Ihr tragt n #wearable #smartwatch das eure Herzfrequenz u.a. misst, dann könnt ihr evtl. bei dieser #Studie zum Thema #Covid mit euren Daten beitragen.

Für #longhauler #longcovid Betroffene gibt es wohl eine weitere Studie an der man sich mit seinen Werten beteiligen kann.

https://innovations.stanford.edu/wearables

@augieray I love that on other social media networks I am having to block COVID deniers liberally, and I open up Mastodon and this is one of the first things I see. ❤️🙏🏼

As a #LongHauler I feel like I live in a different reality than the “back to normal” crowd, and it’s nice to not be alone.

Many thanks to Thomas Nguyen, DO, pediatrician, and Frank Han, MD, pediatric cardiologist, for this discussion on pediatric long COVID.

#longCOVID #longCOVIDkids #LongHauler #pediatrics #TownHall

https://youtu.be/B8_-r_Nf_mY

Anyone know if there’s a ‘Long Covid’ or ‘Long Hauler’ support group instance I could follow? #LongCovid #longhauler

It is beyond frustrating when I understand a concept but the words to describe that understanding are just out of reach. There's all sorts of badness to be found in #brainfog but that is the one that is the hardest on me.

And I'm not shy about just saying I'm a #longhauler, or using a coping strategy when necessary, but sometimes I just get caught wrong footed.

The paper shouts out #PatientAdvocacy groups and my preferred term, #LongHauler !

I have pretty much no memory of anytime between when I first caught #COVID and Late summer\Fall of 2021, but going by written communications I sent out at the time, We Are Body Politic was a huge support to me, so glad to see their and similar organizations work recognized.

https://www.wearebodypolitic.com

Anyway, please sign this petition.

"In March 2022, the U.S. Government Accountability Office estimated that 23 million Americans had developed Long COVID. Nearly a year later, studies suggest that number could be as high as 41 million. Yet there is no cure or treatment available."

#LongCovid #LongHauler #PASC #Artist #BrokeAsHell

https://actionnetwork.org/letters/help-end-the-long-covid-crisis?source=direct_link&

it is hard to think or do anything. I wait for doctor's appointments, I wait to hear about my long covid clinic referral, I'm broke and dependent on my spouse, my medical history is too limited to apply for aid.

I take vitamins, monitor blood pressure, go outside every day to get a little sun and move small things around in the yard, and try to read and paint, but mostly sleep. It got easier for a little bit, but now it is more difficult.

#LongCovid #LongHauler #PASC #Artist #BrokeAsHell

"Long COVID poses unprecedented risks for the country that could rival the Great Depression. According to David Cutler, an economist at Harvard University, Long COVID could cost the economy $3.7 trillion in lost wages, increased medical expenses, and reduced quality of life. In 2023, up to 4 million Americans between 18 and 65 are missing from the workplace due to Long COVID."

#LongCovid #LongHauler #PASC #petition

https://actionnetwork.org/letters/help-end-the-long-covid-crisis?source=direct_link&

"As a large and ever-growing international community, we feel government is not meeting the needs of this crisis."

Spread this around to all your long covid pals and the people who love and support them.

#LongCovid #LongHauler #Covid #PASC #petition
https://actionnetwork.org/letters/help-end-the-long-covid-crisis?source=direct_link&

I just wrote the @LongCovidAP
letter "Help End the Long COVID Crisis" to send to government — Write one here:

#LongCovid #LongHauler #PASC #petition

https://actionnetwork.org/letters/help-end-the-long-covid-crisis?source=direct_link&

This week I will learn how to support myself financially while struggling with long covid, will thread what I learn here, and I'd love if anyone with insight into this can weigh in with their experiences.

I'm reading the Long Covid Survival Guide, and am finding it very helpful. I checked it out online through the local library. Online library services are my favorite thing now.
#LongCovid #LongHauler #FinancialEducation #Disability

https://theexperimentpublishing.com/catalogs/fall-2022/long-covid-survival-guide/

"You never can tell what another person is going through. Since experiencing long COVID, I understand this saying in a whole new way. I don’t look sick, but sometimes I struggle to remember where I am, or I have a panic spiral because I don’t know where to sit at a restaurant, or I can’t read signs." - Eleanor Spicer Rice

#longcovid #longhauler

https://magazine.alumni.ncsu.edu/2022/the-long-haul/

Another thing that bothers me from a #ChronicIllness perspective is how Kindle praises you for each book read and wants to turn your reading time into some kind of incentive program reminiscent of summer library reading programs for kids.

Except it doesn't give me a free personal pizza, it just reminds me that I can't read as much or as quickly as I used to. I don't want reading to be a score I'm trying to rack up. It's one of my great pleasures in life, and I just want to enjoy it when #BrainFog and small children permit.

Another one where I disabled notifications.

#MECFS #ME #CFS #Fibro #fibromyalgia #LongCOVID #LongHauler

So far, so good with the #pacing.

Still getting the feel for some of the more difficult-to-quantify symptoms, but wearing a heart-rate monitor is helping me identify how it feels when I'm pushing a little or a lot.

Also using the Visible app, which seems useful so far. I needed a low-maintenance way to track symptoms, and I'm interested to see what trends build up with heart-rate variability.

Please feel free to share your own experiences!

#LongCOVID #MECFS #ME #CFS #fibromyalgia #fibro #PEM #PENE #PESE #LongHauler

the US said eh, we’re bored and just pretended COVID was over because they wanted it to be. That’s not how pandemics work. COVID cases are rising and our hospitals (especially children’s hospitals) are at their breaking points. All so people can act like things are back to what normal was prepandemic, like NEWSFLASH: 7 MILLION PEOPLE ARE DEAD. 1/ #covid #masks #mask #LongCovid #PASC #COVID19 #LongHaulers #longhauler #wearyourmask #WearYourDamnMask #sad

Was going to go to sleep but my body was demanding snacks. First time I've managed to eat this much in the entire 8 months that I've been unwell.
#truvada #longcovid #longhauler

Bed time again soon Tho. Gotta brush the teeths again

Question for my fellow longhaulers: does alcohol make you feel better or worse?
#LongCovid #Longhauler #LonghaulCovid #Covid19

SIGN-UP FOR OUR #SECRETSANTA CLOSES TONIGHT!

We currently have 30 people signed up. We have added a virtual gift opening for Dec. 23rd! Please join us in the fun! bit.ly/3W0ycfj #LongCovid #longhauler #spoonie #chronicillness #support

Lots of people have been improving on truvada. Saw a tweet from a mutual that they managed to do excersize for the first time in months after a month or so of truvada so I'm super hopeful that it will work. Looking forward to being able to go out on my scooter for lil joy rides and maybe even cook a meal for once. The first time being able to cook a meal in months and months.

#LongCovid #persistentcovid #mecfs #longhauler #antiretroviral #CovidNZ