#positional Orthostatic tachycardia syndrome

[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.

[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.

[genzforbettergenerations]

Since I’ve never seen any kind of positivity post for this:

Shout out to people who get IV infusions weekly, biweekly, monthly, multiple times a year.

Shout out to people whose hands/arms/elbows/feet/legs are covered in scars and scar tissue. Shout out to people whose scar tissue hurts or locks up joints. Shout out to people who are covered in bruises after getting an IV.

Shout out to people whose veins roll or disappear, people who need multiple sticks or digging to get a vein. Shout out to people whose veins blow when getting IVs or during infusions. Shout out to people who feel like their veins have no more to give.

Shout out to people who cry or need someone to hold onto when getting an IV. Shout out to people who have anxiety or panic attacks when getting or thinking about IVs/infusions.

Shout out to people who will continue to need IV infusions into the foreseeable future. Shout out to people who will continue to need IV infusions for the rest of their lives. Shout out to the people who leave their IV in for several days, and thus need to cover it and continue with school, jobs, chores, etc, and sleep with it in.

Shout out to the kids and teens who need IV infusions.

Shout out to people who feel self-conscious about their IV scars. Shout out to people who worry about someone noticing them and treating them differently (though no one should be shamed for their scars, no matter how they got them).

Shout out to people who are traumatized from IVs/infusions. Shout out to people who have terrible memories associated with IVs/infusions.

Shout out to people who go to the hospital for infusions. Shout out to people who get infusions at home. Shout out to people who lose hours of their days while getting infusions.

You are no less worthy of love and positivity because you need IV infusions.

--

Anyone can reblog (and please do!), but only people who need (or have needed) regular/intermittent IV infusions should add on.

[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.

[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

[mercyandme007]

Is Force Free dog training Woke?

So I have seen a lot of different opinions on this idea. Is Force Free dog training killing dogs? and so on. But first we need to know what Woke means. If you look into the dictionary you will find that it is the past of wake, however i took a much deeper dive and looked at Urban Dictionary. The main definition, ignoring all the political stuff is to be aware of social justice issues and to try to be on moral high ground. So I immediately not consider Force Free traning woke. Force Free trainers just look at science and go off of facts about animal behavior. I as a R+ trainer do not think im better or on a moral high ground compared to other trainers using diffrent methods. I have seen a WHOLE LOT of R+ trainers act like they are on a moral high ground because of the fact they know science and animal body language. I would rather hang out with a balanced trainer who accepts R+ trainer, then a R+ trainer who acts superior to balanced trainers. i know that those R+ trainers who act better then thou do not get a lot of understanding from the balanced traning community. As a crossover trainer i understand both sides, when I was balanced, I would have people side into my comments and DM's and call me an abuser and so on. If that was what the force free community consisted of, then no way did i want to be involved with them. Until I found the holy grail of R+ trainers, the trainers who were also crossover trainer and could understand that their own people could be absolutely nasty to people using different methods of training. I began to understand that not all R+ trainers were hypocrites. When I say hypocrite, I mean how they push Force Free traning and being as gentle as possible, but when you say you are not R+ then they call you an abuser and state that you should die and your dogs life is miserable. As a crossover trainer I will not go out of my way to call a balanced trainer abusive, cause 98% no one is trying to harm dogs. I cant judge a whole person and their dog based off of a 20 second clip I saw of them using a prong collar. However if it is obvious that the dog is being mistreated like, American Standard K9, Cesar millan, Dog Daddy, Tom Davis. Then I will say something.

if you liked this post please follow and comment (for engagement), also go follow my instagram @mercy_and.me

[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.

[little-pissbaby]

fun fact about me! I have hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hPOTS). this means I am prone to fainting when I change positions or when I feel a strong surge of emotion, positive or negative. for me, laughing is my worst non-postural trigger.

this is a clip from playing lethal company with friends a few months ago. you can hear the eerie silence of presyncope at 0:19, and the sound at 0:23 is my face hitting the keyboard lmao. I played this for my mother and she literally pissed herself laughing and DEMANDED I show every single person I know (including my doctors, who thought it was funny to see and surprisingly helpful, especially for being audio only).

[s0fter-sin]

this is gonna sound dumb but keep a mirror on your bed for when the syndromes are syndroming so if you’re trying to watch something on tv but need to curl up in a different direction, you can still see

[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.

[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!

[dreamsontheirway]

Lemon & Honey | S.R.

Summary: The reader has postural orthostatic tachycardia syndrome, or POTS, and suffers from fainting spells. Warnings: POTS, fainting Word Count: 2.1k

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Growing up, you always had awful menstrual cycles. They were heavy, you were emotional, and black dots danced in your vision each time you stood up. When you became a teenager and started the birth control pill, your cycles became better, more consistent. But that was also when the fainting started.

In your teenage years and into young adulthood, you fainted multiple times a week, sometimes more. At first, the doctors had no idea what was wrong and they thought the worst. It was a scary time for you and your family, not knowing what was causing these debilitating fainting spells.

Finally, a couple months after your twenty-first birthday, you went to a new doctor. You soon learned that your extreme menstrual cycles and your fainting spells were connected. You were diagnosed with POTS.

You recalled the memory, your brows furrowing in confusion as your mother’s hand held yours.

“Postural orthostatic tachycardia syndrome,” the doctor furthered. “Your fainting is caused by an extreme change in heart rate, particularly when changing from a seated to standing position.”

“Fainting isn’t always a common symptom,” the doctor continued, looking at you with kind eyes. “But it can happen more than people realize. There’s nothing wrong with you, Y/N. We will get you on a medicine to manage this.”

You liked to think that miracle doctor saved your life that day. If it weren’t for him, you may still have these debilitating fainting spells. If it weren’t for him, you would have never found a medicine that reduced your fainting to once in a blue moon. If it weren’t for him, you would’ve never joined the FBI and met the love of your life, Spencer Reid.

You and Spencer have been dating for several months, but he has yet to learn about your diagnosis. With how managed it is now, it merely feels like an afterthought for you.

However, that doesn’t mean Spencer hasn’t picked up on a few things over the course of your relationship. He noticed how awful your periods messed with you; the cramps and the depression. He noticed the way you gripped the side of the table until your knuckles turned white upon standing up from your desk.

Spencer knew that there were a multitude of reasons for these behaviors. Maybe she has low iron levels? Could it be orthostatic hypotension? Unfortunately for Spencer, there was never a way to fully diagnose your symptoms. He was forced to sit and witness, and take care of you, with your struggles. Spencer probably would’ve figured out your diagnosis, if it weren’t for the fact that you’d never fainted around him, yet.

That fateful day came on a Wednesday in the middle of October. The trees were transforming, swirling colors of red and orange and yellow. You walked into the bullpen, preparing yourself for the mountains of case files you knew you had to complete.

You had woken up feeling the symptoms. The pounding in your chest, the dizziness. You could often tell when it was going to be a bad day in terms of your diagnosis, but today you brushed it off. It had been months since you fainted, and you were beginning to hope that you never would again. You realized that was likely wishful thinking, but you continued your morning as normal.

Well, somewhat normal. Upon sitting at your desk, you realized you probably shouldn’t have coffee today. You probably shouldn’t have tea, either, but you needed something. The caffeine from the drinks spiked your heart rate, making fainting inevitable on a day like today. Your thoughts were interrupted by the kind voice of your boyfriend.

“Good morning, I picked this up on my way in.”

A tea bag was draped over the side of the cafe take out cup, and you grinned. Somehow, Spencer always knew what you needed, despite you having yet telling him about your POTS.

“It’s a green tea with a splash of black, with lemon and honey.” Spencer smiled goofily, his mouth straight, but outstretched and downturned. You always thought he looked reminiscent of an amphibian, in the cutest possible way of course.

“You are literally the best thing to ever happen to me,” you spoke, a hint of playfulness in your tone.

Even though you were joking, a part of you really meant it. Sometimes it felt like Spencer read your mind when it came to the things you needed, especially when dealing with your symptoms. Of course, there were many other things that Spencer was a bit clueless about. When it came to your symptoms, though, he somehow just knew.

Spencer occasionally brought you coffee, too, but he had noticed your behavior being off yesterday and last night. He noticed your white knuckles gripping the desk almost every time you stood up yesterday. Last night, he noticed your exhaustion. You two had been sat on your couch, watching a movie. Your head had rested on his shoulder, but you fell asleep nearly twenty minutes into the movie.

Spencer had a hunch, but he wasn’t sure. He was starting to wonder if there was something wrong with your heart rate. If he was correct, coffee was the worst possible thing you could be drinking. In all seriousness, you should only be drinking water, but he knew you needed something to be able to function. So, he decided on your favorite tea order.

Several hours ticked by, the pile of files on your desk slowly but surely decreasing. Your tea was long gone, but your eyes kept fluttering closed. You needed more caffeine or you were going to fall asleep at this desk and probably get written up. The thought of getting in trouble stirred you to a straightened sitting position.

You stood, your head pounding along with your quickened heart rate. Your hands gripped the desk for a few moments, enough time for your vision to clear from the black veil. You continued towards the kitchenette to find something to keep you awake.

Spencer had witnessed the entire ordeal, and he quickly stood and followed you to the kitchenette. If his hunch was correct, any more caffeine would surely make you feel much, much worse.

“Y/N,” he spoke, and you whipped around to look at him. “What’re you doing?”

Your brows furrowed in confusion at your boyfriend’s concerned face.

“I am looking for more tea?” You said, a questioning tone lacing your words.

“I don’t think you should have any more.”

“Excuse me?” You asked incredulously. Spencer had never made any sort of remark about what you should or should not be eating or drinking. Luckily, he typically knew better than that.

“I noticed that you get dizzy when you stand up. If my hunch is correct, any more caffeine may make you more dizzy and potentially lose consciousness.”

You gaped at him, wondering how he had merely hypothesized a diagnosis that had taken years for you and your doctor’s to figure out. He is a doctor, you thought, but not that kind of doctor.

“I don’t see how what I drink is any of your business.” You muttered, more harshly than you intended to.

The continuous pounding in your head paired with the frustration of not having more caffeine just pissed you off. You grabbed a water bottle and stormed back to your desk.

Spencer wasn’t upset at your anger towards him, especially when he saw that you chose a water instead of more tea. He was just glad that you were taking care of yourself. In addition, he knew you’d most likely feel bad about your outburst in a few minutes and everything would be fine. Even if you didn’t, he didn’t care all too much.

You stormed back to your desk, the tips of your ears red with anger and embarrassment. You felt bad for lashing out at Spencer, but frankly, you wanted your damn tea. Now you had to resort to the classic way of waking yourself up, cold water and the stinging on your arms. You pulled a hair band that rested on your wrist above the flesh before letting it ricochet back to your skin, leaving a red mark. It hurt, but it did the trick.

Another hour or so passed, and you had to go to the restroom. Once again, upon standing your vision blackened and you waited a few moments before continuing out of the bullpen.

Of course, in typical Spencer fashion, he noticed it all, but there was something different this time. Not only did the time it took you to regain yourself take much longer, but your eyes were squinted as you left the bullpen. It wasn’t that bright in here. He wondered if you had a headache, or if there was still blackness clouding your vision.

He didn’t have time to decide before he hopped up and followed you. Upon seeing you, he was extremely glad that he did. You were leaned against the hallway wall, starting to sag.

“Y/N!”

He rushed to you then, either hands gripping your waist to hold you steady.

You mumbled something incoherently, your vision almost completely masked by unconsciousness. You felt hands on your waist and it was the permission your body seemed to need in order to let go.

Spencer felt your body go limp, and he pulled you into him before lowering you to the floor.

“Shit, shit, shit,” he muttered frantically, as his hands hovered above you, unsure of what to do.

He reminded himself that most fainting victims will wake up within the minute. He knew he had to be patient, but that was fucking impossible at the sight of his girlfriend unconscious and crumpled on the floor.

He was about to get up and call for help when he heard you groan.

“Love,” he cooed, falling to his knees, his hand softly grazing your flushed cheek.

“Spence?”

“Yeah, beautiful, it’s me. I’m right here.”

“Did I faint?” Your eyes were still closed, presumably to shield yourself from the harsh light of the hallway.

“Yeah, love, you did.”

You slowly nodded and started to sit up. Spencer started to protest, but he decided to help you lean against the wall instead.

“I’m sorry, Spencer, it’s my fault. I should’ve been more careful like you said.”

His brows crumpled. He felt guilty for making you feel as if this was your fault.

“You didn’t do anything wrong.” He kissed your temple, his heart fluttering with thankfulness that you were alright.

“Spence, I have to tell you something.”

His heart fluttered in anticipation, worried of what you might say. He nodded, encouraging you to continue.

“I have POTS, it’s,”

“Postural orthostatic tachycardia syndrome,” Spencer finished for you, a guilty smile playing his lips when he realized he interrupted you.

“Yeah,” you smiled at him, thankful that you wouldn’t have to go through the spiel of explanation. Of course, not that you expected you’d have to with Spencer, the resident genius.

“I’m sorry, Y/N,” he started, rubbing your cheek again. “It seems like you have a bad case of it.”

She paled at the memory of what she had gone through growing up.

“It used to be worse, if you can believe it.”

Spencer’s jaw tightened, bothered that you’d had to go through any of this. The fact that it used to be worse pulled on the strings of his heart.

“What can I do?”

You smiled at him, thankful for his understanding and willingness to help.

“If I’m being honest, I should probably go home, but all those files,” you paused, groaning at the thought of your continuous mountain of case files.

“No, we’re going home. I’ll bring your case files and work on them.” Spencer stated matter-of-factly.

You didn’t protest; you knew how fast his reading skills were, and you were at the point where you’d appreciate any help.

“Will you tell Hotch? I’ll grab my stuff," you spoke and started to sit up, but Spencer softly held your shoulders down.

“No, you stay here. I’ll grab your stuff and be right back. I don’t want you fainting again.”

“Spence,” you began to protest, but he was already gone.

You smiled lovingly, sipping at the water from the bottle that he had brought with him when he followed you. You felt so thankful to be with a man like Spencer, someone who looked after you and knew what you needed when you needed it. You loved Spencer Reid, you realized, and you would tell him as soon as he came back.

-----

Part II (?)

A/N: Wow, this was the longest single-shot fic I've written! It sort of was just at the tips of my fingers and wrote itself. I really love it and I hope you do, too! Please let me know if you'd like a part 2!

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[imhonestlyjustamess]

It's been forever since I've posted so here's a fun (very simple and surface level) infographic about POTS I made last year for an assignment that also helped explain my extremely poor attendance.

Please note that I am not a doctor or an expert, I only have google and my personal experience as someone diagnosed with the condition.

[Image Description:

An infographic poster. There are text boxes surrounding a cartoony illustration of a person looking sick. From top to bottom: Spotting POTS Symptoms of postural orthostatic tachycardia syndrome, Brain fog (forgetfulness and difficulty with concentration), Headache, Dizziness, Fainting, Fatigue (exhaustion), Insomnia, Chest pain, Shortness of breath, Shakiness, Excess sweating, Heart palpitations, Blood pooling, Low blood pressure, Nausea, Bloating. On the left side is a simple illustration of the brain and spine. The text reads: Impact on the autonomic nervous system: POTS disrupts the bodies ability to balance heart rate and contraction of blood vessels to maintain normal blood flow despite changes in position. Along the bottom of the poster is a depiction of an increasing heart rate. The text reads: Standing for an extended period of time causes a rapid increase in heart rate and a worsening in symptoms for POTS patients. A tilt table test monitoring this increase is the primary diagnostic tool for the condition. A second text box reads: 10 minutes: sustained increase in heart rate of 30bpm or more. ]

[that-disabled-princess]

What is EDS?

Hello! Since it's EDS/HSD awareness month, I figured I'd take some time to talk about the severe disorder that plagues me every waking hour of my life.

Disclaimer: I do not speak for the entire EDS community and my experiences are not universal.

Ehlers-Danlos Syndrome is a connective tissue disorder. It's genetic, incurable, and degenerative. It can cause a lot of problems, including frequent dislocations, POTS (postural orthostatic tachycardia syndrome), heart problems, chronic headaches and migraines, dietary issues, and chronic pain. There are a lot of different subtypes, including hypermobile EDS, vascular EDS, and classical EDS.

It is incredibly painful. I honestly cannot remember the last time I wasn't in pain. It affects everything from my diet, to my mobility, to my hygiene, to my hobbies, to my sleep. I sit down to shower and brush my teeth, I've cut a lot of gluten from my diet, I sleep with several different pillows, I have to accommodate all my hobbies and arts. My mobility aids include forearm crutches, canes, braces, KT tape, and more. Other disability aids include medications, my emotional support water bottle, ice and heat packs, and prescription sunglasses.

I have hypermobile EDS. But the least severe form of a severe disorder is still a severe disorder.

And I am in constant pain.

Everything is a chore, everything is an energy-draining task. Showering takes planning and involves gathering a small army of aids.

Leaving the house takes meticulous planning--which mobility aid will be most helpful today? What braces and supports do I need? Have I eaten enough salt? Will I need my gatorade? Have I refilled my emergency meds lately? Is the place I'm going accessible? And so on.

Engaging in my hobbies takes thoughtful accommodations. I have to be conscious of how my fingers bend when I crochet. I should be aware of how my hands and fingers and wrists are feeling while typing (like typing this post). I have to put all my braces on and bring my stool into the kitchen when I bake. I have to pack my backpack full of disability aids if I want to take a walk. I can't play viola anymore because it isn't safe right now.

I'm so tired. Every day I wake up and I am so so exhausted. Some mornings, while I'm lying in bed and letting my body adjust to being awake, I wonder how the hell I'm going to do this for the rest of my life. Waking up to stiff joints, vertigo spells when I finally crawl out of bed, recovering from an eating disorder while not being able to eat half the food in the house, struggling to leave the house, almost passing out in the shower, going to bed with headaches.

It's hard. It's so fucking hard. I'm not going to sugarcoat this in toxic positivity. Trudging from one day to the next sometimes feels impossible. Some days, it's digging your nails in and refusing to let the depressive thoughts take over. Others, the depression does take over, and there's nothing to do but ride the waves of your grief for a couple days.

Fellow EDS and HSD folks, I wish you all a safe and peaceful month 💖💖

To non-EDS/HSD folks, go learn about EDS and HSD this month!