#dysautonomia comfort

[sickpunk-selfshipper]

You’re laying on the couch/ bed, just focussing on breathing

Your F/O notices you looking uncomfortable, they ask you what’s wrong

Breathing kind of heavily, you explain it’s your chronic fatigue

When they frown, you chuckle and say it’s just palpitations

Your F/O sits down next to you and gently takes your wrist to check your pulse

You try brushing them off, it’s something you are used to and it’ll go away soon enough

You know you just need to lie still until the palpitations go down

Instead of leaving you be, your F/O lies down behind you, wrapping their arms around your chest

You are still hyperaware of your heartbeat but also of them holding you

Closing your eyes again, you settle against your F/O, pretending your heartbeat feels so intense because of them

Yes I’m having palpitations right now as I’m typing this, why do you ask?!

antis DNI! This post is not for anti-shippers!

[missnikkiann]

Recently, I was on our Twitter friend LupusChick's podcast:

Empowerment in Illness.

I was able to tell my story, and, hopefully, that testimony about my Progressive Illness may help at least one person.

LupusChick was my first Chronic Illness and Spoonie friend on Twitter (back in 2007, when it truly was "Twitter").

If you don't know what a "Spoonie" is, you can research: The Spoon Theory.

LupusChick and I found so many Twitter Spoonies who were living with very aggressive illnesses while we all were trying to maintain a peace that surpassed our own understanding.

Being debilitated by illness can be very isolating; LupusChick had taken me on as a little sister.

When I wasn't at my modified "best" (Spoonies get that!), she took it upon herself to fly from one end of the country to another, just to boost my spirits and ensure that I would definitely be okay.

Before I end, I want to mention something that often gets lost in the chronic healthcare circus: caretakers.

The information we provide is just as important for those tending to the chronically ill, as it can be a disorienting and overwhelming task for us veterans, let alone those dealing with newly diagnosed loved ones and patients. I'd suggest caregivers find and read: The Spoon Theory. It's a quick read and gives the most essential information that is needed from day one.

Lastly, I thank you in advance for showing patience with those patients whose illnesses cause cognitive issues.

I have a degrees in English, Political Science, and Business Management; I also did my Masters in Journalism, but my illness doesn't care about those accomplishments and is determined to deteriorate whatever "brilliance" I once had with words. So, many mistakes will be made and handled without much fuss (to do otherwise would only trigger more of my determined mini-strokes).

Be good.

Be patient.

Be in the moment.

~MissNikkiAnn

LupusChick's Twitter:

https://x.com/lupuschick?t=yL3F0lvlF-tt6JwBSwl6RQ&s=09

[pinkanonwrites]

Horny thoughts aside robot cuddles would be fucking awesome. I struggle with temperature regulation cuz ✨dysautonomia✨ but like laying on cool metal while also being cuddled? Fuck yes. Maybe you rest your head on a softer part to keep your neck from growing stiff. Giant fingers rubbing your back to help you sleep or cradling your body so you’re comfortable no matter what position? The inherent vulnerability and trust of being in the palms of somebody who could crush you in an instant and chooses not to is just perfection

-🌙

The best part about Cybertronians is they could be warm or cool! If it's too hot, laying on cooled metal under the shade is perfect. If it's kind of chilly, they can rev their engine and help ward off a bit of that cold! I've talked about my headcanons before about how Cybertronaisn don't move around in their sleep like humans do, so you'd be perfectly safe with a giant metal hand wrapped gently around your body to keep you from rolling to one side or the other and tumbling off your bot of choice's chassis. The soft rumble of their internals and hum of their spark become the perfect background ambience as you begin to drift off.

[shiros-evil-clone]

okay since apparently I’m incapable of drawing right now here’s the idea I had. mostly self indulgent stuff.

keith is trans ftm and is an ambulatory cane user (he tried crutches but thinks they’re too hard to move in) (plus he thinks they have the same effectiveness so it’s just choosing the more comfortable option for him)

pidge (cough. agender they/she) has dysautonomia/pots and uses crutches on flare days

yeah this one’s out there and mostly just for funsies but allura wheelchair user real. mostly in backlash to all the standing she has to do with the teluduv control whatever thing. that stupid ship is the least ada compliant chunk of magic space shit out there

okay because the writers were lazy and threw in shiro basically having MS (or something unexplained like it) before completely ignoring said disease he gets to be a wheelchair user as well. he starts out with crutches but then it worsens to the point that he’s in a wheelchair

coran coran the gorgeous man. I don’t actually have anything to add for him I just wanted him to feel included

hunk; able bodied

lance; able bodied

those with mobility aids have them decorated as well cause they should be allowed to have like. something fun in the middle of a war. also it would look cool

[3liza]

one of my problems seems to be not just the POTS but also that my window for comfortable heart rate is extremely narrow, like between 60 and 78bpm. when i start feeling shitty and faint i will check my fitbit and it's telling me ~80bpm, which should be tolerable for most people. im not sure why this is exactly but the consequences are real bad. i also think propranolol has given me narcolepsy by fucking my melatonin (there are a bunch of papers on this). i asked my stupid fucking doctor what she wanted to do about this and her answer was, basically, "nothing". ok. i could just stop taking the beta blocker but when i go off it my heart rate spikes to >100bpm, which is "cardiac danger" zone. apparently ivarbradine is preferred for dysautonomia patients but the one dysautonomic doctor in my state is a moron who doesnt take my insurance. hes not a moron because of the insurance thing, he just has no idea what hes talking about and has told me false information to my face about conditions he is supposed to be specializing in. im not talking about weird fringe shit, i mean he told me lipidema is "not a condition where pain is a primary symptom" when i was asking him about it (family history).

unless you are deep in the dysautonomia research salt mines you wont understand why this is a red flag but its sort of like telling someone that soy sauce isnt considered a salty condiment. i would not go back to a restaurant where the head chef told me soy sauce isnt a salty condiment either, i would assume that restaurant did not know anything about food, and i think most people would agree with me on that.

[thebibliosphere]

Hey Joy, this isn't a question so much as a way for me to convince myself I'm not a hypochondriac, lol. Lately, I've been experiencing symptoms of fatigue, brain fog or memory issues, light-headedness, etc, that are uncommon for my age (30). I have related disorders such as anemia, anxiety, & ADHD that may be contributing to these symptoms, although they seem to have gotten worse or appear more frequently now than when I was initially diagnosed with those disorders. My work allows me to read & interact with disabled people with rare diseases, so I often find similarities with their medical issues. At first, I thought this was all just burnout or something related to the lockdown during COVID. I just saw my doctor and had blood work done to check my levels, and I may have a heart condition (tachycardia, mitral valve prolapse). I've fallen asleep at work before because I can't keep my eyes open, even after a full 8 hours of sleep. I can get dizzy from standing up too fast & can't seem to be on my feet for very long without discomfort & pain (I used to work retail, how did I ever do it?). I've researched some of my symptoms and found ME/CFS and POTS as possible conditions. Do you think it's a possibility I have these, or is it just my anxiety? Thank you! (P.s. Hunger Pangs is on my tbr!)

I obviously cannot tell you with any certainty what is wrong--and I am glad you are seeing doctors about it already and may have possible answers wrt tachycardia and the mitral valve.

What I will say is that there are many types of dysautonomia, of which POTS is one, and that what you are describing sounds very familiar to me as someone with two known types of dysautonomia.

The fact that this is hampering your quality of life to the point where you fall asleep at work, are unable to stand without getting dizzy, and are experiencing chronic pain, is enough of a reason to pursue further testing for things like dysautonomia and, yes, possibly even ME/CFS though given your history of anemia, I'm inclined more toward dysautonomia because the two often go hand in hand.

Also, it is normal to feel anxiety experiencing these types of symptoms. Even if it turns out to be a symptom of your anxiety, doesn't make the experiences any less real and debilitating, and you deserve treatment that will help improve your quality and comfort of life. And there is treatment and things you can do that will make you feel better. Getting your anemia under control should be a top priority if it isn't already. Mines was allowed to go untreated for years until we found out my iron anemia was being caused by pernicious anemia (b12 deficiency), and the iron anemia I'd been plagued with since birth suddenly cleared up.

Years and years of blood transfusions and infusion treatments, and the whole time I needed b12. Who knew? Certainly not my old doctors.

Anyway. If your symptoms are at the point where you are recognizing yourself in things like POTS? It's time to pursue that with your doctor. Don't put it off because you think it's not that bad or others have it worse. Everyone deserves to feel well.

Good luck.

[theratcircus]

Hi I need so badly for you to say literally anything about EDS herms or dysautonomia newt some more (perhaps more focus/importance from me on herms.) when you have the spoons because you’re the first person I’ve seen to mention his disability possibly being EDS and as someone who has had pacrim as a special interest since 2013, EDS Hermann very quickly became a very personally impactful headcanon when I found out that’s what was going on with me. like it was an even deeper layer of connection if that makes sense. and then dysautonomia newt is also cool because at my current job I am literally going by the name newt and my dysautonomia is a Known Thing because I keep having to either run and lick salt out of my hand in the little hallway corner between the kitchen and tables or beg the expo worker to give me fries with more seasoning salt than any sane person would want lmaooo. Anyways sorry I just saw the post and it was huge for me personally

Yea of course!! I love EDS Herms & dysautonomia Newt dearly. I think Herms had issues with his hypermobility + stomach issues from his EDS from an early age, but his father always pressured him to push through it & tough it out, which caused more problems than not. After so long of having his problems ignored, he started doing his own research on EDS on his own & started to slowly but surely find what worked best for him around high school/college. He successfully got accommodations for online classes for college, but held off on using a cane in public for years out of fear of judgement by his peers, but eventually got more comfortable. His half of the lab probably has neatly organized drawers of heating pads & braces for when he’s working long hours. He also probably has metal ring splints to help stabilize his fingers with how long he’s at the chalkboard every day, which have the unexpected upside of appealing to Newt because the ring splints look cool & accent Herms hands nicely.

As far as Newt goes, he started developing symptoms of dysautonomia in his early teens & was good at first about taking care of himself, but after the Kaiju attacks started ramping up, he ended up with blinders on about just about anything that wasn’t saving the world, so he’d often forget about eating/staying hydrated/sleeping, which obviously wasn’t good for him. The most he’d do to help himself was to toss back a handful of salt or drink caffeine to manually raise his heart rate/pressure if he started feeling heavy.

[goddevouringserpent]

people to get to know better

tagged by @chaosteddybear, thank you!!! I love these kinds of tag games hehehe

last song: Dead Hands Feel No Pain by Jinjer! had a "holy shit, this is happening" moment after I bought the concert tickets & felt the urge to go over their entire discography lol

favourite colour: ourple💜

currently watching: nothing atm... there's some stuff I've been meaning to get into, but I've been so busy that I can't even think about it

last movie: Monkey Man! thoroughly enjoyed it (partly because it's just a good movie in general and partly because I watched it with friends and we had a wonderful time doing running commentary and thirsting over Dev Patel)

sweet/spicy/savory: I like all three 😭 but ultimately I think I prefer sweets a little bit more? they tend to be a "comfort food" that I can always eat, no matter how I'm feeling, which doesn't really happen with spicy or savoury meals

current obsessions: back on da Wrath of the Righteous hyperfixation. but also toiling away at the OC mines. rotating my creatures and my friends' creatures :3 really excited for Owlcatober. also obsessed with the texts I have to read for class but not necessarily in a good way...? question mark...?

relationship status: single ✌️ I'd insert aro flag heart emojis here but I'm too lazy LOL

last thing I googled: I have three tabs of google searches open so. "hairy cow" (forgor the proper name for Highlands cows), "dysautonomia", aaaaand. "songs about pegging". there is a reason for that last one I promise.

tagging... @hate-not-wanting-a-name, @asordidbarwere, @takers-flames, everyone else I can think of has already been tagged LOL but I am open-tagging for anyone who wants to do this and hasn't been tagged yet!

[wh0rganic]

Walkable cities aren’t walkable unless they have free public places to sit and rest but some people aren’t ready to be normal about folks sleeping on them.

I’ve been in a pretty bad EDS symptom flare all summer, and it’s made me realize even the walkable neighborhoods in my city have gotten rid of public benches. I’ve been on the verge of passing out due to dysautonomia and ready to cry from hip and knee pain and fully unable to rest because every chair is owned by a business and I have to make a purchase to sit. It’s fucked up and makes spaces meant for public enjoyment less accessible for people like me.

It’s just insanely frustrating that cities would rather remove public benches than address the root causes of people sleeping on them. It hurts all of us. We have all got to become more normal about poor people and homeless people because they deserve to take up space too. Whether you like it or not, they are your neighbors too. Put the fucking benches back and stop trying to push people like me and people like them into the fringes of our community.

(yall better not @ me for using the word homeless btw. “unhoused” is a word libs use to make themselves feel more comfortable, and I simply cannot care about your comfort while I am drawing attention to the deeply uncomfortable life my homeless neighbors experience)

[antlerkitty]

Using cane for autism support today. What does that mean? How does it work? I have answers.

I have split level autism, and my RRBs are level 2. This means I need substantial support in my daily life to manage them (even just to not have bad meltdown). One of the things I struggle with a lot is getting dizzy and disoriented from sensory overload. I get sensory overload very very easily. I wear large ear defenders, do big stims (often multiple stims at once), and carry multiple comfort objects, yet still get severely overwhelmed within a couple minutes of being in a new place. I cannot stay standing up, and I usually try to elope as well.

This is where a cane comes in. It helps me to feel more grounded and calm. It also helps me feel more stable, which I struggle with due to dysautonomia and HSD. It means I can walk longer without needing to sit. It’s a bit weird how it works for my autism, but I’m glad it does. I still sit in places a lot of the time, but a cane gives me a few more minutes to stay upright.

[taylormereditholivia1989]

I am still so grateful that @taylorswift liked the post of me and my sister Kate during the Lover era! For sure the most surrealist thing that's ever happened!

We are finally seeing Taylor live this year!! We have dreamt of seeing her live since we were young (7 and 4 years old). Money has always been tight for us. Our Mum and Dad knew how much we really wanted to go to the Speak Now tour in Belfast but unfortunately could not make it happen. ❤️

By the time 1989 and reputation came to Dublin, I eagerly watched videos of the tours on YouTube and posted updates on my tumblr. However, by then my little sister Kate was seriously struggling and repeatedly hospitalised with the (then undiagnosed) and vert rare connective tissue disorder that is Ehlers Danlos Syndrome. Kate unintentionally lost a significant of weight during these years and stopped getting nutrition from her food. We were terrified and didn't know what would happen.

We were born with Ehlers Danlos Syndrome and Dysautonomia, but these were only diagnosed last year. 🦓🦓💛💛

I have dealt with my symptoms from my early teens. My sister Kate has struggled since childhood. This has made socialising and forming solid friendships impossible as we are typically too ill to meet up.

Kate has a knee operation coming up soon. I have kyphosis surgery. We don't yet know if this will be before or after the eras tour in June. We hope everything works out and we can see Taylor live to celebrate all the eras.

To see Taylor right in front of us at Dublin Night One still feels too good to be true. This is what we have been waiting for all these years. I can't wait to sing and dance with Taylor and thousands of other fans for one magical night. I can't wait to have the best evening ever with my parents and my sister. This is what Kate and I have spent hundreds of hours sitting around the fire, carefully analysing verses and discussing hidden meanings. 🔮

Kate and I use a wheelchair part time. We do, however, plan to stand during the eras concert in the front right with our parents for a once in a lifetime experience. We will wear our braces and keep our pain medication topped up. We will get through the night. We know laughs and memories from the tour will last us a lifetime. We have many more tests and examinations left to carry out, but no doubt your jams (especially the tortured poets department as well as future music you are probably already working on). 🤣

We most look forward to hearing the song marjorie live. We both cried when we first listened to it. Taylor describes her grandmother beautifully. We feel especially connected to our grandfather when we listen to this. We discovered a few months back that we inherited our rare genetic condition from our grandfather. He passed young as it went undiscovered. We believe listening to marjorie helps keep his memory alive because we think of him. 💙☀️

We are lucky to have Taylor's music as a form of therapy. We relate to her quirks and her awkward and lovable sense of humour. We genuinely believe Taylor is the funniest person to ever live and we are entranced by how she is so unapologetically herself. Being 5ft 10 and seeing Taylor in the media has really helped me to be more comfortable and accepting of my height and my overall appearance.

@taylorswift if you just so happen to see this post or catch a glimpse of our sequin dresses, curly hair and ever-glittery eye makeup on stage please know: Kate and I are beyond ecstatic to celebrate at your concert. We are going to sing and dance like we have always dreamed of doing. Please ignore our clicking knees and hips if you just so happen to hear them up on the stage. I can say with almost 99% certainty any clicking will be our 22 and 19 year old bodies just doing their thing lol. 🤣

P.S. We can't wait to see your extremely sparkly outfits, shoes and makeup (we really REALLY love glitter in case it wasn't already obvious!!) in person. We love how unhinged you are with sparkles!! 💜

🌟🌟🌟🌟🌟🌟🌟

- Anna (and the slightly more monotone but equally as funny, Kate). 🩷🩷

[fruitysalamander1398]

please lmk if anyone else relates to this but i feel like i have like reverse seasonal depression. i love autumn, a nice crisp rainy spring day, as well as early winter. i love getting to be all warm and comfortable in sweaters and flannels and i love the coziness you can create in colder or crisp weather. it makes me feel so much more like myself. but the hot weather and the summer in general makes me so depressed. i hate the feeling of being too hot, i hate summer clothes, i hate barely being able to stand being outside (probably this has a lot to do with my dysautonomia and being very light-sensitive) but just generally i would be miserable living in a hot climate and i just don't understand the appeal of frying yourself in 80/90 degree weather it always sends me into depression. don't get me wrong i love the beach but more in like a rocky coast cloudy day way or the way it is when it's very late in summer, no one's there and you can watch the sunset.

[beautiful-flutey]

So I saw this and went back and forth on if I was going to do it. I have decided I want to so to start off strong here are days 1-4.

1. Type of Dysautonomia you have: I have Postural Orthostatic Tachycardia Syndrome or POTs. This is a condition in which upon standing up from laying/sitting my heart rate jumps at least 30 beats per minute OR rises above 120 on prolonged standing.

2. Diagnosis Story: I feel like I had some of the “lesser” symptoms for awhile before this but wasn’t too worried about those. But one day my mom was doing my hair and I passed out. We went to the doctor, then to a Neurologist and a Cardiologist. The neurologist couldn’t figure it out with the tests done, the Cardiologist followed a sneaking suspicion did a tilt table and diagnosed me.

3. How long did it take to get diagnosed: I’m one of the luckier POTs people in that my diagnosis came within 1-3 years of the initial main symptom (passing out)

4. My most bothersome symptom: Probably my Presyncope. Because I have to sit or lay down and stop what I’m doing. And I never know if it’s the day that it will go further and become full syncope meaning I passed out. I’m fine if a pass out but I’m still terrified of it.

[Image Text: Dysautonomia Awareness

Month Challenge

Share your responses every day in October on your grid or story with the hashtag #VitassiumChallenge.

1. The type of dysautonomia you have

2. Your diagnosis story

3. How long it took you to get diagnosed

4. Your most bothersome symptom

5. Day in the life with dysautonomia

6. Your medication regimen

7. Your favorite products to manage your symptoms

8. Favorite way to hydrate

9. Your "saltcuterie" board/salty snacks

10. Favorite pair of compression socks

11. Your mobility aids

12. How you manage a flare

13. The thing that has helped me the most since diagnosis is...

14. Tips for cooking/cleaning with dysautonomia

15. Managing dysautonomia at work/school

16. Favorite dysautonomia-friendly hobbies/activities

17. Your go-to comfort show/ movie during a flare

18. Your support system

19. Best interaction with a healthcare provider

20. Worst interaction with a healthcare provider

21. One misconception I want to debunk is...

22. Dysautonomia co-morbidities

23. How you deal with heat intolerance

24. Your morning/nighttime routine with dysautonomia

25. What's in my bag, dysautonomia edition

26. Dysautonomia has taught me...

27. Advice for anyone who is newly diagnosed

28. What you wish others knew about having dysautonomia

29. What others can do to support the dysautonomia community

30. What Dysautonomia Awareness

Month means to you

31. Anything else you want to share?]

[ao3feed-narlie]

The Christmas Everything Changed

read it on AO3 at https://ift.tt/7Mxka6B by YouKnowTilly Nick Nelson is just barely getting by, emotionally and physically. He tries a support group, and the rest is history. Words: 2064, Chapters: 1/7, Language: English Fandoms: Heartstopper (TV), Heartstopper (Webcomic) Rating: Not Rated Warnings: Creator Chose Not To Use Archive Warnings Categories: M/M Characters: Nicholas "Nick" Nelson, Charles "Charlie" Spring (Heartstopper) Relationships: Nicholas "Nick" Nelson/Charles "Charlie" Spring Additional Tags: Christmas fic, Chronic Illness, Anxiety, Charles "Charlie" Spring (Heartstopper) has OCD, Obsessive-Compulsive Disorder, Nicholas "Nick" Nelson Needs a Hug, Teacher Nicholas "Nick" Nelson, Nicholas "Nick" Nelson has Anxiety, fibromyalgia, Support Group, Connective Tissue Disease, Hyperphantasia, Strangers to Lovers, Charlie is very perceptive, Adult Charles "Charlie" Spring (Heartstopper), Adult Nicholas "Nick" Nelson, Sexual Content, Nicholas "Nick" Nelson has hyperphantasia, Bit angsty but also fluff, Hurt/Comfort, Dysautonomia read it on AO3 at https://ift.tt/7Mxka6B

[disagoogibility]

DISABLED & Stylish! Series

A series I'm making on disability/disabled characters AND fashion!

Because we can be cute or attractive, we can be fashionable, while being disabled!

If you have any ideas for a character + a fashion style/aesthetic or a subculture, please comment it.

This is Yumi, a ''Tenshi Kaiwai/Mizuiro'' inspired OC.

They/Them. 19

Japanese.

Major depression & Dysautonomia.

Wears an abdominal binder (below the jacket) & thigh highs compression stockings.

Most common symptoms, are brain fog, fatigue, forgetfulness, exercise intolerance, dizziness, dyspnea, tachycardia, anhedonia, lack of energy, insomnia.

Finds comfort in videogames, and interacting with people via online, has a rat as a pet!

[zazter-den]

I'm back! Had to give my new dysautonomia meds a few days to work. Having literally everything fun that could raise my heartrate banned for a week was annoying. For the past 7 days I have been a cat in heat yowling through the bars, and occasionally Briggs has popped in to laugh at me and go about his day. Absolutely refused to talk anything nsfw with me like a good friend 😒 motormouth continues below

But nothing was funnier that what happened with work. The one girl I'm friends with knew about my valentine's day- and also saw me nearly faint on the site, and then shortly after that I got put on light duty (to give my heart meds time to catch up). So of course her question was a very polite version of "Did...did sex send you to the hospital and was it worth it?" no hospital but yes, yes it was. I really am fine and will be back to spoonie normal in another week or 2.

As for Picnic Prince (I really want to call him Aymeric, but only a 1/4 of my followers will get that reference :[ I'll keep thinking), things are still going well! Spending the time getting to know each other more made it easier to keep my heart from feeling like it was gonna beat out of my chest ^^;;

Also I'm sorry for teasing you all with my new anon. H has asked to move to private, and I completely respect that- anything to make my character anons comfortable! I'm just sorry I didn't mention that before I took a break from the dash ^^;;