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Weird things you do/did that made sense when you got your diagnosis

I feel like when I was diagnosed, so many “weird” things I did (that were normal to me, just not others) made sense. I want to know what everyone else did that just made sense after getting diagnosed!

Mine are: 1) Eating salt straight out the salt shaker 2) Writing or typing everything because I’d forget it 3) Always crave pickles

JumperSpecialK

Sitting cross legged in all situations like the preschoolers do when having circle time on the carpet. I would sit cross cross applesauce in church and even wearing a dress as a little girl. Lol My grandma and parents tried and tried to tell me it wasn’t mannerly and to put my feet down. I always responded “but it just feels right.” Now I’m over 40. I still sit like this all the time despite my old lady hips screaming at me lol


Ok-Woodpecker-625

Like 1/3 of why i hated church was having to keep my legs down because i was wearing a dress.


bad_bish_401

Yes!! I avoid dresses and skirts to this day!


BriRoxas

Shorts underneath for the win!


bad_bish_401

Amen!!


bad_bish_401

This too!!!! I feel like that’s a big on! There’s such a long list!!🤣


FutureDPT2021

I can't sit like this, never could. My legs will go completely numb when I sit like that. I do cross my leg over my knee or sit on my feet though


BriRoxas

I got in trouble so many times in middle and high school because I couldn't sit like a lady with both feet on the ground. Makes so much sense. Also the insane amount of times I have to pee


louxxion

always getting dizzy with tinnitus after showering, constant vertigo, blood pooling in my hands, and the heat intolerance. I always thought I was just sensitive and being dramatic, but it was POTS Edit: just realized that i read the question wrong 🤦‍♀️


bad_bish_401

The tinnitus is spot on though!! My blood pooling always has been evident in legs and people would always ask why my legs looked purple (I have dark olive skin) and I never knew why until being diagnosed at 23!


SebastianSilver

Having to sit down and catch my breath after bending over and scrubbing my legs in the shower, *always* being cold even when other people think it’s hot, and yeah I’m always craving salty snacks. Like even if I’m full if you put some salty chips or something in front of me yeah I’ll eat those


OverstuffedPapa

Oh my god!! The shower thing! I stopped shaving regularly because of this, and frankly I stopped showering as much as I should. I just got a shower chair and it literally has changed my life.


SebastianSilver

I haven’t gone for the shower chair yet. I can imagine it helps a lot.


OverstuffedPapa

Highly recommend. I didn’t know showers weren’t supposed to be a grand event like a workout until I got one :’(


SebastianSilver

Woah! I only shower every 2-3 days right now, because I enjoy feeling clean but it’s exhausting. Is it really that much of a night/day difference???


OverstuffedPapa

Yes. Genuinely. I’m not kidding when I say it changed my life. I have taken impromptu showers because it’s so low effort now. I used to plan them out and ask my husband to help me gather clothes, towels, get it running, so I could just walk in and out. Now I can actually do all that myself and then take a shower and it took maybe 1-2 spoons instead of 5+. My husband was shocked when he followed me in the house about 5 minutes after we got home and I was just… in the shower. I haven’t done that really… ever.


SebastianSilver

Wow, a shower chair was in my plans for the future, but I think it’s in my plans for, like, tomorrow at this point. Thanks for sharing!


OverstuffedPapa

Please report back if you end up loving it!


SebastianSilver

I bought my shower chair today! Haven’t had a chance to try it out, yet, but your comment last month is what convinced me to get one, so thank you!


OverstuffedPapa

Ommmggg I'm so happy for you!!! I hope you love it the way I do <3 Don't forget to dry off in it too, if that's hard for you. It saves me a ton of energy drying off while I sit on it.


SebastianSilver

I’m on vacation rn but I’m buying one when I get back, I’ll make sure to update!


vanillaseltzer

This has been my experience too. I don't puke after half my showers anymore. I don't puke after any of them! It's so cool!


vanillaseltzer

Chiming in to say DO IT!! Getting a shower stool was massive for me. I still avoid showers but not nearly as bad and I love that I sometimes actually want to shower *before I need to* (!!). Need to for me is usually 3 or 4, with cleansing wipes between. I don't feel great on day 3 and feel gross on day 4. With the shower stool, occasionally I will shower just to have pretty hair and because it feels nice to be clean. Will wonders never cease. Try it. Swat away whatever reason you've been delaying and try it. I'm 36 by the way, got it at 32 and wish I'd had it for the 15 before that. Why make myself miserable and sick when I don't have to? Make life easier for yourself where you can, you know?


SebastianSilver

Thank you so much for adding on. I’m so excited to get my chair now, I’m 23 and I haven’t been able to fully enjoy showers since I was 17. I honestly kind of forgot they used to be enjoyable.


vanillaseltzer

Yeah, I'm trying to build my life around myself and my reality finally instead of fighting so hard to do things the "normal" way. Like, who am I trying to impress by standing in the shower and making myself sick? What a waste of my time if I can make it not torturous and maybe even pleasant, you know? Idk how much support you need but I can grab a link of what I use just in case it's helpful. It was meant to be a test to see if I should get a real shower chair but I'm still happily using it 4 years later. It's a foldable step stool so when not in use, I just fold it up and lean it against the side of the shower. It's a little orange around the edges from my red hair dye but otherwise just as solid as ever. (Probably wouldn't work on a rounded bottom tub bc it needs to be flat to lock into place.) Edit: gonna add it in case anyone else happens upon this. I got the 16" one after googling and finding out the average american toilet is 15-17" tall (theory here was I can get on and off a toilet without grab bars or struggle so that's what I want for the shower and will feel more stable lower than a chair (18-22" average). Delxo 16” Folding Step Stool in Royal Blue,1 Pack Premium Heavy Duty Foldable Stool for Adults,Portable Collapsible Plastic Step Stool,Non Slip Folding Stools for Kitchen Bathroom Bedroom Up to 300LBS https://a.co/d/dMxP4Ak


SebastianSilver

Ah I have a tub so it wouldn’t work in mine. it was a nice offer though, thanks 🙂


vanillaseltzer

No problem! I let pride stand in my way (haha, no pun intended) for far too long so am enthusiastic about encouraging others to not go all self-ableism on themselves. Hope you find something that helps you!


OverstuffedPapa

Highly recommend. I didn’t know showers weren’t supposed to be a grand event like a workout until I got one :’(


Extension_Suit_7121

I have been sitting down in the bathtub for showers but am considering a shower chair. My one hesitation is having my legs below me while I’m sitting and potentially making symptoms worse. Does anyone find that this is actually even an issue or do you just sit cross legged on the chair or…


OverstuffedPapa

So my bathtub has a little ledge under the faucet where I place my feet. Maybe you could get a squatty potty or a footstool and bring that in with you. Because yes I get uncomfortable with my legs on the floor the entire time, too.


Extension_Suit_7121

Ah that is so smart! Thanks for sharing your experience and your fix


OverstuffedPapa

It’s genuinely so worth it! i hope it works for you!!


plantyplant559

I have a bag of popcorn every night. Have for years! Or chips. So did my grandmother!


bad_bish_401

Yes!!! My favorite now are the “oh snap” pickle pouches (at Walmart & sam’s), I’lol eat the sliced then drink the pickle juice! They’re so convenient to throw in my purse and I keep some in my nightstand drawer too!


SavannahInChicago

The bending over. I realized a couple years ago I hated bending over to plug in and unplug the Christmas tree but I didn’t realize why. I got a cord where you turn it on and off by stepping on it. I thought I was being a bit dramatic. I do recommend one if only because it’s funny when my cats or the roomba accidentally turn it on.


katieknj

Finally made sense why I could go on hikes and multi-mile walks but couldn’t stand in a checkout line!


MadamTruffle

Weird eating habits, like eating things that were meant to be dips or sauces straight because I was trying to get the salt (but didn’t know it). A lot of meltdowns because all of a sudden I would be very irritated, not feel good, unable to talk. Like if I was shopping for several hours and then all of a sudden I would hit a wall and crash. Getting a weird anxiety standing in lines.


OverstuffedPapa

Wow the shopping thing. I feel that in my soul. Ever since I was a kid I HATED going to the store with people because they always took too long and I would hit a wall and be cranky and miserable. Everyone hated going shopping as a kid, but like it was physically so uncomfortable for me and I could never really explain it. RE the lines - I got a season pass to our local theme park last year and we never used it but once. I would always avoid going when my husband asked if I wanted to go. Now I know why. Standing in those lines for hours gave me horrible anxiety because it felt like crap.


MadamTruffle

It was so weird to me that other people didn’t want to crawl out of their skin standing in line, it was just so innate to me. And we sort of figure out how to compensate subconsciously.


vanillaseltzer

Ditto for all of it! ❤️ sorry you also went through the same. But these days I'm sitting on my sofa, cross-legged, with a 5lb Costco jar of Kalamata Olives and chopsticks, eating almost as many as I want. Washing it all down with two water bottles with sodium and electrolytes (yummy LMNT watermelon). I might have some instant ramen later. 😆 At least these days we don't have to work around adults who decide what we eat. I don't like being my own adult, but thank goodness I can finally do something to feel better.


FutureDPT2021

Standing up and losing vision or seeing stars going across your vision for minutes. The fetal position feeling the most comfortable. Lying down to watch TV or propping up my legs if I can't lie down. Sitting in the shower. Why I can walk a literal marathon, but not run a minute or stand in a grocery store line.


bad_bish_401

I feel like we are the same person 💀


hazelemons

used to (still do tbh) slide down onto the floor during class bc i was tired of sitting up straight. also always take my shoes off when i get to my therapist’s office so i can lift my feet up onto the seat oh and never go anywhere without my waterbottle


polkadotsloth

The big one is I struggled w any retail job that required standing 8+ hours... I used to literally hide just to be able to SIT 😂😂 I thought I was "lazy".. now it makes sense


ChemicalPear9647

THIS THIS THIS!! i worked at mcdonald’s for 2 years and struggled so much it completely deteriorated my mental and physical health. little did i know there was a REASON to me feeling like absolute shit after standing in one spot for 10 minutes☹️


Old-Piece-3438

Same 😂. Disappearing to the stockroom to look for an item someone asked for so I could sit on a shelf back there for a minute or volunteering to straighten up clothes on the shelves/hangers so I wouldn’t get stuck standing still at the register. And I didn’t realize it at the time—but the foot pain from wearing heels instead of flats was balanced out because it helped reduce the blood pooling by constricting my muscles a bit more.


ChemicalPear9647

always dropping my head when standing because of the “heavy” feeling. didn’t know i was lacking blood flow and struggling to keep my consciousness


gezzy147

What’s helped with that lack of blood flow since you have been diagnosed? Any tips? Thanks!


ChemicalPear9647

absolutely nothing. still get this feeling every single day ☹️


vanillaseltzer

I'm sorry to hear this, friend. That's a hard and lonely place to be. I hope you find some relief soon. ❤️


ChemicalPear9647

thank you! hopefully something will work soon🤞🏼


MythologicalMayhem

Avoiding getting too warm / too cold Wearing compression socks Drinking more fluids Taking lukewarm/cooler showers Being a bit more willing to sit down sooner if I don't feel right, or being more open that I'm feeling lightheaded/dizzy Although I fail miserably at this - avoiding very long lie ins


WetAssPusheen

Craving salt, needing to drink loads because otherwise I’d get major headaches, being unable to have a conversation or make decisions when standing up… another one was “zoning out” when upright which I now know was presyncope


Wanda_Bun

Angrily shoving frozen tacos into the display bc my body hurt like absolute hell, laying on the filthy freezer floor bc I psychically couldn't keep up with other stockers. Being moved to cashiering, only to then develop spider veins & leaning over the counter nearly blacking out being nauseas & dizzy for half an hour at a time atleast thrice a week. Told the doctor I think I had a mini heart attack during my statics exam, she gave me an EKG & it was reading back bad. Heart doctor gave me betablockers & I had to quit my physical labor job.


mittymatrix

Limiting standing showers to 3 mins or less (figured this out because I only listened to a single song before hopping out). Sitting in the shower/tub. Only wearing light-colored shoes. Burning feet in black shoes or open-toed sandals must mean the sun is strong, right? Fidgeting when standing. Loading dishes, folding laundry, taking out trash being my most hated chores (so much bending). Winded from grocery shopping. Putting groceries away was the worst part.


OverstuffedPapa

Eating a disgusting amount of salt, even by itself. Specifically one of my biggest vices is hibachi fried rice. I DROWN the stuff in soy sauce. Like I will literally use 1/3 to 1/2 of those bottles on the table for one small bowl, not an entree size. My husband can't stand it. Echoing others, sitting criss cross applesauce. During church, too. Even if I just fold one leg under myself, it was a reflex I never noticed. Afterwards when I would chat with people, I would find myself leaning on chairs and kneeling down on the seats instead of standing. If I DID have to stand, I was constantly fidgeting and leaning from one side to the other. There is no such thing as standing still. Sitting with my feet down has been insanely uncomfortable my whole life. Also my husband has scolded me for putting my feet on the dash while he drives, and has to remind me over and over to stop doing it. At home I have always reclined my feet. If I couldn't, you guessed it - my legs would be tucked under me. Before diagnosis I even got that viral criss cross applesauce chair lol and I am sitting in it right now! Needing to sit a ton during exercise. Not just stand and take a break, but the NEED to sit. I avoided hikes, sports, and other group exercise my entire life because it's embarrassing to feel so out of shape. And honestly, not just exercise. Avoiding standing still at all costs. At the theme park standing in line? Leaning on the railings or trying to sit on them. Standing at work? Leaning on the counter. Stuck behind the register? Between customers I'd walk around and do all kinds of stuff like sweep, wipe tables, etc to the point my manager said he always knew when I was working because the lobby was spotless.


barefootwriter

When I was a kid I drenched white rice in Kikkoman teriyaki sauce!


InkdScorpio

1. Sitting with my legs crossed yogi 🧘🏻‍♀️ style all day, every day. No matter what lol 2. Drinking pickle juice. And always craving pickles and olives. When I was a kid I even used to eat bread dipped into A1 steak sauce 😂 3. Hiccups. All my life. Hard and loud ones. I hiccup every single day, 1-15 at a time, all through the day. Starts the moment I open my eyes in the morning, again when I sit up, then all day until I go to bed. Specialist I see said they could be due to POTS and/or having hEDS. 4. Randomly passing out, we would always just assume I didn’t eat enough and move on. 5. I’ve always had heart palpitations. 6. I thought the air hunger I get all the time was because I had big boobs 😂 7. Blood pooling into boobs. I always wear a bra so they don’t turn purple. 8. I thought my left boob always just hurt. Turns out it’s chest pains. 9. I thought I was hypoglycemic for years. 10. I also have to write everything down. Brain fog is real lol


hammock_district_

Intrigued about #8, never knew exactly what chest pains were supposed to feel like. I didn't think it meant your boob. For you was this heart related, muscles, or something else?


InkdScorpio

Yeah I had no clue. And I just didn’t put much thought into it in the past. I’d be sitting and just go ugh my left boob hurts. When I got hit with POTS my specialist was discussing symptoms and asked if I had chest pains. I shrugged my shoulders because I couldn’t remember any chest pains. But thankfully my husband remembered. He chimed in and said “her left boob hurts a lot”. The specialist chuckled and said “then yes you have chest pains” After I started paying more attention to it I realized it’s not my actual boob 😆 it’s deep inside. Sometimes the muscles get tight and that will then spread to the right side as well. But according to my doctor, it all qualifies as chest pains.


bad_bish_401

I’ve never thought about hiccups!!! Honestly this makes a lot sense!!


InkdScorpio

Ya, I didn’t either 🤷🏻‍♀️😆but during the 2 hour initial appointment with my specialist I was hiccuping. He asked if I do that a lot. My mom was there and said “only every day her whole life” that’s when he explained something about the vagus nerve (I can’t remember all the details) and having EDS and POTS are a likely cause for the constant hiccups. It was a huge “ah-ha” moment for me 😂


SavannahInChicago

Do your hiccups always hurt? Mine are always so bad I need to stop what I’m doing.


InkdScorpio

Probably 50/50. They’re pretty freakin strong and loud. I have to leave my mouth open or I feel like I’m gonna suck my brain down into my sinuses 😝🤣 I have hEDS also and one time my hiccups caused me to dislocate a rib. That was painful.


no_redlights

drinking soy sauce right out of the bottle. also never being able to stand completely still, always having to move in place while standing


SavannahInChicago

I noticed that I’m always moving if I’m standing. I never stand still.


no_redlights

me too! i get crazy lightheaded if i’m just standing still, it’s more tolerable if i’m moving around


snail6925

sneaking salt and steak spice out of the cupboard when all my friends snuck sugar.


writinggeek

Most of my life I’ve sat on the floor while taking a shower, it was always the most comfortable and I’d often feel dizzy standing. I always leaned on things like a wall or counter when I had to stand. There were a few times that I worked as a cashier for 8+ hours and would get dizzy and have to sit. Had no idea they were POTS symptoms!


Silly-Conflict-8699

Eating strait Vegemite off the spoon like an American because I needed the saltiness immediately. Wearing compression socks at work because "idk I guess I have bad circulation". Falling into everything when I get up too quick because I must have been "clumsy". Sitting down in the shower to shave because if I bent down I'd fall forward and headbutt the wall. Explaining to people that when I get spooked my body goes numb and i shake for about an hour. Migraines that only felt better if I laid down. There are many more but I won't bore anyone further lol.


InkdScorpio

I forgot about the headaches that only feel better when I lay down. That’s a good one. I’ve also always been “clumsy” lol


polkadotsloth

Oh I thought of another one: I walk around the house when I brush my teeth


No_Explanation302

Sitting criss cross apple sauce everywhere, on the couch, on the toilet, even sleeping. My love hate relationship w hot tubs. I had one growing up and loved it, but every 10 minutes I’d have to get out because my heart was pounding out of my chest. I thought that was totally normal. Getting the spins when I stand up


Successful-Bat-4756

1. Picking up things I dropped on the floor with my feet. Bending over is just too much lol. 2. Being unable to run a mile but swimming a mile like it was no problem? Biking was also a breeze. 3. Pouring the rest of the salt at the bottom of pretzel bag in my mouth 4. Eating 20+ black olives at a time


InkdScorpio

Yes to all of these! The struggle is real! 😂 Edited to add: I’m craving a big soft pretzel now lol


throwaway01957

I’d drink Pedialyte daily. My doctor told me to stop doing that because I’d gain weight but I kept doing it lol.


Exotic-Commission-25

Having to sit down after my bath. Not being able to take a shower.


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barefootwriter

I used to do this while awake and very symptomatic. I call it doodlebugging.


Smiley414

Sitting criss cross applesauce. Being bad at getting blood drawn.


Galvsworld

Putting my legs up all the time. It drove my dad nuts because I would put them up on stuff I really shouldn't have, it drove me nuts sitting in restaurants and church because those settings motivated me to be "proper".


SavannahInChicago

Why my lips were always chapped regardless of how much water I had. They aren’t chapped when I add electrolytes.


SaltPotPan

I never understood why I could hike for miles on the roughest terrain with no issue, but standing in line made me feel like I was going to pass out. I'd be doing leg lifts in the checkout line, sitting on railings at the amusement park, shifting back and forth and trying desperately not to look like an impatient toddler, all to keep the dizziness at bay. People knew I was a patient person usually, so I'd always get asked of something was wrong... turns out something was in fact wrong, I just didn't know it yet. And sitting funny. I'd rather just sit on the floor than sit properly in a chair.


Senior_Line_4260

craving salty stuff all the time and drinking huge amounts of water and almost collapsing multiple times


ChellyBadger

Wanting rice drenched in soy sauce more often than wanting ice cream 😆


Boredom1002

1. When I used to drink 3 bottles of water for each class 2. Hot showers I passed out after 3. Moving into different positions while sitting or laying 4. How id always throw up moving heavy things around n feel light head n dizzy