My body is absolutely a temple!

But it’s not kind you’re thinking of.

It’s the kind with all the traps from the opening of an Indiana Jones movie.

#ChronicIllness #chronic #disabled #disability #POTS #dysautonomia

I'm a good little zebra and ordered replacement knee braces today. My knees are scarily unstable, and my old braces disappeared longer ago than I want to admit.

Good knee braces are not cheap, but they do definitely make me a lot more stable when I have to be on my feet all day.

#EDS #EhlersDanlos #ChronicIllness #Dysautonomia #Spoonie

Ok definitely need recs for night sweats. The house is currently at 63 degrees and I'm still soaking through my pillows. This is after having only electrolyte additive water all day and pickles before bed time. Dysautonomia tests are being done, but I need some relief. I'm so hot I can't fall asleep. Also, I'm 31. I shouldn't feel like I'm going through menopause. Help!

#chronicillness #dysautonomia #nightsweats #reccomendation

Well, fainted in my car today in the grocery store parking lot. I felt it coming on and just made it to the car. A grocery worker called 9** for me. A nice marine/volunteer emt stayed until the ambulance arrived. Everyday, Dysautonomia takes more freedom away from me. I’m nearly homebound and it sucks. There’s no cure and I’m feeling really shitty and isolated. I can’t even do simple grocery trips anymore. I’m on a 3 year waiting list for a specialist. Really just sad today. #pots #Dysautonomia

Okay so obviously exercising will improve my cardiac health but also I'm already tachycardic and find it painful and uncomfortable. Ideally I'd swim which I used to love but my OCD has made me unable to go in swimming pools for years. Do any other #POTS #dysautonomia peeps have any recommendations for like idk a cheap recumbent bike or something, I'm at my wit's end.

The presentations shown at the NASEM event on infection-associated chronic illnesses are available here: #MECFS #LymeDisease #MultipleSclerosis #LongCovid #Dysautonomia - MECFSNews (Twitter) Link

https://www.nationalacademies.org/event/06-29-2023/toward-a-common-research-agenda-in-infection-associated-chronic-illnesses-a-workshop-to-examine-common-overlapping-clinical-and-biological-factors#sectionEventMaterials

A new way of thinking about persistent infections, such as long COVID and chronic Lyme disease

“Infection-associated chronic illness” sounds like a mouthful.

But using that name has sparked a paradigm shift in how researchers and others view ailments that can keep people sick for years—with few or no options for getting better.

READ MORE: https://www.lymedisease.org/new-way-of-thinking-long-haul/
#longcovid #longlyme #chronicillness #chronicfatigue #chronicdisease #mecfs #ms #pots #dysautonomia

I’m proper #POTsie at the moment - flare started 3 weeks ago after an amazing, almost normal 6months. This is the worst I’ve been in 7+yrs & it’s starting to get me down; can’t make plans, or do any of the stuff that keeps me physically / mentally healthy, really try not to moan about this stuff but had to be said #PoTS #dysautonomia

Some things about me:

I am #aromantic, #asexual, #agender, and #intersex. Very #queer and #neuroqueer.

I have so many disabilities, I find it difficult to remember most of them. This includes the following: #ADHD, #Autism, #Insomnia, #Dysautonomia, #ChronicMigraines, #Type2Diabetes, #VisualSnowSyndrome, #Agoraphobia, #Dyspraxia, #ChronicDepression, #TopographicalDisorientation, etc. This list is nonexhaustive.

I'm so excited for this device! It's a tiny wearable that goes in your ear and it tracks blood flow to the head. It's meant for people with dysautonomia.

My POTS doesn't make me pass out, but it does make the whole room spin and it makes my vision fuzzy. So it would be nice to get a warning that that's about to happen so I can lie down.

#StatHealth #POTS #Dysautonomia #LongCovid

https://www.digitaltrends.com/mobile/stat-health-fainting-long-covid-in-ear-wearable-interview-daniel-lee/?fbclid=IwAR18Q_eZju4NOhdpzuTQVG4Jn5mQyYWvAf9Uxv3t_4jLzXHPHNiUb2bTb3I

hey folks, not been tooting as much as I’d like due to flare in #pots #dysautonomia symptoms. Yesterday my BP was 97/30 with a HR of 149 (at rest!)
Playing word games, trying to pace, read, relax & work full time in between. Wife is managing the garden & I get to enjoy the view but no digging or planting or physical work for a bit 💕

Remember to start drinking your electrolytes fellow #dysautonomia #pots peeps! Especially if you take meds that already cause heat intolerance! It’s gonna be a hot one!

Good news - I've tested negative for covid. That was a lab test, about a week into being ill, so I think I believe it. Phew.

The flip side is... that implies that things _other_ than covid are now able to re-kick-off my originally-covid-related dysautonomia :-(

Hard to guess now how long it might take to clear up. I think I do feel a bit better today than yesterday. I suppose if it keeps on happening, then after a while I'll have more data to do the predicting from.

#dysautonomia

Still don't know for sure if current illness is or isn't covid again, but there are certainly some very similar things happening with my heart rate as happened when I did have covid, & which went on happening for months afterwards... :-(

(Tested negative on lateral flow test so far, like last time. Planning to do expensive lab test from Boots when it arrives, in which I have more trust, see upthread. Meanwhile quarantining from rest of household.)

#dysautonomia #covid

Generally salt slightly raises blood pressure, in people with POTS, *high* salt content can lead to *lower* heart rate and blood pressure.

Many people with POTS have hypovolemia (too little blood volume). It''s the relative lack of blood transport to the brain that causes signaling to raise heart rate (and possibly also blood pressure) via norepinephrine.

Adding salt, which causes water retention, adds more blood volume, so less signaling.

Paper: https://www.sciencedirect.com/science/article/pii/S0735109721006306?via%3Dihub

#POTS #dysautonomia

This morning I’m thinking about just how much of my movement is dictated by breathlessness- when I wake up, when I stand up, after any sort of prolonged or complex movement. Trying to separate the feeling of breathlessness from my emotions about it is difficult but I’m working on it.

#ChronicIllness #Dysautonomia #NEISVoid

#bloosic #playlist for #EDM #beats best w #headphones

Stereo separation helps engage both #brain hemispheres & repetition helps forge #NeuralPathways

Helps w issues of #ADHD #ASD #POTS #LongCovid #Dysautonomia #EDS #PTSD #CPTSD

We've known for centuries, #MusicHeals

Now we know why: It's #VagusNerve reset aka #VentralVagal state aka #PolyVagalTheory

or ya know, you could just #DANCE

#NEISvoid
#bass
#phonk
#PsyPhonk
#PsyTrap
#TripHop
#chill
#Meditation
#Yoga
#VestibularBalance
#Glitch
#Trap
#DreamCore
#GrooveCore
#Metal
#thrash
#Alchemy
#ASMR
#Frisson
#CNS
#Joy
#Safety
#Uplift
#Love
#Relax
#Express

https://soundcloud.com/bleuefish/sets/bloosic

Also shoutout to my #dysautonomia friends in the northern hemisphere, time to start taking your electrolyte beverages/tablets babes, it's getting hot already.

Today is #LongCovidAwarenessDay.

I'm exhausted, but I'll try to add some data.

16 months ago I contracted COVID and had medium to light symptoms. Flu-like chills, low spo2, fever, horrendous body aches, and brain fog like you wouldn't believe.

1) The brain fog has never lifted. 16 months I've been operating at 30-50% brain capacity. Memories are tougher to access, words more difficult to grasp, absolutely no focus.

2) I have now had a Shingles outbreak TWICE in the last 9 months.

3) Last July, my false ribs started popping, and now I have constant costochondritis pain.

4) In November, I suffered some emotional setbacks, and was treated with outrageous tachycardia. This has developed into POTS-like symptoms, which means I almost pass out walking to the bathroom. *The heart complications also mean that I can no longer take my #ADHD meds, so there's no climbing out of this brain fog.*

I've had every blood test anyone can think of, and on paper I'm completely "normal". I had a Holter monitor installed, which showed nothing. Finally getting an echo and a tilt table test in May.

Yes. May. It'll be 18 months since my initial infection, and 7 months from my first heart-related symptoms.

I have little faith that anything will change.

I do not remember what "okay" feels like. Please read that sentence again and let it settle in your gut, it's important to understand where we're coming from.

I don't have answers, and the amount of work I have had to do by myself to get testing and taken seriously is ridiculous. Long COVID is a disability, and our society has never been good to people like us. I've been through the SSDI process before with the spouse who was rejected despite gnarly x-rays showing her Arthritis damage.

Be kind to the Longhaulers in your life. They may be cranky because the internal state of their organs is off. They may forget things because their brain no longer functions the way it did.

#BrainFog #LongCOVID #covidlonghaulers #POTS #dysautonomia #Costochondritis #Disabled #SSDI #Disability

https://www.pots-dysautonomia.net/

#LongCovidAwarenessDay #PostCovidDysautonomien #POTS #longcovidkids #mecfs #dysautonomia