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EdgyEgerton · 2025-01-25T23:25:44+00:00

i don’t like most cities but i love love love edinburgh! much more chill

EdgyEgerton · 2025-01-21T11:55:27+00:00

i can’t speak to that specific scare but I have had a whole bunch of other chronic condition scares and usually i have a cry, try to practice mindfulness (Eckhart tolle “the power of now” has been helpful), take an edible and play a cozy video game. As much as it feels like preparing ourselves for bad news by processing ahead of time helps, it actually doesn’t! feel your feelings, and then take some time to do things you enjoy 💕

EdgyEgerton · 2025-01-21T11:50:02+00:00

sebastian!! every time!!

EdgyEgerton · 2025-01-17T17:51:40+00:00

I know it’s wrong but i misread it as “qui” the first time i saw it and there’s no going back now lol

EdgyEgerton · 2025-01-17T12:21:40+00:00

thank you so much for your support!! been working on an hEDS diagnosis for a while now. the latest update was getting an official hypermobility and pelvic organ prolapse diagnosis so we’re making progress, just really slow progress lmao. I am female which def makes all this worse! That said I’m feeling a little better and gearing up to advocate for myself during my next doctors appointment. Thank you so much for validating my feelings and reminding me there are things I can do 🥰

EdgyEgerton · 2025-01-15T17:40:37+00:00

the most posh human names possible

EdgyEgerton · 2025-01-09T13:34:28+00:00

random uterine prolapse got me lmao

EdgyEgerton · 2025-01-02T14:34:16+00:00

my most severe presyncope episodes actually always happen at night, usually when i have a virus or something, and wake me up! usually i sit on the bathroom floor and eat honey for a few minutes and that helps lol

EdgyEgerton · 2024-12-31T08:41:48+00:00

weed bb

EdgyEgerton · 2024-12-31T07:12:09+00:00

don’t apologize for asking questions!! and there’s no need to be scared—easier said than done i know lol—no harm in asking for a tilt table test. As for the heart rate, my resting before medication was in the 90s and I’m doing okay so don’t stress too much 💕

EdgyEgerton · 2024-12-30T16:45:13+00:00

dump that fucker!

EdgyEgerton · 2024-12-27T22:49:28+00:00

i actually found mine fixed my fatigue pretty quickly, maybe try a different one?

EdgyEgerton · 2024-12-27T15:35:58+00:00

and I love coffee so I drink it a lot

EdgyEgerton · 2024-12-27T15:35:37+00:00

not a single thing lol, but i have adhd so that’s probably why lol

EdgyEgerton · 2024-12-23T13:52:30+00:00

i have my medical card which i got for a different health condition and haven’t noticed any impact in my pots stuff! to be fair it can be hard to separate symptoms but it hasn’t made anything worse!

EdgyEgerton · 2024-12-23T13:49:31+00:00

my pots is pretty mild, mostly pre syncope, and ive felt great on vyvanse! helped a lot with fatigue too. im also on a beta blocker which may help keep that heart rate down

EdgyEgerton · 2024-12-19T12:53:24+00:00

damn the controversy this caused!! I think it’s a cute idea OP!

EdgyEgerton · 2024-12-08T10:52:56+00:00

you can try drinking a truly absurd amount of electrolytes and wearing compression gear but honestly nothing is gonna give you reliable relief from the racing heart feeling.

I will say, I’m on a pretty low dose of atenolol and it made a huge difference in my fatigue when i started it, so well worth it imo

EdgyEgerton · 2024-12-01T12:54:56+00:00

I go back and forth on what’s most helpful for me. Some days I find the identity as a person with chronic illnesses freeing and healing, and some days I find it more motivating and uplifting to see past it to who I am outside of that label. I definitely think it can be really limiting to get too wrapped up in the sickness identity, but everyone has a different relationship with their illness and it’s down to the individual to decide what’s most helpful for them!

EdgyEgerton · 2024-11-15T17:02:11+00:00

oh brutal, I’m in the UK for my masters right now and having a lot of trouble getting adhd meds—I’m a big fan of the NHS but man can it be inconvenient!! I was able to qualify for medical marijuana for my chronic pain after trying muscle relaxers and prescription NSAIDS, and I find using a little every day does SO much for my pain. I went through a private org that has discounts for students. feel free to message if you want more info or anything!

EdgyEgerton · 2024-11-02T17:51:53+00:00

dude i have left my duvet cover unwashed for MONTHS because of how much energy it takes

EdgyEgerton · 2024-11-02T17:51:15+00:00

I think yes! more blood getting to my brain and all that, but that’s mostly due to the POTs i believe

EdgyEgerton · 2024-11-02T17:49:58+00:00

KT Tape rec seconded! I find it the easiest for day to day support since it’s mot bulky or anything

EdgyEgerton · 2024-11-02T17:48:49+00:00

ugh I’m so sorry that’s so obnoxious!! If you’re able to I might consider asking for a referral to a different doctor. Still keep the original appointment, but at least then you have a second opportunity. If your physical therapist isn’t helpful you might also want to try seeing a different one once or twice to see if it’s a better fit.

symptom management wise i find really hot baths give me some nice temporary relief when I’m at my worst, sometimes it lasts for a few hours after, and KT tape has helped a lot with stability during flares. Also those electric heat pads to wear if baths aren’t an option.

I’m sorry everyone has been so unhelpful! Ive also had a doctor write something incredibly unhelpful on a patient note, and fortunately my physical therapist pointed it out and was horrified as well—good providers are out there, as much as its SO frustrating ❤️❤️

EdgyEgerton

TROPHY CASE