I wish I had the words to describe what it’s like to people who don’t experience it. I wish I had a way to explain how much weight is behind “I’m tired.” I wish that I could make them understand why I can’t just push through and work anyway. I wish I could tell them what it’s like.

fuck I hate having POTS all I’ve been doing for the last half hour is lay down. Why the fuck is my heart racing and pounding???????

Any other potsies or disautonomia girlies on this app? having a rough day symptom wise and wondering if anyone can relate

Disability awareness art by Brittany Ojeda.

Official gravity tester.

Drop it like it's POTs.

Hello darkness my old friend, I stood up too fast again.

Medical rod w/snake

Not to brag but I'm what doctor's call moderate to severe.

Ableism is not punk.

What doesn't kill you requires a co-pay.

I'm at my witts end. I don't know what to do.

I can't get a job. I'm an ambulatory wheelchair user with POTS (and a host of other things). Everywhere I apply can legally discriminate against me.

What do I do? Where do I go? I'm thousands of dollars in debt, ruined credit, etc etc. I dropped out of college for a semester in hopes I could focus on working and get back on my feet but it feels like a pipe dream to ever go back.

I'm lost. Even places that help you find a job tell me I'm screwed. I'm not disabled enough to get benefits but I'm not able-bodied enough to work.

Does anyone else find the flavor of stevia and other artificial (or “natural”) non-sugar sweeteners distracting, gross, and/or nausea inducing?

(Check bottom of tldr solution)

My POTS doctor along with encouraging me to eat more salt and drink electrolyte heavy drinks wants me to stay away from sugar because it can worsen POTS symptoms. Fine.

Accept not really because most electrolyte drinks/powders have some kind of sweetener, which means if it’s not sugar it’s usually stevia or the like, which in turn makes me nauseous and makes it harder for me to eat and drink, which I need to do to manage my POTS symptoms!

Now some might say I should just pick the lesser of two evils or find a better more expensive drink/powder that meets both requirements. Sadly, I’m broke and Gatorade zero powder is kinda the best bang for your buck. But I have found some alternate solutions.

In the evening instead of Gatorade I have a V8 (which has better sodium and potassium anyway) and in the morning I add extra salt to my Gatorade. This not only bumps up my last intake, but balances and disguises the sweeteners unwelcome taste.

My ratio is:

24 oz of water

1 Gatorade zero packet

A thin layer to completely cover the cap of my Trader Joe’s salt grinder (or approximately a little less than a 1/4 tsp)

Your mileage may vary, but this was a real game changer for me. I may start trying to add salt to other non-sugar sweetened beverages.

i have been sitting down for an hour and a half calm tf down bitch

Tomorrow I have a doctor's appointment with my neurologist for a POTS diagnosis.

I am scared as fuck I'm gonna get ignored cuz Im fat and a "woman" and poor. I have dysautonomia for sure but I fear a man won't listen to me or my girlfriend or my mom about how my quality of life has hit an all-time low since I got sick. Also, I'm looking into getting a diagnosis for Ehlers-Danlos syndrome and mast cell activation. I don't remember what is for what now! I have my lovely girlfriend coming with me and my intimidating mom can come in if I need her.

I'm tired just thinking about it.

how’s the october slide treating y’all?

Can you believe that there are people who can spend time doing vaguely physical activities outside, and then just like, breathe normally. Crazy.

(god I am so out of breath)

Ya know I really wish sitting didn’t feel like I was fucking sprinting. Why for the love of everything does my heart rate decide to be 140 when all I’ve been doing for the last 20(? probably more) minutes is be sitting down. Fuck I hate disautonomia

Had my covid booster done yesterday. Because I’m vulnerable I am able to get it at the same time as the 50+ crowd and the amount of people that glare at you because you’ve been approached (I did not ask for any accomodations, my mum and I were approached by the people working) to skip the queue because you’re visibly disabled and they’re ablebodied… 🙄 But people glaring at you for existing does do wonders for dealing with imposter syndrome & internalised ableism. I felt awkward at first, thinking ‘I should be standing in the queue with everyone else’ then seeing some people glaring turned on my mental petty bitch mode ‘Yes I can skip the queue because I have valid reasons to do so’. Like you can see my mobility aids and sunflower lanyard, you can see I have issues standing and walking whereas everyone else in that queue was (presumably) ablebodied (there was one other older gentleman with a cane who was right at the end of the queue when I got skipped forward who I insisted go ahead of me because he would have gone next anyway and I was fine, sat down in a waiting area)

Not to mention the infantilism by the workers because they only spoke to my mum the whole time instead of talking me 🙄 but that might also be cancelled out by my severe anxiety and because if they had approached me I probably would have gone “no its fine” although I only had my crutches instead of my rollator and I would absolutely NOT have been fine standing in that queue because that would have taken at least 10+ minutes. The medical person giving me the injection was also a bit infantilising, he kept going “do you fully understand?” while listing the information and when I had the jab and cotton wool taped to my arm he kept going (you’re doing so well dear) and idk if that was because of my disability or because I was just younger than everyone else there but… yeah

pov adhd and chronically ill:

only snooze your meds alarm or you will faint

(if I just turn my alarm off then I will never take my meds. I have to keep snoozing it)

(I ment to take my meds an hour ago, but I turned my alarm off instead of snoozing it and I completely forgot I had to take them, then I stood up off the couch and almost slammed my head on the coffee table because I was going doooooown)

Internalised ableism meets autistic burnout

I’m writing on this burnout topic again (third time this week) because, as per my last post, allowing myself to write each day is a case of throwing my “ADHD part” a fish when it desperately needs something to focus on, just so long as I don’t hyperfocus so much it adds to my burnout. After all, writing doesn’t require me to hold a conversation, I don’t get overly stimulated by it and it allows…

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me, nervous for my tilt table results to load:

I hope I got a good grade in tilt table, something that's normal to want and possible to achieve

ough I do NOT feel good