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We looked inside some of the posts by bruca-pain and here's what we found interesting.
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there’s this extremely kind soul of a woman on instagram that makes accessible recipes that don’t require standing, chopping, or a stove and she might just have a permanent place in my heart
#oh not being able to cook as I used to is one of my greatest pains#I used to sell complex party cakes I started selling bread on the teacher's room then starting making yeast and different ones before#it became rich people's hobby and obsession and ingredients got more expensive#but ugh I just. cook for people and for me. it's something I love doing. that my friends know me by.#so many of my friendships were born from invading people's homes when they're sick or depressed and cooking for them ughh#but I will try this to reconquer some identity and dignity. hopefully I get better once this trigeminal neuralgia treatment starts working#or they send me to surgery (always with the risk of ending paraplegic). but it will also be great knowing them to teach them to actually#disabled friends or more permanently impaired by chronic illness who've made comments on wishing they could cook like me/themselves#tho I hate how expensive kitchens adapted for wheelchairs are. like one of my friends just doesn't have the option before he's paraplegic#from birth and his family is poor adapting the bathroom was a debt which he unfortunate overheard once. hate it.#never seen anything like this in portugese either but I'll check. in spanish something similar but not portuguese. could message her if I#really like the recipes
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hospitalised again speaking of pretending to be healthy BUT they're bringing me ketamin straight to my bed feeling like a rich lady
#pro: free drugs from licit means#cons: shared room with two women who are delightful but keep asking me why I'm alone where's my family#it got better after two friends visited me on the weekend so yaay friendship and found families of gay people#the elder one asked me if my crush and coloured friendship is my girlfriend 😭
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I really don't think a lot of abled and low support needs disabled people realize how many of us rely on the kindness of others to stay alive. Imagine if your entire survival and existence was pinned to being likeable enough.
#my family abandoned me once I got diagnosed with trigeminal neuralgia because they saw it as a kid who forever generate expenses and need to#be taken care of instead of working reliably and taking care of them once they are elders who need high support#I had a month to leave while still having convulsions and survived only because of a very kind friend who took me in.#and even with a rare serious condition I don't really know the suffering of a disability especially high support#it takes drugs occasionally puts me on the hospital but I can pretend to be functional and independent#and it's annoying how a lot of my disbled friends say I understand more from the diseases and times I almost died#but 7 months of the year I realy on a cane and on the rest don't have much strength so I can be a ear a cook or bridge but not much else#the people who can help the most physically speaking are typically the hardest to reach#sometimes even when they have a disabled relative because it's the 'lne disabled person takes too much'#sure capitalism is bad for anyone questionable families like mine are bad for anyone#but navigating those with a high support disability? nearly impossible#all the relevant information is so hidden too. common sense will scream there's no support and the first professionals you see will repeat#that even when it's not true#it's all horrible. so many people denied human emotions like anger at these very unjust systems#because they have to remain likable for survival. or at least feel they do and it's too much of a risk to test it
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PSA if you are a wheelchair user with a partner who pushes your chair sometimes, you NEED to make out with your partner sloppy style in public so that people know ur together. If you dont do this your partner will be mistaken as your support worker for the rest of your life. Able bodied ppl actually cannot fathom wheelchair users and disabled people being in LOVE so you really need to wave it in their face
#ableists morons do this with a couple of friends of mine because she's a little person and he's abled.#she's older than him they have a son I've never met someone with dwarfism who walked around with a caretaker...#but is always the LP date LP not abled ones#as a result they either do this or WILL show pictures of their kids as they should
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like this pain is just so stupid why does my own facial hair cause me pain why is cutting it open the best thing to ease this pain long term
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I need to remind more abled people:
"You have NEVER been in the amount of pain i am in on a daily basis."
Maybe then they'll fucking understand
#having a child just to compare it to trigeminal neuralgia#(horrible joke I'm literally infertile but also would never do that to a child for moral reasons)#I did go into sepsis because of endo once it was VERY painful I used to call it the worse pain I ever experienced until I started having#the pain from trigeminal about a year ago. they might even be close but trigeminal feels so much worse precisely because of what you said#I had been walking with the infection for at least three months according to doctors but sepsis itself was a fast thing#but sepsis itself was a two/kinda three day things only because the hospital couldn't schedule my surgery fsster. I got treatment#immediately and since I lost two organs and was sent to intensive care they had no problems giving me morphine for five days straight#because even if I spent a month at the hospital. I got better and haven't had an infection like that again#for a very similar perhaps even more intense pain that are the trigeminal crisis/convulsions I'm being 'treated' with dipiron.#because god forbid I get addicted to pain medication..you can't use it long term right? so I have to get used to this since I'll have it#for the rest of my life and it'll only get worse considering cases in 20.years olds are rare I have time to degenerate more yaay#only to say completely endorse and agree with your comment about severe acute vs chronic pain#schedule me another 12 hours surgery with two blood transfusions but not this stupid nerve forever#have had chronic pain for 13 years now and it's just. you think you won't be shcoked by how much doctors make it clear they hate you but#you keep discovering new lows of medical professionals. the amount of rheumatologists I've seen who whined to my face they#'didnt study rheumatology to only see stupid fibromyalgia cases I wanted to see rare complex diseases'#(but also there's no real treatment for fibromyalgia just exercise and think positively! I don't care you've been falling on the streets#constantly because your leg muscles fail you or you have horrible dizziness that makes it impossible to walk!)#also when they twist an ankle and keep joking 'I get how you feel constant pain is awful!'#you are experiencing mild to moderate ACUTE pain not severe chronic one
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Tbh I think calling the act of pushing yourself to your absolute limits and severely flaring up for days on end just to be perceived as “normal” or “capable” by yourself or others only to do it again and again knowing it will hurt and do incredible damage if not IRREPARABLE damage just so you can try to prove something that can’t be proven because you live with disabilities and symptoms that you refuse to acknowledge as simply “overdoing it” takes away that it’s truly just self harm imo
Like you’re just hurting yourself. That’s self harm.
#in my case it literally involves at least a vrry large consumption of alcohol (and some opiates)#and literal doctors keep telling me I should drink because at least I keep my pain/convulsions under control am able to eat talk and walk#and therefore I can maintain a job.#it's mainly the neurologists over trigeminal neuralgia and reumatologists over fibro/chronic pain.#but it's so weird. once an anesthesiologist told me he 'loves what alcohol does for me'#I wouldn't stop drinking just because doctors told me so being hospitalised over it was horrible but still#so strange to encourage a woman who became an alcoholic at 12 and drinks 3 bottles of liquor a week because you don't know how and don't#even want to treat her chronic pain
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Hey everyone, remember that being sick or healing from injuries is a hard time for your body. You have to eat a lot and lay still and be kind to yourself! [large neon sign that says HYPOCRITE descends from the ceiling and points at me] Hey what the heck what's this who put that there
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Absolutely wild to me how sometimes you don't even realize the way you'd been taught to perceive things as a kid was kinda fucked up, actually, until decades later.
Example:
As a kid, I constantly lived in fear of damaging shit in my parent's house. The walls. The floors (especially the floors. The wood was beautiful. Shiny. But so easy to scratch). The cabinets.
As a sixteen-year-old, I once took my car to the dealership after work and paid a very dear sum of $250 ($10/hr cashier salary) to fix a slight scratch in the paint because I knew if my father saw it there would be hell to pay. It didn't matter that I parked far out, like I'd been taught, and someone scratched it anyway. It was my fault. I failed in my duties as a steward of my vehicle.
Every time I scratched a rim on a curb while parallel parking or got a door ding or, god forbid, didn't wash and vacuum that car every weekend, it was treated like some sort of moral failing.
Last year, when my husband and I first moved into our house, he scraped the side of our car when parking in our (Very Narrow) garage. When he told me, my first instinct was to be afraid for him. Like something terrible was going to happen to him because of this mistake. I urgently reassured him that it was okay, it was an accident, I wasn't mad. Baffled, he was like, "Yeah? I know? Like, thank you for the reassurance, but I'm only a little annoyed, I'm not upset. It's just a car." And I had to take several minutes to process that. It's...just a car.
We keep the car tidy. We maintain it. But we wash it maybe 4x a year. We only vacuum it after dirty road trips or when the dog hair starts to get annoying. It has scrapes and dings and the leather seats have stains. But that's ok. Because it's just a car.
This morning, I realized that a small rock had gotten embedded in the felt foot on one of our bar stools. Neither of us had noticed. There are now scratches on our beautiful hardwood floor. My immediate response was fear accompanied by a heavy measure of paralyzing guilt. "I'm so sorry," I told my husband, "I should have noticed. I'll figure out how to fix it, I swear. I can probably sand down that section and match the stain and--"
"Whoa, hey," he said. "It was an accident. And it's fine. Floors are going to get damaged. They're floors. We live here. There was damage in places before we even bought the house, remember? It's not a big deal. It's just a floor." Right. It's just a floor. Right.
My husband's mom is visiting and this afternoon, as I was sitting in the kitchen looking at the scratches on the floor, I offhandedly asked her if my husband had ever broken or damaged anything as a kid. "Of course," she said. Household items. A TV. A wrecked car during his teen years. I asked how she punished him.
"Why would I punish him for things like that?" she said. "They were all accidents."
Right. Of course. Right.
#me with the can't make noice rule and literally no opinion until you're bringing money to the house one (that was 13 for me) ❤️#you all could answer phocalls? watch tv? BRING FRIENDS OVER? crazy
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EMPLOYED WOMAN FOR THE SECOND SEMESTER!!!
#well only in afternoons I can still get a second job for the mornings but better than nothing I can truly look at places to live now#life's better
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a lot of physically disabled people end up with health anxiety. and it's not unfounded - though all health anxieties should be treated with respect. the fact of the matter is, even if we have a diagnosis or a pretty significant issue that one would think couldn't be missed, that doesn't mean that we're fully diagnosed and recieving proper treatment. i have yet to meet a physically disabled person who hasn't faced medical neglect. and more often than not, doctors dismiss our symptoms or don't put the effort in to understand what we mean when we try to describe them. it's like trying to navigate a maze in a dark. physically disabled people often have multiple issues and it's not like we have the tools to be able to tell which symptoms are related or unrelated. what's relevant to explain. or what symptom we've gotten so used to as background noise would actually explain this entire mess. we're also usually the person for whomst the entire burden of instigating any sort of investigation or treatment falls upon. if we have an issue we have to do so much work to try and get it seen to, and a lot of the times going through the process of battling the healthcare system still leaves you with no answers or treatment. like of course this sort of environment inspires anxiety. of course we end up getting overwhelmed, or feeling like we don't even know where to start. that's why i don't really buy into the notion that there's just diagnosed or undiagnosed disabled people. i think almost all of us go through this process, and even if someone is fully diagnosed and recieving treatment, any new or unexplained symptom starts the ball rolling all over again, and you feel like you're back at square one, sitting in a dr's office where the people there barely give a shit about you and struggling under weight of everything all at once. and then trying to formulate that into a sentence that people will listen to. god
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Went to do the juridical process so my parents are blocked from macking medical decisions on me and then this lawyer hit me with "is this only about medication and procedures or does it apply to life threatening risk?" and I did have to think since I have no one else to assign with my sister giving up on me and I've already almost died at the hospital twice. my mom was there. but I'm not actually grateful and certain they were the best either. I hesitated more from the complicated paperwork than prefering them to literal complete strangers medical team. and that's sad isn't it.
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anyway re: that previous reblog the idea that jacking off once a day to unwind after work is an addiction is so upsetting. like we're for real for real just calling anything that helps people feel even a little bit good an addiction now. my morning yoga practice is an addiction by this metric. we're living in a time where people are alarmingly distrustful of even very small pleasures.
#words that belong to gringos but are being forgotten by them: habits. routines. likes & dislikes. aversion & affinity. set of values.#but woah once a day specific days of the week masturbation is now porn addiction to this site too? death to us insomniac women uh#'it's because pleasure has been so stigmatized' far from me to excuse Protestantism's role in the horrific state of things#but you gotta admit some of it is just the vile urge of healthy people to incorporate language specific to certain mental health disorders#and their symptoms and characteristics to describe their completely normal human range of emotions and behaviours#OCD has always been used as a joke and descriptor of being organised or particular about cleaning and such#but recently it seems more specific vocabulary to OCD and similar conditions has broken containment only to be used in this same way#gaslight gatekeep girlboss!#and I have my fucktons of problems with the medicine and psych clinic#because it's more often than not further traumatising patients and working on oppression#but still. I'm no idiot or denialist. I'm an addict. I've done dumb shit for alcohol and other drugs and it has had devastating consequence#for my life and relationships. the guy who masturbates after works loses... 30 to 60 minutes of his life to feel better?#say it's not intentional all you like but it just feels mocking as an actual drunk to hear addiction throw like this#people overuse the word addiction as a metaphor/exaggeration because they find it funny. then lose track of the 'joke' in the middle of it
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eu quero morrer eu quero viver me quiero a matar me quiero vivir killing myself living with myself
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fuck it joining a remote support group for trigeminal neuralgia in my country and my uni's chronic pain group
#I love my friends but I miss having friends who get it.#it's sad that like obviously some I just stop taking to or even fought with but multiple of my past disabled/chronically ill friends are...#dead#by the conditions by suicide by stupid accidents#used to know this girl who was my fibro buddy except she was always stronger and nicer than me. but she's gone. and I'm still here.#I think this a big part of why I hate hospitals because I've cheated death at least four times and I don't get why.#if I can't be strong enough to give back and do something meaningful with my life#WOOO depression hours have a very early class to teach can't drink as much as I want to
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On one hand I admire the people who make peace with no longer being able to work as expected and still see value in themselves and find alternative ways to live it's such strength I hope I get there one day
On the other no I don't I'd rather do heroin right until I kill myself because pretending I don't have these disorders has become impossible but I WILL work and I WILL go out
#I haven't actually tried heroin yet I'm on progressively worse and more substances#but also I'll be damned if I die before tasting heroin all logic dictates I would love it and BET I can fuck some old man for it#I've lived this life before I know the places they looove giving the first shots ''free''#I didn't like morphine tho that one never made sense for me#I liked fent I LOVE oxy. but not morphine. picky lady#but honestly with fent I was on the high of how rare it is to get it here#new dream to not kill myself: I could still taste every depressor that exists#writing reviews here.#I know opium isn't a depressor but it is to me you sleep so nice
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