#dysautonomia

[bluejayqueen]

Is anyone else out here flaring up really bad because it's getting warmer out?

I'm out here fighting.

[wormslikeme]

Yearning ahead

Being chronically ill for me is wanting so desperately to ask for comfort (for me it’s mostly physical comfort I need) when in pain but being too:

A) anxious that people will reject me/take it the wrong way

B) not wanting to bother anyone, so I just sit silently in pain

C) wanting so desperately for someone (anyone at this point) to just like…..be physically there for me when I’m suffering.

Like when I have a migrane all I want is for someone to hold me and tell me it’s going to be okay. It may not make the pain go away but it would sure beat crying into my pillow and gripping it in a pitch black room while I try not to throw up from pain. Completely alone.

[vtk13]

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me

[thebibliosphere]

Dysautonomia is so wild.

You'll just be vibing and chilling, and your nervous system will go, "Hey, can't help but notice you ate a little more food than usual; we're gonna have to shut everything else down and direct all the blood in your body to your stomach," and suddenly you're lying on the floor with your legs elevated and a heart rate of 140 because your body doesn't body so good.

[whoopsie-doodle]

This is your reminder to clean your emotional support water bottle.

Check the o rings for mold.

[pleastrop]

god please take my debilitating joint pain away and give it to israel

[chronic-lee-lizard]

“You’re too young to be in pain”

I will end you.

[salt-baby]

POTS Medication Vocabulary

after about the third time a doctor prescribed a medication that made my POTS drastically worse, and about three doctors visits past giving up on being an easy patient, i started asking my doctors the following questions whenever they prescribed a new long term medication:

is this medication a hypotensive? (will this medication lower my blood pressure?)

does this medication have a risk of tachycardia? (can this medication raise my heart rate?)

is this medication a diuretic? (will this medication dehydrate me?)

can this medication cause hyponatremia? (will this medication cause my body to lose salt?)

your doctor likely doesn’t know all of this off the top of their head for every medication, but they should know the most common adverse reactions. some may simply tell you they have no clue. i still think it’s worth asking to force them to consider these mechanisms.

for additional consideration:

your pharmacist likely knows the answers to these questions better than your doctor does. 

an additional list of types of drugs which should be avoided is available here, in the table on the fourth page. (note that propranolol, a beta blocker, is often prescribed for POTS but is discouraged by this paper. as someone whose taken it, it’s worth trying to see if it will improve symptoms, but didn’t for me. Additionally, these are just guidelines, and in those with, for example, both hEDS and POTS, the benefits of opiates for pain relief may be worth the risk of worsening POTS.)

regardless of what the doctor says, I always look up the FDA info sheet before taking a medication. these can be found pretty easily on google (your med + “fda pdf”), and list most of the adverse effects. I’m happy to make a post about reading these info sheets.

there’s a reason prescribing medication is left to those with years of medical training - it’s a complicated and difficult process. but oftentimes those who do this work are so overworked and burnt out, they don’t have the ability to read someone’s entire medical file, or be aware of an adverse event that only affects those with an uncommon condition. I find asking these questions forces my doctors to think about my chronic conditions, and after so many adverse events, I always check a medication for myself before taking it. 

remember that you can and should refuse to take a medication that is making your life worse or harming you. even pediatric patients have the right to refuse a medication, and often times, I’ve found nothing other than a very firm “no, I refuse” will get a doctor to consider other options. and even though its against the norm, remember that you have the right to ask your doctor why they’ve chosen that medication for you.

as always, feel free to ask questions, they make my day!

[melodymorningdew]

Imposter syndrome is a bench

Image description: drawing of a nondescript person with a tired/unimpressed expression on their face right next to a drawing of someone vibrating with excitement

Caption:

Me: "I must be faking my illness. I went on a walk yesterday."

Also me: "MY WALKER AND SHOWER CHAIR ARE ON THEIR WAY"

[neonarboretumart]

🎀And we shouldn’t be treated like we are 🎀

This is my most popular post, so I just wanted to add, if you’d like to support my work, this is my Etsy shop:

[talkethtothehandeth]

Respectfully how the fuck do you take hot baths with pots and not die

Oh trust me, it’s not without consequences. I add cold water to the bath if it gets to be too much, and when I get out I immediately sit down in my towel while my heart calms down that way I don’t eat shit on the bathroom floor (and that’s also why I have to have the door unlocked, love that for me) I didn’t used to have heat intolerance but now I do, and my body hurts enough that I make the decision to walk through the flames of hell each time instead of dealing with my wack ass degenerative joints

[a-sassy-bench]

hey disabled babes. i promise your disability aids do not ruin your aesthetic. they are an aesthetic. rock them.

.

[chronicallydragons]

It is once again Dysautonomia Awareness month, and I am, as always, Aware of Dysautonomia

[thebibliosphere]

I had caffeine for the first time tonight in over five years.

It feels like my brain is coming back online.

Unfortunately, it also feels like my nervous system got hit by a freight train. My hEART.

[rosesandthorns44]

That chronic illness feeling where you don't want to die soon, but the idea of spending another 60 or so years in this body makes you want to scream.