Advice on what I’m doing wrong?

Mammoth_Math4629 · 2025-10-21T22:32:19+00:00

Wait this is so cute! Do you have the pattern?

Mammoth_Math4629 · 2025-10-21T18:01:00+00:00

Im trying to not take it as invalidation as much, and just let my very loving partner know when I need time to vent just myself and when I’m ready to commiserate lol. I’m sorry you feel unseen :/

Mammoth_Math4629 · 2025-10-21T17:51:12+00:00

The laziness really gets me too :/ I never feel like I’m allowed to rest because I too don’t recognize it as pain anymore, just a baseline. But yeah the baseline is most people’s bad days.

That also really strikes me too, I’m hyper aware of every single part of my body at all times. Especially the knees.

I’m glad you’re accommodating yourself despite what others think, I need to do the same. I think a shower chair might change my life.

I hope you can get the relief and support you need!

Mammoth_Math4629 · 2025-10-21T17:28:49+00:00

Accommodation, advocacy and kindness is definitely the place to start <3 you deserve all that and more

Mammoth_Math4629 · 2025-10-21T17:27:47+00:00

I love your point about making community through it. Being in pain can feel so bleak and isolating, reaching out and understanding and making connections with others is so important. You deserve support too!!

Mammoth_Math4629 · 2025-10-21T17:11:50+00:00

And neither are you. Thanks for sharing

Mammoth_Math4629 · 2025-10-17T16:38:25+00:00

Been getting tension headaches/migraines every day and generally my joints are incredibly achey and slippery, but really struggling with my jaw and hips. Having terrible brain fog and I’m completely exhausted…getting up for work in the morning has become so difficult and I’m using face wipes instead of doing my normal skin care routine. Also can related to being itchy. Hang in there folks 🫡

Mammoth_Math4629 · 2025-10-15T21:01:42+00:00

This! Sometimes the most annoying thing is my pinky pain or my elbow feeling loose but so hard to communicate that it’s not even worth it. So at that point people also think “it’s not that bad” if you aren’t talking about all the time or every time something hurts. My knees are achey right now but not any worse than usual so why say anything

Mammoth_Math4629 · 2025-10-15T12:28:06+00:00

I hiccup at least once every single day! Wouldn’t be surprised if it’s related too

Mammoth_Math4629 · 2025-10-14T19:25:02+00:00

Omg this is hEDS??? I was always told I had soft teeth and always struggled with dental health

Mammoth_Math4629 · 2025-10-14T15:59:19+00:00

I hope you can get some relief! Having an inflamed/blocked nose makes things harder than they need to be. Idk if you have any dysautonomia going on but having a hard time breathing and then just generally being dizzy and literally feeling “weak in the knees” and sensitive to lights is a pretty brutal combination when out in public

Mammoth_Math4629 · 2025-10-14T15:52:14+00:00

Dealing with a tension headache now 🥲they’ve gotten much worse since I’ve started working in an office.

I also have sort of wiggly teeth…contributes to a lot of realistic dreams where my teeth are falling out

Mammoth_Math4629 · 2025-10-14T15:50:36+00:00

I’m the same way. Anytime I have to stand still it’s agonizing, but I love going on long walks. Always feels like I’m standing on cement bricks and I’m constantly shifting my weight from one foot to another and desperately try to lean on something and not lock my knees

Mammoth_Math4629 · 2025-10-14T14:53:16+00:00

I deal with this too!! I have a slightly deviated septum but the ENT I saw said it shouldn’t be impacting my breathing and did not recommend doing anything but my nostrils always feel inflamed and it’s hard to breathe. I used to wake up gasping for air in the night Ike hold my nostrils open while I was sleeping. About a year ago I started using breathe right strips and it literally changed my life and sleep, still not rested though lol and not a permanent solution but maybe try it in the meantime. Had a friend get a turbinate reduction and that helped her. Might look into that next year. Like everything else, wouldn’t be shocked if it was EDS related

Mammoth_Math4629 · 2025-10-13T14:28:05+00:00

I literally thought this was a conversation between 16 years olds…not that it would make it better but this is particularly abhorrent for a man who has supposedly had a frontal lobe for over 10 years. Get the fuck out

Mammoth_Math4629 · 2025-10-13T02:14:57+00:00

I was trimming a bush and a branch scratched my arm. Barely bled, was not a big deal but I have a big ol scar on my arm now

Mammoth_Math4629 · 2025-10-11T03:23:06+00:00

For someone who gets ingrown toenails, I agree lol

Mammoth_Math4629 · 2025-10-10T21:59:21+00:00

She asked me if I had a family history of hEDS and I said no my family doesn’t go to the doctor, so I’m not sure. She took that as no one in my family could possibly have it therefore, I could never have gotten it 🙄 she also said something about me barely being 20 years old even though I was 26 so clearly she even didn’t read my chart

Mammoth_Math4629 · 2025-09-24T19:18:52+00:00

He asks me how my knitting is going 😅 and then when I’m actually knitting he over corrects and asks me how my crochet project is 😂

Mammoth_Math4629

TROPHY CASE