#shoutout to my tachycardia <3

[ghostzzy]

took a full hour to get the scheduling worked out with the front desk, took 90 seconds to actually put the holter monitor on

#i love how we do things in the american healthcare system <3 #anyway. my resting heart rate was 118 during my echo so <3 this holter is gonna be doing Work over these next 48 hours! #shoutout to my tachycardia <3 #izzy.txt

[zuuriell]

i felt like doing something so imma do this for the month! i’ll put all my answers below the cut because it’ll probably get quite long lol

1. Postural Orthostatic Tachycardia Syndrome (aka POTS)

2. well, it’s pretty complicated 😭 i’ve had some symptoms for probably like a year, but around late april/early may this year i couldn’t even shower or stand up too long from how bad it got. the uk healthcare system is absolute shit though, so even tho i’ve been a&e multiple times and tried to explain how much it’s all been affecting me, i still don’t get to see a cardiologist until february 2024 :( but we’ve ruled out other options of what it could be, and my mum’s cardiologist friend agreed when i said i thought i had POTS, and my GP agrees, and my potsie friends agree so i’m kinda like unofficially diagnosed as of now?

3. relating to the last point, i am not officially diagnosed yet because of the slow asf NHS so yeah :,) but i mean to figure out what i was experiencing was POTS, it did take me like 8 months? but probably around 10 for me to accept the fact that i most likely have it too 😭 an official diagnosis unless i can rack up the money to go private is probably gonna take me like another year at this rate, but hopefully it won’t be that long

4. i have to pick just one? LOL uhh probably the blood pooling! it’s so annoying because especially when im out and about, i can’t be with my legs in the air 24/7 so it’s always bound to happen. compression socks help but only to an extent, and it stops me from doing so muchhhh :( it means that queueing for things and standing for more than a couple minutes is so so much harder, and if i have too much blood pooling in one day then my can legs ache for DAYS after that. it’s so painful and annoying and just aaghhh i hate it

5. on a regular day: i wake up, chug water which i leave by my bed for the mornings, get out of bed slowly and walk downstairs to make breakfast. i chug electrolytes and go for a short dog walk, then come home to do schoolwork and my family make lunch/dinner so i don’t have to stand around too long. i’ll make sure i get any chores done that i can, and i’ll try to chill in the evening

on a bad day/flareup: i wake up a lot later, have my electrolytes with water and only get out of bed when i need to. i’ll do schoolwork from my bed (if i feel well enough to concentrate), and have salty snacks rather than proper meals, unless my family make me anything. i stretch from bed to combat deconditioning, and if i feel decent enough i can have a bath

6. i don’t have access to any specific medication unfortunately, so i currently just manage with painkillers when my chronic pain is extra bitchy + anti-nausea meds when i feel sicky

7. salt sachets (the little ones you get at like mcdonald’s and stuff) to shove in my purse/pocket in case symptoms flare while i’m out, compression garments, electrolyte tablets, and a recliner bed so i can raise my legs more when resting

8. electrolyte drinks!! not the tablets though (i hate the taste of all the tablets except like 1 lol) - my fav is making electrolyte drinks from scratch! at the moment i really love iced lemon water with honey and salt. i also saw smth about this fancy coconut water drink to make so i may try that and it may become my favourite :0

9. salty crackers, salt and vinegar/ready salted crisps, mcdonalds fries (stfu i know these aren’t healthy but they’re my favs 😭), pretzels, nuts

+ my fav foods to dump a bunch of salt on: pasta, veggies and dips (SALTED CUCUMBER IS SO GOOD), pizza, chips, soup, risotto, probs almost anything i eat tbh

10. i’ve only got one pair but i love them so shoutout to my knee-length black compression socks <3

11. i don’t have any 🥲 i really wish i could have a cane or maybe even a rollator but my family make fun of me and i can’t afford one lolsies

12. i try to do some stretching in bed so that i can safely work against deconditioning, keeping very hydrated, trying to stay upstairs as much as possible so i don’t have to suffer my staircase, asking family to make food for me so i can save energy, taking pain meds when needed, having a cold bath (if possible), trying to keep preoccupied with work if i can, but if not i’ll watch movies on my ipad and stuff

fun fact: i wrote this on a flare LOL so oddly fitting and now i’ve already made myself a plan for the next few days!

13. the thing that’s helped me most is accepting that something is wrong and remembering to listen to my body. going through life pretending that i’m perfectly abled and don’t have anything wrong causes much more harm to me than letting myself rest a few days. it definitely isn’t easy though - i still find myself getting stressed over work deadlines don’t get me wrong, but i’d like to think i’m getting better at adapting to things and noticing when a flare is coming on so i can be prepared to take the time for my body to rest.

14. chairs are your best friends now. i steal the chairs/stools from the kitchen table whenever i’m doing chores standing up for more than 30 seconds. compression socks also help! OOH and if you’re using hot water/heated stuff and struggle with temperature dysreg, i usually grab myself a cup of ice to munch on or an icepack to hold on my chest so that i don’t overheat :)

15. i’m afraid i don’t have much input for this as i left school for health reasons 😭 but i suppose keeping hydrated, getting accommodations such as not too many stairs + being allowed to take more days off to rest for flares, compression gear where possible, staying high on sodium + electrolytes, and extended deadlines would be good!

16. i’m gonna sound so silly for this but i love rewatching my comfort stuff. i’ve got my fav youtubers + fav films/series all compiled in a list, and i spin a wheel to decide which one i’m gonna watch! other activities i enjoy though are reading, playing video games, doing goofy quizzes online, chatting with friends, and going on pinterest sprees!

17. leading on from the last prompt, my fav is a marvel movie - tbh all of them bring me so much comfort but my favs are avengers, black widow, loki and any of the thor films <3

18. my main support system is my wonderful boyfriend, kurtis @agere-tomhiddleston-imagines 💚💛 he’s helped me through so much and he’s so supportive of me no matter what, and i love him dearly for that (and how awesome he is in general ofc) <3 other than that, my parents are semi-supportive! they still get things wrong sometimes but overall they’ll help if i need things and they handle all the shitty healthcare workers for me so i truly appreciate them for that 😭🙏 ooh and definitely just the general online community of chronically ill people/potsies!! i love y’all so much 🫶

19. okay i don’t know if this counts because she was an orthodontist rather than a doctor/nurse, but when discussing me getting braces she asked about my medical history and i explained it all but said i haven’t been diagnosed so i understand if she can’t accommodate me. then she said to me, “hun.. just because you don’t have a piece of paper with a few words on it, doesn’t mean you aren’t ill. if you’ve got symptoms but no confirmed cause, you’ve still got the symptoms, and i’m not gonna ignore those unless you want me to” - the validation was so relieving after years of fighting for doctors to listen to me and believe me :,) ❤️

(i’ll update this throughout the month! <3)

#vitassium challenge #potsawareness #chronically ill #dysautonomia #potsie #spoonie #chronic illness #pots syndrome #disabled