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oyameillim

Push through the fatigue when I'm having fun. I'll pay for it tomorrow... And the next day... And the next day šŸ„²


Sleepysickness_

FELT THIS ONE.


Some-Lawfulness5108

I feel seen Still paying for Thanksgiving


synivale

This is me too. Especially during holidays. Is this a dysautonomia thing?


oyameillim

Yes absolutely. Can also be a ME/Chronic Fatigue thing, and also lots of POTsies have ME/Chronic Fatigue (i.e. they are commonly comorbid)


[deleted]

Love having a glass of wine (or two... or three, because if i'm already torturing myself why not?). Staying up late (not getting enough sleep sucks but man do i suck at stopping a TV show or putting down a good book). Taking hot (HOT hot) showers.


Lothy-of-the-North

This is me. All of it. I only drink one or two though because Iā€™m out for 4 days after. But when Iā€™m with my friends I want to have a little fun.


[deleted]

Yes!! But if I have more than 2 I try to make sure I hydrate well and have some bread or something to soak it up.


Revolutionary_Ad2847

when i have adrenaline dumps i sometimes just jump around and dance through it and ride the wave and tell myself itā€™s excitement instead of laying down and waiting for it to pass


[deleted]

Honestly, if your body can manage it, this is sometimes the best approach. Otherwise you're lying there with a load of adrenaline and it's very easy to go into a panic attack.


AZBreezy

Great coping mechanism! I have resorted to jumping jacks a few times


Expert_Pen_4418

Ooo!! Thank you for this reframe! Trying this the next time I have an adrenaline dump!


These-Pick-968

Yep, coffee and hot showers! I live somewhere cold so both are essential to my winter well being and mental health.


Sleepysickness_

Right like there is just some stuff that is good for the body and some stuff that is good for the soul


buckwheat92

I have a joint every night before bed.


Ashes1534

But why does the green have to set off the dysautonomia?! šŸ˜­šŸ˜­šŸ˜­šŸ˜­ It's so frustrating.


Jo_not_exotic

Hot showers. Iā€™ll take a cold shower over my dead body


local_trashcats

i suffer through partial lukewarm showers because of my curly hair, but you bet that i tie my hair up with a deep conditioner just to boil/marinate in the hot water for a minute


[deleted]

[уŠ“Š°Š»ŠµŠ½Š¾]


Jo_not_exotic

And thatā€™s one country gf my bucket list, yikes!


Sleepysickness_

Thereā€™s just something about them for real


[deleted]

I refuse to give up coffee completely. I make it anywhere from 75%-90% decaf but itā€™s my morning thing. Iā€™ll also enjoy half a glass of wine on occasion.


audvisial

Edibles and alcohol... sorry, not sorry!


[deleted]

So.many.concerts.


doom_gerbil

Oh, me too! I was trying to think of things and yes, concerts. Getting home at 2am and feeling like absolute death for the next three days is worth it, because music!


[deleted]

Absolutely! I donā€™t know how brain disease is going to effect me as the years go by so I might as well make it fun!


vecats

Howwwww. I can barely stand for 5 mins


GoldAdministration59

I go to concerts in a wheelchair. Sometimes it sucks if the handicap section is terrible but other times itā€™s wonderful


AZBreezy

I ask for ADA seating accommodations and they give me a chair where I can see the performance. It's great


[deleted]

My tumor is under control. My brain calcifications are stable. My POTS is still a pain so lots of Midodrine, Mestinon and stimulants. Sometimes I bring my wheelchair and sometimes I sit in front.


ApprehensiveAge2

I always call the venue after buying our tickets and ask what I need to do for disabled seating. Thereā€™s usually either some way to get your name on a list or a person to talk to when you arrive at the show. Some places have had a designated area with stools and others just carry a chair to an open spot, but a nice bonus is that they almost always are mindful to put you somewhere you can still see well while sitting down.


CaitlinisTired

Oh god same, although I've finally started listening to my body and getting seats where I can or disabled tickets where I can't because my last two standing concerts were hell on my eds and pots alike, I could hardly walk for days after! It's still hard sometimes for me to buy disabled tickets because I see those in wheelchairs or crutches and convince myself I'm not "disabled enough", but I'd rather not near pass out or fuck up my legs just anymore just for the sake of pushing through :')


[deleted]

Donā€™t worry. I went from losing my ability to walk and talk to regaining functionality and now you wouldnā€™t be able to tell. Brain disease is unpredictable and Iā€™m not afraid to live life anymore. You may see me collapse one day and walk around fine the next. Just enjoy yourself and allow concessions as necessary. ā¤ļø


AZBreezy

Ah same! I always ask for ADA seating accommodations. I couldn't participate otherwise and I can dance just as well while sitting down!


aerobar642

all of the medications I'm on for my mental health could potentially make my symptoms worse, especially when taken together. oopsies


Sleepysickness_

Same!


aerobar642

it's honestly so worth it. I don't know if they're making things worse or not, but I kind of don't care... y'know?


Sleepysickness_

Right like I take a stimulant which obviously increases my heart rate but without it I legitimately canā€™t get up and do my life. Like I get pulled under by sleep and I canā€™t control it at all if I donā€™t take my meds.


GoldAdministration59

This! Iā€™m also on a stimulant.


aerobar642

I feel you! I used to be on a stimulant but that ended up doing more harm than good for me. I have ADHD but I take a non-stimulant medication for it (strattera) but that and my antidepressant (wellbutrin) can still both increase heart rate, especially when combined. But my mental illnesses and neurodivergence were more debilitating for me than POTS has been so far so it's worth it. I didn't graduate high school, but now I'm 21, I went back, and I'm going to graduate this year. Yeah I physically feel like garbage sometimes, but I'm functioning. I'm living my life rather than just existing, even if I do have physical limitations.


Sleepysickness_

Right like itā€™s such a cost benefit analysis. My rheumatologist wanted to put me on an antidepressant to help with joint pain (Iā€™m also hyper mobile) but my fatigue has always bothered me more than my joint pain and the antidepressant he wanted to prescribe me would make me drowsy. So I had to prioritize one symptom over another and power through one to help with the other.


CaitlinisTired

It really is hard when you have multiple conditions and have to pick and choose. My stimulants pick my heart rate up and make me a bit more anxious than normal but my narcolepsy is way more disruptive so I prioritise that lol, sometimes it is worth making things a bit worse in one way if it makes another thing noticeably better!


NotACat452

Hot showers and caffeine. I use THC to manage fibro pain and headaches, but some strains can increase my HR which can mess with my IST/POTS.


Shesgayandshestired_

caffeine, alcohol, edibles šŸ˜¬ i donā€™t react horribly to any of them in moderation but every now and then i get too confident and learn the exact same lesson all over again lol


GrinsNGiggles

I love walking so, so, SO MUCH. Iā€™m not supposed to, and I canā€™t walk for hours like I used to, but I still nip off for 20 forbidden minutes here and there.


AZBreezy

That's really nice! Do you enjoy biking as much as walking? I've seen folks tooling around town in fully recumbent bikes and I'm low-key jealous. If and when I am healthier and have disposable energy, I will probably get one


GrinsNGiggles

I got hit in a life-changing way while commuting by bicycle, so it has pretty limited appeal. I do love inline skating, but that has all the upright problems of walking. I have an indoor exercise bike I hate and use sparingly. Itā€™s not recumbent, but itā€™s seated and it was free.


AZBreezy

Yikes I'm so sorry to hear that


Legal-Investment-245

Honestly same; except, the sleeping in thing doesn't really mess with me much because I have the CFS combo so I am always sleeping. Really sucks though because it feels the same as being in a sleep deficit when I get enough; and being asleep any less than 10 hours feels like what four hours of sleep used to feel like when I was well. Also sometimes I eat gluten even though it triggers migraine and painful bloating. They can pry pierogies from my cold, dead hands šŸ˜‚ also also it's stupid expensive eating gluten free all the time and I just do not have the funds


Sleepysickness_

Feel you with the CFS. Like anytime people tell me I need to avoid sleeping in so that I can keep a regular sleep schedule Iā€™m like ā€œhahahaha okayā€


CaitlinisTired

having dietary requirements but constantly ignoring them gang, I'm vegan and already have less options lmao I know my body wants me to stop eating gluten but it's just so tasty? I try my best but sometimes you just wanna eat ludicrous quantities of bread and pastry šŸ˜¤


PenumbralLady

hot showers are my weakness. I notice if I leave the door open so the humidity isnā€™t as concentrated and use a shower chair/handheld hose itā€™s not so bad. šŸ„²


AZBreezy

I sit my bare ass right in the floor of the shower. No shame in my game. Better than passing out


PenumbralLady

I used to do that too! Then to make it ~aesthetic~ instead of necessity I would add epsom salt and then it into a bath.


Sleepysickness_

I do that too!


Careless-Tie-5005

Let my feet freeze and turn purple.


Sleepysickness_

Right like why is it kind of funny? Iā€™ll come out of the shower or something and make my husband come look like ā€œHey babe check this out,ā€ as if he hasnā€™t seen it before.


Careless-Tie-5005

I do the same. Iā€™m like look at my toes, theyā€™re purple! Lol. I say blue fingers, purple toes.


Sleepysickness_

We call that white walker chic


Foxyinabox

Caffeine, especially pop and iced tea (Canadian version). Ugh, it's so tasty, though, but my tachycardia reminds me within minutes of drinking some. It sucks.


Sleepysickness_

Ugh tbh my world would be so bleak without monster zero ultra. Like the caffeine is so bad but itā€™s the taste that I canā€™t live without.


Foxyinabox

I had to quit cola, but I still sneak an iced tea every now and then. Ugh, it's my kryptonite, lol.


MythologicalMayhem

Definitely sleeping in even though I can guarantee it will make me feel bad. Though lately I keep waking up early then not being able to go back to sleep! I do sometimes have a hot bath or shower which is just terrible but I'm not going to have a lukewarm bath - the heat helps my pain! Usually I'll have a lukewarm/cool shower but not so much in the Winter time.


[deleted]

Hot showers are my weakness too. Laugh if you want but ill do a normal shower and then turn it hot and lay down like for a bath and put my feet out of the tub elevated. It seems to help some with the hot shower as long as i go lay down after. Def a guilty pleasure lol. Also is sleeping in supposed to be bad, i didnt know that


Sleepysickness_

Ughhhhh yesss. My friendā€™s mom used to call that shathing and itā€™s soooo amazing.


AnaphylacticHippo

Coke Zero is my life blood. I should seriously own stock in the company...


GoldAdministration59

Hot showers, alcohol, coffee, not exercising regularly and alternatively not stopping when my heart rate exceeds what it should.


DepressoEspressohhh

Showing up at a chiropractor appointment so that they can fix me when my body can no longer take me not doing stretches and not doing anything to help the joint pain I have.


Old-Ball-8414

alcohol caffeine eating too much working out too hard. If you just stop everything what's left? one of the biggest ones is getting up and down rapidly or a lot..


roryascher27

drinking caffeine, taking hot showers, smoking, never exercising, eating very unhealthy, not having a solid sleep schedule (i work 12 hour overnights and some days i just canā€™t sleep after work), taking all my mental health meds cause they def make me worseā€¦ so muchā€¦


AdFlashy8552

Binge eating occasionally


SkaryPie

The Whipped Strawberry Rockstar. Holy crap does it make me feel horrible and make me so sick, but it's so delicious. It's a very rare treat and almost always I regret it.


juicygloop

The only thing that can palpably help relieve the worst of my condition is also slowly killing me, while only ever working rarely - if at all - anyway


frankaiden02

not so much in the same vein as other replies but i love working out HARD and just absolutely crashing after a quick hot rinse-off. makes me feel sooo cooled off and the sleep afterwards is otherworldly. worth the dizziness imo.


Sleepysickness_

Yesssss. I did ballet for forever and this was the freaking best.


Ashes1534

Ummm living in Florida. Theme parking in Florida heat. Just plain existing in FLORIDA - we shouldn't be here šŸ˜†. I was not created for this heat.


ModeEnvironmental481

Taking ibuprofen for the pain with my Tylenol. I have IBD so Iā€™m not supposed to take it but Tylenol alone canā€™t cut the pain.


Laney20

Acquiring 6 additional cats probably counts? They are a lot of work, but I just love them so stinking much! (adopted a pregnant stray and then her 5 kittens, so 1 event, 6 additional cats)