#dysautonomia awareness

[cripplecore]

happy POTS awareness day to those who are very aware already <3 it's a struggle, but you're not alone out there

#disabled #disability #cripple punk #cane user #chronic pain #chronic illness #actually disabled #dysautonomia #dysautonomia awareness #dysautonomia awareness month #pots #pots syndrome #potsie #postural orthostatic tachycardia syndrome #postural tachycardia syndrome #pots awareness #pots awareness day

[chronically-ill-cal]

sorry for literally abandoning this blog...anyways we're back with a poll:

dysautonomia is sooo underrepresented in the world and in healthcare

#dysautonomia awareness #chronic illness #chronically ill #dysautonomia #pots #potsie #invisible disability #pots awareness #pots syndrome #chronic disability #eds #ehlers danlos syndrome #hypermobile ehlers danlos

[jesusonafrickinboat]

October is Dysautonomia Awareness Month!

Dysautonomia refers to a group of medical conditions caused by autonomic nervous system dysfunction

Conditions under the dysautonomia umbrella include: Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), Multiple System Atrophy (MSA), and others

More than 70 million people worldwide are affected by various forms of dysautonomia

Dysautonomia International and Cleveland Clinic have more in-depth articles on dysautonomia for more information

#dysautonomia #dysautonomia awareness #dysautonomia awareness month #autonomic nervous system #autonomic dysfunction #pots #I made a new post so I could add info and an image description

[jiaade]

October is Dysautonomia awareness month.

Dysautonomia is an umbrella term (for multiple medical conditions) that can cause malfunctioning in someone’s autonomic nervous system.

The autonomic nervous system is responsible for a multitude of bodily functions, such as the regulation of blood pressure, heart rate, digestion, temperature control, etc.

I want to make one thing very clear: dysautonomia is not rare. It is very common and massively under-diagnosed. There is no cure for dysautonomia and managing symptoms is the focus of treatment.

Dysautonomia Resources

*My favorite book about dysautonomia:

•The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients by Freeman, Kelly, et al.

*Websites:

•The Dysautonomia Project: https://thedysautonomiaproject.org/

•Dysautonomia International: http://www.dysautonomiainternational.org/index.php

#chronic illness #dysautonomia #dysautonomia awareness #chronic health conditions #chronic illness awareness #potsawareness #postural orthostatic tachycardia syndrome #neurocardiogenic syncope #familial dysautonomia #multiple system atrophy #pure automomic failure

[micah-has-fallen]

Dysautonomia Awareness Challenge

Day 13: The thing that has helped you most since diagnosis is…

- Since I haven’t received my official diagnosis yet and am still in the middle of that whole process I don’t have a real answer for it. But I’m taking and collecting tips from other people in the community to help find what works for me.

Day 14: Tips for cooking/cleaning with dysautonomia

- I don’t have too many cleaning tastes to do usually, but when I do I find it helpful to stay seated (on like a stool with wheels) if the task allows it. When I have to vacuum the whole house I usually break it into chunks, taking breaks after each section or level.

Day 15: Managing dysautonomia at work/school

- I work almost entirely on my feet and I haven’t really found anything that’s working super well to help with pain and stuff. I’m going to keep trying compression socks but not sure if that’ll work. Other than that I’m just careful when standing up and try to stay hydrated.

At school I send out an email at the beginning of each trimester explaining the situation in brief terms my situation. My most intense symptom at school is the overwhelming fatigue and brain fog, but some days it’s combined with other stuff. I try and stay hydrated and make sure I look back at the notes online if I missed them due to the brain fog and stuff.

#dysautonomia awareness #pots syndrome #neurocardiogenic syncope #NCS #ehlers danlos #hypermobile ehlers danlos #HEDS #EHDS #disability #disability awareness #chronic illness #chronic pain #chronic fatigue

[melodymorningdew]

Imposter syndrome is a bench

Image description: drawing of a nondescript person with a tired/unimpressed expression on their face right next to a drawing of someone vibrating with excitement

Caption:

Me: "I must be faking my illness. I went on a walk yesterday."

Also me: "MY WALKER AND SHOWER CHAIR ARE ON THEIR WAY"

#chronic illness memes #disabled memes #dysautonomia memes #chronically ill memes #imposter syndrome #disabled #chronic illness #chronically ill #chronic pain #chronic disability #melody morningdew #chronically fatigued #fibromyalgia #undiagnosed chronic pain #undiagnosed chronic illness #chronic migraines #chronic fatigue #hypermobile ehlers danlos #ehlers danlos awareness #postural orthostatic tachycardia syndrome #tachycardiac #tachycardia #pots #dysautonomia #undiagnosed something #undiagnosed disability #invisible disability #invisible illness #disabilties #mobility aid user

[chronicallydragons]

It is once again Dysautonomia Awareness month, and I am, as always, Aware of Dysautonomia

#postural orthostatic tachycardia syndrome #POTS #disability #dysautonomia #dysautomnia awareness month #chronic illness

[mandana-the-service-pup]

Denying a patient the right to a diagnosis just bc the disorder you suspect they have doesn’t have a cure is ableist and abuse of power.

Patients have the right to know what is going on with their body. If you aren’t prepared to help them, there is an entire community who can provide them with the knowledge & skills you lack (symptom management, clinical trials, latest research, emotional support, list of specialists and treatment options, etc).

The least you can do is give them the diagnosis.

#tw healthcare #medical ptsd #ableism #ehlers danlos syndrome #ehlers danlos problems #dysautonomia #hashimotosthyroiditis #chronic lyme #disabled community #chronic illness community #disability awareness #accessibility matters #problematic doctors

[greenunoreversecard]

Update

hey y'all

Uh so...... I haven't done my requests, and I am so, so fucking sorry about that.

Ive been struggling with some stuff and have debated sharing it on here, but that would mean admitting the issues affect me.

But I've decided to just say it.

Recently, I got diagnosed with hEDS (hypermobile ehlers danlos syndrome)

Which was honestly expected. I've done mild research on it, and it makes sense, and it also just verified my copious amounts of joint pain is not me being dramatic.

I was also told I had dysautonomia. While I do have a vast portion of the symptoms for POTs (postural orthostatic tachycardia syndrome), I did not test positive as my heart rate evened out after a few minutes and stay that way. And so, because of that, I have to go to a specialist to make sure it's not anything to bad.

this one was somewhat expected I just didn't think it would be as serious as it's become. I thought it was normal.

but hey! at least I have my explanations?

another thing, I recently got told I have a small abnormality in my neck spinal area and that I have to go see a neurosurgeon just to make sure I get cleared for a physical therapy which is recommended for people with hEDS.

so I guess I've just been spending this time trying to finally let myself admit that I am not as strong as I wish I was in that these things do affect me and that they do have an emotional impact on me.

I've also been figuring out ways to minimize pain and such and what things best work for me to help keep me as normal as possible.

as I said, it's all stuff I had inklings of, it just it's really hitting me that I'm not necessarily normal to the fullest extent. And so I've kind of gotten very all over the place.

I'm not trying to make excuses I will get those done eventually and y'all already know that my posting schedule is fuckin- all over the place but I'm just saying it may take a bit more time as I grapple with my physical health affecting my mental health.

sorry for the rant and if it got sad and shit.. uhmmmm...... Whoops?

#greeny's inbox #ehlers danlos syndrome #hypermobile ehlers danlos #ehlers danlos awareness #heds #hypermobile eds #hypermobility #Dysautonomia #actually chronically ill #pots syndrome #chronic disability #pots #potsie #the maruaders #Marauders x reader #hazbin hotel x reader #Ninjago x reader #sirius black x reader #barty crouch jr x reader #Remus lupin x reader #Angel dust x reader #Lucifer x reader #Alastor x reader #rottmnt #Rottmnt x reader

[cripplecore]

how ironic is it that october is dysautonomia awareness month when a lot of us are dealing with the october slide. like, yes, be aware of us during the time that our symptoms are flaring the most /lh

#in other words it went from 80°f weather to 50°f weather pretty much overnight and i have a cold now lol. #disabled #disability #cripple punk #chronic illness #chronic pain #chronically ill #dysautonomia #dysautonomia awareness month #pots #postural orthostatic tachycardia syndrome #postural tachycardia syndrome #<- this is obv about other dysautonomia types too btw :) not just pots

[chronically-ill-cal]

reminder that you are allowed to grieve your old self!!

#i miss healthy me #pots awareness #pots #potsie #chronically ill #chronic illness #invisible disability #dysautonomia awareness #dysautonomia

[neurodivergentbraingoblins]

Growing up I was told I was "unique", "one of a kind", "different", etc.

Then I learned that the traits I have are experienced by millions of people and have names! ADHD, Autism, OCD, seizures, hypotonia, dysautonomia, etc.

Then I was diagnosed with a rare genetic disorder. I was so happy because it meant I finally found "my people" only to discover that I am nothing like all the other people with my genetic disease.

I went right back to being "one of a kind" and "rare within rare". I finally got answers just to discover that the labels we so desperately crave don't actually answer anything.

My advice to people - stop putting so much importance on labels. Labels don't mean anything. The symptoms you experience are what matter. Symptoms can overlap and be identical between different disorders that are nothing a like. But when we hold labels above symptoms we will always exclude people who truly experience the same things as us.

And yes, I'm aware that this may seem like it contradicts my statement that self diagnosing yourself with my genetic disorder is rude. However, it doesn't. A genetic disorder is a mutation of a very specific gene on a very specific chromosome that is specific to each individual person. Just like a heart defect is a very specific condition that only exists in people who don't have a healthy heart.

My genetic disorder doesn't have a label. It is too rare to have a label. So instead, we focus on the symptoms because the symptoms are the only thing that can be controlled.

#actually adhd #actually ocd #disabled #mental heath awareness #actually neurodiverse #disability #mental health #mental illness #physical disability #actualy autistic #autistic adult #adhd adult #physically disabled #disabilties #dysautonomia #genetic disorders #genetics #rare disorder #rare disease #rare #neurodivergent brain goblins #neurodevelopmental disorder #neurodivergent #neurodivergencies #neurodiversity #seizures #non epileptic seizures

[compost-intraining]

Friendly reminder that not everyone with POTS faints! It is a form of orthostatic intolerance and dysautonomia, not a fainting disorder. Although it is one of the symptoms, ppl with POTS who do not faint are just as valid as those who do.

#potsawareness #pots #postural orthostatic tachycardia syndrome #dysautonomia #orthostatic intolerance #heds #eds #chronic illness #chronic illness awareness #spoonie

[gold-as-hera]

#taylor swift #midnights #anti hero #Dysautonomia #chronic pain #chronic illness #dysautonomia awareness month #pure autonomic failure #autonomic nervous system #ans #PAF #MSA #multiple system atrophy #POTS #pots syndrome #postural orthostatic tachycardia syndrome #complex regional pain syndrome #CRPS #RSD #reflex sympathetic dystrophy #october slide #health

[micah-has-fallen]

Dysautonomia Awareness Challenge

Day 4: Your most bothersome symptom

- Boy do I have a nice big one, not passing out in its truest form but that’s what I call it. Let me elaborate; so I have what I call sleep and passing out spells, basically I get brain fog so hard and so long it causes me to either actually lose consciousness (but I know it’s coming) or get very close/appear to be asleep. Its not technically passing out since I can almost always tell it’s coming but that’s just what I call it.

Day 5: Day in the life with dysautonomia

- Umm, I’ll fill this part out tmr. It’s late rn.

- Okay, so wake up, eat, lay in bed for like twenty minutes, get ready, go to school. Struggle to remain conscious in classes and get up the stairs with my intense knee pain and dizziness. Continue trying to fight off a sleep/passing out spell. Walk to work, be lightheaded and in pain for work. Go home, do bedtime stuff (shower, change, etc) and then pass tf out.

Day 6: Your medication regimen

-Since I’m so early in the process, none yet.

#dysautonomia awareness #dysautomnia #NCS #neurocardiogenic syncope #POTS #EHDS #hypermobile ehlers danlos #ehlers danlos #disability #disability awareness #chronic pain

[thebibliosphere]

Ooh I live in NY so I looked for a source on the Niagara thing! This is pretty awesome! http://www.dysautonomiainternational.org/page.php?ID=197

Oh, that is really cool looking. Nice!

#dysautonomia awareness month