#i mean im not diagnosed with POTS

[sadkachow]

me: so yeah i feel super dizzy and lightheaded when i stand up and also just at random times of the day and also my heart just starts pounding randomly and it skips a beat randomly at least once a day and im also experiencing these other small things that i realized probably arent normal

the cardiologist: yeah, your heart’s beating too fast, but that’s just Normal Teenager Things™️! probably just like dehydration or something lol

[variantoutcast]

It's so frustrating that multiple of my majorly pressing physical issues in life no longer meet diagnostic criteria due to preventative drug use (thanks to years of trial and error and finally having one decent doctor) and lifestyle changes. Like yeah I have regained "use" of my right hand so long as I don't use it too much. This is not indicative of an underlying and disabling neuropathy or impingement of the nerve. Yes I can breathe and "only" break out in rashes when I'm overheated or touching something I shouldnt or angry due to being on 4 separate allergy medications, singulair, and having a rescue inhaler I take throughout the day. As opposed to all the time for no reason. This is not indicative of mast cell activation disorder. Yes I can fall asleep at a reasonable time if I drug myself hard enough and force myself out of bed the next day but this results in fatigue that only goes away when I get 10+ hours of sleep during or partially during the daytime. This is surely not indicative of a sleep cycle disorder.

[ghosty-dsmp]

Btw might edit this intro a lot, so check it out for some changemnents incase

Btw lately I've been posting a lot of vent and shitposting and idc ehat you belive in or what pro or anti something that you are, i really don't care, as long as your happy, be yourself, i also block freely , also, Most of the time i put a tw in the vents but sometime i forget

Hi!! Welcome to my intro!! Im a proshipper! I mostly do dsmp, but only the characters (c!), i do this for fun, my name is ghosty, im a boy (ftm) and im aroace? (Its feels like im aroace but im starting to question it but im a 100% i am aroace), i am a kemonomimi, a racoon pretty sure or a fog (yea i know basic) (i am not a furry or a therian but i respect them), i am also a sadist which i hid this for year but i just said it out loud and also a masochist, and think of very fucked up disgustingthings to do to people which i really don'twant to condon irl, i have dyslexia and autism, schizophrenia, i am hypersexual, depression, ocd, hpd, and other stuff, most of those are diagnosed (except hpd but i did lots and lots and lots of research on it for almost 2 years), i am a chronic ill person with heart diseasethat i will not name, lots of chances that i have pots, probably won'tbe able to walk once i turn 18 because of some genetics of bone problems. i will post random shit or reblogs or answer anonymous message or vent about my life, oh and im also 14 (soon 15) so please be 13+ if your interact!! Oh, im also canadian, so i might use terms that americans people won't understand, english is not my first language, Oh and idk if i said this already but i only have one character that i ship myself with, and its c!tommy (c! Are the characters while cc! Are the irl people, i am shipping myself with c! The characters)

Yay little edit!! I might flirt ir tease you but don't take it romantically cause it will only be plantonic, don't think that everything i say is romantically like one of my mutuals did, people thinking that when i tease or flirt with as romantically way is weird, i am going to say this again, i am aroace and do not feel any attraction to anyone and anything, when do flirt or tease you i mean ot in a plantonic way.

ignore if i say something that isn't about dsmp, i use my tumblr like a journal since i can't afford it irl and can't find one, so yea and btw this is my sign off -> 💿👽

Oh shit oh and i forgot to mention but i have a partner @/bloody-sickness (willow/incelbur idk what i shoukd call them anymore and their whole system is @/bloodiest-sicknesses , please go follow them, their so cool and i love my partner and their headmates! Hehehehe and @/dostoevskysthebest and @/puppies-of-tragedy are the other 2 only people i actually care about, tgose 3 peoples (my partner, and these 2 friends) are the only ones i actually care about, i will act friendly and kind to everyone and be "friends" but i do not truly care about anyone else except these 3 people

@/laromi-immoral (mood boards made by them)

Got this from this post ⏬️

[pyrondeeznutz]

Ticci Toby Headcanons

PT.01

Toby Rogers past, upbringing, pre-proxy headcanons. See proxy era headcanons here ⬇️

CW: Slight mentions of animal abuse, domestic violence, psychosis, bullying, car crash, gore

<NOTE> Im a psychology nerd so I tried to make it as realistic as possible. This is my first time doing anything like this but I have a lot of thoughts about Tobys character. Its not proofread so ignore any typos or grammatical errors. Also… its very long… I have… so many thoughts…

BIOGRAPHY .

PATIENT NAME: Tobias (Toby) Erin Rogers

BIRTHDATE: April 28th, 1994

AGE: Currently 19 years old

HC/EC: Brown hair, brown eyes

ETHNICITY: White American

BIRTHPLACE: Denver, Colorado

FAMILY: Connie Rogers (mother), Dan Rogers (Father), Lyra Rogers (sister)

DIAGNOSIS: Congenital insensitivity to pain with anhidrosis (CIPA), Tourettes Syndrome, Attention-Deficit Hyperactivity Disorder (ADHD), Bipolar Disorder (Type 1, psychotic)

THE GURNEY .

Toby was in and out of hospitals from a very young age due to his wide range of physical and mental health concerns

His earliest memory was when, at age 4, he hit his head after falling onto cement and didn’t cry, scream, or even really acknowledge that he was hurt

After seeing the bloody mess her young child was in, Connie ran Toby to the hospital where tests were ran to determine what caused his lack of pain response

Finally at age 8, Toby was diagnosed with CIPA. This condition not only prevented his brain from generating a pain response but also responses to extreme temperatures (frostbite, heat burn, etc)

Due to these dangerous health issues, and his neurotic mother, Toby was put in homeschooling from a very early age. Connie was too protective of her son to allow him to go out on his own at his age

His earliest memories revolved around roaming hospital halls, his parents fighting over medical bills, being talked to by social workers and doctors, having tests done, minor surgeries, etc.

DEAR OLD DAD .

Dan Rogers was a difficult man. He never admitted he was wrong, he spent his evenings drinking on the couch, and always had something to complain about. The best words to describe this man was angry, bitter, and reckless

He wasn’t a father by any means. To Toby, the man was more of a nuisance than anything. An alcoholic manchild who stood in his way

The boy never got along with Dan. His father would see him as a burden, bringer of unnecessary medical costs. He severely emotionally and physically neglected his children from their birth. Dan never wanted to be a father.

Due to the costs of Tobys medical problems, Dan would continuously attempt to “prove he was faking” his CIPA, and yell at the boy for his strange twitches due to Tourettes. On one occasion, Dan put his sons hand in a pot of boiling water to try and elicit a pain response that never came.

As Toby got older and more independent from his mother, he would often mouth off to his father, talk back, or straight up ignore him. There was never a moment of peace between those two

Being the money maker in the house, Dan was usually very overworked and stressed. He turned to alcohol to relieve this, and his bad temper got worse when he drank. Often to the point his outbursts would lead to physical violence against his family

It was like walking in a minefield for Toby and his family. And since the supposed “man of the house” was a drunken mean old man, Toby took it upon himself to protect his family from his fathers wrath.

He would purposely act up to direct Dans fist towards him. The boy couldn’t feel it anyways, and being hit, pushed, grabbed, was better than having his sister or mother be hit or yelled at.

The young boy spent his childhood in a rage, he was powerless against his father.

MOTHER DEAREST .

Unlike her husband, Connie was a quiet woman who cared deeply for her children

She was well-mannered, motherly, and kept to herself. And while she was a good woman, she had her fair share of flaws

You would catch her dead before you ever caught her losing control over her emotions. Connie grew up quick and that stuck with her. From a young age she took care of her manchild of a husband

She couldn’t afford to lose herself to silly things like emotions. She had a family to care for, a house to clean, meals to cook. Her priorities lied on appearance over her health

This was one of the many reasons she couldn’t leave her husband despite the years of abuse

Despite all the violence, berating, assault. This life was her own and it was just another thing she had to live with

Toby loved his mother, he really did. He knew she did the best given the circumstances. Connie kept her children fed, clothed and housed. Thats all he could really ask for

But he despised from the depths of his soul how she could just sit by and let the abuse happen. How she never left Dan. How she never cared enough to leave despite not knowing what lied in store for them beyond that house

To her, Dan was a safety net. He provided money, insurance, he paid the bills, put food on the table. Connie quit her job in order to homeschool her son. There was no choice

To Toby, his mother was a coward who never stuck up for herself. And god forbid he ever turn into that

So Toby fought the battles his mother couldn’t. He said the words his mother didn’t dare to speak. He took the beatings and his mother did nothing but ask her husband to stop

SOUL SISTER .

In the chaos of that household, Lyra was something of fresh air for Toby

While the two did fight as any siblings do, they had a mutual care and understanding for each other

Lyra would keep a makeshift first aid kit under her bed for whenever Toby got into minor accidents or if their father went too far some nights

Like her little brother, Lyra had a lot of anger in her. She would always try to stop Dan from going too far and she was good at talking Toby and their father down from ripping each others throats out

She would channel this anger and frustration into sports like boxing, soccer, rugby. It was easier to express her feelings through physical means than ever talking about it. The girl was a perfect mix of her parents

When he was younger, Toby had a very bad and hostile relationship with Lyra. He was young and didn’t have any clue how to handle his emotions and would often threaten or physically hurt his sister

But as he grew up, and they bonded over the related abuse, and they would be there for each other, Toby developed tender care for his older sister. If she got a boyfriend, he would be ready to attack at any sign of disrespect. If she brought over friends, he would stay in his room not to embarrass her.

Just as he was with his mother, he was very protective over Lyra. She did so much for him, and he wanted to keep her safe. It was a tangled, messy relationship but they made it work despite her attitude and his anger

CONDUCT .

Toby grew up completely isolated from other kids, families, etc. The most socialization he got was going to family events or being dragged to the grocery store with his mother.

All he knew growing up was violence. And so when he was around other people, he would project everything he learnt from his father onto other kids

From a very early age he was made to feel small and insignificant in his own home by the people that were supposed to take care of him. And so whenever something challenged him out of the house, he would do whatever he needed to do to put them below him

Sometimes Toby would project this violence onto small animals, occasionally moving onto bigger animals such as cats. The feeling of killing something smaller than himself with his own hands gave him a sense of power and control he never had

Due to his untreated ADHD, the boy would often be loud, hyperactive and intrusive. He would have temper tantrums and outbursts as well, and his mother never knew how to handle it

He was a problem child from birth. Not only causing problems for himself, but for everyone around him

Toby would talk back, curse, say strange and vulgar things, refuse to apologize or admit he was wrong, and would run away from home occasionally.

But despite these behavioural issues, Toby always refused to touch alcohol. Despite all the anger, dread and frustration he felt he swore he’d never become the kind of man his father was

BULLY .

Around 12 years old, Toby’s parents decided it would be best for him to get properly socialized and placed him in a public school

He was now old enough to recognize that bleeding is bad and how to check for injuries despite his CIPA, which allowed Connie to calm down tremendously when it came to her anxiety surrounding her boys health and safety

Despite his mothers insistence that he would love public school, he’d make so many friends there, and that everything would be fine, Toby knew damn well he wouldn’t do well there. He was already bullied by his own father, imagine how other kids would react. He’s seen the movies.

And of course Toby was right. Due to his Tourettes, his tics would often confuse, scare and gross other kids out. They would either straight up treat him like a diseases rat or ruthlessly bully him

The boy was called every name in the book, from “twitchy freak” to “ticci Toby”

Alongside the ostracism and harassment from his peers, his tics and behavioural issues would cause him issues with his teachers. They would often scold him for being a disturbance in class

Making and keeping friends was near impossible for the boy. Talking to a “creepy loser” like him was practically social suicide. He was weird, strange, and given his history of fighting the other kids he was probably dangerous too. No kid wanted to be around that.

On occasion, the other boys would get physical with him and he would always hit back, leading him to get in more trouble with the school staff

Toby would be beat down at school and go home to have it done to him all again by his father

Eventually the school year came to an end and Toby was put back in homeschooling

Even though the torment in middle school came to an end, that didn’t mean the bullying stopped. He was now a known freak and the perfect target for kids who were a bit too much like him. They would harass him online until they got bored, and god forbid he saw any of them in public

It made the angry, powerless boy feel even worse in his own world. There wasn’t a night that went by where he didn’t think of going off and getting his revenge. Make them pay for ever fucking with him.

THE CRASH .

When Toby turned 17, he had finally got himself medicated for his recently diagnosed Bipolar Disorder which caused manic / depressive episodes

He was put on antipsychotics and stimulant medication for his ADHD

While he was being treated, his sister got a job and so did his mother. Outside of all the familiar instability and violence his father caused, life was good

Toby was going to be 18 soon and his sister promised that when he became a legal adult, she would take him to move out with her

He didn’t have any friends, he didn’t really have any plans for his life, but he had a life ahead of him regardless and that was enough

The boy was working through pain too great to imagine, he was carrying 17 years of fear and dread, he was so young holding on to so much

But he had a way out. He was going to get a job and move out with his dear older sister and maybe even go to college. He was going to overcome this

That was his views at least up until the crash

Lyra was driving Toby back home from a doctors appointment when it happened

His tics were acting up, it was rather distracting

He was so caught up in his own little world and trying to get through the frustrating twitches that he didn’t even have a second to process what happened

The next thing Toby knew, the car was swerving right into a lamppost and the air bags were deployed

And the next thing Toby saw was his sisters mangled, bloody body. The force of the steering wheel crushing her bones and shards of glass piercing her skin. The physical trauma near shattered her ribs

And the next thing Toby heard was the pained groans and wheezing from his dying sister

Thats the last thing he remembered before he woke up in a hospital bed with his broken arm being patched up. The doctors wouldn’t even let him see his sister who was under surgery in the emergency room

He didn’t get to be there by her side when she died

He didn’t get a goodbye

And while he was surrounded by family, his aunt Lori was even there to support his mother, Tobys father was nowhere to be seen

Dan was too drunk to drive, and too lazy to call a cab. He didn’t care about Toby and he didn’t care that his daughter just died. One less burden.

In one afternoon Tobys entire life slipped through the cracks of his hands

HIM .

The grief was sickening. It was heavier than the weight of the world. The silence that flooded his once loud house from his sister blaring her Beatles albums was deafening

These were the kinds of things that only happened in movies. People didn’t really lose their family members, and these things didn’t happen to people like him

It wasn’t fair

The one good thing in his miserable life, the moment things were finally getting better. There was no hope anymore, Toby was hopeless

He thought of ending his life every night as he stared at the ceiling, not getting a wink of sleep. But he couldn’t do that to his mom. She never showed it, but it showed clearly from the weight in her steps, the tired look in her eyes. He knew she was carrying a burden too great to bear

He couldn’t take away both of her children

So he would lie there night after night hoping to wake up from the gutwrenching dream just to hear her laugh, sing, blast her shitty music. He never really liked The Beatles, but she did. But she did.

It was all too much for him. From the moment Toby stepped out of the hospital he hadn’t felt real. The boy was living two steps away from reality like there was a sheet of plastic in between him and the world

Days would go by where he would forget to take his medication, or where he would simply just sleep the entire day away

On the days he was awake, Toby would feel like he was going insane. He wouldn’t feel real, he would see things out of the corner of his eye

Sometimes he’d swear he saw something outside his window at night

A strange creature standing under the streetlights

And it only got worse from here. Toby would almost always refuse to leave the house, he stopped sleeping, he felt like something was watching him

The boy would spend hours staring outside his bedroom window. The forest in his backyard had eyes and they were watching him

A wave of sickness overtook Toby. He would wake up with bloody noses sometime and no medicine would get rid of his strange cough. Sometimes he would sleepwalk and end up waking up on the edge of the forest behind his house, cold and alone in the dark of the night

It all added up. It was too much. The anger, the fear, the paranoia. The little voice in the back of his head telling him to just do it. Get revenge. Make him pay.

ABLAZE .

The years and years of abuse. Everything his father had done. He wasn’t there. He was never there.

Why should a man like that deserve to live? 17 fucking years of making Toby feel small and insignificant

Not today. And not anymore. The world was in the boys hands now, and so was a knife. And that night was the night Toby Rogers killed his own father.

No words could describe the feeling of adrenaline and rage that overtook the boy that night. There was no other option, this was the way it was always going to happen

Everything Toby has ever been through has led up to this. It was his own divine prophecy

And God showed no mercy that night

23 stab wounds drilled into his fathers chest, his face bloody, beaten and unrecognizable. Toby smashed his tiny bruised fists ruthlessly into his fathers now deceased body.

The only thing that stopped him was the scream of his mother. It was something primal, something deep from the pain in her gut.

Toby ran into the garage and grabbed two axes that belonged to his father, one old one new. Alongside that he grabbed gasoline and matches. He was going to do what he knew best. He was going to destroy everything.

And so the boy ran down the street of his neighborhood pouring the gasoline along his way and dousing the rest over the trees as he stood at the edge of the forest

Striking a match, the dry grass and trees caught on fire and immediately exploded into flames. The heat and blaze engulfed the boy and soon it began catching onto the rest of the forest

This was the end, he thought. Strangely enough, even though his heart was beating in his throat and his body was shaking, he felt calm. He had no regrets and he was fine with this being his ending.

His mind went blank, everything felt like a static screen, he could feel himself getting dizzy and there was a loud ringing in his ears

The last thing he saw was a tall, faceless creature in the midst of the smoke and fire as he collapsed to the ground.

And that was the death of Tobias Erin Rogers.

[chronically-j]

Introduction

Hi, I’m Jordan!

I’m 21, nonbinary, and my pronouns are she/they/he/it

below is my medical story so far!

so, I’d like to start with the fact that i have PTSD with chronic, dissociative features. this means i really don’t remember much from my childhood, so most will either be vague or will have been explained to me by others, so things may be a bit disjointed

All of my life, i’ve been sick in some way, but always mild enough to not need hospitalization (i consider myself very lucky for that, but part of it is also due to my family being poor and unable to get proper medical care sometimes). I’ve always had aches and pains daily and nausea was quite frequent, though not nearly as often as today. i was a very accident prone child, so much of my pain was attributed to that. ive also gotten daily headaches that come in cycles since i was a young child. i would get headaches for a few days at a time as a kid, then it would calm down for a few weeks/months, then begin again. as an adult, i know get them for weeks at a time, then i get breaks of a few days to a few months, then i repeats. i walked to school all through highschool, and every single day without fail id get insane hip/knee/foot pain, it would be hard to breath, my chest would hurt, and id get dizzy. i was diagnosed with asthma and vocal chord dysfunction at 16

in 2020/2021, i got covid. i cant remember if i was vaccinated at this point, but i believe i was. that week of hell started 6-9 months of hell. it was routine covid, no hospital involved thankfully, but afterwards, we found id either developed POTS/pots like symptoms (being assessed now) or the infection had made it worse. i was experiencing extreme dizziness, falls, a heart rate that would spike to 150 just for walking around. my joints also began getting worse faster. they already werent great, id had many times during school where my shoulders or hips would pop and hurt so bad all day, but they were worse. i also began getting nauseous daily, and soon i was throwing up daily. it got to a point where i couldnt eat or drink anything and my dr called an ambulance for me because i was so dehydrated. the drs diagnosed me with cannabinoid hyperemesis syndrome, but i continue to use weed because as of rn the pros outweigh the cons (this is both dr and therapist approved). currently though my family is questioning if that is the cause due to certain things not making sense symptom wise, but thats for my dr to decide

as of today, im on medication for my heartrate, im in the process of getting a diagnosis of some kind, and i have an appointment with an EDS specialist to find out if thats why my bones hate me!

i currently use a cane but am slowly accepting that ill likely need more support at some point, and that ill probably need more medication than im comfortable with (i have a huge fear of medication and have to force myself to take what i do)

im hoping to get answers and more help soon! wish me luck!

[bitchfitch]

went. did the paper work. Can't set up an appointment because they aren't listed as primary care on my insurance. I'm on Medicaid. Medicaid does not make you Only see the provider connected with your care plan. Still can't schedule the appointment until it's changed. have to come back after the change processes.

new layer of hell reached: To establish care with a specialist to investigate the severe fatigue I can't call them to set up an appointment. I can't set it up online. I have to go to the office in person. pick up paperwork. Leave, and then come back with the papers completed. only then will I be able to set up an appointment.

[polyhexian]

It's always the dumbest shit. Like I went to all those hospital visits and had my heart rate skyrocket out of nowhere constantly and all the nurses freak out and was just like yeah I guess I'm weird huh haha. Finally bring this up to doctor and she's like that's weird we should do some heart tests. And I'm like actually I did a ton of heart tests and I know my heart is healthy. And she's like well okay. Why did you do those. And I'm like well sometimes when I stand up I black out for a second and my doctor thought that was a problem and maybe my heart. And she's like. Okay. Yeah. That's a problem. And I'm like well we thought maybe I'm just like really dehydrated. And she's like yeah no im pretty confident you have pots and I'm sending you for a tilt table test to confirm diagnosis. And I'm like sick. I don't know what that means. Just occured to me as a child I was diagnosed with sports induced asthma but I never actually had an asthma attack and the inhaler didnt ever actually seem to do anything. I have honestly contested that diagnosis with my mom a couple times as I Really Don't Think That Was Correct. Hm. I may be vindicated in this

[marzzthehuman]

🧃🍜📚🎬📺

sorry im just really curious ,:3

uwaahhh!!! yaayayyy

🧃- uhh favorite cold drink hmm. maybe like soda?? or water. or apple juice but maybe not? I'm still not over the time I drank a bunch of it after learning a dance that was too much. I think I got sick of the taste lol

🍜- hmm my favorite dish is probably this soup (okay had to Google for this) It's the "One-Pot Creamy Lemon-Dill Chicken Soup with Couscous & Scallions" from a hello fresh meal my dad got once. (we don't get hello fresh anymore my dad just saved the recipe cards lmao) idk I just really like it. (we cant have it anymore bc according to my stepmom 'its not soup season.' cries)

📚- gegegegeggeg favorite book I'm excited. ok here's a few: Hell Followed With Us by Andrew Joseph White, The Spirit Bares It's Teeth by Andrew Joseph White, My Best Friend's Exorcism by Grady Hendrix, The Tunnel to Summer, the Exit of Goodbyes by Mei Hachimoku, and probably some others I forgot.

The books by Andrew Joseph White have gore, homophobia/transphobia, religious trauma, ableism and a lot of other stuff so I would take caution before reading (I also believe there's a warning at the beginning of them, I might be wrong but I hope I'm not?? I don't have them with me rn)

(excuse my bad summarizing lmao)

Hell Followed With Us is about a trans boy escaping from a cult but he was chosen to be the savior or whatever so he had this like??? substance?? infection??? (OKAY THANK YOU GOODREADS. its a bioweapon) put in him so he'd become the monster thing its great. (lots of gore, though)

The Spirit Bares It's Teeth (okay sorry if this one is especially bad this book is hard to descirbe) is about an autistic trans boy who wants to be a doctor ?? I think there's this whole setting thing with ghosts and stuff (its pretty cool I just don't know how to describe it lmao) basically he's put in an arranged marriage and was diagnosed with 'veil sickness' so he has to go to a boarding school. lots of gore. I don't want to spoil a specific scene but there is gore very much. its a super good book though.. I need to reread it

My Best Friend's Exorcism also has gore in it?? I think?? it gets pretty disturbing so. It's set in the 80's where this girl's best friend goes missing one night and then comes back possessed (obviously, as stated in the title) but no one believes her when she tries to tell people that that is not her friend. her friend gets all evil n shit (I mean she is possessed by a demon)

The Tunnel to Summer, the Exit of Goodbyes is about a boy who hears rumors at school about this tunnel that will grant your wishes in exchange for you getting older. he finds the tunnel and is intrigued. (he also wants to know if it can make his sister come back bc she died in a tragic accident)

and unrelated but I also like the Komi Can't Communicate and TBHK mangas :3

ookay moving on~♪

🎬- MY FAVORITE MOVIE IS SCOTT PILGRIM VS THE WORLD !!!! ITS SO COOL I WATCHED IT WHEN WE HAD A 6 DAY BREAK DUE TO WEATHER IT WA SSOOO COOOL

📺- I don't really watch tv but I like Young Sheldon, the office, and superstore :33

thanks for the ask even though this is super long and the book summaries probably make no sense at all!!!

[xoxiu]

hi guys, sorry for kinda abandoning you for 9-12 months 🫠

i have had probably the worst luck the past six months. i was diagnosed with various autoimmune problems, specifically sjogrens disease, and now there’s problems with my heart and blood, and perhaps my brain (beyond mental illness). im currently testing for POTS, too.

if you couldn’t tell, that means ive been in and out of doctors offices for months now. ive been poked and prodded, tested for almost everything under the sun, and have been in immeasurable pain. being sick, as ive found out, is a full time job.

thankfully, i have a team of doctors that are amazing and take every claim and pain i have seriously and work hard to get to the bottom of it. im very lucky- this is uncommon when it comes to chronic illness, and i managed to get diagnosed in months rather than years.

im back, kinda. i never really left, just took a hiatus. im not sure how much time or energy i’ll have to write, but in an attempt to go back to normal, i will try.

thank you all 🫶

- xoxiu :)

[lokilysolbitch]

how i make my eczema skin be nice to me: post shower edition

nobody asked but i wish id known it when i first got diagnosed: here's my moderate-to-severe eczema post-shower routine

it's especially useful for when you don't have the energy to shower or moisturize every single day bc chronic illness is a bitch. if you are like me and autistic and hate the feeling of lotion, this is going to feel like the devil.

pre-step one is to take a minute to charge up bc you will not be able to sit in your towel and stare at the wall right after the shower bc ur skin will dry out. so if you have pots like me, maybe get ur salt and water intake done before the shower bc you will need it bad

okay so you've just turned the shower off. ideally you got the dead skin off the eczema patches without giving yourself scabs. the first step now is to get a washcloth, get it wet and squeeze the water out, and pat dry yourself. i need to stop to squeeze water out again a few times during this

then, immediately start putting your preferred hypoallergenic, nonscented, sensitive skin friendly etc lotion on (or bath and body works bc for some reason their lotion is really nice on my skin while still being scented). and i mean like. there should still be a bit of a white cast/lotion streaks sitting on top of your skin. it will probably feel gross and bad. put a little extra on any eczema patches if you want

okay it gets worse. put your clothes on immediately. your clothes will get lotiony. (if you have scented lotion they will smell nice tho) ideally the clothes covers a lot of skin especially the skin with eczema patches. this traps all the moisture in and the extra lotion from the white cast will be absorbed right after your skin eats up the first layer of lotion. my skin gets dry and flaky 10 Minutes after showering and lotioning if i don't have those lotion streaks and cover my skin.

the end. now you can sit and stare at the wall

does this feel like the devil? yes. have i recently developed sensory issues with pruny fingers that makes this process even worse? yes. but. my skin stays soft and hydrated for days (the eczema patches need a little more attention of course but it still lasts a long time).

this whole thing takes like maybe 10 minutes if you move fast for the lotion and the lotiony feeing lasts. idek like. 15-20 minutes. im not really sure because it just slowly transitions to feeling lotiony to just normal hydrated skin.

if you need a lotion recommendation i would suggest something like vaseline (not the petroleum jelly, just the normal lotion and intensive care ones, the back might say something like "non greasy formula)

the end

[zuuriell]

i felt like doing something so imma do this for the month! i’ll put all my answers below the cut because it’ll probably get quite long lol

1. Postural Orthostatic Tachycardia Syndrome (aka POTS)

2. well, it’s pretty complicated 😭 i’ve had some symptoms for probably like a year, but around late april/early may this year i couldn’t even shower or stand up too long from how bad it got. the uk healthcare system is absolute shit though, so even tho i’ve been a&e multiple times and tried to explain how much it’s all been affecting me, i still don’t get to see a cardiologist until february 2024 :( but we’ve ruled out other options of what it could be, and my mum’s cardiologist friend agreed when i said i thought i had POTS, and my GP agrees, and my potsie friends agree so i’m kinda like unofficially diagnosed as of now?

3. relating to the last point, i am not officially diagnosed yet because of the slow asf NHS so yeah :,) but i mean to figure out what i was experiencing was POTS, it did take me like 8 months? but probably around 10 for me to accept the fact that i most likely have it too 😭 an official diagnosis unless i can rack up the money to go private is probably gonna take me like another year at this rate, but hopefully it won’t be that long

4. i have to pick just one? LOL uhh probably the blood pooling! it’s so annoying because especially when im out and about, i can’t be with my legs in the air 24/7 so it’s always bound to happen. compression socks help but only to an extent, and it stops me from doing so muchhhh :( it means that queueing for things and standing for more than a couple minutes is so so much harder, and if i have too much blood pooling in one day then my can legs ache for DAYS after that. it’s so painful and annoying and just aaghhh i hate it

5. on a regular day: i wake up, chug water which i leave by my bed for the mornings, get out of bed slowly and walk downstairs to make breakfast. i chug electrolytes and go for a short dog walk, then come home to do schoolwork and my family make lunch/dinner so i don’t have to stand around too long. i’ll make sure i get any chores done that i can, and i’ll try to chill in the evening

on a bad day/flareup: i wake up a lot later, have my electrolytes with water and only get out of bed when i need to. i’ll do schoolwork from my bed (if i feel well enough to concentrate), and have salty snacks rather than proper meals, unless my family make me anything. i stretch from bed to combat deconditioning, and if i feel decent enough i can have a bath

6. i don’t have access to any specific medication unfortunately, so i currently just manage with painkillers when my chronic pain is extra bitchy + anti-nausea meds when i feel sicky

7. salt sachets (the little ones you get at like mcdonald’s and stuff) to shove in my purse/pocket in case symptoms flare while i’m out, compression garments, electrolyte tablets, and a recliner bed so i can raise my legs more when resting

8. electrolyte drinks!! not the tablets though (i hate the taste of all the tablets except like 1 lol) - my fav is making electrolyte drinks from scratch! at the moment i really love iced lemon water with honey and salt. i also saw smth about this fancy coconut water drink to make so i may try that and it may become my favourite :0

9. salty crackers, salt and vinegar/ready salted crisps, mcdonalds fries (stfu i know these aren’t healthy but they’re my favs 😭), pretzels, nuts

+ my fav foods to dump a bunch of salt on: pasta, veggies and dips (SALTED CUCUMBER IS SO GOOD), pizza, chips, soup, risotto, probs almost anything i eat tbh

10. i’ve only got one pair but i love them so shoutout to my knee-length black compression socks <3

11. i don’t have any 🥲 i really wish i could have a cane or maybe even a rollator but my family make fun of me and i can’t afford one lolsies

12. i try to do some stretching in bed so that i can safely work against deconditioning, keeping very hydrated, trying to stay upstairs as much as possible so i don’t have to suffer my staircase, asking family to make food for me so i can save energy, taking pain meds when needed, having a cold bath (if possible), trying to keep preoccupied with work if i can, but if not i’ll watch movies on my ipad and stuff

fun fact: i wrote this on a flare LOL so oddly fitting and now i’ve already made myself a plan for the next few days!

13. the thing that’s helped me most is accepting that something is wrong and remembering to listen to my body. going through life pretending that i’m perfectly abled and don’t have anything wrong causes much more harm to me than letting myself rest a few days. it definitely isn’t easy though - i still find myself getting stressed over work deadlines don’t get me wrong, but i’d like to think i’m getting better at adapting to things and noticing when a flare is coming on so i can be prepared to take the time for my body to rest.

14. chairs are your best friends now. i steal the chairs/stools from the kitchen table whenever i’m doing chores standing up for more than 30 seconds. compression socks also help! OOH and if you’re using hot water/heated stuff and struggle with temperature dysreg, i usually grab myself a cup of ice to munch on or an icepack to hold on my chest so that i don’t overheat :)

15. i’m afraid i don’t have much input for this as i left school for health reasons 😭 but i suppose keeping hydrated, getting accommodations such as not too many stairs + being allowed to take more days off to rest for flares, compression gear where possible, staying high on sodium + electrolytes, and extended deadlines would be good!

16. i’m gonna sound so silly for this but i love rewatching my comfort stuff. i’ve got my fav youtubers + fav films/series all compiled in a list, and i spin a wheel to decide which one i’m gonna watch! other activities i enjoy though are reading, playing video games, doing goofy quizzes online, chatting with friends, and going on pinterest sprees!

17. leading on from the last prompt, my fav is a marvel movie - tbh all of them bring me so much comfort but my favs are avengers, black widow, loki and any of the thor films <3

18. my main support system is my wonderful boyfriend, kurtis @agere-tomhiddleston-imagines 💚💛 he’s helped me through so much and he’s so supportive of me no matter what, and i love him dearly for that (and how awesome he is in general ofc) <3 other than that, my parents are semi-supportive! they still get things wrong sometimes but overall they’ll help if i need things and they handle all the shitty healthcare workers for me so i truly appreciate them for that 😭🙏 ooh and definitely just the general online community of chronically ill people/potsies!! i love y’all so much 🫶

19. okay i don’t know if this counts because she was an orthodontist rather than a doctor/nurse, but when discussing me getting braces she asked about my medical history and i explained it all but said i haven’t been diagnosed so i understand if she can’t accommodate me. then she said to me, “hun.. just because you don’t have a piece of paper with a few words on it, doesn’t mean you aren’t ill. if you’ve got symptoms but no confirmed cause, you’ve still got the symptoms, and i’m not gonna ignore those unless you want me to” - the validation was so relieving after years of fighting for doctors to listen to me and believe me :,) ❤���

(i’ll update this throughout the month! <3)

[mushroomfae1781]

Please my people with POTS, help me

please can i get the attention of people with pots (Postural orthostatic tachycardia syndrome).  Im trying to figure out if i might have pots, but im really not sure, and i’ve heard that getting diagnosed with pots is a bitch and a half so please tell me if any of this sounds familiar:

When i was young, I would commonly collapse in parking lots.  To the point where my parents would insist that I hold their hand in case my legs/ankles gave out and i literally fell over (this subsided after i started dance, and the muscles in my legs/ankles got stronger)

I eat an ungodly amount of salt.  Like i salt almost every single meal, I put salt in dipping sauces to get more into my diet, I salt my watermelon, ect.  an ungodly amount. From what  i’ve read, a high sodium diet can help pots a lot and im wondering if maybe that’s why my symptoms aren’t as extreme as most people’s

Sometimes (not always) when i stand up i’ll black out (to be clear, by black out i mean that my vision goes black, not that i loose consciousness)

I’m on my feet a lot for work, and often by the end of the shift/night (most shifts are 5-6 hours, so not even a crazy long time) i’ll be in so much foot/lower leg pain that i have trouble sleeping

If my legs are higher than my heart in almost any capacity, they go numb rather quickly.  Like they start to go tingly in about a minute.

I’m fairly certain that I have celiac’s disease (not diagnosed but i’m looking into it and apparently getting diagnosed when you’ve already been gluten free is a fucking pain), and i read online that it’s more common for people with autoimmune diseases to have other autoimmune diseases (like celiacs and pots)

Im a pretty active person, and that as well as my high sodium diet, i’m wondering if that’s helping minimize my symptoms?  i’d love to hear people’s thoughts on it, and/or hear your (potentially early) symptoms of pots.  Thank you in advance

[horsefreek151]

I am covid positive right now and still laid up in bed. We were supposed to get our SNAP benefits today, and I've been using Instacart to get groceries because I knew Snap was coming in, so we would be able to afford it... WELL, SNAP DIDN'T COME IN.

We spent HOURS last month in the office filing things and ensuring we were all set. Multiple people told us we were all set. Apparently, our account is closed because of "insufficient documentation,"... despite the dozens of files we brought in last month and the workers telling us we were good. It's a snow day, and the office isn't open, so I can't call anyone to fix it.

Im disabled, I cant work a regular job. The job I'm currently working (after-school program for kids) I haven't been able to work for two weeks. My husband does the same job. I am not gonna be able to re-up this job, tho. I love it because It's so exhausting. I can't do things at home after, and I'm in so much pain I crash the next day. I've made $270 from that job for two weeks of work. I can't sustain us for the month on that, and I'm paying for food and meds.

It's hard enough that my state health care is trying to drop me, claiming my husband and I make a ridiculous amount of money cause they think he's at his old job (It was emotionally destroying him); he quit 4 months ago. I was rationing meds last month. I have Asthma, MDD, GAD, ASD/ADHD, MCAS, POTS, UC, and EDS. Rationing meds means I'm putting my life at risk. The gov in the US is so worried about someone getting 300$ they can only spend on groceries and MEDICAL CARE when they deem they don't deserve it that I am having to RATION FOOD AND MEDS.

I even had to make my own hodge-podge dog food for my service dog (A mix of her dry, wet, rice, and peas to keep her eating). This dog's life is more important to me than my own. She's saved my life, and gotten me diagnosed with half of my conditions because she figured out something was wrong.

All this to say, the only income I have gonna have for a while is commissions so please.

Character Sheet - 40$

Full body - 25$

Headshot- 10$

Icon - 5$

Anything, I can draw anything. Anthro, Feral, Spicy, Human, Dragon, Fanart.

I use Paypal and Venmo.

[coloursofaparadox]

i am very very proud of my chronic fatigued ass slowly building up to an average of like 15-20k steps or like. 3x 1.5 hour hikes/dog walks a week over the last few months. part of my whole messed up body shtick (P.O.T.S.) means one of the best ways to reduce the impact is to exercise, with the fun catch 22 of it makes DOING that exercise feel much, much, much worse 🙃 but now that im finally on a combo of meds that more or less works for both physical and mental health, ive been really really enjoying getting outside and doing things with my dog, even despite feeling like shit a lot of the time lmao. over the last like....4 months? I've slowly built up from the bare minimum for him (slow half hour walk 3x a week + off leash time where I can more or less stand still) to now where we go on a medium intensity hike almost every week, plus 1.5hr walks to the local community centre park to weave our way through and find fun little obstacles to do agility on, and run around in the field.

and it hasnt been easy!! like the half hour walks at the beginning were really, really iffy a lot of the time on whether or not i felt like just sitting tf down and giving up at some point. but im finally where i need to be w/ mental health and meds where i can keep slowly improving and not do a massive burnout backslide, in very large part due to figuring out how to eat intuitively in a way that works for me for the fuckin first time in my life, and managing to actually eat consistently enough that i have energy throughout the day. unless i go a bit too hard and get hit with the Super Fun Post-Exertional Malaise, I think I've actually been consistent with this level of activity for a while now.

anyways i am proud of me even tho i did it mostly for Lucas's sake. he is so, so much happier and more content now that he's getting enough exercise and going out to do new things with me. on my end i am very very happy that i can walk that long and go on hikes and feel good after, even tho I'm not totally confident yet on how much it helps day-to-day with POTS stuff like standing too long, etc. I feel better though with daily stuff like grocery store trips and standing in line. same with some household chores that always used to really spike symptoms.

anyways. being gaslit by doctors and passing out on a skytrain at 16 -> diagnosed, properly medicated and eating healthily pipeline only took 12 years and a dog i would die for 🤝 lets go me

[autclover]

Hi, I'm Clover:

♡ I am 25

♡ I am a lesbian

♡ she/her (but I don't understand gender as a concept so who knows)

♡ likes and follows come from @cloverdragons which is my reblog blog. I also talk about witchcraft over at @intheclovers

♡ more below the cut:

My Diagnoses:

☆ MSN autism

☆ schizoaffective bipolar type

☆ anorexia (in recovery, doing well)

☆ POTs

☆ chronic migraines

About my autism:

◇ I have MSN autism.

◇ I require help with daily tasks. I have a guardian carer and a girlfriend carer. I love them both very much and am very appreciative.

◇ I use AAC about 30% of the time. I have limited speech and disorganised mouth words and thoughts. I am better at typing than I am talking.

◇ I struggle with saying what I mean. My thoughts and words are mixed up a lot of the time.

◇ I do not work. I do not drive. I would not survive living independently. I live with mum (guardian carer) and stay at my girlfriends occasionally. Both know how to take care of me.

My special interests:

♡ plushies: especially jellycats

♡ how to train a dragon

♡ fantasy as a genre: anything that involves magic, dragons, swords.

♡ horticulture: i studied horticulture i love it

♡ wildlife: especially british wildlife, birds, bats

♡ natural disasters: especially mt st helens volcanic eruption

♡ the raven cycle book series

My hobbies:

☆ painting: mostly gouache but also watercolour

☆ writing: I am writing a fantasy novel its very hard

☆ crafts: knitting, clay

☆ walking: i go on really long walks (both carers have location so i dont get lost) and listen to audiobooks or music

☆ gaming: sims 3, sims 4, stardew valley, animal crossing

☆ reading: mostly young adult fantasy

DNI:

♤ Minors (if I have interacted with your blog its an accident)

♤ Queerphobic of any description

♤ Racist of any description

♤ Sexist of any description

♤ Probably more but I just block if im uncomfortable

My tags:

#clover yapping : me talking, either own post or on reblogs

#clover plush : my plushies

#special interest : posts about my special interests, tw that this includes natural disasters

#clover art : art I did

#reblog : posts that aren't mine

[bishiglomper]

Every time i look in the fridge (which is embarrassingly frequently) I see the bottle of coffee I premade just WAITING to be made into iced coffee.

And its like.

"Soon.

Not yet. The heart racies still lurk. 👀

...but soon."

And then its 10pm and it's like. Fuck. Missed a reasonable caffeine hour.

Usually because ive eaten and eating almost always kicks up the tachy and that resets the countdown to see if I've gone long enough its safe to caffeinate.

SIGH

Tachy isnt bad at all. I feel it at 100. Whenever i check its usually just at 100. So its literally the lowest tachy-ness. Its just being ridiculously stubborn.

I'm getting impatient, I'mma 'bout to just resign myself to taking an ativan or extra metoprolol with it to compensate. 😤

I want my GP to take over my heart shit. I dont mind doing another halter monitor if it means she'll actually look and listen to what i have done and what everyone else has said. And she's a whole new doctor

I keep saying no to halter monitors because the past 2? Cardiologists did that, didnt find anything, told me to get my shit together and we ghosted eachother. And when stuff happened again, well, it was just another round of that. So.

Do still kind of want to see the POTS person but I think im still under the cusp for it to be reasonably diagnosable. And that doc is 3 hours away. 6 hours driving. Thats a whole ass day trip for something i dont think will bear any fruit. And she wont do telehealth until a physical meeting. Sigh.