Postural Orthostatic Tachycardia Syndrome - Blog Posts

As a British person living with severe M.E., (plus fibromyalgia and some other issues), I would ask that you please sign and share this petition to get Royal Devon and Exeter NHS Foundation Trust to make accommodations for Alice Barrett, who has very severe M.E. and P.O.T.S. and is currently being treated in Exeter Hospital.

They are refusing to feed her via a nasogastric tube in such a way that takes into account her specific needs - and despite an M.E. specialist saying it's safe to do so - because it isn't in accordance with their hospital guidelines.

Alice needs help, so that she can be fed in a way that won't compromise her health, and potentially permanently worsen her symptoms.

Please sign and share this petition!

Petition · Save Alice Barrett's Life · Change.org

Edit: I paid to blaze this post, so it would reach as many people as possible, but sadly, the Tumblr moderators have rejected this, so this post is not sponsored as I intended - I don't know why. If Alice's family and friends see this post, please know that I tried! 🤷🏻‍♀️

Hey gang, I learned this cool fact so you don’t have to:

If you have POTs and you’re getting a filling or anything that requires a local anesthetic— ask them if it contains epinephrine

Epinephrine, ie—adrenaline—DOES NOT MIX WITH POTS

It’s not common knowledge for most dentists and doctors so give them a heads up so you can get an alternative

Bc the result is the worst POTs flare ever….trust me

My bpm went from 95 to 165 after the injection and it was NOT a cool, chill time

In conclusion:

POTs + epinephrine = NOT A FUN TIME

When I said I needed pots, THIS WASN’T WHAT I MEANT

Does ANYBODY with pots have any tips on how to make some kind of progress with exercise, or at least not be completely out of spoons after? I miss running sm, and it's driving me crazy

Has anyone cracked the code to not being completely exhausted 24/7? I feel like I can only get my obligations done before it's right back to bed

The deafening ear ringing every time I stand up is going to drive me insane

Any other chronically I'll people have the experience as a kid where they just Didn't Feel Good? That kind where you couldn't describe your symptoms, or pinpoint anything specifically wrong with you, other than just feeling bad. That definitely should've been more of a red flag.

sometimes being chronically ill is laying on the floor in pain while the cat tries his very best to help

The sarcasm here is fucking hilarious 💀 whenever I inevitably end up using mobility aids, imma just tell them my doctor told me to, bcs she did. Even if your doctor denies you a mobility aid, people get uncomfortable if you just say a doctor made you, so you could always just make stuff up.

You shouldn't get a wheelchair, walker, cane, shower chair, or any kind of assistive technology mobility aid because then you might become dependent on them. Just like how you also shouldn't get glasses if you have bad eyesight because then you might become dependent on those.

For instance, if you end up stuck using corrective eyewear, you could actually lose your ability to tell what things are even when they are extremely blurry! You need to get used to having migraines from seeing unclearly because if you wear glasses all the time, you are basically giving up!! You don't need to see things coming at you from far away! You just need to get good at dodging, and if you can't, then you have no one to blame but yourself!!

For example, I read a really heart-worming article recently about a girl who was stuck using glasses - just absolutely, tragically trapped in her eyewear from dawn to dusk, even though she was good and never ever complained; and I heard she trained herself to discern the blurry faces of her loved ones with 60% accuracy! - she was even able to walk down the aisle at her wedding WITHOUT forcing the discomfort of seeing a woman in glasses on all her guests!!

Sure, she had to give her vows with a splitting headache, and she couldn't see her husband's expression when he said "I do," but overall, SO inspi-ration-al!!! So up-lifting!!

(She didn't even have to use a seeing eye cane, which would have been the worst-case scenario, obviously, because she worked hard to make sure she looked LESS disabled, not MORE disabled!!! Everyone knows blind people exist solely to be a cautionary tale to sighted people!!)

Also, did you know some people get glasses when they only need them a little bit?? How selfish of them! Sure, there's not a shortage, and an increase in demand would result in overall increased accessibility to glasses--but emotionally it's like taking glasses away from someone who needs them more! After all, if everyone who needed glasses got them, then...... um...... more people would have glasses! Which is probably bad!!!!

I also had a friend who was trapped in glasses who saved up all her money for laser eye surgery, and I don't know why everyone doesn't just do that! Sure, some doctors say some people don't "qualify" and it "won't help" those people, but that's why you can't give up!! You don't want to be one of those people!

After all, what's the worse thing that could happen with an unnecessary laser surgery to the face that comes with crippling debt??? It's worth the risk to gain your FREEDOM back, and I'm so proud of my friend!!

Tragically, she did die later that year while driving Uber and squinting at street signs, but at least now I know my friend is finally free from the shackles of her terrible eyesight. #ripAshley #rippedAshley #justripit 😌😌😌❤😇😇😇

And that's why you shouldn't get used to using a mobility aid!! Because, like glasses, they are inherently embarrassing to be seen with; and - like glasses - it is more noble to silently suffer than to depend on unnatural technologies that force you to rely on them!!! (Besides, everyone else will be SO much more comfortable if you look normal!)

I hope you learned something today. 💖

I always drink a ton of cold water and pour it over my head

Respectfully how the fuck do you take hot baths with pots and not die

Oh trust me, it’s not without consequences. I add cold water to the bath if it gets to be too much, and when I get out I immediately sit down in my towel while my heart calms down that way I don’t eat shit on the bathroom floor (and that’s also why I have to have the door unlocked, love that for me) I didn’t used to have heat intolerance but now I do, and my body hurts enough that I make the decision to walk through the flames of hell each time instead of dealing with my wack ass degenerative joints

pots flareups are so weird because wtf do you mean my heart is going sicko mode sfter walking 10 feet???

WHAT DO YOU MEAN MY HEART RATE IS RISING WHILE SITTING DOWN???

CW : VENT THAT HAS NOTHING TO DO WITH MLM BUT I NEED TO GET OUT

CW for disabilities and self-harm

I became sick over memorial day weekend (for those who don't know, we have the memorial day off.). Now all of my disabilities are flaring again, and i just got out of a huge flare not even a month ago.

I'm convinced this is because i don't wear a mask anymore. and before you blame me for my own issues, I don't wear one because my family doesn't anymore. I don't like to wear them in the house and due to breathing issues, i cannot wear them for a long time anyways. If i'm gonna get sick being at home or out in public, what's the point? OFC i would wear one if you asked me and would always warn you if i was sick because disabled ppl and able-bodied ppl with preferences matter.. always.

Anyways, I'm just in so much pain. I want to cry and scream and rip out my hair. I want to throw things across the room but all of that would get me recorded and prolly sent back to the psychiatric hospital.

i can't breathe without wheezing and coughing, my knees click when i walk and i keep going into pre-syncope. My fingers ache and i lost my hand brace for my wrist when it locks up. My hips hurt and even sitting criss-cross no longer helps. my back hurts and i can't crack it and i have a major headache.

I had to come home from school today, i begged my parents until they gave in. I'm scared. I'm sad. I'm depressed. I feel as if it'd be better if i just .. wasn't here. That way nobody would have to suffer. anymore. idk

I'm just so.. tired, man. Nothing is going my way, it never has. I'm so so tired, i feel so numb. I don't want to be here anymore.

Just remembering the times I’ve actively been falling asleep in front of a doctor due to my chronic fatigue but then they still don’t do anything but tell me I need more sleep

Which isn’t unreasonable but I am a student. An AP GT student who falls asleep during class as well so I don’t get the notes or miss the lesson so I have to come in after school to get notes (or dig around the online classroom for the teachers that actually post their notes) and then have to teach myself the lesson.

Then I have to do the homework which is difficult for me to focus on (we think it’s undiagnosed adhd given other symptoms) and trying to complete the assignment takes a minimum of an hour. Give or take given exhaustion and falling asleep reading the questions, pain in my wrist, fingers, hands, etc, or having to do other things.

Then multiple by the four educational classes I’m in (thank god French doesn’t have homework)

I get as much sleep as I can

All this to say, I’m glad it’s summer and I’m glad I was finally diagnosed (maybe collegeboard will finally consider accommodating me)

My foot has been hurting for the last five days and is making it agonizing to try and do my PT.

Nothing looks wrong, it’s not a joint (I think?)

It doesn’t hurt all the time but if I bend my foot up towards my ankle it hurts or point it.

This is weird

So excited to have a flare up during my EOC exam tomorrow and not being allowed to have any of my diy treatments because the school refuses to accommodate me, so fun!!! /src

But seriously I had a flare up in the middle of my SAT and it caused me to not be able to finish a section due to incoherency and pain. Literally just let me have my salty beverage…..

Me when I went to the endocrinologist and they assumed I didn’t know what my autoimmune disorder was. Not like I’ve been dealing with it for 4 years.

Didn’t even think to check me for what I was soon after diagnosed with by a geneticist.

My doctor shocked I know more about my debilitating condition than him

oh god, absolutely constantly. it's always have you tried yoga, and i have to say "well, justvlike the first sixty times you asked, yes i have, and no, it didn't cure me. that's not how it works." im a lazy ingrate for having to take bed days, and im giving in to my weakness for using a cane. it's the most insulting, invalidating, hurtful bullshit ever. and when it comes from family it's so much more painful because they should be able to see how much you struggle to do the things they constantly recommend

is anyone else with chronic and mental illness constantly lectured by everyone in their life about what they need to be doing to "improve" their life?

I'm just so tired of it. Every doctor, every family member, even my in laws now I'm just constantly told what I need to do better and reminded how I'm not good enough/not doing enough