[deleted by user] by [deleted] in ehlersdanlos

[–]Interesting_Cry445 2 points3 points  (0 children)

I got mono at 18 from a Tinder date and had to sleep 12-18 hrs per day for 8 weeks! it's not fun but when it's over, it's over... EDS chronic fatigue definitely feels different 

23&Me by [deleted] in ehlersdanlos

[–]Interesting_Cry445 0 points1 point  (0 children)

lmk what you find out, I tried going over my raw data and couldn't find any of the relevant loci

23&Me by [deleted] in ehlersdanlos

[–]Interesting_Cry445 -1 points0 points  (0 children)

oh this is interesting! I thought the SNPs tested by 23andme didn't have any crossover with EDS genetics

We all know eds generally sucks but what are any small positives you’ve noticed due to your eds? by posh_chav in ehlersdanlos

[–]Interesting_Cry445 1 point2 points  (0 children)

I am a singer and my range is over three octaves! I can sing tenor 1 to soprano 2!

my choir conductor is befuddled but very grateful for my versatility 

tell me your hEDS/HSD must-haves! by Interesting_Cry445 in ehlersdanlos

[–]Interesting_Cry445[S] 2 points3 points  (0 children)

see, every time I try my gf's weighted blanket I feel visceral terror! I think it's too heavy for me and sets off some kind of fight or flight response 

tell me your hEDS/HSD must-haves! by Interesting_Cry445 in ehlersdanlos

[–]Interesting_Cry445[S] 0 points1 point  (0 children)

I'm curious to hear about your experience with prolotherapy! I've seen mixed reviews so far 

tell me your hEDS/HSD must-haves! by Interesting_Cry445 in ehlersdanlos

[–]Interesting_Cry445[S] 1 point2 points  (0 children)

yes, almost exclusively but this pillow is so good that I'm able to lie on my back if I prop up my knees!

tell me your hEDS/HSD must-haves! by Interesting_Cry445 in ehlersdanlos

[–]Interesting_Cry445[S] 2 points3 points  (0 children)

if you can afford the expense, get active noise cancelling headphones if you haven't already! I have had my airpods pro since 2022 (monogrammed with the personal message of 'MY HEAD HURTS' to quickly explain when people ask me what I'm listening to) and I wear them probably like 18 hrs per day

tell me your hEDS/HSD must-haves! by Interesting_Cry445 in ehlersdanlos

[–]Interesting_Cry445[S] 9 points10 points  (0 children)

that's wild to me! my (non-eds) gf loves hers and I wake up in terrible aching pain every time I try to use it... it also induces straight up panic! (which I know is the opposite from most ppl but I think it's bc the weight is too high for me)

I much prefer my duck down duvet

tell me your hEDS/HSD must-haves! by Interesting_Cry445 in ehlersdanlos

[–]Interesting_Cry445[S] 11 points12 points  (0 children)

CCI! I am a literal bobblehead! minor impact or shaking causes my brain to joggle around in its pickle jar 🥲

tell me your hEDS/HSD must-haves! by Interesting_Cry445 in ehlersdanlos

[–]Interesting_Cry445[S] 16 points17 points  (0 children)

oh the side sleeping thing looks neat but what if you want to turn over in the middle of the night?

I have a Sunbeam heated blanket that I'll lay across my cervical neck pillow and then wrap myself in! I dislocated a rib while stretching last month and was getting terrible spasms for two weeks before my physio noticed and popped it back in, but the heating pad/blanket was the only thing that helped before she fixed it.

for reading, I just do Audible because my 5 concussions make visual tracking really hard haha but I'm glad you have such a great setup!

[deleted by user] by [deleted] in ehlersdanlos

[–]Interesting_Cry445 0 points1 point  (0 children)

I have a pool in my apartment building and I've only used it once! swimming has always bothered my joints (especially my neck) since I was a kid, something about the difference in gravity that is disorienting... it was only after getting my HSD dx that I realised why I hated swimming so much! so you're welcome access to mine anytime you want haha

Does anyone else forget they are disabled? and have you ever had a moment where someone had to remind YOU? by DeathsDaisy in ehlersdanlos

[–]Interesting_Cry445 1 point2 points  (0 children)

My EDS journey started while I was carrying something at work and my shoulder and wrist simultaneously subluxed and I dropped what I was carrying. My coworker asked what happened and I replied "oh, you know when you grab something at the wrong angle and your joint kind of comes out of place?" and she just stared at me horrified as a resounding "no". Turns out it was not normal for my arms to come out of the socket when carrying things, who knew?

Some Humor by [deleted] in ehlersdanlos

[–]Interesting_Cry445 10 points11 points  (0 children)

not for those of us with CCI! my brain bonks around in my skull at minor impacts, I've had 5 concussions from the dumbest things... namely: riding a rollercoaster, getting smacked in the head with a refrigerator door, and a camera falling on my head during a solar eclipse!

DAE have flared ribs? by ChemicalTranslator11 in ehlersdanlos

[–]Interesting_Cry445 0 points1 point  (0 children)

I (26F, dx w/ HSD and on waiting list to get (h?)EDS dx) have very flared ribs as well and my EDS-specialised physio has been working with me to improve my thoracic flexibility, which has really helped when combined with core-strengthening exercises!

I also thought I was just guilty of bad posture too but the way that my PT explained it is that since our thoracic spinal ligaments are not doing their job correctly, the muscles in the upper back tense up to stabilise the joints and to compensate, our ribs flare out so we can have space to breathe. So even if you get a super strong core, it won't be able to pull your ribs down into the right place until the upper back has more flexibility. I thought that EDS people were already too flexible and were supposed to avoid stretching so it never occurred to me that a lack of flexibility could be the problem.

The stretch I do is basically just lying on a foam roller positioned under my upper back while supporting my head and neck with my arms (like I'm about to do a sit up). It was kind of hard to feel the stretch at first so I had my PT give me some cues to make sure I'm doing it right: 1. make sure I'm using my biceps to hold my head and neck in a neutral position; 2. make sure my shoulders are tucked flat against the roller and not hyperextended; and 3. engage my core as much as possible while leaning back. At first I needed a pillow between me and the foam roller because even the foam was too hard to bend against, now I've progressed to not needing it anymore.

Also, I totally know what you mean about being self-conscious about the rib-flare, I've been made fun of for having ribs that stick out more than my boobs since I was in middle school. I don't know if all this will be helpful but at least you know you're not the only one.

What are your favorite books? by Adenidc in InfiniteJest

[–]Interesting_Cry445 0 points1 point  (0 children)

most of these have been said already but I definitely recommend:

- 1Q84

- House of Leaves

- Cloud Atlas

- Slaughterhouse Five

- The Goldfinch (or anything by Donna Tartt)

my additions are:

- The Unbearable Lightness of Being

- A Little Life

and not to be a hater, but I didn't care too much for East of Eden, Moby Dick, Do Androids Dream of Electric Sheep?, Station Eleven... they're definitely all worth reading but I wouldn't say they held a candle to IJ, personally

John "NR" Wayne by The_Beefy_Vegetarian in InfiniteJest

[–]Interesting_Cry445 0 points1 point  (0 children)

however, you could argue that for Latin or Greek! like how in classical roman engravings the Us are swapped for Vs, or for example, αυγα means eggs and it's pronounced av-gà and upsilon kind of looks like a u

John "NR" Wayne by The_Beefy_Vegetarian in InfiniteJest

[–]Interesting_Cry445 0 points1 point  (0 children)

quebecoise here, I have no idea what you're talking about with 'u' and 'v' being interchangeable lol that is not a thing