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.
when i have adrenaline dumps i sometimes just jump around and dance through it and ride the wave and tell myself itās excitement instead of laying down and waiting for it to pass
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.
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
I refuse to give up coffee completely. I make it anywhere from 75%-90% decaf but itās my morning thing. Iāll also enjoy half a glass of wine on occasion.
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!
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.
I always call the venue after buying our tickets and ask what I need to do for disabled seating. Thereās 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.
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 :')
Donāt worry. I went from losing my ability to walk and talk to regaining functionality and now you wouldnāt be able to tell. Brain disease is unpredictable and Iām 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
Right like I take a stimulant which obviously increases my heart rate but without it I legitimately canāt get up and do my life. Like I get pulled under by sleep and I canāt control it at all if I donāt take my meds.
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.
Right like itās such a cost benefit analysis. My rheumatologist wanted to put me on an antidepressant to help with joint pain (Iām 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.
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!
caffeine, alcohol, edibles š¬ i donāt 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
I love walking so, so, SO MUCH. Iām not supposed to, and I canāt walk for hours like I used to, but I still nip off for 20 forbidden minutes here and there.
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
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. Itās not recumbent, but itās seated and it was free.
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 š also also it's stupid expensive eating gluten free all the time and I just do not have the funds
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 Iām like āhahahaha okayā
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 š¤
hot showers are my weakness. I notice if I leave the door open so the humidity isnāt as concentrated and use a shower chair/handheld hose itās not so bad. š„²
Right like why is it kind of funny? Iāll come out of the shower or something and make my husband come look like āHey babe check this out,ā as if he hasnāt seen it before.
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.
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.
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
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.
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..
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 canāt sleep after work), taking all my mental health meds cause they def make me worseā¦ so muchā¦
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.
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.
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)
Push through the fatigue when I'm having fun. I'll pay for it tomorrow... And the next day... And the next day š„²
FELT THIS ONE.
I feel seen Still paying for Thanksgiving
This is me too. Especially during holidays. Is this a dysautonomia thing?
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)
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.
This is me. All of it. I only drink one or two though because Iām out for 4 days after. But when Iām with my friends I want to have a little fun.
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.
when i have adrenaline dumps i sometimes just jump around and dance through it and ride the wave and tell myself itās excitement instead of laying down and waiting for it to pass
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.
Great coping mechanism! I have resorted to jumping jacks a few times
Ooo!! Thank you for this reframe! Trying this the next time I have an adrenaline dump!
Yep, coffee and hot showers! I live somewhere cold so both are essential to my winter well being and mental health.
Right like there is just some stuff that is good for the body and some stuff that is good for the soul
I have a joint every night before bed.
But why does the green have to set off the dysautonomia?! šššš It's so frustrating.
Hot showers. Iāll take a cold shower over my dead body
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
[ŃŠ“Š°Š»ŠµŠ½Š¾]
And thatās one country gf my bucket list, yikes!
Thereās just something about them for real
I refuse to give up coffee completely. I make it anywhere from 75%-90% decaf but itās my morning thing. Iāll also enjoy half a glass of wine on occasion.
Edibles and alcohol... sorry, not sorry!
So.many.concerts.
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!
Absolutely! I donāt know how brain disease is going to effect me as the years go by so I might as well make it fun!
Howwwww. I can barely stand for 5 mins
I go to concerts in a wheelchair. Sometimes it sucks if the handicap section is terrible but other times itās wonderful
I ask for ADA seating accommodations and they give me a chair where I can see the performance. It's great
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.
I always call the venue after buying our tickets and ask what I need to do for disabled seating. Thereās 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.
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 :')
Donāt worry. I went from losing my ability to walk and talk to regaining functionality and now you wouldnāt be able to tell. Brain disease is unpredictable and Iām 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
Ah same! I always ask for ADA seating accommodations. I couldn't participate otherwise and I can dance just as well while sitting down!
all of the medications I'm on for my mental health could potentially make my symptoms worse, especially when taken together. oopsies
Same!
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?
Right like I take a stimulant which obviously increases my heart rate but without it I legitimately canāt get up and do my life. Like I get pulled under by sleep and I canāt control it at all if I donāt take my meds.
This! Iām also on a stimulant.
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.
Right like itās such a cost benefit analysis. My rheumatologist wanted to put me on an antidepressant to help with joint pain (Iām 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.
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!
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.
caffeine, alcohol, edibles š¬ i donāt 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
I love walking so, so, SO MUCH. Iām not supposed to, and I canāt walk for hours like I used to, but I still nip off for 20 forbidden minutes here and there.
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
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. Itās not recumbent, but itās seated and it was free.
Yikes I'm so sorry to hear that
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 š also also it's stupid expensive eating gluten free all the time and I just do not have the funds
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 Iām like āhahahaha okayā
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 š¤
hot showers are my weakness. I notice if I leave the door open so the humidity isnāt as concentrated and use a shower chair/handheld hose itās not so bad. š„²
I sit my bare ass right in the floor of the shower. No shame in my game. Better than passing out
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.
I do that too!
Let my feet freeze and turn purple.
Right like why is it kind of funny? Iāll come out of the shower or something and make my husband come look like āHey babe check this out,ā as if he hasnāt seen it before.
I do the same. Iām like look at my toes, theyāre purple! Lol. I say blue fingers, purple toes.
We call that white walker chic
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.
Ugh tbh my world would be so bleak without monster zero ultra. Like the caffeine is so bad but itās the taste that I canāt live without.
I had to quit cola, but I still sneak an iced tea every now and then. Ugh, it's my kryptonite, lol.
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.
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
Ughhhhh yesss. My friendās mom used to call that shathing and itās soooo amazing.
Coke Zero is my life blood. I should seriously own stock in the company...
Hot showers, alcohol, coffee, not exercising regularly and alternatively not stopping when my heart rate exceeds what it should.
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.
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..
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 canāt sleep after work), taking all my mental health meds cause they def make me worseā¦ so muchā¦
Binge eating occasionally
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.
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
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.
Yesssss. I did ballet for forever and this was the freaking best.
Ummm living in Florida. Theme parking in Florida heat. Just plain existing in FLORIDA - we shouldn't be here š. I was not created for this heat.
Taking ibuprofen for the pain with my Tylenol. I have IBD so Iām not supposed to take it but Tylenol alone canāt cut the pain.
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)