#ehler danlos confessions | Explore Tumblr Posts and Blogs

moth-feeet · 10 months

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i never talk about this but i’m feeling especially sad about it cause i’m on my period so i’m gonna rant to you all!

i have several physical disabilities and recently my neurologist presented the possibility of seizures being the culprit causing my fainting spells. i took the last year of school (10th/sophomore) off and resting and healing, so i left public school and started online. obviously that sucked cause i didn’t get to see my tc who for now i’ll call W. it was hard, he is one of the greatest people i’ve ever known and after a year in his class we became close so i continued to email him throughout my past school year away.

this year the plan was to return to school, i would be at a private religious school (im not religious but it is just one of the better schools in my area) and i would most likely be placed back into W’s class given how small of a school it is.

that whole plan might be thrown out the window. my mother is considering the idea of “home bound” it’s a government thing that is free schooling where a teacher would come to my home three days a week to teach. i, under no circumstance, would be able to work along side W ever again. which is devastating.

in all honesty i hated school, i was bullied, i was severely su!cid!al, and it worsened my health, leaving last year was a great idea. but i’ve been entirely alone most days all year, given my family works and i do not. i don’t have a car or license and if i have a seizure disorder i never will. again devastating.

basically this is all to say i won’t get to see W, he and i used to have what he called our “book club” every lunch. he’d sit at his desk and id usually pull a chair near his desk and he’d read while we ate. he read me great gatsby, he read a few nonfiction books, he read poetry, he read so many beautiful books and i would sit and listen and it was truly the most amazing experience i’ve had at a school.

i want to go back and be in his class and see my friends, but i also hated the school, the nurse and several teachers tried to force me into confessing i was lying and never passed out and was just trying to leave school. i had many fainting spells, migraines, i have ehlers danlos syndrome (eds), so on multiple occasions i had dislocated joints in pe. but through all the awful shit that school put me through, W was there.

he would have days in class where he’d put on an educational film, he taught geography and history so usually something along those lines, and we’d all lay on the soft carpet in his room and he’d sit down on the floor with us.

he was so sweet and always so worried about me, i’d come in and he’d ask if i was dizzy or felt bad and always let me lay in the couch in his room if i wasn’t feeling well.

he was such a safe place. and now i might never been in his class again.

ig all i’m saying is it sucks losing my life to stupid shit like my disabilities. i was so happy at the idea of seeing W every day again and now i’m not sure i’ll be able to leave my home again.

it all sucks.

#female hysteria #tc confessions #tc community #ehlers danlos awareness #disabled

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miguel-manbemel · 8 months

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I've been in the Thomas Sanders fandom for almost nine years now. That means I was there way before Sanders Sides, and that at this point I'll remain following him way after Sanders Sides is over. That doesn't make me better or worse than anyone else, but I think that that gives me a little bit of right to speak my opinion, and I'm gonna do it, because I've been holding it back for far too long when I've seen so much bullshit all around, especially on Tumblr, and I can't help it anymore. I need to speak and I'm gonna speak, no matter who likes what I say and no matter who's bothered by what I say.

Sanders Sides started in October 2016, but it didn't get truly big until 2017. And 2017 was "Fander year", it was the year Thomas was most prolific and released the highest amount of work: the bulk of season 1 and a big chunk of season 2 of Sanders Sides, and to that we have to add the first episode of Cartoon Therapy, the last few Vines before it was shut down and a production of shorts comparable of his big years on Vine, and to that we add the vlogs, the music, his big projects like Bizardvaark, etc. And back then at the beginning it was Thomas alone, Joan and Talyn joined around February, March, and it was only the three of them the rest of the year and part of 2018. They worked their asses off for these months, to the point that all the three of them with no exception ended up getting sick. Joan even had to go through hospital and Talyn was eventually forced to retire altogether because of the complications stress caused in his Ehlers-Danlos Syndrome. Not to mention that Thomas and the others spent literal sleepless nights editing Sanders Sides, the record being 36 consecutive hours of editing without sleep so that he could release a Sanders Sides episode faster (I think it was Why Do We Get Out of Bed in the Morning). I don't know if some people here know it, but Thomas has confessed to be a little bit workaholic, and we all know he's a perfectionist in his work, he will only release what he considers is the best for him when it's ready, nothing more nothing less.

There's people that, sure, have praised Thomas beyond what is considered healthy and that have been assholes with other people who had constructive criticisms (and not all criticism has been constructive), but certainly, specially on Tumblr, there's people who don't know the meaning of the word "fair judgment" and vent all their personal frustrations onto Thomas like he was responsible of all evils in the world. If excessive positivity is toxic, excessive negativity is toxic too, and also damaging, not to mention potencially a crime of libel if they go too far and start damaging his reputation and good name with lies. I'm still seeing people talking about the animator thing like they know first person what happened, saying happily that Thomas "didn't pay the animators", like it was something true and a fact. The animators did not even get to a unified unique conclusion about anything. Some of the animators got mad and left the fandom immediately, others stayed to literally bitch around and criticize (and some caused more harm in the process than anything they were accusing Thomas and team of doing)... while other animators remain in good terms with Thomas and still follow him with the same passion, and also there are animators that called out other animators for their toxicity while the work was in progress. It's time to set things clear: the animators were paid what they signed in their contracts, they said that and they recognized that without exception. It was their own responsibility to read such contracts and investigate the internet and what is considered a good amount of payment, they should have done that beforehand and not sign if they didn't agree, because once they signed, they're bound and they have no right to complain because they agreed to that salary and it looked okay for them before signing, otherwise they wouldn't have, that's something even some animators said. So please, stop using that to spread hatred on Thomas. Not even the whole bunch of the animators supports you on this, and clearly if you weren't there you have no word to say. Officially, a portion of the animators spoke to the team, and ammended things privately, that was what was published and that is where it should have ended five years ago. So the rest of the world should just shut up about it. This is not and should not be treated as a reality show because it has nothing public at all. This is something private between the animators and the team, and third persons should not use it as an excuse to spread hoaxes and hatred against the team. Stop it already and mind your own business.

That was one thing I wanted to let out, but the other thing is about the people complaining, and complaining, and complaining about how they don't get the content THEY want faster. I'm talking about those who think Thomas should do Sanders Sides and nothing else, because "it's what Patrons pay for", "it's his biggest source of income", "blah, blah, blah"... I am a Patron, and I know what I signed for when I joined Patron: "more content, more frequently", nowhere in that sentence it is mentioned it would be Sanders Sides only, or even mainly and if anyone read that it's something they assumed on their own, not the reality and certainly not binding. We've gone through a drought of content because there was a pandemic, in case anyone didn't notice. But he's releasing more content now, in all platforms, so he's commiting to his promise about Patreon. My money is well spent and I won't let anyone say otherwise. Please, kindly refrain to speak in my name as a Patron, thank you. If any other feels differently and is on Patreon, he's always free to unsubscribe when he wants, but don't repeat the lie that you "subscribed because he promised more Sanders Sides more frequently", because that's literally a falsehood. And speaking about Patreon and the "writer's tier", I don't know what you think the writer's room is about. The team only gives the writer light suggestions about what jokes could work well or things that could be featured specifically as ideas for the script, they don't get any power of decission in the plot and they don't even get to know the plot at all because the questions are vague. Don't give so much importance to the writer's room, because i's nothing of the other world, despite some people trying to make it a bigger issue than it is, usually people who are not even in the writer's room and therefore don't know what they're talking about, as usual. About the "Sanders Sides being his biggest source of income and therefore, he should stick to that"... well, sorry to break it to you, but have you been around his TikTok recently? He has recently released a Storytime short and a Misleading Compliment short, and the audience went literally crazy, and the new sketch videos are working like charm. Sanders Sides might be a huge success of his, but his short videos (the 10 seconds long and the 4 minutes long) are, and will always be, his biggest source of fame, they've always been since Vine. Remember, he has 10 million followers on TikTok, almost triple his YouTube follower count. And from these 10 million followers, not so many even know what Sanders Sides is because they didn't follow him on YouTube. You have to deal with the fact that Thomas could cancel Sanders Sides today, and he'd still have a very decent lifelihood thanks to the short videos. He makes Sanders Sides because he wants to and because it's a personal project of his. It's you who's in desperate need of Sanders Sides, not him, stop projecting.

Where am I going with this? It is okay to dislike Thomas, no one forces you to like him, and it's okay if his type of humor is not for you anymore. But you are not the center of the universe. There are still millions of people who enjoy what he makes whatever it is, and Thomas is not there to give you the content you want all the time like a video-making-machine. He's not going back to 2017-2018 when he literally destroyed his health with too much work. I know a lot of Fanders joined the fandom at that time, got used to that rythm of releases and miss it, but that time is not coming back, because above else, Thomas and his team are human beings, not slaves at your service and their mental an physical health is more important than your need for entertainment. If you can't accept that, you should seriously consider moving forward to other forms of entertainment that are more of your liking. And moving forward means moving forward completely, not going back and forth publishing insulting or condescending posts against Thomas and his team that are not gonna help you get content faster. Just because you are an "addict" to Sanders Sides (if you were just "invested", you wouldn't get to some extents I've seen some people get to) and didn't get served your daily dose of hyperfixation, that gives you no right to bitch around against the creators. It's your responsiblity to look for your own sources of entertainment wherever you can find them, but you have no right to demand anyone to make anything for you, because this is internet, not an a la carte restaurant. You have plenty of content created by hundreds of content creators anywhere, just choose it and consume it. But don't forget it's content creators who decide what, where and when they create anything, not the audience. The right of the audience is to like whatever or not, to follow whoever or not. It's not your business how he runs his business or his working schedules, because that's private. You only have a right to consume the final product, not to control every step of the production, and it's time some people start remembering this and pump the brakes with their attitude.

#thomas sanders #sanders sides

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gon-and-killuas-mother · 11 months

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i am attempting "light therapy" to help fix my sleep schedule and i'm cranky about it

my aunt, who's a neuropsychiatrist (one of the few women in her field and fairly well known at this point, don't know if anyone's heard of Dr. Jo Cara Pendergrass but damn she's cool) was in town this week to look after her mom post-cataract surgery

Cara is probably the smartest person in the family, all things considered

(my brother and I give her a run for her money but neither of us intend on getting a goddamn PhD lol) (also my dad wouldn't appreciate me saying that, he is also pretty smart. but like. he's got intelligence, he's just lacking in wisdom)

ANYWAY. of all the people in the family, Cara is the person i rarely have to explain my illnesses to. usually, i have to tack on a brief description of it anytime i say "yeah i have EDS and fibromyalgia and IBS and--"

but last time i saw her over Christmas, i told her the diagnosis and had my script prepared to explain, but she just went "Oh yeah Ehlers Danlos -- wait. Oh."

her face did the thing where she was processing new info at light speed by blinking and cycling through several expressions as the pieces of the mystery that is my chronic ailments settled themselves in place

unfortunately i wasn't at the point where i was comfortable enough to tell anyone how miserable and in pain i was, that was something i put off another couple of months before i confessed to Nana that i'd become a grocery thief and was on my way to being homeless. that's also around when my brother asked my permission to share my story with the family, because he knows how difficult it is for me to admit how much i'm struggling.

i'm rambling tbh but only to keep me awake and sitting outside long enough

ANYWAY

so Cara was here this week. i went to visit the other night. we always have really interesting conversations about our brains and genes and family shite, i don't think anyone other than my brother and i can actually hold a conversation with her about that kind of shit.

i did NOT go there just for advice, but when i told her how much trouble i've had getting out of bed before evening, she gave me a couple of tips that i'm now trying out

1). the 24-hour sleep deprivation strategy

it sounds like a nightmare to me, but apparently has supporting evidence that, at least in the short term, resets your circadian rhythm.

if you've ended up awake hours past your desired bedtime, then instead of simply going to bed late, it's advised* to keep yourself awake throughout the rest of the day until the next bedtime.

( * WITH CONSULTATION OR SUPERVISION OF A DOCTOR)

the reason this is supposedly effective is that the longer you stay awake, the higher the sleep pressure becomes (sleep pressure is just your body's signal to go the fuck to bed, which is something i'm intimately familiar with as it's a constant companion of mine regardless of sleep hygiene). the higher the sleep pressure the easier it is to fall asleep and, ideally, the better your sleep becomes.

Cara did emphasize that as far as we know, it's only a short term strategy. either we haven't done enough studies or we haven't figured out how to apply it to a longer term solution.

2). Light therapy

i was already somewhat aware of this but not to the extent that Cara explained.

the trick here is to force yourself out of bed (if you're able) and sit outside. preferably on sunny days. she said this even works if you end up falling asleep outside anyway, you're still absorbing sunlight.

there's no immediate change, as it does take a few days or more to notice any improvements (this checks out, as i am still drowsy as fuck) but doing this daily or semi-daily gradually convinces the body and brain to be awake earlier.

it's one of those things that a lot of disabled folk like me, especially those with fucked up sleep, would hear and get annoyed with, because we've tried so many different strategies that have each failed one way or another. and hearing "go outside" just reminds me of my mother and every yoga enthusiast insisting on all natural medicine, which understandably raises my metaphorical hackles.

but Cara, again, is the smartest person i know. i'm much more willing to take the advice of a neuropsychiatrist over a yoga mom, despite them actually agreeing on something.

and also? i do miss the Sun, quite terribly.

so if, by sometime next week, i'm magically able to wake up earlier with less struggle, i will let y'all know. i'm gonna be cranky about it, especially if it actually WORKS, but as the neighborhood mascot of Sleep Deprivation i think i'm a pretty good indicator if something like this is legit or not.

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#tink rambles #trying to resist going back for a nap #been sitting out here an hour though so thats something #unfortunately i dont get any direct sunlight bc my apartment is north facing and the roof extends past the balcony #maybe if i can hobble down to the pool next week i can do some sunbathing #but only if i can find my sunscreen lol i burn exactly like my irish ancestors on sunny days

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goldendoodlerlockerlove · 6 months

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Tell us more about Gene and Alexis! Gush to your heart's content!

Pom!! You're too sweet, really, letting me gush like this 🥺. Now that you asked me this, that reminded me that I have the next few panels of my comic done, and should be posting them either tonight or tomorrow! :D

I've already posted a bunch about it, but yes, I took on the feat of making a (sort of) long-form Bob's Burgers comic immediately after I finished my first shorter one. That was definitely inspired by @bluebirbbs and their lovely comic, which everyone should go read if they haven't already because it's fantastic.

I mentioned the comic because it's all about Gene and Alexis. Alexis is my OC who's around Gene's age. They moved to Seymour's Bay and started going to Wagstaff around the time the My Butt Has A Fever short happened and were incredibly nervous about meeting new people and having to adjust to living in a new, seaside town. They're kind of insecure and immediately thought people would find them awkward and not like them. Then, they saw Tina, Gene, and Louise performing that song, and all of their worries melted away. They somehow immediately realized that Gene was the one who wrote the song and was blown away. I headcanon that they couldn't stop gushing about it on the drive home with their parents and even beyond that.

Their parents are quite nice and have done a decent job raising Alexis, but they aren't exactly supportive of people in the LGBTQ+ community, which Alexis is definitely a part of. Alexis figured out around a year or so before the events of the comic that they're Nonbinary (and go by They/He pronouns), and also Androsexual. However, they generally just call themselves Gay because that's easier for people to understand. But, around their parents, they (sort of) pretend to be completely Cishet for fear of judgment or worse. Oh, and they were also born without a right foot (which they have a super realistic prosthetic for) and they have Ehlers-Danlos syndrome. They generally only use a crutch for it, and sometimes, not even that. There are a few occasions when they have to use a wheelchair, but they hate using it because they like being more independent. They later confide this all to Gene, who actually thinks it's super cool, which is something they've never had anyone say about their disabilities before. I suppose this sort of parallels my Linda is deaf AU by having a person with a disability's partner be super sweet and supportive.

Anyway, Alexis is so captivated and moved by Gene's performance that they very quickly fall in love with Gene. They freak out for a bit but don't say anything, because they don't know who to ask for advice. Then they decide that the best course of action is to get their feelings for Gene outward anonymously. This poor soul mistakenly thought that by sending sweet anonymous notes to Gene their feelings would somehow disappear. Of course, that doesn't happen.

But, fortunately for them, Gene eventually begins gaining feelings for Alexis too. This is because once they start hanging out and becoming friends, Gene discovers that they have a lot in common, such as loving the same movies, foods, and fashion. Thrifting and making clothes is actually one of Alexis' hobbies, and Gene adores it. He can't get enough of seeing Alexis' clothes that they made themselves. Then they begin talking about how stupid they think masculine gender roles are, and Gene begins confiding in Alexis on how sometimes he wonders if he's being a boy wrong because he usually doesn't enjoy traditionally masculine things.

The two continue bonding and eventually go on a small ice cream date, a la Tina and Jimmy Jr.'s date to Fro-Yo Mama in What A (April) Fool Believes. I didn't realize the parallel at first when I decided this would happen, but now I'm completely obsessed with it.

I'm not sure yet, but it might be on this little ice cream date that these two finally confess their feelings for each other and start dating officially. However, Alexis is kind of terrified of dating Gene, just because of how their parents would react. So, they keep it a secret from their parents. Gene doesn't have to worry, though, because Bob and Linda are nothing except enthusiastic about it.

Surprisingly, Bob is actually super invested in their relationship, and gets kind of emotional, knowing that his little boy is growing up and falling in love 🥲 And is like "Soooooo, who is Alexis? 👀😏" just like when Gene started dating Courtney, and he was like "Soooooo, who is Courtney? 👀😏"

Oh yes, and this entire comic is supposed to take place during Valentine's Day, too, and Tina has a little thing throughout where she's really hoping for a Valentine from Jimmy Jr. I kind of want to resolve that later by having him give her something other than a Valentine, like a goofy little dance, as per Zeke's suggestion, which I thought would be pretty cute and would feed @drawthethingdoppelganger's Tinimmy loving soul accordingly 😌

Louise's thing throughout the comic isn't too deep, but I kind of like it too. She's just angry that Mr. Frond gave the three of them detention for their song at the talent show and wants to lace his coffee to get out of it, pffffft. She isn't thinking that much about Valentine's Day and is convinced that Rudy is just going to ignore her again in favor of Chloe Barbash, so she's kind of given up on the holiday. But then he maybe gives her a sweet note or something 🥺 She pretends not to care, but she really, really does. That gesture means a lot to her.

I actually haven't thought about a Boblin subplot that could happen, because I'm not sure if they'll be too prominent in the comic? But I'm sure they'll be adorable as always for Valentine's Day. I already had them mention that Bob's taking Linda out for a fancy dinner, so I might have them talk about how much fun they had, like the cute lil' ancient married muppets they are.

But I'm getting sidetracked from Gene and Alexis. Anyway, they fall in love with each other and slowly become the most wholesome couple in the universe, second to Bob and Linda. They do all the cliché couple things like hold hands, give each other lil' cheek/forehead kisses, and share milkshakes. Gene definitely becomes one of those stereotypical straight guys who are always like: My wife 🥰 except he's always like: My partner 🥰 and takes every moment possible to gush about Alexis. And vice versa.

@dianadeadwing also made a glorious essay about why she thinks Gene and Peter Pescadero would work so well, and I think all the points she brought up apply to Gene and Alexis--two people who seem really different but have the same values at their core. Gene is loud and energetic just like Linda on the outside, but is really sweet and insecure on the inside, caring so much about the things he's passionate about, like music and his family. He actually gets offended when people try to fight battles for him because he really wants to be seen as more capable, as seen in Drumforgiven.

Alexis seems pretty quiet and unassuming on the outside, because of how awkward and shy they can be at first, especially when moving to a new town, but when one gets to know them, they get really passionate about the things they love too, like fashion and glass blowing (yes, they like glass blowing, which is such a random hobby, but it somehow seems really fitting). They and Gene really bond over their love of obscure movies, fashion, and not being traditionally masculine. And just like Gene, they're insecure on the inside and want to be seen as more capable, not wanting other people to fight battles for them. They also have a secret sarcastic streak a mile wide, and their silver tongue reminds Gene of Louise a ton. They don't exactly have a penchant for getting into trouble, but definitely for getting into mischief on occasion. They also definitely have a secret hopeless romantic side, like Tina, but really try to hide it because they're afraid of being judged for it. Gene doesn't judge them, though, of course.

But really, this moment is what truly started it all for Alexis falling for Gene:

Also, I'm resharing this adorable Commission I got of them from @carnivaldemon because it's actually my everything now:

I could probably go on for even longer, but I'll stop here~

Also, I swear this wasn't intentional, but I realized that Alexis' design looks just like my boyfriend Michael--

#asks #pom you can't keep being so sweet i'm going to get a cavity #i really wanted to give gene a new love interest and alexis just happened #and now they occupy my brain 110% of the time #these two together feel so baby to me i wanna squish their lil' prepubescent cheeks like an annoying grandma #i don't want to give away ALL of the plot details of my comic?? but i kind of relayed a lot just because that's my main source for them #i will be the super annoying captain and steer this ship myself if i have to

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horse-shit · 2 years

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did you guys know i was really out of it one time and tried writing the main 4 guys having a s/o who had ehlers danlos syndrome but i only got half of it done? dont think i can finish it, but if someone really wants to hear about dante and travis i can do my best {added zane instead {i should write for more of the characters like reese, lucinda, teony, sasha, or cadenza}}

anyway i mostly wrote this for myself but i guess i dont mind sharing it :)

garroth

he would do any and everything he could to help

if you needed her to help you pop something back into place, he'd get over his thing about bodies popping very quickly because she wants to make sure you're okay :)

if it's a no energy type of day, he's all for staying inside and watching shows or playing games and if it's a no spoon for interaction, she'll pop in and give you some food, ask if you're doing better, and leave

he's a very touchy person so expect her to constantly want to hold your hand

if you use a mobility aid, he's always trying to find the best ways to get around and not have a blocked path. she's also a big guy and could probably make a path just by walking somewhere, but she likes to walk next to you

if you ever make the 'my body is not a temple, its a parking lot with slushies being thrown like grenades' he always wants to pitch into the absurdity of the joke and giggle, there have been some great writing prompts from those

if you two go to the doctors and they don't believe you have eds, you might have to hold her back from getting in their face ^^;;

if it's a 'why was i given this dysfunctional body' day, he asks if she can hold you in a hug. and if it hurts to stand, he'll just spoon you and try her best to make you feel safe

when you first started dating, he went to go do research and found out about the zebra stuff. the next time she saw you he had a zebra plushie in hand

there's always a chair nearby in the kitchen so in case your legs give out he can just scoot it and {hopefully} catch you

she will get worried when you fall and say 'i couldn't have avoided that, i know how to fall so im okay!' he is intrigued and kinda wants to know how to do it but won't ask

if you need to go get medication and are busy or can't go, she likes to go and get it as a surprise every time

laurence

he likes to make zebra jokes-- not at your expense, rather just if they see something with the pattern he'll point and go 'hehe that’s you honey!' this also includes phantom bruises

if you don't have enough energy to cook, they're great at it and will whip up the I Feel Like Garbage {tm} meal

if you ever feel like thinking about the life without eds that could've happened and grieving, he wants to help with distractions but if you don't feel up to it, they understand and says he's always here and loves you no matter what

on your first date they noticed your balance was kinda off, and you confess to not wanting to bring your mobility aid and wanting to weird them out. he then extends their arm and says 'looks like i get to be a replacement for now!' with a smile

your scare prank for them was stretchy skin. you asked him to pinch and pull your arm back- the look on their face was priceless!

if you need a shower chair he finds one so fast

if you need help with dislocations, they ask many 'is this the right spot?' and 'is this enough pressure?' its so sweet

he likes to look into your eyes more because of the blue tint on your sclera. when they first did it he played it off as a joke but now they feel comfortable enough to do it without worrying if he's being creepy

when it's doctor time they want to be in the room to make sure the doctors competent enough to know what they're doing

if you're having a good day and don't take out your mobility aid and still park in the handicap spot, and someone decides to leave a condescending note, you'll have to hold him back before they storm back into the store to ask for something to be done

zane

if you need a weighted blanket he definitely has one

they still aren’t a big fan of hearing you pop your joints, but if you need to or you’ll cramp up/hurt he covers their ears and looks away

if given permission, he would lend you a couple stickers to put on your mobility aid :)

they cook really well, and love to ask for help when baking. he sets in a chair and hands you the mixing bowl, and you check on the sweets in the oven

if someone is being ableist towards either of you, making fun of zane’s lazy eye or insulting you, the other stands up for their partner and make sure to console them after

before you two started dating, you asked zane to push on your finger. they quickly brought his hand to their chest and shook it after seeing how far back it went

he definitely showed you a zecora episode of mlh when spending the day together

if the barometric pressure is so bad that it’s an intense pain day, zane will bring you food and ask to hold you or read a book to you, they want to make sure you’re okay

#imps bs #aphblr #aphmau #garroth ro'meave #laurence zvahl #what would this count as x reader?#mm #whatever #zane ro'meave

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joy-in-opera · 1 year

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Hh... can't sleep. Anxiety is being dumb. But also existential shit, and I kinda need to put it somewhere.

Many worst-case scenarios have run through my head. Losing family members being among the worse ones, etc... but of all things, I wonder if I could face speaking with old friends I use to talk to back in HS... my choir directors included.

They were both kind and helped push me toward music, a life-long passion of mine, and one that still burns bright. They gave me opportunities to develop my musical talents and I'm forever grateful for everything they did... but they don't know a lot of what has happened since I left HS. They don't know about my Ehler's Danlos Syndrome, and the various issues that it entails. They don't know that I'm in constant pain, and will be for the rest of my life... they don't know the extent of my anxiety, and how it has prevented me from seeking better jobs out there, or trying to push toward performance. ... and now that I'm trying to push toward being a music teacher myself, even with the help of a vocational rehabilitation program, I still find it very difficult to take the small steps toward sending in applications...

Would they understand that I fell short of my aspirations? Would they be disappointed? Would they feel like the effort they put in was wasted on me? I genuinely don't know, but I also understand that I'm thinking the worst of the what-ifs. I genuinely feel like a failure, like I'm floundering in whatever life wants to throw at me and my family next.

I'm the 2nd child, the eldest daughter, in a family of 7 kids and 2 parents. All of us have health problems in some way or another: my mother's EDS is worse than mine is, among a myriad of health issues, and she already owns a wheelchair she uses. My older brother has an autoimmune disease where he needs to be on medication for the rest of his life, and suffers from rheumatoid arthritis. My 1st younger brother was hit on his motorcycle back in 2020, royally fucking up his knee to the point he needed cadaver tendons; he is still dealing with the aftermath and all that entails physically, emotionally, mentally, and financially. My sisters have varying degrees of physical health problems and mental illnesses: depression, anxiety, one hit puberty too early, another needed surgery to fix her bowed legs, and all us sisters and my mother have Gastroparesis. My 2nd younger brother suffered with anxiety for so long that he went catatonic at one point and needs to be on medication for it, ontop of dealing with scoliosis developing that we need to keep an eye on. My father is among the luckier ones in this merry group of ours, but he's still been beat up in his own way. He's broken so many bones in his body and spine, that a medical professional was surprised he is still walking and working... not to mention having a heart issue as the cherry on top.

I want nothing more than to take care of my family... I want to take care of the people around me that I care about most. I don't want myself or them to have to want for anything, or cry in the middle of the night wondering how to pay for medication or procedures that will help improve their quality of life or just keep them alive. ... but I feel helpless. I can barely scrape by with the little I can do myself, and late at night like this, I want to give up. ... But I can't do that. I shouldn't do that. I have to keep pushing and going because there has to be better days ahead. There has to be days where the pain is more bearable, where the anxiety doesn't have a chokehold on my ability to move forward, where I can help my family and friends through their hardest times like they've helped me through mine.

... and yet, with all this being said, the thing that I'm most scared of in this moment in time, is confessing everything to people I know IRL? It's funny... you're crawling through the fire and the flames only to be scared by a little jumping spider in the grand scheme of things. It doesn't make sense, but y'know... anxiety doesn't make sense sometimes; or, most of the time. I've cracked jokes during traumatic experiences and kept a calm and level head, but then turn around to have a mental crisis over how the people I know/knew IRL would respond in light of... all of the everything. Maybe it's an easier thing to fret over, instead of everything else? I don't know.

I know the steps I want to take from here to keep moving forward. ... I'm scared, I have doubts and insecurities, at times I feel stuck or frozen... And goddammit I gotta figure out how to put away how much I care about what folks think.

But for now I'm still here, and I'm content with that. I don't plan on going anywhere, and I count that as a win.

#personal #venting #just needed to empty my head so i can sleep

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cheers-mdears · 2 years

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How to Live Laugh Love when you fucking hate that phrase (blackbonnet, ch 3)

Chapter 3: The Confession --In which introductions are made, Stede does “king shit” to quote my beta, and things get Serious for a moment

Fic summary:

Ed is dying for a change of pace when Blackbeard’s Bar and Grill and Other Delicacies and Delights gets a new neighbor: someone batshit crazy enough to open a fancy clothes store in a rundown neighborhood. Turns out there’s “a change of pace,” and then there’s whatever the fuck Stede Bonnet is, in the best possible way. (I put canon in a shredder and used it to paper mache a modern au with like twice the unintentional seduction and a fraction of the angst.)

This fic has (almost) everything

Fluff, fun, hurt/comfort, light angst, attempts at humor, romcom beats, Ed falling hard y'all

Unhinged Stede

Fancy clothes

Ed is Jewish and disabled! (semi-observant and hypermobile Ehlers-Danlos Syndrome, respectively)

Izzy faces a Consequence for being such a dick

Ed with nail polish, flowers, a cane, and a bath bomb!!

Come check it out on AO3 💖

Chapter 1 | Chapter 2 | Chapter 3

#our flag means death #ofmd fanfic #blackbonnet #gentlebeard #edward teach #disabled edward teach #jewish edward teach #blackstede #indrid talks #indrid writes

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eds-confessions · 4 years

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Ehler-Danlos PSA

Did you know cats and dogs can have EDS too?!???!?

I never knew and a person just shared a story on my page >.<

#ehlers danlos type 3 #ehlers danlos syndrome #ehlers danlos zebra #ehlers danlos problems #ehler danlos #ehler danlos confessions

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chronic-confessions · 4 years

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Confession #5, 404

i have ehlers-danlos syndrome and tbh when i'm telling someone about it (usually youth workers or teachers) n they ask what it is, i love watching the pure terror in their eyes as i describe that one time i dislocated my entire knee by doing my english homework, or that one time i had to stay home from school because my shoulder felt like it'd been demolished. like... it's a special brand of fun, having ppl b lowkey impressed by ur ability to be alive.

#chronic confessions #chronic community #chronic illness #spoonie #spoon theory #ehlers danlos syndrome #eds #spoonies in school #dislocated joint

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truly-tacenda · 5 years

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So, my leg’s muscles are atrophying and I still have no diagnosis. I’m losing everything. I can’t handle this.

#chronically ill #chronic illness #chronic fatigue #chronic pain #spoon confession #spoon theory #spoonie #pots syndrome #potsie #ehlers danlos syndrome #undiagnosed

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chronicallykatiescarlett · 5 years

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truth

i act like my disease doesn’t bother me, but on the inside i’m so afraid.

i’m afraid because all of my symptoms keep getting worse and no one knows why.

i’m afraid because i know more than the doctors, and i know virtually nothing.

i’m afraid because i have to work myself to death to afford to go to doctors who really don’t know what’s going on and who don’t lose any sleep at night over my condition.

i’m afraid because i don’t know when to come to peace with the sources of my anxiety and when to fight back.

i’m afraid because i don’t know what’s going to happen to me.

i’m afraid because i’m the one who always knows what to do, and now i don’t, and i have no one to go to because i’m at the top of the advice chain.

i’m tired of being afraid and i’m tired of being lonely. i’m tired of being sick and i would do anything to be normal. but i can’t tell anyone that, because if they knew it would break their hearts because they can’t help.

i’m tired of putting a fake smile on my face and pretending that i’m happy and i’m okay when i’m not.

but every day i’m going to get up and do my damndest to turn the world upside down and defy the odds, because that’s all i know how to do.

and so far, i seem to be doing a pretty good job. so let’s roll the dice some more, my friends. it can’t get much worse from here, can it?

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obeythedemons · 2 years

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Obey Me! Headcanon List

Obey Me! Masterlist

Headcanon Requests are: CLOSED

Rules

Italics = New, posted on July 23

Headcanons

All Brothers

MC is summoned to Devildom wearing a pride shirt

Young MC is Half Moth Demon - Platonic

MC summons them

MC uses a pet name for them

MC sees their ex

MC likes the brother back, but is worried they’ll disappoint them

Spotify Playlists + Barbatos

MC being bullies for being close to them

They receive a love letter from MC

MC has no survival instinct and talks to demons, wanders off, and asks all the questions

Pastel Goth FTM MC

MC is trying to become a demon to stay in Devildom

Blind MTF MC

MC has a low self-esteem

Parent MC

Short MC

Arguments He’s Started To Watch The World Burn

They react to Lucifer falling

MC is Ruri-Chan’s VA

Autistic!MC

They React to Mammon Crying

They find out MC can read their chats

MC’s Heart Does Something Weird

How he builds IKEA furniture

What Pajamas He Wears

(Un)dateables

MC thinks they don’t deserve affection

Goody-two-shoes MC is tough (+Satan and Asmodeus)

What Pajamas He Wears

Demons

MC is summoned to Devildom in laboratory PPE

MC is Injured

MC’s Attacked By Another Demon

What Crocs He Would Wear

MC Has An Allergic Reaction + Solomon

MC has a headache

Everyone

Dad Jokes

FTM MC

Idol!MC

MC’s D.D.D. gets a virus and sends flirty messages

Their Favorite Place in Tokyo

MC is in a gang

Supernatural MC

His Office

The Moment He Knew He Loved MC (minus Luke)

Tea Headcanons

When his heart first skipped a beat (minus Luke)

What He Tries To Hide (Minus Luke)

What Kid’s Movie Scares Him The Most

When the others know he loves them (minus Luke)

Gestures of Physical Affection (minus Luke)

What The Lesser Demons Say About Him

MC’s summoned to devildom with a plush of him (minus Luke)

When He Needs To Confess (minus Luke)

MC Has Ehlers-Danlos Syndrome

Their Mask

Pokemon AU

MC’s Sick

They Take MC to the Doctor

They Play Video Games (Roblox)

They Catch MC Singing Once Upon A Dream

How they show affection/react to MC showing affection (minus Luke)

How he takes notes

MC gets tired when they’re out (minus Luke)

MC Slips on Ice

MC Receives Their First Binder

Their New Year’s Resolution

MC Pulls Their Hair Back

How He Proposes (minus Luke)

He learns MC’s his soulmate (minus Luke)

MC’s heart races when they see him (minus Luke)

Hanakotoba - His Flower

MC’s standing in the rain

He has a nightmare about MC (minus Luke)

MC hugs him for the first time

He Dances with MC (minus Luke)

Someone Else Confesses

Diavolo Plays Matchmaker (minus Luke)

What They Daydream About (minus Luke)

Before MC: What They Think About Valentine’s Day

What He Gets MC For Valentine’s Day

His Ideal Valentine’s Day Date - Headcanons (minus Luke)

How Fast He Falls In Love, How Fast He Admits It - Headcanons (minus Luke)

He Asks MC To Become Immortal (minus Luke)

MC’s Cold (minus Luke)

He Sees MC In Wedding Wear (minus Luke)

MC Puts His Cold Hands On Him (Minus Luke)

Someone Sends Him A Nude By Mistake (Minus Luke) - 18+

Cheering Him Up (Minus Luke)

How He Plays The Sims

What Videos MC Posts of Him

Who Gives the Best Massages

MC’s Immortality is Wrong (Minus Luke)

His Favorite Form of Transportation

What He’s Insecure About (Minus Luke)

Lucifer

Helping Lucifer

Mammon

He learns he's MC's first kiss

Leviathan

Levi finds MC's anime body pillow

Barbatos

SO uncomfortable with being served/being treated well

Surprising him with a tea party

He makes MC their favorite meal after a hard day

What he wants for his birthday

MC’s good with rats, among other rodents

Gender fluid!Barbatos

Trickster Barbatos

Other

They comfort MC after a horror movie - Mammon, Leviathan, Satan, Diavolo, Solomon

MC falls asleep on their shoulder - Satan, Asmodeus, Diavolo, Barbatos, Luke

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helpmequitmydayjob · 7 years

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Spoonie confession

It's bad tonight. Like, I would gladly take my life if I could return as a cat in my next life. A cat without crippling joint pain. That kind of night.

#painsomnia #insomnia #spoonie #spoonie confessions #chronic pain #chronic illness #chronic fatigue #invisible illness #ehlers danlos syndrome #joint pain #everything hurts and i'm dying #i can't sleep #I'm so tired #why is this my life #i can't take it #cats have better lives #i want to be a cat

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wildshapedruid · 4 years

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Hello distinguished guests! I'm gonna go ahead and get right into it.

I'm a queer trans man and I need top surgery! My already poor mental health has been in a steady decline for years, helped partially by dysphoria. I must confess I've even been consistently suicidal due to my inability to afford top surgery. I'm a genetic hotbed of chronic illness (rheumatoid arthritis, asthma, ehlers-danlos syndrome, hypothyroidism) and I'm unable to work more than 24 hours a week at my minimum wage job. Binding is also becoming a hazard because all the tissues in my body are extra weak, so I'm starting to deal with constant chest pain and heart troubles, and am no longer able to do the physical activity required to keep my joints strong.

Im hoping to raise $8,000 for top surgery so I can finally live a normal life where I'm able to get dressed without breaking down. Every bit helps, even just a dollar!

most importantly, please share if youre unable to donate. Maybe someone who can will see it!

#me #trans #trans man #transgender #gay #lgbt #crowdfunding #top surgery #chronic illness #chronic fatigue #chronic pain #eds #ehlers danlos syndrome #arthritis #rheumatoid arthritis

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cookinguptales · 4 years

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Today, SCOTUS is hearing arguments about whether businesses should have to cover birth control for their employees in their health insurance plans and I just. It’s hard to read.

I was going to make up this big informational persuasive post about the situation. But I’m just. I’m just so sad and angry and tired. So I figured I’d make an emotional one instead.

Let me tell you about my hormonal birth control journey.

(Rest under a cut for length and content. cw: mental illness, graphic discussion of medical issues, injuries, & menstruation, discussions of suicide & self-harm, discussion of opioids, alcohol, & recreational drug use.)

I started taking hormonal birth control late in high school to help regulate “painful periods”. It wasn’t for actual birth control at that point and I hadn’t been diagnosed with any disease, not even POTS yet. I just had “painful periods”.

Things were okay for a little while, but when I got to college, things started to fall apart. The double whammy of undiagnosed mental illness and a barely-diagnosed chronic illness (POTS was relatively unknown at the time and my doctors gave me information which I now know is incorrect) really caused me to spiral during my first year of college. I didn’t know it yet, but I react very poorly to some forms of hormonal birth control. Put succinctly, they drive me batshit insane. On one pill, I literally did not leave my apartment for over a month. I became very literally agoraphobic. Bouncing off the walls, irritable, angry, high suicidal ideation. As bad as side effects can be.

But I didn’t know that yet. I just stopped taking BC as part of the whirlwind of medicines and doctors that my life became for about two years while I was on my (first) medical leave from college.

My ribs were coming out back then. I didn’t know that yet, either. I knew that when I was around 16, I started getting severe back pains. The first time it happened, I had to go to the ER because I couldn’t breathe and my teachers thought I was having a heart attack. I got a narcotic shot in my butt. It did nothing to dull the pain. That’s how much it hurt. But it went away on its own eventually and I over the years I started medicating reoccurrences with a lot of different things. Physical therapy. Muscle relaxers. (Medically prescribed) opiates that made me puke. Prescription strength Advil. Wine.

I didn’t see that it was all connected yet. Not yet. I didn’t realize, with my periods as irregular as they were, that the back pains were coming around the same time in my cycle each time.

My “painful periods” got worse. I talked to an OBGYN, with my mother in the room. I told her that I was scared of something like childbirth. I knew that my blood flow was dangerously bad. What if the fetus didn’t get enough blood? Oh, my doctor laughed, that wasn’t a problem. The fetus would always get enough blood. The risk was that I wouldn’t. That it, like the tiny vampire it was, would take it all until I simply died. If I got pregnant, I would likely die. I asked about permanent sterilization. My mother cried. My doctor said no. I didn’t ask again.

I went back on birth control.

It was odd. I didn’t want children before that visit, not really. I was so tired all the time. I knew I’d never be able to manage to raise a child — and honestly, I didn’t care to try. I was so depressed. I was so sick. It sounded like so much work. I still don’t want to have kids. But it still feels… weird, knowing that I can’t. And knowing that I could die if I get knocked up.

I’m bisexual, but I have zero sexual contact with men (because I don’t love them, despite being somewhat sexually attracted to them) and zero sexual contact with people with penises (because they could literally kill me and it would be no one’s fault). But I’ve been followed home by men before. I’ve had cabbies lock me in and ask me for a date. I’ve had men who won’t take no for an answer. And my god, it terrifies me that I might have to deal with both sexual assault and a slowly creeping murder all at once.

(It’s laughable to think he’d be tried for both.)

I ended up getting sick off birth control a few times. I went on and off it periodically during my college career. I now in retrospect see that a lot of my “meltdowns” were a combination of discrimination-based stress, physical breakdowns, and hormonal whirlwinds. At my worst times, I was on birth control. The wrong ones.

My periods, over time, got worse. My back would hurt. The cramps were unbelievable. I couldn’t feel my legs. I could feel them too much. I couldn’t keep food down. I’d be so angry, so sad, so everything.

I went to the doctor again. I was diagnosed with both endometriosis and PMDD. PMDD, or premenstrual dysphoria disorder, is like PMS on steroids. I remember telling my doctor, in halting tones, that I wasn’t well before my periods. That I always had depression, always had anxiety, but I wasn’t well before periods. At her prodding, I confessed that sometimes I would just lie there for hours, for days, in the fetal position. That I’d clutch at my own arms, mooring myself, because I knew that those white knuckles were the only thing between me and killing myself. That my brain, always somewhat malevolent, became an inescapable mantra of death. That I’d just lie there and sob because it took everything I had not to hurt myself. That I’d find claw marks, bruises, on my arms later, and all I could do was get some ice.

It was better than the alternative.

I told my doctor about how painful my periods had always been. How I’d heard a story once about, y’know, that Spartan boy? The one who hid a fox kit under his shirt during an examination and stayed perfectly silent even as it clawed at him so he wouldn’t be caught with it? How it tore at his stomach until he fell down dead, still silent? I told her how I felt like I was holding a fox kit every damn month and sometimes I couldn’t stand the pain of it. Sometimes I considered ending that pain, one way or another.

She put me back on birth control.

A little less than a year later, or in layman’s terms, about a year ago, my mental health was so bad again that I was almost committed. Literally committed. I had to go stay with my parents for a few months while I transitioned to new medications because it wasn’t safe for me to be alone. I learned that the birth control I was on could create those symptoms — but they didn’t start until months after you’d started taking it. So you didn’t realize it was the medicine. You just assumed you were crazy and unlikable and so, so angry. At the world, at your loved ones, but mostly at yourself.

I learned, around that time, that I also had Ehlers-Danlos syndrome. That the pain I felt every month right before my period wasn’t just cramps. It was my bones coming undone from their sockets. It was my hips dislocating. It was my ribs popping out of my spine. I realized that that lump my parents could feel in my back wasn’t a hard knot of tense muscles. It was my fucking rib poking out of my back. I learned that there is a period right before menstruation that mimics a period during pregnancy where your joints loosen — your body thinks it is preparing you for birth, for loosening your pelvic cavity so an entire head can pass through. For someone with Ehlers-Danlos syndrome, that period of joint looseness was enough to wreak absolute havoc on a system of already-weakened joints.

I learned how to put my own ribs back in with a foam roller. I started drinking marijuana tea for the pain. I went on a different birth control. I stopped taking the placebo pills. I had to fully eradicate that entire portion of my cycle. Goodbye PMDD and ribs constantly popping out. I don’t miss you!

I am still on that pill, y’know. Every day I take it and wonder if I’m one step closer to the day when it inevitably destroys me. The last one took about a year. Tick tock.

Or maybe I finally found the one that works… I really just don’t know.

The fact of the matter is that I have a full handful of maladies that require birth control so I can function. PMDD, endometriosis, dangerous pregnancy, EDS. I need hormonal birth control. I would probably be dead by now without it. The PMDD especially was that bad. My internal organs are likely a scarred-up mess. But the birth control itself almost killed me, too. God, it was close.

Simply put, birth control is heaven and hell all wrapped up in a pill. It treats illnesses and it prevents pregnancy. In other words, it provides you with both freedom and peace of mind. It is absolutely essential. But it’s also monstrous. The sheer number of sometimes-deadly side effects that come with hormonal treatments is staggering. Which is why you need to be under a doctor’s careful eye when you’re on it. You need to be free to choose whichever brand you need. You need to be free to switch kinds at a moment’s notice. None of these things are possible in a system where these pills are not fully covered by insurance.

(And yes, I know, this is a stupidly American problem in so many ways. Obviously the ideal thing here would be single-payer for all medical procedures. But that’s not up for debate here and insurance for BC is. Because for some reason we let some people’s religious convictions determine others’ health care. But I digress.)

Please don’t worry too much for me. I have a good employer who has told me in no uncertain terms that I don’t need to worry about my healthcare coverage. But there are so many people just like me. Who may not have diagnoses yet. Who may have “problem bodies”. Who only know that they need to do something and that they might have to go through several pills to find it. Whose employers either have the strong religious belief that hormonal birth control is a sin or the strong religious belief that they want to pay as little as possible for their workers’ health care. (Call me cynical.)

Those are the people I worry about. Those are the people I feel absolutely sick over as I watch the SCOTUS argue whether we should be allowed to have life-saving medicine. The people who I know will fall through the cracks the second that the cracks are widened enough for them to do so. The people who will die.

It’s a tense time right now. It’s a tense time for very obvious reasons. But this morning I find myself to be even tenser, and my stomach hurts thinking about it. It feels like all I can do is stare at a pill packet and remember every horrible reason I need it and every horrible thing it’s done to me and I just.

It’s a lot.

#long post #just me #handsoffmybc #birth control #feelin some kind of way this morning #please mind the cws #PMDD is one of those illnesses that I wish was more discussed #I feel like one day I'll make an entire post about how dangerous PMDD is #and how our cultural dismissal of PMS is dangerous #and unfair for that matter

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