PLEASE PLEASE DO A VIDEO ON THE BILL ABBOTT JUST PASSED IN TEXAS . IT PUTS EVERY SINGLE TRANS YOUTH AND PARENT IN DANGER IN THE STATE IF TEXAS. THIS IS NOT OKAY, AND WE NEED WORD SPREAD!
i know you yourself obviously do not live in the states, but your audience is americans who can help make a difference in this. we need LGBTQ voices to speak up and spread the word.
@@theoohair1446 Hey i'm English & straight so i really don't know but It seems to me that Texas still lives in the days of the Wild West where "Men Are Real Men & Women Are Real Women"
@@susanmargaretwills6432 not really. Texas is extremely conservative state and currently has a bigot for governor. while they aren’t inherently sexist, the state government and general population is very homophobic and transphobic.
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!
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 :)
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 :)
I've got a bath bench and lowering bath seat, both from occupational therapy. I find the bath bench works well, but tends to leak a lot of water on to the floor, while the bath seat, fully lowered, allows the bathwater to just about cover my legs. I am seriously thinking of converting the bathroom to a wet room instead.
Yes! I rely on my shower chair. Or, really, a tall stepstool chucked in my bathtub. The thing that really made that work for me was changing my shower head from a standard fixed one to a handheld one! I hated sitting in the spray, feeling like I was being rained on, but I love my handheld one more than words can say!
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!
I've noticed the same thing in American culture. My friend had bad experiences at her last job because of it. She was pressued to work despite how her stomach felt. Then she wasn't paid for that day because she didn't do much work since she needed to lie down so much. The people she worked with cornered her about how she shouldn't have come in that day despite the pressure to show up sick. Over the next 2 months she was absent going to urgent care for her stomach, contracting the flu, and getting covid. She had notified the human resources manager before when her last day at her job would be. On her last day, the woman claimed to be unaware that she was quitting and fired her because of how many sick days she took. My friend's job was working at the help desk of a homeless shelter. You'd think a place like that would be more compassionate.
I used to work retail, and this is so true. It’s unfortunate that here in the US, the work-life balance pretty much doesn’t exist, and there’s very little support for disabled people.
The American work culture is so messed up. And I particularly hate the fact that cashiers are made to stand the entire time. Why can’t they do their work seated like people who work at desks do? It would make the work much more accessible to many more people. There are plenty of other countries where they work from chairs, and it doesn’t have a negative effect on performance. It feels like cashiers are expected to stand as a sort of punishment for not having a “skilled” job and just being a “lowly” retail worker. It’s disgusting. 😡
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.
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
A friend of mine who's had Lyme for several decades has told me several times that you have to be in charge of your health - because just a doctor isn't going to cut it, sadly. (I'm 4 years into Lyme and can conform.)
Amen to that! When I was diagnosed celiac almost 20 years ago, all my doctor's office said was, don't eat gluten. Not that they had any advice on how to read labels! I had to figure it all out on my own. They even sent me to a nutritionist that had no idea how to handle the gf diet.
@@kellylarsen1668 my daughter was diagnosed 11 years ago and we got the same thing. Not even an explanation of what gluten even was or a recommendation for a nutritionist. Just "it's coeliac, gluten free diet from here on in, bye" Thank God for Google!
@@kellylarsen1668 oh and the nurses in the hospital where we got diagnosed weren't even sure what to give her. One tried to give her wheat bix of all things 🤦♀️
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!
as someone with POTS (and cfs) this sounds extremely similar to what i experience, so definitely try to get that diagnosis !! its rather difficult in my experience to find people who specialise in POTS/disautonomia but when you do its absolutely brilliant. i still struggle and you may too of course but until you can get the professional help you need i definitely recommend following tips intended for those who have a diagnosis :> best of luck !!
@@Myrafly I don't know I feel diagnosis for dysautonomia should be higher since it can be controlled to have zero symptoms for a large chunk of patients with either medication, salt pills, or lifestyle changes, so it can be functionally gone for a lot of patients, but only if it's ever diagnosed. Plus having a terrible illness ruining your life but NOT being diagnosed with what it is causes a humongous mental and emotional burden, I thought i was dying when it got severe in my preteens and really got Depression from being convinced I was dying and I felt so much butter once I had a diagnosis and just could get rid of all the uncertainty a lack of diagnosis gave.
@@boostaboo1096 thankfully I've been on a high salt, high water intake regiment for a year or so and it is helping, though there are still so many days where I stand up and go through a few ever-worsening waves of dizziness and light-headedness with that good old tunnel vision and sparkles. Fun times! But I definitely notice when I'm low on salt or dehydrated. I cease to be able to function at all!!
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.
@@bonnieholt3135 It's probably very different from person to person, because Long Covid isn't one single illness, it's probably a group of illnesses that have different mechanisms. So, some symptoms may be alleviated by PT, while others get worse. I really hope that the complexity of this issue is being acknowledged by doctors and that they find the best treatment for everybody. Until then, patients sadly need to take things into their own hands and try to find the best course of action for themselves as individuals.
Impressive delivery of information from Jessica. Regarding Long Covid, there wasn’t much knowledge in 2020 so one muddled through with a bit of snake oil mixed with pointers from published medical research. In 2021 I was referred by Post Cvid clinic to the CFS/ME clinic and started on the ‘graduated exercise’ program. I fared reasonably well on this, when I stayed within the limits I soon discovered, recovered about 30% of my old self. Unfortunately a combination of a bad cold, stress and overdoing it knocked me back in the Autumn of that year and recovery has been microscopic since then. My GP then mentioned POTs as an issue they now think associated to Long Cov. but nothing further. Have been referred back to the Post Covid clinic and now on a program called ‘therapeutic rest’ to try and set a physical ‘baseline’ from which to work up from, basically I have to take four granny naps of thirty minutes long during the day for the next couple of months. So we’re still groping about in the dark a bit, presumably with an autoimmune disorder.
I'm a covid survivor who ended up with dysautonomia! At 24 before vaccines were available I caught covid at my essential shipping job and now I'm 26, trying to get on disability, and been formally diagnosed with PoTS, CF/ME, and general dysautonomia. I'm still struggling almost two years out with internalized ableism and the capitalistic ideal that worth is defined by work. Like I'm worth just as much now when it's an achievement that I can sit up for an hour at a time as I was working in a warehouse walking miles a day.
I’m so happy that you beat Covid. But, I’m sorry about the lasting effects on your body. I just had my last appointment for disability determination. I broke my back and I have Scheurman’s Kyphosis’. So I am pretty much miserable 24/7 and not able to do hardly anything anymore. Don’t give up on trying for the disability. You definitely need it and as a general rule they always deny you the first time you apply. Hang in there sweetheart and take care of yourself🤗
I got Covid March 2020 and I’m diagnosed with long Covid, POTS, cfs and MCAS. Like you I went from being fit, I used to run every day for half an hour to now needing an electric wheelchair. I’m sorry you are going through this, but you are not alone.💐
I'm so sorry that you are going through this, it took 2 years for my dad to get disability after a car accident, he met a woman who had a broken back who got turned down for disability, it wasn't until she was diagnosed with Depression that she got it ,my dad to after being hurt and fighting for 2 yr he was depressed and got it for that 🙄🤷♀️ Also we got a disability lawyer and it helped Lots. I wish you lots of luck and I hope you feel better 😊💜🖤
The reject everyone's first application, so it's not anything you did wrong, Good luck in the future. I'm heartbroken to hear of young people having to reorder their lives to accommodate long Covid. I developed it about the same time as you did, but I'm retired. I've been finding a system to be useful and keep myself entertained since I turned 65. That doesn't help the jarring change from an active lifestyle to a sedentary one.
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 :)
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
Hang in there sweetheart!! It becomes easier to manage with time & acceptance (which was the hardest part for me 🙈). Remember that you ARE NOT alone!! 💜🙏🏻
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.
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
My doctor told me electrolyte drinks are good because they make your body retain water a bit better and boost your blood volume! I was diagnosed with POTS and a slight heart murmur at 18. It’s only gone downhill over the last ten years. But I’m still kicking!
For myself I switched from electrolyte drinks to straight up salt pills, but I have POTs and that might be too much electrolytes for long covid I don't know
They are great if you have GI issues that interfere with mineral digestion too. It helps keep the salt balance and avoid some of the brain fog-> in my experience.
@@ivechang6720 i was also told the same thing. I drink a lot of nutrition shakes and electrolyte drinks because it’s all i can handle some days and because even when i can handle other stuff i don’t feel like I’m getting enough nutrition. Bonus: vitamins daily too.
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.
Thanks to EDS, POT, and MCAS (a condition that often accompanies the two that is basically “allergies all the time for no reason!”) I’ve “joked” for the last two years that, barring the fever/loss of taste & smell, I could never tell if I was developing COVID symptoms, because I feel like that all the time anyway. *Maybe she’s born with it, maybe it’s SARS-Co-V-2.* I’ve been feeling extra POTSy lately so this was a timely video. “*Oh my god, I’m dying*…no, no you’re not” really IS the best way to describe it. 😂
So I'm in POTS remission after COVID-19 and want to share what worked for me. My doctor had me do aerobic exercises that are more horizontal. 4 weeks of rowing, 4 weeks of the elliptical. A month ago I added megaformer Pilates. Still having MCAS issues though. A DAO supplement and a probiotic helped a ton. Cromolyn helped too but my insurance stopped covering it!
@@rmh8940 sounds like your doc recommended the CHOP POTS protocol, or something like it! I’ve definitely heard it works for a lot of people, but I never really saw much improvement with it when I was using it in PT.
Thank you for explaining. I was diagnosed with PoTS in 2020 after having Covid in 2019. It’s changed my life so much and I still don’t know much about it.
Hang in there darling ! It’s the most difficult at the start but you will learn how to live with it. Just remember that you ARE NOT alone… if we can help in any way just ask! Have a blessed day 💜🙏🏻
It’s rough. Remind yourself it’s okay to have days where all you are capable of is barely stumbling to the bathroom, and having to lay in bed. It’s okay to need help. I’ve had pots probably more than half my life but was only diagnosed at 18, ten years ago. Electrolyte drinks if you have low blood pressure help, and don’t overdo it. Don’t be me and push yourself too far and land in hospital as a result.
@@labaccident2010 YES!! Liquid IV is an absolutely wonderful resource when it comes to electrolytes that really work well! On top of their accessibility, they also have programs that help offset costs to patients who have been diagnosed with POTS, ANS, SICCA, etc., etc.!! It’s always a plus when you can get really great hydration plus vitamins & minerals w/o worrying about sugar while also not feel like your drinking salt water 😝!
So I'm in POTS remission after COVID-19 and want to share what worked for me. My doctor had me do aerobic exercises that are more horizontal. 4 weeks of rowing, 4 weeks of the elliptical. A month ago I added megaformer Pilates.
For the orthostatic hypotension, I've found that thigh-high compression stockings really help me! And they can certainly look retro with the elastic that looks like garters!
Thank you, Jessica. 🙏. You present these things in such a wonderful way that I can understand what is going on. Thank you, too, for adding to our knowledge. And the fact that you can pronounce those incredibly long multiple syllable words is impressive as heck. I am in awe. I am also in awe, that even though we can see you are not feeling well….at all….you still look gorgeous and are covering this subject matter in a wickedly intelligent manner. You are an exceptional human being. ❤️. Hearing Rupert in the background is a beautiful plus. Thank you for sharing his part of the conversation. ☺️
I have (a relatively mild form of) dysautonomia that particularly effects my skin, digestion and blood pressure. When I got covid, I lost a lot of my strength, fitness and confidence - glad to see more people are learning about dysautonomia, but sad that that’s because more people are suffering
I have never felt a video in my core this strongly. I've had Pots since about 2nd or 3rd grade, but wasn't diagnosed until junior year of high school. For me, stress is my biggest trigger. I remember just falling over at least twice a week in college...Love that you are bringing awareness to all the aspects of this!
This was very useful! I had Covid and had to put my entire life on pause for 9 months until I recovered. The shower thing is very true and even scarier when you live alone 😬😄
I got a shower chair a few weeks ago because I got COVID and my dysautonomia flared HORRIBLY and even though I’m back to my baseline(thank gods) I freaking adore it. My POTS is well enough managed that i don’t *need* it, but it is SUCH a game changer.
I have had arthritis for years and have had all of these symptoms that my healthcare providers just couldn't pinpoint. It is so nice to know this is why
I got diagnosed with Post-Covid Syndrome this year. Literally my whole life taken from me. Your videos have helped my mental health this year and coming to terms with my new life as a disabled person. Keep doing what you're doing, and happy parenting!
I have EDS and POTS - you mentioned tight clothing as a "no". In the states at least doctors prescribe compression stockings, either knee highs or full leg, and it really does help! Part of the problem is the blood wants to pool in my legs when I stand up. My legs turn red, purple, blotchy, etc. The compression gear keep this from happening!
I wear compression socks/leggings and a corset and they help a lot with the orthostatic intolerance part of POTS, but they also make the temperature regulation worse, depending on what else I’m wearing. compression socks + wide leg pants? usually fine, but not always. compression socks + skinny jeans? actual hell on earth. Same with the corset. So it’s definitely one of those things that can be a help or a hurt depending on the person/day/weather/symptoms/etc.
I have a similar issue.. blood is almost always pooling to my feet leaving them swollen & red. Compression seems helpful often but it’s not my favorite feeling to wear
I have to wear leg and arm compression sleeves. I have POTS, complex regional pain syndrome and fibromyalgia. But I can't stand anything touching my left sternum or shoulder so wearing tight shirts or a bra are awful. These diseases are so weird and make no sense. It's a roller coaster. Thank you for shedding light on us ❤️
I'm in the process of getting my dysautonomia narrowed down (they suspect POTS, but I'm having the damnedest time getting a TILT test done). Thanks, as always, for making these things much easier to understand and explain to others.
I did some research into POTS when my apple watch was telling me I had irregular/fast heartbeat with no physical exertion. One week of wearing those heart monitors and one ultrasound later and fortunately there’s nothing anatomically wrong with my heart. For some reason it just works harder than it needs to. Turns out that was a big factor in my fatigue. So yeah thx Apple Watch
I am both autistic and experience basically all the symptoms of dysautonomia that Jessica described (no wonder lol, I have type 1 diabetes and other chronic illnesses) so noise and light reduction is so important to prevent terrible terrible migraines.
I got my POTS and EDS dx yesterday after learning about it from your videos! I've been struggling with these for 9 years and it's great to finally have validation. Please keep up the lovely work, Jessica
So I'm in POTS remission after COVID-19 and want to share what worked for me. My doctor had me do aerobic exercises that are more horizontal. 4 weeks of rowing, 4 weeks of the elliptical. A month ago I added megaformer Pilates.
I live in a tiny 3rd floor apartment with no lift. I have autism, MS and EDS. My joints constantly hurt. I strain my ankles on the regular. I don't have a bathtub, and my shower is to tiny for a shower stool. I know I'm not in such a bad situation. I get some disability money from the french government. I have a stable roof over my head and I can afford food. But sometimes I'm just tired of not being able to adjust my living situation to be more comfortable/reduce my pain... Thank you for letting me vent. ^^
I felt so seen at 13:26 when you put the rainbow of crisps lol. I have POTS and Narcolepsy and I crave salt all day. My sleep doctor diagnosed me by asking me seemingly random questions and one of them was 'do you crave crunchy salty things like chips?' and I was like hOw did you KnOW! This video was super informative, I didn't know that POTS was under the umbrella of dysautonomia! I definitely feel like loss of control is a huge part of it- pre-diagnosis I would beat myself up so much about sleeping through things and getting dizzy when I stood cause I just thought it was my actions/behaviors that were causing it. Thank you for always being so warm and positive, Jessica, and for sharing your experiences and insights!
I also experience a bunch of these symptoms on a normal day. Shower chair and electrolyte beverages are a lifesaver for me. I have Dysautonomia due to a genetic condition so I've been dealing with this forever. So grateful for your videos, Jessica--they were super helpful right after I got diagnosed. Also gotta love the fact that this video is telling me that things I experience are part of dysautonomia when I didn't know they were. My mom always felt it was so weird that I didn't swear and now I have an answer!
I was going to say electrolytes (in whatever form works best) are always helpful. Using one with all 4 major electrolytes if you can (sodium, magnesium, potassium, calcium) and isotonic glucose is honestly one of the greatest tips I've ever received. Feel out of whack? Have a glass. Feel a crash? Glass. Can't tell what's amiss? Glass. Stiff and don't know why? Glass. Only thing is, get doc's clearance before you do, as all 4 when out of whack can cause problems, and some people can't supplement all 4 (ie. sodium & potassium with certain heart conditions).
Great video! I’m iron deficient and have a lot of these same symptoms. Long Covid is also possibly linked to nutritional deficiencies, especially iron and b12. It’s crazy how much Covid can mess you up 😬
Yes! I have both Long Covid and low (like, empty) levels of iron in my body and no one has no clue what symptoms are LC and what are due to the iron situation and I'm so fed up with this all. It feels good to read similar stories though.
@@eveningbun I agree. It’s nice not to feel alone. Had a check up today and I’ve actually improved my iron but still have symptoms so maybe it’s LC because I was sick with it last fall. Who knows. Anyway, hope you get to feeling better!
Thank you! I didn't realize that my digestive issues were connected to my dysautonomia! I also have exercise intolerance, POTS, migraines, and many other issues. Connecting the dots when my symptoms have gradually come on over the last decade has been frustrating and difficult. You are such an inspiration, and help with the ever evolving brain fog!
I've just been diagnosed with dysautonomia and you post this video. For some people getting a diagnosis is harder. In my country for example, it is very rare to be diagnosed with this condition. Plus, other people don't understand why I can be riding a bike one day and unable to work the next. I highly appreciate this video because it speaks to a huge truth, the feeling of not knowing what kind of day one will have is quite hunting.
Oh girl, such an important video! Only coming out the other side of long covid now (or just going through a good patch)…caught it in Feb and it’s been A TIME! My nervous system has been all over the place. Crazy pins and needles all over, heart palpitations, dizziness when standing up, patches of skin that get hot but aren’t hot to touch, a random stammer that comes and goes! My gaps between flare-ups are getting longer, thank goodness 😭 The worst thing that was happening during my long covid was the nerve pain in my face and head, and blood pooling in capillaries/veins in my fingers and arms 😩 Noise sensitivity is hard with kids. The fatigue, christ. That’s gone thankfully. I had covid years ago and was vaccinated so this really took me by surprise! The Irish medical system hasn’t been helpful at all unfortunately x
So many things to now think about. I suffer from bouts of low blood pressure I will be going about my day, when "BAM" I'm on the floor. Good advice about getting things moving before you get out of bed and also drinking more water. Thanks Jessica. Loved hearing Rupert in the background. Hope you are feeling better soon.
This video screamed my name since my thermostat doesn't work in my body, and my heart is too small, so I always am too hot or too cold and falling over. Tons of fun. The GP's here say I have the medical history of a 70 yr old woman and I am not near that age lol
I was diagnosed with dysautonomia not long after being diagnosed with CRPS in 2013. I think it’s gotten worse over the years. Pure exhaustion and dizziness are the symptoms I experience the most. I’ve been amazed by the number of doctors and nurses who I’ve had to explain dysautonomia (& CRPS) to, but it has been slightly better lately. I think it’s finally being taught in medical schools, thank goodness! Little Rupert blowing kisses and babbling in the background is just adorable 🥰
Temperature regulation is such a weird one to manage, I've been in a 73°F house in the middle of summer and been so cold I had to step out into the 100°+ heat to warm myself like a lizard
I'm always happy to watch another video of yours on those general struggles, I've been struggling with /something/ for the last 12 years or so, but progress in getting professionals to understand is really slow. It is complicated when you have both mental health issues (Depression and ADHD diagnosed, Autism suspected and on waiting list, which only partially explain the mental symptoms of: mood swings, irritability, anxiety, hyperactivity, hyperemotionality, memory issues, constant stress, circling thoughts, etc.) and physical symptoms that are not THAT extreme but also kinda common on their own or in lower frequencies (headaches, dizzy spells, fatigue, trouble sleeping, trouble getting up, very low fitness, lack of energy, terrible temperature regulation, trembling, hypersensitivity to noise and lights, balance issues, proprioception issues, high pain sensitivity, sensitivity to sunlight exposure, reduced awareness of physical needs like hunger, as well as issues with menstruation). As I said, it's complicated. And now, I wasn't able to type this up, I copied it from a list I made over a long time, memory issues, you know. Now combine all of the above with an emphasis on the struggle to maintain such a thing as a journal of my symptoms (because ADHD [routines are hard, judgment of own symptoms is impaired] and memory issues), the struggles in communication connected (for many) with autism, as well as the stress and anxiety in the moment at a doctor's office after having gone through the hellscape that is public transport and waiting rooms into a far too bright environment with a ton of new inputs ranging from the doctor's family dog's picture on the shelf to the smell of the disinfectant - it's nearly impossible for me to get them to understand. I don't know to what degree it is a discrepancy between my communication (I don't exaggerate symptoms, I go to the doctor only if it has to be) and other people (some of whom go to the doctor over literally anything and will list all their sensations as potential symptoms, vastly exaggeration; at least from what you hear doctors and nurses complain about) and to what degree it is my doctors just simply not knowing what could be underlying and connecting my issues. But the most frustrating thing to me is that they don't understand WHY I'm still coming to see them after 5 times of them telling me they don't know what else to test for - even though I've told them very directly: If there is no way to heal or lessen my symptoms through medicine, I need access to social support networks for the disabled and chronically ill. That way, when I eventually am in a position where not being able to work for months at a time doesn't "just" make my master thesis have to happen faster, but actually makes me lose a job or unable to find one, I do not have to starve. That'd be lovely. It's unbelievable how often I've said it and how they're still not seeing it because it is invisible, I'm a student, I work at my own pace and in home office (regardless of the virus) because social anxiety and going to a learning space or library don't exactly mix well. I can write my papers from here. I can also spend a month or two TRYING to work from here. But I have good grades, I'm managing somewhat okay so far, so the doctors don't take me seriously when I say I've spent the last two months at home unable to work despite REALLY wanting to. They send me to mental health. My mental health team continues to treat me for the parts they can as best they can, but it's not enough. At least now I've finally gotten my therapist to look into signing me up with our social support networks on the basis of my mental health conditions. Maybe she'll actually get it done, maybe I'll eventually get a doctor who has heard of these symptom clusters before and will give me some diagnosis, because the unfortunate reality is that no diagnosis means no access to financial or physical aid. I live in Switzerland. We have it good. But not good enough. There's room for improvement and I fully do intend to work in the field of social support for those who need it once my education is done. Maybe not right away, maybe it'll take a few years of other experience first. But going through these various labyrinths trying to get support as somebody with physical issues, with mental issues, and without parents able to pay for my education, I am intimately familiar with the system and its flaws. And I want to help make it better. Dear goodness this is a wall of text, my apologies to anybody who read it and now feels they wasted their time, but it'd be a shame to delete it now.
Wow…I can relate to all of this! These are the kind of symptoms that I have as well, and getting help for it is so frustrating! I’m in the US, so there’s very little in the way of support here. As for the sensitivity to light, UA-camr Neurodivergent Rebel says that their migraines went away when they started wearing sunglasses indoors. Maybe it could help you too! I hope you can eventually get the help you need!
I enjoyed reading it, glad you didn’t delete it. Sorry you’re going through all that crap, glad you got to vent. Take care and good luck with your studies!
Thank you for this excellent video on dysautonomia. You're tips included a few that I will incorporate, especially the getting out of bed and getting into the bath. Sending you love, Jessica! 💜
Please do a video on accommodations for the disabled and chronically ill, at least for your needs anyway. I'm returning to school to become a librarian and want to know what I can do to give proper access to patrons.
I have Crohn's and no one has ever been able to offer me any suggestion as to why I have low blood pressure, feeling faint when standing, vertigo, temperature sensitivity... This has suddenly made everything make sense!
I have POTS and I have to say it has SO many different symptoms like way too many I can't keep up with all the crap my body pulls on me. It's just absurd how many symptoms I can be dealing with at one time.
I can't thank you enough for your help. I'm suffering from fibromyalgia, and dysautotopia seems to mirror the symptoms. But, your explanations of your symptoms will be most helpful.
I'm a nurse and I think you explained very clearly and simply what dysautonomia is and why it happens ! Always a pleasure to watch your videos (and also I'm french and I think your accent is deliciously british ✨ that's also a pleasure to hear)
I went to a cardiologist and instead of listening to me he decided i must have an eating disorder... sigh... someday, someday i'll be able to get some help.
I was misdiagnosed with an eating disorder before years later getting my POTS diagnosis, and, if I’m not mistaken, I think Jessica was misdiagnosed or mistreated with an eating disorder, too. I’m so sorry you’re having that experience, and I hope you’re able to keep looking for answers (even if you have to take a few breaks in between!). ❤️
I went and looked at the NHS, your in England. I thought I found my possible entry back to work since Long COVID. I really want my life back. Thank you for this amazing video.
Jessica you are a gem. Thanks for sharing your experiences AND your tips. Most importantly, it makes me feel less alone. But also the tips are always helpful. You're like the big sister we all need. I'm older than you, but still. You're my big sister 😂😍
Thank you so much for this video!!! I had Covid in December of 2020. My boss kept encouraging (threatening!) me to get back to work as quickly as possible, and to continue to push through my shifts even though it would take days and days to recover. I believe this actually made my condition worse. So important to listen to your body.
Im 14 and anorexic, and this friday i just got diagnosed with Dysautonomia, and inappropriate sinus tachycardia, and all i wanted to say was thank you. When the doctor had just told me about this i felt like my life had just been ruined but after doing research, i found you, and you have given me so much hope. i connected with you through so many of your experiences and symptoms you listed out and i figured out there are ways to outgrow this, and even though Dysautonomia will always be apart of my life i can learn to live with it. so thank you so much
Talk about timely. I've only just worked out hot showers send my BP through the roof, and cooling off sends it through the floor. Several months of feeling faint, almost hitting the floor at work, and sweating bullets while peeling vegetables suddenly makes sense. I'm taking my stories to my doctor and specialist this week. Good to know there are ways of managing it. Thank you!
Such a great video, thank you. I know your videos like this work particularly well because you're speaking from experience, but I'd love it if you were able to cover other conditions too (cough cough *fibromyalgia* cough)
Pretty sure I have this from Lyme disease, but didn't know it had a name. If it's just nice to know about it. And I a agree something about hearing my heartbeat makes me anxious.
This was so helpful ❤ I'm beginning my journey to find out why I'm so sick all the time. Its been super frustrating and overwhelming, but your videos help!
It’s hard but this platform helps so many with so many conditions. Stress and trying to explain to others about our illnesses who don’t get it being the hardest for many of us
I have mild dysautonomia, not severe enough to be any of the conditions you mentioned, but significant enough that it affects my life. I also have EoE and HSD, and I'm autistic.
15:27 the advice on baths is spot on. I don’t have the issues discussed in the video but I am Japanese and we are probably the biggest bath-loving people in the world so we talk about baths a lot lol. An issue we have in Japan is death in seniors from heat shock. Japanese love to take deep, hot, long baths so they are well and truly hot when they get out, with their blood vessels dilated to the max. But Japanese homes don’t have central heating so your house can be super cold unless the heat is on in that specific room, and bathrooms don’t have heaters). Note that japanese baths are fully enclosed, waterproof rooms that house a bathtub and a washing area. So if you close the door, your bathroom gets super hot and steamy, but right outside the door is your unheated sink and disrobing area. Think enclosed shower stall with a bath, if that helps). So you step out super warm and then bam! You are hit with a cold room and the heat shock can cause heart attacks and stroke. So a lot of modern Japanese homes have installed heating units and heated floors in bathrooms to help this problem. the same applies in the opposite direction. Like I said Japanese baths are super deep so if you fill it to the top the water can cover your shoulders. But going from cold house to just all of a sudden being surrounded by hot water + the water pressure can be a shock to the system. Japanese bathing etiquette requires you to wash yourself before getting in the tub since tub water is communal (between family in your home or between strangers in public baths) so your body needs to be squeaky clean before entering. But this also helps to acclimatize your body before entering the hot water. Plus you aren’t supposed to stand and wash your body - you sit on a stool, and the shower head is connected to a hose. You do this because if you stand you can splash others but it of course is rather logical - less risk of slipping or fainting and even if you do, much less harmful. Anyway all of this is to say that even people with functioning autonomic nervous systems should be aware of the stress sudden changes in temperature can cause and be mindful.
This was very informative. I have a few chronic conditions that I knew how to deal with and then came menopause....uggggg! Suddenly my body started reacting poorly to what had been working. Sometimes I feel no one understands but I watch your videos 🥰 You understand! Thank you!
Thank you for all that you do. It can be tiring to educate about physical and mental health challenges and then some. It’s also so important yet can feel like an immense task. You do so with such a grace, beauty, kindness, authenticity. I just wanted to say that I see and appreciate your videos
While I don't suffer from dysautonomia (my neurologist in fact still doesn't know what's happening with me) I suffer from migraines and other lovely stuff like not feeling temperature on my legs. Those tips are great. Even to people not suffering from any condition, you should take care of yourself, listen to your body, get yourself some sleep and drink enough. We all have only one health, as my grandma says, and you won't be granted another one to start over.
I have POTS and dysautonomia that affects my bladder and eyes as well. It is a pain to manage for sure! I'm super glad to see you making this video because often it's hard for people to find answers ❤️
Thanks for the video, I hadn’t heard of this. I have many of the symptoms, I have digestive issues, low blood pressure, passing out, dizziness, exhaustion and more. I’ve taken my symptoms to my GP and been mostly ignored, now I have something I can name when I go and have them look into.
Yeah, before it was actually being talked about being part of long covid, a lot of people in my EDS support group were already saying, hey, did not have POTS before but after I got covid it happened.
Thank you so much for this. I was dx'd with POTS around November after almost two years of symptoms, and I was doing pretty well for a while until I moved out on my own and started working full time, and I'm struggling so much rn. No one told me a lot of these tips, so thank you. And. It comes with so much grief. So thank you for both the acknowledgment of that and the reassurance.
I feel what you're saying so much... I too have POTS, dysautonomia, and EDS, among other things. The POTS has been flaring a lot lately, as has my IBS. Fun combo, that. Here's to hopefully better times for both of us.
Thank you for the reminder that it will not always be this bad. I suspect I have hEDS and sometimes I have "pain days" that make it hard to focus on anything except self-care, and I need to accept that and build my life around that. Some days are better... I can even go hiking, if I plan ahead for a rest day afterwards!
Thank you for being open about it, I was diagnosed at about 19/20 and years later its still absolutely horrendous sometimes but to know that there are others who have thriving and living the life I want for myself is amazing
I'm currently in the diagnosis phase of autonomic disorders. The stairs story was funny because I eventually made it a habit to consciously start increasing my breathing so I wouldn't get lightheaded. Also, my cardiologist said the irregular heartbeat is just something some folks have and is not a big idea. Also, was told by GI doctors that my GI inflammation and motility issues were my overuse of aspirin (but I don't take asprin/ibuprofen). Multiple times diagnosed with anxiety, trauma related disorders even though my symptoms are shared with family members across the country on my father's side. We have these symptoms, but always get blood tests results in the normal range - very frustrating. I fought this battle for decades and am hopeful I'll finally get a diagnosis instead of another dead-end.
I know people complain about it and no system is perfect, but, as an American, I basically want to weep about the fact that the US is the only first world nation without a national healthcare system like in the UK.
I have Dysautonomia related to Ehlers-Danlos Syndrome (and am currently in the process of formally confirming POTS). I spent this entire video thinking "Yes! All of this!" and will be linking it as a reference for the future to answer the many questions I get. This is a great resource to humanise Dysautonomia/POTS
Oh gosh, while I don't have dysautonomia, I can relate to a lot of this. Between diabetes, asthma, migraines, and heat sensitivity from migraine meds, I feel like I can barely do anything some days. If I don't get enough sleep and/or I'm stressed out, I have heart palpitations all day. I pretty much always have to wear sunglasses outside because of my light sensitivity. It feels like I have to control so much of my body, but also adapt to it at the same time.
I have Sjögren’s syndrome, which is also a connective tissue disease. Ive also experienced a lot of dysautonomia. I’ll break out in a face dripping sweat all of the time for absolutely no reason at all. Immediately after this, I then get goosebumps all over and will freeze. Just a never ending cycle
While watching this I suddenly remembered about how in high school I got banned from the weight room during gym because my body would forget to breathe while I was using the machines
Thanks for such an informative video! Thank you also for adding visual cues for Rupert. I'm not able to have my sound on and I love seeing him interact with you and, by extension, us.
*Captions are being made, thank you for your patience!*
The captions simply must include the baby noises
PLEASE PLEASE DO A VIDEO ON THE BILL ABBOTT JUST PASSED IN TEXAS . IT PUTS EVERY SINGLE TRANS YOUTH AND PARENT IN DANGER IN THE STATE IF TEXAS. THIS IS NOT OKAY, AND WE NEED WORD SPREAD!
i know you yourself obviously do not live in the states, but your audience is americans who can help make a difference in this. we need LGBTQ voices to speak up and spread the word.
@@theoohair1446 Hey i'm English & straight so i really don't know but It seems to me that Texas still lives in the days of the Wild West where "Men Are Real Men & Women Are Real Women"
@@susanmargaretwills6432 not really. Texas is extremely conservative state and currently has a bigot for governor. while they aren’t inherently sexist, the state government and general population is very homophobic and transphobic.
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!
Rupert is absolutely adorable 🥰
Agreed, I love the sound of a happy baby playing.
Right?! It’s a bonus
I loved the fact she showed the need to have your kid with you at work some times.
I agree! Rupert is so cute!
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 :)
thank youuuu
exactly
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 :)
I've got a bath bench and lowering bath seat, both from occupational therapy. I find the bath bench works well, but tends to leak a lot of water on to the floor, while the bath seat, fully lowered, allows the bathwater to just about cover my legs. I am seriously thinking of converting the bathroom to a wet room instead.
YES!! Love having a seat in the shower!
I bought a trendy,, ? bamboo stool looks coolish too! No more trying to balance
I finally ordered a shower chair after reading this comment. I’ve been back and forth on it for a while now, but this was the push I needed
Yes! I rely on my shower chair. Or, really, a tall stepstool chucked in my bathtub. The thing that really made that work for me was changing my shower head from a standard fixed one to a handheld one! I hated sitting in the spray, feeling like I was being rained on, but I love my handheld one more than words can say!
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!
I've noticed the same thing in American culture. My friend had bad experiences at her last job because of it. She was pressued to work despite how her stomach felt. Then she wasn't paid for that day because she didn't do much work since she needed to lie down so much. The people she worked with cornered her about how she shouldn't have come in that day despite the pressure to show up sick.
Over the next 2 months she was absent going to urgent care for her stomach, contracting the flu, and getting covid. She had notified the human resources manager before when her last day at her job would be. On her last day, the woman claimed to be unaware that she was quitting and fired her because of how many sick days she took. My friend's job was working at the help desk of a homeless shelter. You'd think a place like that would be more compassionate.
I used to work retail, and this is so true. It’s unfortunate that here in the US, the work-life balance pretty much doesn’t exist, and there’s very little support for disabled people.
Amen 🙏
i started listening to my body and immediately noticed just how broken it is!! i'm desperate to get to a doctor but the plague is ongoing lol
The American work culture is so messed up. And I particularly hate the fact that cashiers are made to stand the entire time. Why can’t they do their work seated like people who work at desks do? It would make the work much more accessible to many more people. There are plenty of other countries where they work from chairs, and it doesn’t have a negative effect on performance. It feels like cashiers are expected to stand as a sort of punishment for not having a “skilled” job and just being a “lowly” retail worker. It’s disgusting. 😡
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.
the fatigue is so debilitating sometimes :/
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
A friend of mine who's had Lyme for several decades has told me several times that you have to be in charge of your health - because just a doctor isn't going to cut it, sadly. (I'm 4 years into Lyme and can conform.)
Amen to that! When I was diagnosed celiac almost 20 years ago, all my doctor's office said was, don't eat gluten. Not that they had any advice on how to read labels! I had to figure it all out on my own. They even sent me to a nutritionist that had no idea how to handle the gf diet.
@@kellylarsen1668 my daughter was diagnosed 11 years ago and we got the same thing. Not even an explanation of what gluten even was or a recommendation for a nutritionist. Just "it's coeliac, gluten free diet from here on in, bye" Thank God for Google!
@@kellylarsen1668 oh and the nurses in the hospital where we got diagnosed weren't even sure what to give her. One tried to give her wheat bix of all things 🤦♀️
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!
I was frustrated too when I found out it is fairly common for women (some men get it too) and yet no doctor connected the dots for so long!
as someone with POTS (and cfs) this sounds extremely similar to what i experience, so definitely try to get that diagnosis !! its rather difficult in my experience to find people who specialise in POTS/disautonomia but when you do its absolutely brilliant. i still struggle and you may too of course but until you can get the professional help you need i definitely recommend following tips intended for those who have a diagnosis :> best of luck !!
They are lothe to diagnose people with a syndrome for which they have no cure.
@@Myrafly I don't know I feel diagnosis for dysautonomia should be higher since it can be controlled to have zero symptoms for a large chunk of patients with either medication, salt pills, or lifestyle changes, so it can be functionally gone for a lot of patients, but only if it's ever diagnosed. Plus having a terrible illness ruining your life but NOT being diagnosed with what it is causes a humongous mental and emotional burden, I thought i was dying when it got severe in my preteens and really got Depression from being convinced I was dying and I felt so much butter once I had a diagnosis and just could get rid of all the uncertainty a lack of diagnosis gave.
@@boostaboo1096 thankfully I've been on a high salt, high water intake regiment for a year or so and it is helping, though there are still so many days where I stand up and go through a few ever-worsening waves of dizziness and light-headedness with that good old tunnel vision and sparkles. Fun times! But I definitely notice when I'm low on salt or dehydrated. I cease to be able to function at all!!
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.
can you paste any link to the research on the link between PT and long COVID?
Physical therapy helped me with some of my symptoms of long Covid.
+
@@bonnieholt3135 It's probably very different from person to person, because Long Covid isn't one single illness, it's probably a group of illnesses that have different mechanisms.
So, some symptoms may be alleviated by PT, while others get worse.
I really hope that the complexity of this issue is being acknowledged by doctors and that they find the best treatment for everybody. Until then, patients sadly need to take things into their own hands and try to find the best course of action for themselves as individuals.
Impressive delivery of information from Jessica. Regarding Long Covid, there wasn’t much knowledge in 2020 so one muddled through with a bit of snake oil mixed with pointers from published medical research. In 2021 I was referred by Post Cvid clinic to the CFS/ME clinic and started on the ‘graduated exercise’ program. I fared reasonably well on this, when I stayed within the limits I soon discovered, recovered about 30% of my old self. Unfortunately a combination of a bad cold, stress and overdoing it knocked me back in the Autumn of that year and recovery has been microscopic since then. My GP then mentioned POTs as an issue they now think associated to Long Cov. but nothing further. Have been referred back to the Post Covid clinic and now on a program called ‘therapeutic rest’ to try and set a physical ‘baseline’ from which to work up from, basically I have to take four granny naps of thirty minutes long during the day for the next couple of months. So we’re still groping about in the dark a bit, presumably with an autoimmune disorder.
I'm a covid survivor who ended up with dysautonomia! At 24 before vaccines were available I caught covid at my essential shipping job and now I'm 26, trying to get on disability, and been formally diagnosed with PoTS, CF/ME, and general dysautonomia. I'm still struggling almost two years out with internalized ableism and the capitalistic ideal that worth is defined by work. Like I'm worth just as much now when it's an achievement that I can sit up for an hour at a time as I was working in a warehouse walking miles a day.
I’m so happy that you beat Covid. But, I’m sorry about the lasting effects on your body. I just had my last appointment for disability determination. I broke my back and I have Scheurman’s Kyphosis’. So I am pretty much miserable 24/7 and not able to do hardly anything anymore. Don’t give up on trying for the disability. You definitely need it and as a general rule they always deny you the first time you apply. Hang in there sweetheart and take care of yourself🤗
I got Covid March 2020 and I’m diagnosed with long Covid, POTS, cfs and MCAS. Like you I went from being fit, I used to run every day for half an hour to now needing an electric wheelchair. I’m sorry you are going through this, but you are not alone.💐
In the US, I went to a company that took my case. The law firm did the trick!
I'm so sorry that you are going through this, it took 2 years for my dad to get disability after a car accident, he met a woman who had a broken back who got turned down for disability, it wasn't until she was diagnosed with Depression that she got it ,my dad to after being hurt and fighting for 2 yr he was depressed and got it for that 🙄🤷♀️ Also we got a disability lawyer and it helped Lots. I wish you lots of luck and I hope you feel better 😊💜🖤
The reject everyone's first application, so it's not anything you did wrong, Good luck in the future. I'm heartbroken to hear of young people having to reorder their lives to accommodate long Covid. I developed it about the same time as you did, but I'm retired. I've been finding a system to be useful and keep myself entertained since I turned 65. That doesn't help the jarring change from an active lifestyle to a sedentary one.
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 :)
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
Hang in there sweetheart!! It becomes easier to manage with time & acceptance (which was the hardest part for me 🙈). Remember that you ARE NOT alone!! 💜🙏🏻
I didn’t have it for 14 months like you (I’m so sorry), but I was still off for 3 months or so. It was awful.
I've had M.E. for 30 years and some people still think it's 'not a thing'. I'd love for them to spend a few months like this 😖
@@JaneAustenAteMyCat PREACH!! 😂 I tell people constantly I would trade places in a heartbeat to be perfectly healthy again!
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.
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
My doctor told me electrolyte drinks are good because they make your body retain water a bit better and boost your blood volume!
I was diagnosed with POTS and a slight heart murmur at 18. It’s only gone downhill over the last ten years. But I’m still kicking!
For myself I switched from electrolyte drinks to straight up salt pills, but I have POTs and that might be too much electrolytes for long covid I don't know
I, too, have found out that electrolyte drinks help with my long covid!
They are great if you have GI issues that interfere with mineral digestion too. It helps keep the salt balance and avoid some of the brain fog-> in my experience.
@@ivechang6720 i was also told the same thing. I drink a lot of nutrition shakes and electrolyte drinks because it’s all i can handle some days and because even when i can handle other stuff i don’t feel like I’m getting enough nutrition.
Bonus: vitamins daily too.
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.
Thanks to EDS, POT, and MCAS (a condition that often accompanies the two that is basically “allergies all the time for no reason!”) I’ve “joked” for the last two years that, barring the fever/loss of taste & smell, I could never tell if I was developing COVID symptoms, because I feel like that all the time anyway. *Maybe she’s born with it, maybe it’s SARS-Co-V-2.*
I’ve been feeling extra POTSy lately so this was a timely video. “*Oh my god, I’m dying*…no, no you’re not” really IS the best way to describe it. 😂
Same and same, though I do get random fevers on the reg, so even that won't tip me off.
So I'm in POTS remission after COVID-19 and want to share what worked for me. My doctor had me do aerobic exercises that are more horizontal. 4 weeks of rowing, 4 weeks of the elliptical. A month ago I added megaformer Pilates. Still having MCAS issues though. A DAO supplement and a probiotic helped a ton. Cromolyn helped too but my insurance stopped covering it!
@@rmh8940 sounds like your doc recommended the CHOP POTS protocol, or something like it! I’ve definitely heard it works for a lot of people, but I never really saw much improvement with it when I was using it in PT.
Thank you for explaining. I was diagnosed with PoTS in 2020 after having Covid in 2019. It’s changed my life so much and I still don’t know much about it.
Hang in there darling ! It’s the most difficult at the start but you will learn how to live with it. Just remember that you ARE NOT alone… if we can help in any way just ask! Have a blessed day 💜🙏🏻
It’s rough. Remind yourself it’s okay to have days where all you are capable of is barely stumbling to the bathroom, and having to lay in bed. It’s okay to need help.
I’ve had pots probably more than half my life but was only diagnosed at 18, ten years ago.
Electrolyte drinks if you have low blood pressure help, and don’t overdo it.
Don’t be me and push yourself too far and land in hospital as a result.
@@labaccident2010 YES!! Liquid IV is an absolutely wonderful resource when it comes to electrolytes that really work well! On top of their accessibility, they also have programs that help offset costs to patients who have been diagnosed with POTS, ANS, SICCA, etc., etc.!! It’s always a plus when you can get really great hydration plus vitamins & minerals w/o worrying about sugar while also not feel like your drinking salt water 😝!
So I'm in POTS remission after COVID-19 and want to share what worked for me. My doctor had me do aerobic exercises that are more horizontal. 4 weeks of rowing, 4 weeks of the elliptical. A month ago I added megaformer Pilates.
For the orthostatic hypotension, I've found that thigh-high compression stockings really help me! And they can certainly look retro with the elastic that looks like garters!
Thank you for
1. being fabulous
2. the education
:)
Thank you, Jessica. 🙏. You present these things in such a wonderful way that I can understand what is going on. Thank you, too, for adding to our knowledge. And the fact that you can pronounce those incredibly long multiple syllable words is impressive as heck. I am in awe. I am also in awe, that even though we can see you are not feeling well….at all….you still look gorgeous and are covering this subject matter in a wickedly intelligent manner. You are an exceptional human being. ❤️. Hearing Rupert in the background is a beautiful plus. Thank you for sharing his part of the conversation. ☺️
I have (a relatively mild form of) dysautonomia that particularly effects my skin, digestion and blood pressure. When I got covid, I lost a lot of my strength, fitness and confidence - glad to see more people are learning about dysautonomia, but sad that that’s because more people are suffering
I have never felt a video in my core this strongly. I've had Pots since about 2nd or 3rd grade, but wasn't diagnosed until junior year of high school. For me, stress is my biggest trigger. I remember just falling over at least twice a week in college...Love that you are bringing awareness to all the aspects of this!
This was very useful! I had Covid and had to put my entire life on pause for 9 months until I recovered. The shower thing is very true and even scarier when you live alone 😬😄
I got a shower chair a few weeks ago because I got COVID and my dysautonomia flared HORRIBLY and even though I’m back to my baseline(thank gods) I freaking adore it. My POTS is well enough managed that i don’t *need* it, but it is SUCH a game changer.
I have had arthritis for years and have had all of these symptoms that my healthcare providers just couldn't pinpoint. It is so nice to know this is why
I got diagnosed with Post-Covid Syndrome this year. Literally my whole life taken from me. Your videos have helped my mental health this year and coming to terms with my new life as a disabled person. Keep doing what you're doing, and happy parenting!
I have EDS and POTS - you mentioned tight clothing as a "no". In the states at least doctors prescribe compression stockings, either knee highs or full leg, and it really does help! Part of the problem is the blood wants to pool in my legs when I stand up. My legs turn red, purple, blotchy, etc. The compression gear keep this from happening!
I wear compression socks/leggings and a corset and they help a lot with the orthostatic intolerance part of POTS, but they also make the temperature regulation worse, depending on what else I’m wearing. compression socks + wide leg pants? usually fine, but not always. compression socks + skinny jeans? actual hell on earth. Same with the corset. So it’s definitely one of those things that can be a help or a hurt depending on the person/day/weather/symptoms/etc.
I have a similar issue.. blood is almost always pooling to my feet leaving them swollen & red.
Compression seems helpful often but it’s not my favorite feeling to wear
I have to wear leg and arm compression sleeves. I have POTS, complex regional pain syndrome and fibromyalgia. But I can't stand anything touching my left sternum or shoulder so wearing tight shirts or a bra are awful. These diseases are so weird and make no sense. It's a roller coaster. Thank you for shedding light on us ❤️
Worst part for me? Nerve pain it sucks so much, and Heat Intolerance(in florida) I die every summer it feels
I'm in the process of getting my dysautonomia narrowed down (they suspect POTS, but I'm having the damnedest time getting a TILT test done). Thanks, as always, for making these things much easier to understand and explain to others.
I did some research into POTS when my apple watch was telling me I had irregular/fast heartbeat with no physical exertion. One week of wearing those heart monitors and one ultrasound later and fortunately there’s nothing anatomically wrong with my heart. For some reason it just works harder than it needs to.
Turns out that was a big factor in my fatigue. So yeah thx Apple Watch
Remembering all the yoga teachers telling us to be aware of our breathing but not control it. Impossible!! 😵
I have autism and all i have to say is:
Autistics 🤝 Folks with dysautonomia
Light and noise
Sensitivity
I am both autistic and experience basically all the symptoms of dysautonomia that Jessica described (no wonder lol, I have type 1 diabetes and other chronic illnesses) so noise and light reduction is so important to prevent terrible terrible migraines.
Try living with both:
ADHD 🤝 POTS/dysautonomia
Brain fog, forgetfulness,
inability to focus
Really made college fun 😭
Very common comorbidity!
@@sylviasinsabaugh772 bro i have bipolar disorder and woof you said it
I absolutely love the videos where we can hear the baby in the background. It is not at all distracting.
I got my POTS and EDS dx yesterday after learning about it from your videos! I've been struggling with these for 9 years and it's great to finally have validation. Please keep up the lovely work, Jessica
So I'm in POTS remission after COVID-19 and want to share what worked for me. My doctor had me do aerobic exercises that are more horizontal. 4 weeks of rowing, 4 weeks of the elliptical. A month ago I added megaformer Pilates.
I live in a tiny 3rd floor apartment with no lift. I have autism, MS and EDS. My joints constantly hurt. I strain my ankles on the regular. I don't have a bathtub, and my shower is to tiny for a shower stool. I know I'm not in such a bad situation. I get some disability money from the french government. I have a stable roof over my head and I can afford food. But sometimes I'm just tired of not being able to adjust my living situation to be more comfortable/reduce my pain...
Thank you for letting me vent. ^^
❤️
I felt so seen at 13:26 when you put the rainbow of crisps lol. I have POTS and Narcolepsy and I crave salt all day. My sleep doctor diagnosed me by asking me seemingly random questions and one of them was 'do you crave crunchy salty things like chips?' and I was like hOw did you KnOW! This video was super informative, I didn't know that POTS was under the umbrella of dysautonomia! I definitely feel like loss of control is a huge part of it- pre-diagnosis I would beat myself up so much about sleeping through things and getting dizzy when I stood cause I just thought it was my actions/behaviors that were causing it. Thank you for always being so warm and positive, Jessica, and for sharing your experiences and insights!
Yeah… I’ve often wondered if my sometimes positively rabid need for crunchy salty things is a symptom of something
I also experience a bunch of these symptoms on a normal day. Shower chair and electrolyte beverages are a lifesaver for me. I have Dysautonomia due to a genetic condition so I've been dealing with this forever. So grateful for your videos, Jessica--they were super helpful right after I got diagnosed. Also gotta love the fact that this video is telling me that things I experience are part of dysautonomia when I didn't know they were. My mom always felt it was so weird that I didn't swear and now I have an answer!
Thanks for bringing up electrolyte beverages.🙂👍🍶
I was going to say electrolytes (in whatever form works best) are always helpful.
Using one with all 4 major electrolytes if you can (sodium, magnesium, potassium, calcium) and isotonic glucose is honestly one of the greatest tips I've ever received. Feel out of whack? Have a glass. Feel a crash? Glass. Can't tell what's amiss? Glass. Stiff and don't know why? Glass.
Only thing is, get doc's clearance before you do, as all 4 when out of whack can cause problems, and some people can't supplement all 4 (ie. sodium & potassium with certain heart conditions).
The biggest perk of creating a channel: having videos to point people towards, when they really just don't get it.
Great video! I’m iron deficient and have a lot of these same symptoms. Long Covid is also possibly linked to nutritional deficiencies, especially iron and b12. It’s crazy how much Covid can mess you up 😬
Yes! I have both Long Covid and low (like, empty) levels of iron in my body and no one has no clue what symptoms are LC and what are due to the iron situation and I'm so fed up with this all. It feels good to read similar stories though.
@@eveningbun I agree. It’s nice not to feel alone. Had a check up today and I’ve actually improved my iron but still have symptoms so maybe it’s LC because I was sick with it last fall. Who knows. Anyway, hope you get to feeling better!
Thank you! I didn't realize that my digestive issues were connected to my dysautonomia! I also have exercise intolerance, POTS, migraines, and many other issues. Connecting the dots when my symptoms have gradually come on over the last decade has been frustrating and difficult. You are such an inspiration, and help with the ever evolving brain fog!
I've just been diagnosed with dysautonomia and you post this video. For some people getting a diagnosis is harder. In my country for example, it is very rare to be diagnosed with this condition. Plus, other people don't understand why I can be riding a bike one day and unable to work the next. I highly appreciate this video because it speaks to a huge truth, the feeling of not knowing what kind of day one will have is quite hunting.
Oh girl, such an important video! Only coming out the other side of long covid now (or just going through a good patch)…caught it in Feb and it’s been A TIME! My nervous system has been all over the place. Crazy pins and needles all over, heart palpitations, dizziness when standing up, patches of skin that get hot but aren’t hot to touch, a random stammer that comes and goes! My gaps between flare-ups are getting longer, thank goodness 😭 The worst thing that was happening during my long covid was the nerve pain in my face and head, and blood pooling in capillaries/veins in my fingers and arms 😩 Noise sensitivity is hard with kids. The fatigue, christ. That’s gone thankfully. I had covid years ago and was vaccinated so this really took me by surprise! The Irish medical system hasn’t been helpful at all unfortunately x
Solidarity to you! What a nightmare… here’s to hoping Long COVID-19 symptoms are taken more seriously as they’re understood with time ❤️
I am in the midst of getting a dysautonomia diagnosis and just got tested for POTS, so this video coming up in my notifications made me very excited
So many things to now think about. I suffer from bouts of low blood pressure I will be going about my day, when "BAM" I'm on the floor. Good advice about getting things moving before you get out of bed and also drinking more water. Thanks Jessica. Loved hearing Rupert in the background. Hope you are feeling better soon.
BATH TIP! Thank you. I always get in, sit for like a minute, get exceptionally dizzy and have to get out. I'll give this a go!
This video screamed my name since my thermostat doesn't work in my body, and my heart is too small, so I always am too hot or too cold and falling over. Tons of fun. The GP's here say I have the medical history of a 70 yr old woman and I am not near that age lol
I love the listing of your relatives in the NHS turned from you telling us to you telling Rupert, that was super sweet!
I was diagnosed with dysautonomia not long after being diagnosed with CRPS in 2013. I think it’s gotten worse over the years. Pure exhaustion and dizziness are the symptoms I experience the most. I’ve been amazed by the number of doctors and nurses who I’ve had to explain dysautonomia (& CRPS) to, but it has been slightly better lately. I think it’s finally being taught in medical schools, thank goodness!
Little Rupert blowing kisses and babbling in the background is just adorable 🥰
I will always enjoy happy baby noises in the background. Go Rupert!
Temperature regulation is such a weird one to manage, I've been in a 73°F house in the middle of summer and been so cold I had to step out into the 100°+ heat to warm myself like a lizard
Hearing your little man joining the conversation in the video lifted my soul.
I'm always happy to watch another video of yours on those general struggles, I've been struggling with /something/ for the last 12 years or so, but progress in getting professionals to understand is really slow. It is complicated when you have both mental health issues (Depression and ADHD diagnosed, Autism suspected and on waiting list, which only partially explain the mental symptoms of: mood swings, irritability, anxiety, hyperactivity, hyperemotionality, memory issues, constant stress, circling thoughts, etc.) and physical symptoms that are not THAT extreme but also kinda common on their own or in lower frequencies (headaches, dizzy spells, fatigue, trouble sleeping, trouble getting up, very low fitness, lack of energy, terrible temperature regulation, trembling, hypersensitivity to noise and lights, balance issues, proprioception issues, high pain sensitivity, sensitivity to sunlight exposure, reduced awareness of physical needs like hunger, as well as issues with menstruation). As I said, it's complicated. And now, I wasn't able to type this up, I copied it from a list I made over a long time, memory issues, you know. Now combine all of the above with an emphasis on the struggle to maintain such a thing as a journal of my symptoms (because ADHD [routines are hard, judgment of own symptoms is impaired] and memory issues), the struggles in communication connected (for many) with autism, as well as the stress and anxiety in the moment at a doctor's office after having gone through the hellscape that is public transport and waiting rooms into a far too bright environment with a ton of new inputs ranging from the doctor's family dog's picture on the shelf to the smell of the disinfectant - it's nearly impossible for me to get them to understand. I don't know to what degree it is a discrepancy between my communication (I don't exaggerate symptoms, I go to the doctor only if it has to be) and other people (some of whom go to the doctor over literally anything and will list all their sensations as potential symptoms, vastly exaggeration; at least from what you hear doctors and nurses complain about) and to what degree it is my doctors just simply not knowing what could be underlying and connecting my issues. But the most frustrating thing to me is that they don't understand WHY I'm still coming to see them after 5 times of them telling me they don't know what else to test for - even though I've told them very directly: If there is no way to heal or lessen my symptoms through medicine, I need access to social support networks for the disabled and chronically ill. That way, when I eventually am in a position where not being able to work for months at a time doesn't "just" make my master thesis have to happen faster, but actually makes me lose a job or unable to find one, I do not have to starve. That'd be lovely. It's unbelievable how often I've said it and how they're still not seeing it because it is invisible, I'm a student, I work at my own pace and in home office (regardless of the virus) because social anxiety and going to a learning space or library don't exactly mix well. I can write my papers from here. I can also spend a month or two TRYING to work from here. But I have good grades, I'm managing somewhat okay so far, so the doctors don't take me seriously when I say I've spent the last two months at home unable to work despite REALLY wanting to. They send me to mental health. My mental health team continues to treat me for the parts they can as best they can, but it's not enough. At least now I've finally gotten my therapist to look into signing me up with our social support networks on the basis of my mental health conditions. Maybe she'll actually get it done, maybe I'll eventually get a doctor who has heard of these symptom clusters before and will give me some diagnosis, because the unfortunate reality is that no diagnosis means no access to financial or physical aid. I live in Switzerland. We have it good. But not good enough. There's room for improvement and I fully do intend to work in the field of social support for those who need it once my education is done. Maybe not right away, maybe it'll take a few years of other experience first. But going through these various labyrinths trying to get support as somebody with physical issues, with mental issues, and without parents able to pay for my education, I am intimately familiar with the system and its flaws. And I want to help make it better. Dear goodness this is a wall of text, my apologies to anybody who read it and now feels they wasted their time, but it'd be a shame to delete it now.
Wow…I can relate to all of this! These are the kind of symptoms that I have as well, and getting help for it is so frustrating! I’m in the US, so there’s very little in the way of support here. As for the sensitivity to light, UA-camr Neurodivergent Rebel says that their migraines went away when they started wearing sunglasses indoors. Maybe it could help you too! I hope you can eventually get the help you need!
I enjoyed reading it, glad you didn’t delete it. Sorry you’re going through all that crap, glad you got to vent. Take care and good luck with your studies!
Thank you for this excellent video on dysautonomia. You're tips included a few that I will incorporate, especially the getting out of bed and getting into the bath. Sending you love, Jessica! 💜
Please do a video on accommodations for the disabled and chronically ill, at least for your needs anyway. I'm returning to school to become a librarian and want to know what I can do to give proper access to patrons.
I have Crohn's and no one has ever been able to offer me any suggestion as to why I have low blood pressure, feeling faint when standing, vertigo, temperature sensitivity... This has suddenly made everything make sense!
I have POTS and I have to say it has SO many different symptoms like way too many I can't keep up with all the crap my body pulls on me. It's just absurd how many symptoms I can be dealing with at one time.
I can't thank you enough for your help. I'm suffering from fibromyalgia, and dysautotopia seems to mirror the symptoms.
But, your explanations of your symptoms will be most helpful.
I'm a nurse and I think you explained very clearly and simply what dysautonomia is and why it happens ! Always a pleasure to watch your videos (and also I'm french and I think your accent is deliciously british ✨ that's also a pleasure to hear)
I went to a cardiologist and instead of listening to me he decided i must have an eating disorder... sigh... someday, someday i'll be able to get some help.
I was misdiagnosed with an eating disorder before years later getting my POTS diagnosis, and, if I’m not mistaken, I think Jessica was misdiagnosed or mistreated with an eating disorder, too. I’m so sorry you’re having that experience, and I hope you’re able to keep looking for answers (even if you have to take a few breaks in between!). ❤️
@@booksinbed thank you for your comment, you're very kind. It sucks not to be taken seriously but i'll just keep pushing untill i get an answer :)
I have POTS and NCS and I really hope the increased attention to dysautonamia will increase research and treatment options.
Definitely in a bad period with my dysautonomia right now. Thanks for the reminder that it won't last forever. :)
I went and looked at the NHS, your in England. I thought I found my possible entry back to work since Long COVID. I really want my life back. Thank you for this amazing video.
Jessica you are a gem. Thanks for sharing your experiences AND your tips. Most importantly, it makes me feel less alone. But also the tips are always helpful. You're like the big sister we all need. I'm older than you, but still. You're my big sister 😂😍
Thank you so much for this video!!! I had Covid in December of 2020. My boss kept encouraging (threatening!) me to get back to work as quickly as possible, and to continue to push through my shifts even though it would take days and days to recover. I believe this actually made my condition worse. So important to listen to your body.
Im 14 and anorexic, and this friday i just got diagnosed with Dysautonomia, and inappropriate sinus tachycardia, and all i wanted to say was thank you. When the doctor had just told me about this i felt like my life had just been ruined but after doing research, i found you, and you have given me so much hope. i connected with you through so many of your experiences and symptoms you listed out and i figured out there are ways to outgrow this, and even though Dysautonomia will always be apart of my life i can learn to live with it.
so thank you so much
Talk about timely. I've only just worked out hot showers send my BP through the roof, and cooling off sends it through the floor. Several months of feeling faint, almost hitting the floor at work, and sweating bullets while peeling vegetables suddenly makes sense. I'm taking my stories to my doctor and specialist this week. Good to know there are ways of managing it. Thank you!
Such a great video, thank you.
I know your videos like this work particularly well because you're speaking from experience, but I'd love it if you were able to cover other conditions too (cough cough *fibromyalgia* cough)
Pretty sure I have this from Lyme disease, but didn't know it had a name. If it's just nice to know about it. And I a agree something about hearing my heartbeat makes me anxious.
My good friend Rena was diagnosed with this unfortunately. She's changed a lot but I wish her a speedy recovery every day 🙏
One day, youtubers will learn that we like when their kids and/or pets are heard in the background
This was so helpful ❤ I'm beginning my journey to find out why I'm so sick all the time. Its been super frustrating and overwhelming, but your videos help!
It’s hard but this platform helps so many with so many conditions. Stress and trying to explain to others about our illnesses who don’t get it being the hardest for many of us
I have mild dysautonomia, not severe enough to be any of the conditions you mentioned, but significant enough that it affects my life. I also have EoE and HSD, and I'm autistic.
Baby is adorable. Don't apologize for it. Enjoy hearing him!❤️❤️
15:27 the advice on baths is spot on. I don’t have the issues discussed in the video but I am Japanese and we are probably the biggest bath-loving people in the world so we talk about baths a lot lol. An issue we have in Japan is death in seniors from heat shock. Japanese love to take deep, hot, long baths so they are well and truly hot when they get out, with their blood vessels dilated to the max. But Japanese homes don’t have central heating so your house can be super cold unless the heat is on in that specific room, and bathrooms don’t have heaters). Note that japanese baths are fully enclosed, waterproof rooms that house a bathtub and a washing area. So if you close the door, your bathroom gets super hot and steamy, but right outside the door is your unheated sink and disrobing area. Think enclosed shower stall with a bath, if that helps). So you step out super warm and then bam! You are hit with a cold room and the heat shock can cause heart attacks and stroke. So a lot of modern Japanese homes have installed heating units and heated floors in bathrooms to help this problem. the same applies in the opposite direction. Like I said Japanese baths are super deep so if you fill it to the top the water can cover your shoulders. But going from cold house to just all of a sudden being surrounded by hot water + the water pressure can be a shock to the system. Japanese bathing etiquette requires you to wash yourself before getting in the tub since tub water is communal (between family in your home or between strangers in public baths) so your body needs to be squeaky clean before entering. But this also helps to acclimatize your body before entering the hot water. Plus you aren’t supposed to stand and wash your body - you sit on a stool, and the shower head is connected to a hose. You do this because if you stand you can splash others but it of course is rather logical - less risk of slipping or fainting and even if you do, much less harmful. Anyway all of this is to say that even people with functioning autonomic nervous systems should be aware of the stress sudden changes in temperature can cause and be mindful.
This was very informative. I have a few chronic conditions that I knew how to deal with and then came menopause....uggggg! Suddenly my body started reacting poorly to what had been working. Sometimes I feel no one understands but I watch your videos 🥰 You understand! Thank you!
Thank you for all that you do. It can be tiring to educate about physical and mental health challenges and then some. It’s also so important yet can feel like an immense task. You do so with such a grace, beauty, kindness, authenticity. I just wanted to say that I see and appreciate your videos
While I don't suffer from dysautonomia (my neurologist in fact still doesn't know what's happening with me) I suffer from migraines and other lovely stuff like not feeling temperature on my legs. Those tips are great. Even to people not suffering from any condition, you should take care of yourself, listen to your body, get yourself some sleep and drink enough. We all have only one health, as my grandma says, and you won't be granted another one to start over.
I have POTS and dysautonomia that affects my bladder and eyes as well. It is a pain to manage for sure! I'm super glad to see you making this video because often it's hard for people to find answers ❤️
I’ve had dysautonomia for 24 years. This was the best explanation of it I’ve heard and I’ve seen the top drs here 😆.
Love hearing how happy your son is entertaining himself. Have him do that more often!
Thanks for the video, I hadn’t heard of this. I have many of the symptoms, I have digestive issues, low blood pressure, passing out, dizziness, exhaustion and more. I’ve taken my symptoms to my GP and been mostly ignored, now I have something I can name when I go and have them look into.
A collab with the NHS?!?! CONGRATULATIONS for this wonderful recognition 😊
Yeah, before it was actually being talked about being part of long covid, a lot of people in my EDS support group were already saying, hey, did not have POTS before but after I got covid it happened.
Thank you so much for this. I was dx'd with POTS around November after almost two years of symptoms, and I was doing pretty well for a while until I moved out on my own and started working full time, and I'm struggling so much rn. No one told me a lot of these tips, so thank you. And. It comes with so much grief. So thank you for both the acknowledgment of that and the reassurance.
Secondary Dysautonomia for years from New Daily Persistent Headache. Laying down, drinking water, and salt are always my go-to’s as well.
4:49 She says "Ashkenazi Jewish heritage," not "ask your Jewish heritage," for anyone confused by the subtitles.
I feel what you're saying so much... I too have POTS, dysautonomia, and EDS, among other things. The POTS has been flaring a lot lately, as has my IBS. Fun combo, that. Here's to hopefully better times for both of us.
Thank you for the reminder that it will not always be this bad. I suspect I have hEDS and sometimes I have "pain days" that make it hard to focus on anything except self-care, and I need to accept that and build my life around that. Some days are better... I can even go hiking, if I plan ahead for a rest day afterwards!
I have this too :( the tachycardia has been getting worse lately. It's so discouraging and depressing sometimes
Thank you for being open about it, I was diagnosed at about 19/20 and years later its still absolutely horrendous sometimes but to know that there are others who have thriving and living the life I want for myself is amazing
Thank you for including Lyme in the list. Much appreciated.
I'm currently in the diagnosis phase of autonomic disorders. The stairs story was funny because I eventually made it a habit to consciously start increasing my breathing so I wouldn't get lightheaded. Also, my cardiologist said the irregular heartbeat is just something some folks have and is not a big idea. Also, was told by GI doctors that my GI inflammation and motility issues were my overuse of aspirin (but I don't take asprin/ibuprofen). Multiple times diagnosed with anxiety, trauma related disorders even though my symptoms are shared with family members across the country on my father's side. We have these symptoms, but always get blood tests results in the normal range - very frustrating. I fought this battle for decades and am hopeful I'll finally get a diagnosis instead of another dead-end.
I know people complain about it and no system is perfect, but, as an American, I basically want to weep about the fact that the US is the only first world nation without a national healthcare system like in the UK.
I have Dysautonomia related to Ehlers-Danlos Syndrome (and am currently in the process of formally confirming POTS). I spent this entire video thinking "Yes! All of this!" and will be linking it as a reference for the future to answer the many questions I get. This is a great resource to humanise Dysautonomia/POTS
Oh gosh, while I don't have dysautonomia, I can relate to a lot of this. Between diabetes, asthma, migraines, and heat sensitivity from migraine meds, I feel like I can barely do anything some days. If I don't get enough sleep and/or I'm stressed out, I have heart palpitations all day. I pretty much always have to wear sunglasses outside because of my light sensitivity. It feels like I have to control so much of my body, but also adapt to it at the same time.
Rupert in the background is absolutely adorable!
I have Sjögren’s syndrome, which is also a connective tissue disease. Ive also experienced a lot of dysautonomia. I’ll break out in a face dripping sweat all of the time for absolutely no reason at all. Immediately after this, I then get goosebumps all over and will freeze. Just a never ending cycle
While watching this I suddenly remembered about how in high school I got banned from the weight room during gym because my body would forget to breathe while I was using the machines
Thanks for such an informative video! Thank you also for adding visual cues for Rupert. I'm not able to have my sound on and I love seeing him interact with you and, by extension, us.
That’s super helpful. I hadn’t considered a health diary, but that’s applicable for almost any chronic condition and how to make life better.