What is Dysautonomia? Long COVID-19

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[jessicaoutofthecloset]

*Captions are being made, thank you for your patience!*

[sherriejohnson]

The baby cooing and blowing raspberries in the background is adorable! Don't worry about him being a distraction while filming. He just adds a special cute factor to the clip!

[graceharrington]

One of the worst parts of having POTS is that symptoms like exercise intolerance or fatigue are often brushed off as “laziness” or something that you need to “push through”. But in reality, listening to your body is critical for your health and does not make you “lazy” or unworthy :)

[magicaeart]

I highly recommend getting a shower chair/stool! Taking baths even in the way Jessica describes doesn't work for me personally, but being able to sit in the shower is a LIFECHANGER when you've got ME/CFS and POTS. If your shower is in a bathtub there are specific benches you can get as well :)

[fortywolves]

The biggest step I took to start taking care of myself was to listen to my own body. There's this overarching pressure in US work culture to never acknowledge or admit a single iota of physical distress and it's heavily socially encouraged to work the same regardless of how much pain you might be in, it even provides you social glory if you are messed up but still working hard. It was a big step for me to start openly saying 'hey, I'm sick, like capital 'S' Sick, and it's never going to go away - only better or worse. Sometimes I need to eat food right then and there, sometimes I stand up and have to sit right back down, sometimes my hands shake and I need help opening something. I'm just working with what I've got.'

This was a lot in US retail culture. I know in offices there's maybe allowances to eat a dang granola bar, but in retail there really is not. You are On The Floor, you are On Duty, there are Customers In Line and you can't turn your back on them. Except you're staffed such a way that there's never no customers in line, and there's always something to do on the side. But coming at it straight, just openly admitting that sometimes I Need Help and staying to listen to my body has left me on such a better state. People act like it's obvious, but in reality in many cultures you're conditioned from birth to completely compartmentalize physical distress in order to serve societal/capitalist gain. Listen to your bodies, lovely people!

[rockercaterrorencountered]

It's extremely important for people who have long COVID-like disorders to speak out on their experiences! Your video on the PACE trials for ME/CFS saved me from trying physical therapy for my CFS caused by COVID. Doctors are just now finding out that PT can make long COVID patients significantly worse.

[kyasarin]

I've been trying to hunt down a reason for my lifelong faintness, dizzy spells, heart palpitations, blood pressure issues, temperature intolerances, etc. I've been tested for so many things but not once has a doctor suggested dysautonomia. Good god. I don't know whether to laugh or be extremely mad. Both? But this gives me a new lead to pursue. Thank you Jessica! And Rupert's happy chatter and cooing in the first half was precious!

[NordicFae]

Sometimes I wish that doctors informed of things like this when you get diagnosed. I have had Celiac Disease for about 6 years and have learned more through videos like these and the internet than the doctor that diagnosed me

[dannydunn]

Honestly the fatigue is the worst for me. I hate when people are like "you have the same number of hours in the day as [famous person]" because I don't. I have to sleep 10-12 hours a day just to function at all. I can't imagine how much I'd get done if I could sleep 8 hrs and feel well rested.

[shiaseedsalad]

I had Covid in December and now I get out of breath too easily, not to mention the chest pain
Rupert chiming in with his cute noises was so cute!

[annabees]

Rupert's chitchat in the backforeground is too adorable. 🥰

[annascheurer]

This is the first time I’ve seen someone without a Lyme diagnosis mention Lyme in a video like this! Thank you for mentioning it, it’s severely underrepresented, misunderstood, and most people have a misled idea of what Lyme is. As someone who has lived with Lyme for half my life, thank you :)

[angela-thebooknerdess]

This is what I needed to hear. I am one of those with Long Covid who was diagnosed with sinus Tachycardia and orthostatic intolerance - December 13th, won't forget that date!!! Fun fact, I saw your POTS video a long while back and thought - oof that's a version of not fun I never want to experience, fast forward x amount of time and ... joke's on me.

I could literally, very gently, hug you for the help. I have found electrolyte drinks to help

[laurenconrad]

I babysat a girl with familial dysatonomia. She was so sweet, just the loveliest person. She had a feeding tube that she would insert herself once she reached her teen years. She also got surgery to fix a hunchback at age 13. They didn’t want to get the scoliosis surgery until AFTER her Bat Mitzvah since we are both of Eastern European Jewish heritage as Jessica mentioned.

[azdajajeanne]

4:49 She says "Ashkenazi Jewish heritage, " not "ask your Jewish heritage, " for anyone confused by the subtitles.

[Tangled_Webb]

Thank you for including Long Covid its nice to be seen when so many people dont believe its a thing (14 months in from covid and still ill, its definately a thing) x

[ryngallagher]

this video may have just changed my life. i had covid months ago and have been experiencing so many of these symptoms ever since. i was not told anything about long covid and had no idea about any of this. thank you so much.

[thatonetrumpet]

Watching this, even though I have POTS due to EDS and know a lot of this. Thank you for bringing attention to dysautonomia! It’s a difficult thing to live with and definitely could use more attention and understanding.

Edit: 10:14 If you don’t have a bath/don’t like baths, shower chairs are also excellent!

[onewheelatatime]

I know this isn’t what this vlog is about, but I wanted to tell you that your vlogs about choosing an electric wheelchair encouraged me to get one. It’s helped me so much because I can now leave my house. Thank you for helping me.

[beckybaker]

I have secondary POTS thanks to Myalgic Encephalomyelitis, things that work for me: lukewarm showers, lots of fluids, electrolytes packets, monthly fluid infusions, loose fitting clothes, beta blockers, and lots of kitty snuggles 🐈‍⬛