#positional Orthostatic tachycardia syndrome

[thebookewyrme]

If you have chronic pain or fatigue and this gives you a rush of relief like the second poster, I suggest getting tested for POTS. That Postural part is a big part of what makes POTS so hard to catch. And changes in your positioning in space can have DRAMATIC effects on how you’re feeling, even if you don’t notice your BP or heart rate changing. pOTS is testable with a simple tilt table test, I think cardiologists can do them, although I did my own “poor man’s tilt table” by taking my BP/PR after sitting still for 15 minutes, immediately upon standing, 5 minutes after standing, and 10 minutes after standing. If there’s a huge difference despite you not doing anything besides stand there? That’s POTS.

Anyway, it might not be but it’s something to think about as chronic pain and chronic fatigue are both symptoms, along with a host of other seemingly unrelated things. POTS is often the last thing doctors will look for though, even though the test is so simple. But after getting diagnosed the first thing I thought when reading that second post was POTS.

tip for people with chronic pain/fatigue: lay down occasionally. haven't laid down in the past 3-5 hours? do it (if you can) and see how you feel. i've found that i'll lay down in bed just to be in my room, but then i get hit with an instant wave of relief because just sitting on the couch was too much for my body, and i didn't realize it.

when you're in pain or fatigued for a long time, your awareness of your body may get wonky - especially if you already struggle w/interoception due to neurodivergency. so. test it, sometimes. you can apply it to other things too: sit if you're standing. stop doing a task if you've been doing it for a while. have a small snack to see if you're hungry. etc. etc.

[thebookewyrme]

So, I have had this thing for decades where sometimes I’ll start having the perception that myself and everything around me is expanding and contracting, like some giant organism breathing. Everything balloons into fat wonky shapes, then shrinks into long attenuated shapes, regular as deep breaths. It’s incredibly hard to describe, and everyone I’ve told about it has been like “that’s fucking weird, what?”. It happens irregularly, sometimes when I’m laying in bed on the edge of sleep, sometimes when I’m just sitting quietly, but most often when I step out of a hot shower.

I’ve never been able to figure out what causes this. I know it’s not really a hallucination, because I can clearly see that none of it is happening, this is just a layer of perception overlaid on the word around me. And while it’s happening my thoughts go static…except for a certain detached part of my brain that is busy cataloguing every sensation. The medical professionals I’ve dared to bring it up with have been baffled.

Recently I found out I have POTS, and thus I’ve been doing a lot of reading about it. The more I read, the more I feel like everything that is wrong with me can be attributed either to the neurodivergence or the POTS.

One of the things about POTS is that warm humid environments, like say a very hot shower cabin, are bad and likely to make everything go haywire. I’m not saying the expandy feeling is caused by POTS necessarily, but it sure starts to feel related.

My love of hot showers knows no bounds. I loathe cold showers. If I must be in the Wet Box, then I want to be cozy too. It also helps ease my chronic pain stuff too. But I’m beginning to worry that I’m setting myself up to feel like crap with every hot shower.

Certainly my love of hot showers is setting me up to need a lie down after every shower. And that’s bullshit and I object. I want a refund.

[spaghettimakesflags]

aroace pots flag

[mandana-the-service-pup]

A Complex Mobility Task: 📫🦮

Since moving into a house, Mandana has started to develop a habit of barking loudly when mail or packages are dropped off. Rather than punish her for this natural behavior I’m giving her the tools to deal with it in a more productive manner.

1. She rings the bell to let me know the mail was delivered.

2. She sits and waits for me to open the door and give her commands instead of bolting outside.

3. She brings the packages inside and stacks them in a pile.

4. She opens the packages for me only when I ask and only until I ask her to stop so as not to damage anything.

5. She helps me pick up items and throw trash away.

It’s a bit of extra work for me right now but she really enjoys it and it’s going to be very helpful when the training is complete.

[disabled-bug]

If you feel like you didn’t do anything but survive in 2024, then good. I’m glad you’re here. I hope 2025 is gentler with you.

[fuzzznstuffingthatcomesout]

I have POTS. I'm more on the severe end. It's likely I've had it my whole life but catching COVID three times made it so it disables me.

Context out of the way, I'm currently sitting on the couch while my fp watches over me because I'm having heart attack like symptoms. I'm in pain, lots of it, and they immediately calmed me down and held my hand. I felt like such a lost little kid, and for once I was comforted. They surprised me by knowing a symptom I didn't really know much about, but in a fit of panic it's easy for knowledge to go right out the window.

I'm loved and cared for. I still have BPD. I can still be tiring and complicated, hell being as disabled as I am is also tiring and complicated, but I'm still loved. We can be loved and cared for, even if more than just BPD disables us.

[chronicallyjax]

Saw the neurologist today! She was super sweet and listened to me really well. And she knows alot about hEDS and Dysautonomia!She says I have migraine with aura and also thinks I might have craniocervical instability. I'm starting two new medications (sumatriptan and nurtec) then next step is an MRI.

[atley01]

This disability pride month, I'm left with conflicted feelings.

Whenever I post about disability-related things online, I always try to give my community optimism and hope. I know how much suffering can result from having health issues, and sometimes, you just need a break from dwelling on it. I want to provide fellow disabled people a break from the slippery slope of doom that dwelling can lead to.

But the more I do that, the more that I fear I'm showing an inaccurate representation of disability. That I am painting an image of disability to be something "struggle free all the time and nothing more than a 'unique character trait.'"

Being disabled isn't easy. You're living in a world not meant for you. And you get reminded of that every day. You might think its easier to mask if you're able to, but all that does is dig you into a deeper hole. Sure, I can suppress my tics. Sure, I can mask my autism. Sure, I can try my best to hide my POTS symptoms. I can act like my tinnitus isn't giving me headaches and making it difficult to function in society. I can act like my chronic pain isnt making me want to collapse to the floor. I can pretend I dont need a mobility aid.

Sometimes, though, you arent given the choice on if you hide it or not. And then that whole facade tumbles down. And you're left feeling a mix of embarrassment, shame, and anger. Embarrassed to be seen like that, shame that you may need help, and angry that your body did something against your will, again.

I started working 7 months ago. The first 3 months, I was so happy and proud of myself for being able to have the privilege of holding down a job. By the 4th month, I had some doubts about how long I could hold my job down. Here I am, 7 months in, and Im realizing yet again that I am not as able-bodied as I expected myself to be. The thought that I may have to find a less physically demanding job terrifies me. I feel immense shame for struggling to handle a part-time job physically.

I think what really solidified this for me was when I passed out at my job last month. It wasn't as bad as it could have been, but the fact of the matter is I blacked out, and I didn't get to decide I "wasn't going to." That scared me. Or maybe what solidified it for me was when my tinnitus prevented me from being able to understand customers and coworkers. Maybe it was when I had to mask and suppress a tic attack to the best of my ability. Maybe it was when I touched something that triggered my sensory issues, and I was simply too busy to regulate myself, so I had to spend my time dissociating to forget the feeling.

When you're young and you're disabled, it's difficult to be taken seriously. People think you're being dramatic, or they think its something you're doing to be causing all the health problems. "Have you tried changing your diet?" / "It's growing pains." / "Your leg hurts? Did you bang it on something?" / "Give it a few days. You'll feel better." The search for accommodation and validity is made even harder when doctors refuse to listen. Sadly, the medical system is not immune to being abelist. You can't request accommodations if doctors document you as able-bodied.

I have never claimed to be a voice for my community. I am a voice for nobody but myself. Maybe in sharing my Expirences, someone else can feel less alone. Or maybe this is unique to me alone.

Am I proud to be disabled?

I think that in some ways, yes. I am proud of what I have accomplished in spite of my health. I am proud that I have found tools to manage my health. I am proud to say I am a part of an amazing community such as the disabled community, and I am proud of what we've accomplished.

I dont think I am proud of the abelism, shame, or pain through. Im not sure anyone could be. If you are, I truly envy you. I am proud that despite the pain, I push forward. But I wonder if that's an unhealthy habit to encourage. To push my limits and ignore my body, screaming at me to give it rest.

This disability pride month, Im reflecting on my health and how it affects me, and taking the time to be patient with myself. Because Im doing all that I can, I do not need to hold myself to the standards that able-bodied people are held to. That is an impossible standard for me to reach.

Im going to celebrate the small victories. This time last year, I was passing out multiple times a week, and I overall had more tic attacks. Now, my fainting has been almost non-existent, and my tic attacks- while they do still happen - have noticeably been less frequent.

If you made it this far, please be kind to yourself, and happy disability pride month. You are allowed to be upset by the things your disability puts you through. You're doing the best you can. I see you, and Im proud of you.

[fenndulum]

Take it easy some days. The world will still be here when you get back 💜

~Fenn <3

[primrosebitch]

my circulation has been way worse than usual lately, like i've been needing to use a heating pad on my feet to fall asleep because my feet have been so cold it's keeping me up, and after just a few minutes in open air my hands will be uncomfortably freezing and i'll have to warm them up with the warmer parts of my body (i.e. neck, stomach, armpits, etc), and it's not like all of me is cold either, my face is still frequently uncomfortably warm and my torso has also felt warmer than usual (which i've just realized might actually be caused by my circulation worsening because now my blood won't be cooled in my extremities nearly as much), i have no clue why this is happening though because nothing i've been doing has changed at all, my routine and all that is the as before my circulation started getting worse and no medication changes have happened around the time it started (which wasn't even that long ago)

[sldlovescartoons]

Today in learning about myself news, turns out I don’t get migraines sometimes, I have postural/positional headaches of varying intensity and when they are bad they mimic migraines. It turns out it can be caused by POTS, so throw that on the pile of possible signs that I have POTS.

Granted, I’m an autistic woman who had an onset of fainting and lightheaded-ness at puberty so it really shouldn’t surprise me that the list grows.

[neuroticboyfriend]

to anyone who's nervous about using or getting a mobility aid:

it's okay. disabilities are so difficult to manage, and the judgement from others doesn't help that at all. it makes things so confusing, and it can feel heartbreaking when you find something that can help you but realize others may not support it.

yet at the end of the day, you know your body best. nothing anyone thinks can change the pain, instability, weakness, etc. you're experiencing. your struggles are real. i believe you, and so do many people just like you, even strangers. we want you to do what's best for you.

i was really scared to start using a cane and a rollator at first, and some days the insecurity and fear gets to me. but for the most part, nowadays, i don't even bat my eyes when i go to grab either one.

past me was so afraid, and had to have a lot of courage to do this. but i'm so grateful past me did that. mentally, it feels more uncomfortable to go without my aids now. i still haven't jumped the hurdle on the wheelchair yet, but, that's ok. i'll get there.

all to say... today, you may be afraid. but tomorrow, maybe you can have courage - action, in spite of fear. and in some length of time, maybe you'll look back and be glad you made the choice you did.

because the choice is yours.

[thebookewyrme]

Got a wild hair to do some reading on POTS because it’s getting worse, even with the new med (Diltiazem). So read some stuff on John’s Hopkins website, but nothing new there. So hopped over to Dysautonimia International and started looking there. And it looks like the pain in my hands could be from THAT, instead of the beginning of carpal tunnel! That would explain why it’s both hands, worse in my left despite me being right handed, and has been going on for years without getting worse or better.

Anyway. I wish my doctors would talk to me more about it. I have one dr I haven’t talked to about it yet, and I’m going to see a orthopedist soon about the hand pain so I’ll mention it to them. I really hate having a poorly understood chronic condition though. It’s bullshit.

[spaghettimakesflags]

bi pots flag

[mandana-the-service-pup]

Cardiology appointment was a success!

Big thanks to @doomspaniels for sharing their experience & knowledge with me. It really helped me put together a convincing presentation. My Cardiologist was happy to order an Echocardiogram + Bubble Study. Hopefully it will shed some light on why my blood oxygen has been dropping so much. He said if they don’t find a big enough hole to “justify” the low blood oxygen then he’ll send me to a lung specialist to see if it’s something else but fingers crossed we get some answers soon 🤞

Mandana was awesome and she had a blast. She has really been enjoying these appointments. My only complaint was that she was whining a little during my apt when I was talking to the doctor. I can’t really blame her for that because I was ignoring her alerts and when my Cardiologist stopped to check my heart rate sure enough she was spot on!

[lfnr-blog-blog-blog]

Always gotta reshare this every time I read it! You capture the emotions so perfectly. Thank you for reminding us that we are worthy of love and affection

My Angel

Pairing: Steve Rogers x Disabled!Female Reader

Word Count: 1395

Warnings: Fluff, Talk of Disability, Emotional Issues,

Summary: Steve is proud to call you his wife even when life throws a curve ball and you fall sick. No matter what anyone says you are his saving grace, his beautiful Angel. He will always be happy to remind you how much you mean to him.

A/N: This is for @gotnofucks​ body positivity challenge. The challenge says “Pick something that may make someone self-conscious or insecure and make them feel better about themselves.” I chose my disability that I deal with every single day. Some know about it. I don’t normally discuss it much but this challenge really spoke to me. So you will see a glimpse into our lives. I read this to my husband and he legit cried. He said, “It’s like you wrote exactly what I feel about you.” He did laugh when I told him I put Steve Rogers in the husband role. LOL!

A/N 2: Italics are a flashback. Also, thank you to @pigwidgeonxo​ & @music-culture-mythology​ for beta reading this.

DO NOT READ IF YOU ARE UNDER 18 YEARS OLD.

Reblogs & Comments on Tumblr are welcomed and encouraged. 😊💜

I do NOT give my consent to have my work translated or reposted on any social media platform, apps or third party sites. If you see my work anywhere else besides my personal accounts on Tumblr & AO3 then it has been stolen. I will NEVER give written or verbal permission to repost or translate any of my fanfics as they’re MY intellectual property. 🚫🚫

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