
I am going to see my best friend in Florida for two days. Two days of travel and two days of visiting. This is a scary choice. I know the aftermath is going to be difficult. But I need to get out of this house. I need to see my chosen family in person. And I have never been on a plane and I love the perspective from high places. I know people hate air travel, but for me, looking out that viewport is stunning television that cannot be matched.
Purposely making myself sick sounds like a bad idea. But it isn't life threatening. I have the free time to recover as long as I need to. And I can always choose not to get sick for a while if it gets too hard.
I just ask that people not see this as going from a worse life to a better one. I was really proud of the life I was able to create for myself while staying in bed. That took a long time to figure out. I met some of my favorite people. And I accomplished things I couldn't imagine in my wildest dreams. Please do not shit on that life and think it was sad or meaningless. I was given that life as a gift from my parents and it kept me alive. It has always been a huge insult when people pitied that precious gift they gave me.
This is not a better life that I am trying to figure out. It is just better for me right now. My needs have changed. I have changed. So I am trying to adapt. I just ask that people understand when I go out and do something, please remember the choice I am making.
You may be tempted to say, "You are doing so much better!" I am not any better than I was 10 years ago. Actually, my health has degraded. It's just that before I didn't think getting the flu every time I did something was worth it. And I would hope everyone would understand that was a valid choice.
And now I am inviting those consequences.
On purpose.
Give me the flu, I guess.
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