The Long Run

this song is rly givin a great lower body stretch and release in the right shoulder
oooh inner thighs strettttcch
something helped our #POTS: practice changing physical states, like let the blood rush in and recover from it… train urself to feel ur limit
open.spotify.com/track/7DyPHY...

Ivabradin (If-Kanal-Inhibitor) wird im Off-Label-Use erstattungsfähig für das postinfektiöse PoTS bei Long/Post COVID — für Patienten, die Betablocker nicht tolerieren oder dafür nicht geeignet sind.

#LongCOVID #PoTS #Ivabradin #OffLabelUse

#POTS

Rechterhand van een man en linkerhand van een vrouw, naast elkaar uitgestrekt met een tegelpad op de achtergrond. De handen hebben grote paarse en rode vlekken.

Wij gaan dit jaar verkleed als PAISei!

#LongCovid #pots

Just chronically ill enough to negatively impact my life. Not chronically ill enough for a diagnosis.
#eds #pots

Three pots sit on a wood board in a ceramics studio

And then I threw one more 🥲

#art #handmade #pots? #bowls? Idk...

Apparently we're still a little sketchy but I am going to stream a bit today, might need to be short though. #POTS

Ehlers Danlos Syndrome and Men: Three Key Issues Men and their experiences living with hypermobile Ehlers Danlos syndrome is a whole topic…one that doesn’t get nearly enough attention in my opinion.  When you look online for info…

Guys have #EhlersDanlosSyndrome too, you know.

#BlogPost #MensHealth #GuysWithEDS #ChronicPain #ChronicIllness #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness

#31 POTS: Symptoms, understanding, and management with Dr Tae Chung

#POTS and Dr. Tae Chung

open.spotify.com/episode/7MiL...

Seems my body is still recovering from that bug. Trying to take it easy on myself while I finish healing. #POTS

Did a urine dip and it's not a UTI. Think the tica/triple has made me all inflamed or as my ANS has been flared up all week that's made me all inflamed or a combo of both. I do have low dose pred but trying to avoid for now. Siiiiigh, FML 💔

#LongCovid #POTS #TeamClots

FFS had abdo pain all week put it down to side effect. It seemed to settle yday but worsened overnight. Now have constant raw abdo & back pain, FML ?UTI or ? interstitial cystitis. Or maybe as my ANS has been so affected maybe the nerves are just all inflamed.
So done! 🤬
#LongCovid #POTS #TeamClots

I mix the low salt with added potassium into my regular salt as a way to boost my electrolytes when I salt food to help the #POTS.

Donations for Nevra's hospital bills, rent, and mold remediation have stalled. Please consider donating, liking, commenting, and sharing

paypal.me/SaveLizNevra

gofundme.com/f/save-nevra

#SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing #MutualAid

Learning to Live Horizontally - Your Guide to All Things POTS When you have POTS - being upright is a challenge. We deal with fatigue, tachycardia, dizziness, fainting and more. Adapting to living life horizontally can make symptoms more manageable.

“Do NOT be afraid to rest. Your heart is effectively running a marathon any time you’re upright - it’s OK to be tired. Give yourself the permission u need to put your legs up & take a break.": buff.ly/pXIv5F2

by @Broadwaybabyto.bsky.social
#POTS #dysautonomia #ChronicIllness #spoonies #disabled

a cartoon girl is covering her ears with her hands and a star is spinning around her head . Alt: a cartoon girl is covering her ears with her hands and a star is spinning around her head .

Luckily, I'm used to feeling lightheaded 🙈🫠 don't know how I used to cope with this & have no idea how I used to drag myself to work like this

#LongCovid #POTS #TeamClots

Tica update - I'm still lightheaded but it isnt as bad as it has been over the last few days. Dr advised I stop & see if things settle. But as there is a little improvement today I'm going to keep going. If it gets severe again I'll stop/tweak meds.

#LongCovid #POTS #TeamClots

A handmade thank-you card on brown kraft paper sits on a wooden surface next to a small pack of iced biscuits wrapped in clear plastic. The card features a bouquet made from small colorful paper flowers (yellow, pink, purple, and white) with drawn stems and a silver ribbon bow. “Thank you” is handwritten at the bottom. The biscuits are round with white icing, thank you is written in the centre with a heart at the bottom and a small label on the clear packaging that reads “Handmade with love.”

After a pretty 💩 week this made my day today 🥹 A LC friend sent a thank you for helping with the covid inquiry, so sweet! It really is the little things that mean so much 🫶 I've met so many lovely people through this hellish experience!

#LongCovid #POTS #TeamClots

a man and a woman are sitting on a throne with a piece of paper that says ' tainted ' on it Alt: a man and a woman are sitting on two thrones, from the show Taskmaster. The woman points to the man laughing and says “that checks out!” Then doubles over in laughter and points to him again and says it again as he shrugs and nods.

For decades I intuitively felt 2026 would be a big year for me.

I hoped maybe I’d land a lit agent or experience the ever elusive “mom win.”

Instead, I get diagnosed with #POTS, am told I’ve had it since childhood, and find out I’m in a major flare.

Which [checks past luck]…

Auf den Tag genau vor 4 Jahren begannen die ersten Symptome meiner ersten COVID Infektion.

Zu einem späteren Zeitpunkt im April 2022 landete ich das erste mal im Krankenhaus und wurde dann bis heute dauerhaft krank geschrieben.

#MEcfs
#PoTS
und vieles mehr.

With everything in place, we begin the countdown. Joy is on its way. I will be doing a small stream today to practice even though I'm a 2. #POTS

finally got the new SBC, a NanoPi R6S, for my personal cloud home server, so like no blocker

the adrenaline from the excitement is about flooring me for now, gd #pots #hyperpots

at least it's one of the least stressful stressors for me, so it's more tingle than terror

It's still 80F in my house, had been for like. Idk two and a half days or something. I have had over 6 liters of fluids today. All heavily salted, ofc. #pots #dysautonomia #help

Self-Care For Folks With Hypermobile Ehlers-Danlos Syndrome (Yes, You Do Deserve It) Self-care when you live with a complex disorder like EDS (especially if you have the usual add-ons like MCAS or POTS) is crucial&#…

Nope. Definitely not selfish.

#BlogPost #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #POTS #HolisticHealth #Acupuncture #TuiNa #SelfCare 💕 #Wellness

Don’t worry, I only have 7 appts scheduled for this week and another 7 next week 🫠

AND!! Only 6 phone call so far this week…not sure how many portal messages though 😥

At least I have my audiobooks and podcasts 🎧

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Gastroparesis #EDS #POTS

Intuitive Eating vs. Mindful Eating–Which Is Better For You? (Some Tips For Folks With EDS, MCAS, &/or POTS) Have you ever thought about the difference between mindful eating and intuitive eating?  They are not the same thing, but both can be helpful approaches to nutrition when a person lives with E…

Why not both?

#BlogPost #EDS #hEDS #MCAS #POTS #HolisticHealth #GutHealth #Mindful #Intuitive 💕 #Wellness

Will your doc recognize it’s from #Covid? Probably not. But you’ll get care. If you go in w/ #MECFS you’ll be shown the door. There is also so much comorbidity of ME w/ #POTS #MCAS #EDS etc that even if you have one of these & don’t have ME, learning about it could still help you to answers. 2/

I asked my consultsant colleague if he thought it would pass. And he said sometimes it does but what I'm experiencing sounds quite severe and more than a side effect.

I guess we shall see, why is everything so difficult 🤬

#LongCovid #POTS #TeamClots

🙄 never easy is it.
It’s hard because it took years to get my POTS symptoms under control & now I feel like I’m right back there again, constantly lightheaded/presyncopal. Hellish 🫠 but in a way luckily I'm used to it.

#LongCovid #POTS #TeamClots

I'm thinking maybe I need to reduce my POTS meds (or one of them) to try and get HR up and a bit spiky. I'm just too brady atm and I've been brady before & been fine but my body would compensate & this isnt happening on ticagrelor ?due to adenosine

#LongCovid #POTS #TeamClots