Dysautonomia

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Afraid to Sleep

The day is over,

but my body doesn’t know.

My heart is still racing,

my nerves still screaming,

and I’m exhausted

but afraid to close my eyes.

Because there’s a kind of fear

that comes with a heart

you cannot always trust—

lying in the dark,

listening to every beat,

wondering if you’ll wake

to see another day.

People see the flare.

They don’t see the fear

that follows me to bed.

The quiet prayers.

The racing thoughts.

The desperate wish

to feel safe inside my own body.

I wonder how many of us

carry this fear in silence,

beneath blankets,

behind closed doors.

Because chronic illness

doesn’t end when the day does.

And sometimes,

the hardest part of being sick

is trying to fall asleep

when you’re afraid to let go.

#Poem #Dysautonomia #POTS #ChronicIllness

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Dr visit aftermath

Had a dr visit yesterday and my brain will not stop replaying the whole thing. I can't stop "talking"to this doctor in my head about the things I should have said. I think it's called looping. The visit was weird. I really need to get where my body can be treated as a whole. Where doctors are more informed. Where I won't feel small or more confused when I leave. I'm so tired
Oh I forgot hashtags #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #Dysautonomia #MixedConnectiveTissueDiseaseMCTD #BipolarDisorder

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A new Dysautonomia meme :)

Inspired by:

1. Learning the Legs-Up-the-Wall Pose (Viparita Karani) to help with my symptoms

2. Mr. Show's "Imminent Death Syndrome" poster (2nd image)

3. Every single experience I've had of trying to explain any dysautonomia symptom to anyone

#Dysautonomia

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New Here

Hi everyone, I’m Jodie and I’m new to the community. I finally took the leap to make an account because I am feeling incredibly isolated and physically exhausted down to my very bones.To share a bit about my neurotype and background, I am an AuDHD (Autism + ADHD) adult. My brain runs on high-intensity logic, deep pattern tracking, and analytical execution, which means I can mask my struggles pretty heavily in the outside world. But behind that mask, I operate under extreme executive function fatigue and live with zero natural interoception.Right now, my body is in an active medical crisis. I am navigating a massive metabolic crash from severe Hashimoto's hypothyroidism (TSH 35.2), along with Fibromyalgia, POTS/dysautonomia, and Idiopathic Hypersomnia. Because of the intense deep sleep drive and nerve tracking, I manage a daily baseline of neurogenic bladder and bowel dysfunction, meaning waking up to heavily saturated overnight briefs is my standard reality. Managing this hidden medical gear and chronic pain while forcing my body through physically punishing manual labor has left my energy reserves completely dry.When I’m offline and resting my body, my personality is rooted in my special interests. I love deep-diving into complex anime lore, analyzing the world-building frameworks of webnovels, and hanging out with my wild co-pilot cat, MustacheCat.I joined The Mighty because I want to find a safe space where I can entirely drop the mask. I hope to connect with other analytical, neurodivergent women and chronic illness warriors who manage similar complex logistical gear with total neutrality and zero judgment. I’d love to meet some people to share comfort, swap tips on daily pacing, and remind each other that we aren't broken. Thanks for welcoming me to the sisterhood.#MightyTogether #newhere #Fibromyalgia #AutismSpectrumDisorder #ADHD #pots #neurogenicbladder #IdiopathicHypersomnia #Dysautonomia #chronicmigraines #Depression #Anxiety #Grief #catsofthemighty

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I'm new here!

Hi, my name is TiellyTenn. I'm here because I am bedfast and think too much. I have long covid, Dysautonomia, OI (may have morphed into POTS), and new this week is CKD. Hoping to learn more here than I do from my fellow medical professionals.

#MightyTogether

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