#dysautonomia comfort
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sickpunk-selfshipper Ā· 1 year ago
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Youā€™re laying on the couch/ bed, just focussing on breathing
Your F/O notices you looking uncomfortable, they ask you whatā€™s wrong
Breathing kind of heavily, you explain itā€™s your chronic fatigue
When they frown, you chuckle and say itā€™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, itā€™s something you are used to and itā€™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 Iā€™m having palpitations right now as Iā€™m typing this, why do you ask?!
antis DNI! This post is not for anti-shippers!
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missnikkiann Ā· 8 months ago
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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
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pinkanonwrites Ā· 6 months ago
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Horny thoughts aside robot cuddles would be fucking awesome. I struggle with temperature regulation cuz āœØdysautonomiaāœØ 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 youā€™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
-šŸŒ™
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.
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antlerkitty Ā· 4 months ago
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Hello, Iā€™m Antlerkitty!
Donate to a random Palestinian GoFundMe
Having a shitty day?
Tips for cane users in school
Tag system:
#antlerkitty rambles - This is for any somewhat informative post
#life of antlerkitty - For any life stuff
#antlerkitty sharing - Whatever doesnā€™t fit into the other categories, but I still write it myself
#antlerkitty screm - Vents, rants, generally negative
Anti-radqueer, and accepting of all system origins. Not super into syscourse but will occasionally post something about it. Pro educated self-diagnosis for most conditions (not intellectual disability or autism catatonia).
~ā€¢~ About me ~ā€¢~ (PT: About me)
Norms:
I can and will type a lot due to hyperlexia. I will provide TL;DR and essay warnings if needed, but please do not comment on it. I also struggle to understand many things due to cognitive disability, please be patient with me.
Disabilities:
MSN autistic w/ PDA and have been MSN since early childhood. I also have ADHD combined type, OCD, dissociative identity disorder, and more. I have speech issues and often use AAC.
Dx unspecified connective tissue disorder (suspected hEDS), GERD + many other undiagnosed GI issues, mild chronic pain, significant chronic fatigue, dysautonomia. I use a cane almost daily for a majority of the day.
Queer:
He/They, xeno/bigender cistrans, T4T lesbian, transmasc. I use mirror pronouns for our system, so if you say ā€œweā€, I will also say ā€œweā€, and if you say ā€œIā€, I will too.
Other:
I have movement-to-sound and duality synesthesia. Iā€™m otherkin and fictionkin, my kintypes are primarily a cosmic shapeshifter goddess and secondarily Lion from Steven Universe. Iā€™m also chronosian.
Plushies/kidcore are my comfort interests! Sideblog @starkitty-is-small for that stuff.
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thebibliosphere Ā· 1 year ago
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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.
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theratcircus Ā· 3 months ago
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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 youā€™re the first person Iā€™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 thatā€™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 heā€™s working long hours. He also probably has metal ring splints to help stabilize his fingers with how long heā€™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 wasnā€™t saving the world, so heā€™d often forget about eating/staying hydrated/sleeping, which obviously wasnā€™t good for him. The most heā€™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.
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goddevouringserpent Ā· 2 months ago
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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: ourplešŸ’œ
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 šŸ˜­ 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 āœŒļø 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!
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wh0rganic Ā· 1 month ago
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Walkable cities arenā€™t walkable unless they have free public places to sit and rest but some people arenā€™t ready to be normal about folks sleeping on them.
Iā€™ve been in a pretty bad EDS symptom flare all summer, and itā€™s made me realize even the walkable neighborhoods in my city have gotten rid of public benches. Iā€™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. Itā€™s fucked up and makes spaces meant for public enjoyment less accessible for people like me.
Itā€™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. ā€œunhousedā€ 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)
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taylormereditholivia1989 Ā· 9 months ago
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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. ā¤ļø
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. šŸ¦“šŸ¦“šŸ’›šŸ’›
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. šŸ”®
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). šŸ¤£
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. šŸ’™ā˜€ļø
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. šŸ¤£
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!! šŸ’œ
šŸŒŸšŸŒŸšŸŒŸšŸŒŸšŸŒŸšŸŒŸšŸŒŸ
- Anna (and the slightly more monotone but equally as funny, Kate). šŸ©·šŸ©·
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beautiful-flutey Ā· 1 year ago
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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 ā€œlesserā€ symptoms for awhile before this but wasnā€™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 couldnā€™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: Iā€™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 Iā€™m doing. And I never know if itā€™s the day that it will go further and become full syncope meaning I passed out. Iā€™m fine if a pass out but Iā€™m still terrified of it.
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[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?]
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zazter-den Ā· 9 months ago
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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 šŸ˜’ 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 ^^;;
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neonarboretumart Ā· 2 years ago
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šŸ„¾December 2nd: Winter BootsšŸ„¾
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Well, yesterdayā€™s post didnā€™t land but Iā€™ll keep trying! Itā€™s only day 2, after all! This one is a little bit more simplistic, which I donā€™t findā€¦ as comfortable? But these challenges are called a challenge for a reason! I hope you like this drawing of little Balthazar putting on his winter wellies and getting ready to head out!
(Lore tidbit: Balthazar has dysautonomia and hypermobility, and finds it easier to get around and do what he loves with his walking stick!)
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[Image ID: The first image shows a softly coloured traditional drawing of a hallway and the bottom half of a carpeted flight of stairs. Balthazar, a gnomish fellow, is sat on the bottom step, stooped over as he pulls one wellie boot on. Heā€™s wearing a big brown sweater and red gloves, and thick, fuzzy orange socks. The banister railings on either side of the stairs have evergreen christ garlands wrapped around them. A big green coat with a fur hood is hung up on a coat-hook on the wall beside him, and leaning against the wall to the bottom right if the piece is a wooden walking stick.
The second image is just a cropped in version, focussed on Balthazar. End ID]
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antlerkitty Ā· 2 months ago
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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. Itā€™s a bit weird how it works for my autism, but Iā€™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.
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stranger-rants Ā· 2 years ago
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Post-Star Court Billy & Temperature
Note: These are headcanons / what-ifs based on Billy surviving
Iā€™ve thought a lot about how a disabled Billy would handle temperature, and I think I have pieced together my thoughts into one coherent picture of what this looks like for Billy. I do think there is some validity in Billy having PTSD regarding hot or cold temperatures, but I think either extreme could be a trigger. Cold, obviously due to the Mindflayerā€™s need for it. Heat, due to both the sauna situation and the injuries / pain resulting from the heat.
Cold seems like it would be more of a trigger for the hypervigilence aspect of PTSD and heat seems like it would be more of a trigger for the physical manifestations of PTSD. When he wants to cool down or he feels relieved by the cold, heā€™s also got those thoughts in the back of his mind as to whether or not the Mindflayer is still present in him. When he feels too hot, he might remember feeling like he was being drowned in sweat, feverish with burning skin and he has panic attacks that cause him to seek out relief in the cold.
Now, temperature is regulated in a feedback loop. You get too hot, you sweat to cool down. You get too cold, you shiver to warm up. What I have not seen discussed as much is the way post-traumatic injury and PTSD both can wreck your autonomic nervous system. That is that your ability to regulate body temperature in this way goes haywire. So, I think itā€™s entirely possible that a disabled Billy, regardless how he feels about hot or cold from a psychological perspective, would struggle with it from a physiological perspective.
For this reason, I think either extreme is going to be difficult on his body. Instead of his body reacting normally to either extreme by sweating or shivering a normal amount, he could sweat so much he gets dehydrated fast or he could get severe chills and shivers from poor circulation and/or low blood volume. He would especially struggle to regulate his body temperature immediately after injury due to blood loss, and he would likely be very cold in the hospital.
I had internal bleeding from a car accident. I was freezing in the hospital for days after surgery. When you lose a lot of blood, you can feel really cold and your heart can beat very fast with very slight movement. Like, 190bpm after sitting up fast. So, I think his body would react similarly and he would continue to struggle with autonomic dysfunction (dysautonomia) for years if not the rest of his life afterwards. Also, a lot of people with PTSD justā€¦ do not have a healthy, functioning autonomic nervous system to begin with.
Now that Iā€™ve got those explanations out of the way as best I can, (I am not a medical professional. I am basing this partially on personal experience, and research Iā€™ve had to do for myself. That is all. Obviously, what I experienced is nowhere the same level of traumatic injury but stillā€¦) I tried to think of ways in which Billy could heat up his body or cool his body in ways that werenā€™t a shock to his system or a trigger for his PTSD and I have a few ideas.
One, if his brain can start making positive associations between his body and temperature then maybe temperature extremes can become more manageable. Like, if heā€™s able to associate cold and heat with something comforting like the cool water of a swimming pool or the warmth of a hot tub that doesnā€™t either make him paranoid that the Mindflayer is in his body or that heā€™s going to burn alive then I think that might help with the PTSD aspect of it.
Two, finding ways to help regulate his body temperature that isnā€™t immediately triggering (e.g. not an ice bath or an enclosed sauna) will help him deal with the physiological aspects. Maybe itā€™s just a cooled towel on his neck or a warmed up blanket (I got a few of these while in the hospital. They were amazing.) He would need to drink less alcohol, and drink a lot more water. Like, a lot more water. Itā€™s also just good to keep his living space at an even temperature. Not too hot, not too cold.
Three, it is imperative that other people know he needs help with this. Like, when he gets flashbacks from temperature extremes, he can be reassured that heā€™s safe. He can work with a therapist on techniques to ground himself. It would also help to have a safe living space where he has access to a quiet, dark space when heā€™s too hot or a comfortably warm space when heā€™s cold. Having access to a private temperature regulated pool would be nice for his PTSD and his own body temperature regulationā€¦
ā€¦wonder who has one of those? šŸ¤”
Anyways, those are my thoughts for the day.
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bengesko Ā· 2 months ago
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A PSA from someone with POTS:
If you live with someone who has POTS/dysautonomia, and they say they're hot, but you aren't?
Believe them.
Our body's thermostat is BROKEN. We don't react to temps the same way, and we can EASILY overheat in temperatures you find comfortable.
If you tell them "I'm comfortable, drink more water and you'll be fine" you are a piece of shit. Water doesn't always help because our bodies don't even maintain fluid levels properly without LOTS of salt, and that can make the body's core temp fluctuate wildly.
80F is HOT. It's the perfect/worst temperature threshold for MANY folks with POTS for their body to start reacting poorly and it's VERY likely they will overheat.
If you live with someone with POTS, LEARN to believe them.
LEARN to accept they need temps at a certain threshold.
LEARN to stop being an ableist piece of SHIT.
This post brought to you by a creature with POTS who's suffering in 86F temps because SIL thinks it's perfectly acceptable to turn off the AC and said "Drink water" when I asked if it could at least be turned back on to get the house to 70.
If I go quiet for a few days, it's because I fuckin overheated and fried my system.
I need a fucking single room AC unit because this happens EVERY FUCKING YEAR, but I can't afford one.
Next year, when the damn window opens again, I'm applying to get one from OHP, and I'm purposely putting on my form that one of Portland's city workers is my "landlord" who doesn't allow me to maintain proper temperatures.
SIL loves lording over me that she works for the city and makes so much money, let's see how she likes having it used AGAINST her.
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primrosebitch Ā· 6 months ago
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one of the most annoying things about my body is that my face always feels very warm, like it's a normal temperature and not a fever but it feels uncomfortably warm and it's awful, and what makes it worse is that it's only my face, so if the temperature is comfortable for my face then it's really cold for the rest of me and if it's comfortable for the rest of me it's way too hot for my face, i think it's related to my dysautonomia but idk
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