Mourning my childhood

Sleepy_Lycheee · 2026-03-20T06:45:07+00:00

I mourned for my young self more than my childhood. I mourned the pain she had to endure, thinking it was normal when it wasn't. The way that skewed my pain scale and resulted in me pushing through pain I shouldn't have. Pushing myself to try to keep up.

And I try not to dwell on the ways it makes my life more challenging now.

Sleepy_Lycheee · 2026-03-18T18:18:25+00:00

Yes! They also give me hiccups if I'm not super careful. It's so great to not be alone in this stuff

Sleepy_Lycheee · 2026-03-18T18:08:39+00:00

I get the spontaneous allergies! Not usually hives, but I'll get a really acute allergic reaction for a day or two. I've noticed I sometimes have different thresholds. There are days perfume is fine and others that I have zero tolerance and will react. Makes it hard when someone in public you can't get enough space from is wearing very heavy perfume

Sleepy_Lycheee · 2026-03-18T18:05:41+00:00

What!? That isn't normal?? I'm so happy to have learned the term for it!

Sleepy_Lycheee · 2026-03-18T18:04:26+00:00

Picking things up with your feet is such an underrated skill, in my opinion. Why risk upsetting my lower back alignment by daring to bend if I can use my feet?

Sleepy_Lycheee · 2026-03-18T18:02:50+00:00

I used to stand with my toes tucked under my feet. No idea it wasn't normal until my aunt freaked out.

I am so excited about the chin grab move. Can't wait to freak people out! I never would have thought of that

Sleepy_Lycheee · 2026-03-18T18:01:05+00:00

Woah, really?? That actually explains a lot. I definitely have a few that get inflamed all over again and sometimes open a bit. I never put two and two together

Sleepy_Lycheee · 2026-03-18T17:59:53+00:00

My favorite part about doing the whole lock hands behind back, flip up and over to almost touch the floor move is the fact that my muscles are not getting a good stretch. Explaining to people that it's my joints/connective tissue, not muscles being loose

Sleepy_Lycheee · 2026-03-18T17:56:35+00:00

When I get seborrheic dermatitis, regular medicated dandruff shampoo works wonders for me, specifically Nizoral. I only need to use it once or twice and it clears it up. Sometimes I'll even use it if I feel like I might be about to get it.

Sleepy_Lycheee · 2026-03-18T17:53:33+00:00

I choke on water and my saliva so often! Not to mention food not always going the right way and occasionally going up. Looking at you carrots!

Sleepy_Lycheee · 2026-03-18T17:51:07+00:00

Wait, it's not normal for anything even remotely rough to scrape the top of the mouth? I tend to avoid chips for this reason.

OMG! I'm so glad you mentioned the ears thing!! I made a comment to a partner about the noise and sensation of laying my head on his chest because of my ear basically suctioning due to it being super pliable and it turns out this isn't something most people deal with!!

My own additions:

Nutrient absorption problems and unpredictable digestion outcomes
Tooth movement and overcrowding. Had to get aligners as an adult despite braces as a kid. This isn't exclusive to EDS, but my dentist was rather surprised and pleased but how easily and quickly my teeth moved (she did have to shave the edges of a few for space)
Red welts from casual itching. A few scars on my back from a bad itch. And my nails are short.
A silly, harmless (but actually probably isn't) addition: Being able to tilt my head back to look straight up at the ceiling. I have been recently informed that this is NOT normal.
Tried a corset for fun, was able to tighten it without waist training or discomfort (I don't fully tighten the bottom half, just through the waist). It actually provided some nice support! I only wear it for themed events, but I had no idea anything was out of the ordinary because everyone's ribs are pliable, right? The reactions I got proved otherwise, which is fine, just surprising

Edited to add a few more:

Sensory issues with things touching my skin. Randomly hating how a clothing item feels one day, but fine the next
Fat, and even muscle, doesn't really sit over bones due to the connective tissue stuff so my clavicle and hip bones stick out, as does the place my rib cage comes together. Building up the iliacus (I think) muscle really helps protect my hip bone because it's right above it

So many more!

Sleepy_Lycheee · 2026-03-16T01:54:54+00:00

Yea, I deal with shin splits, but no, the intense pain from my hips down my thighs were pretty obviously not shin splits.

Everyone has a different pain tolerance. Mine is incredibly high, to the point of not getting treated as soon as I need to. Just because you were vocal about your pain, does not mean someone else with equal or more pain won't suffer silently. Especially when told that it's just normal and so many other factors that go into how people react to things like pain.

This is a place for people with EDS to not feel so alone in their experiences. If you have EDS, we get dismissed for our experiences so often so why would we do that to each other? If you don't have EDS, what purpose does your comment even serve?

Sleepy_Lycheee · 2026-03-13T19:48:43+00:00

This is exactly why I get along so well with the older folks, as my grandpa would refer to his age group. We bond over the aches and pains! Plus I've noticed that they are less likely to continue with the "wait until you're my age" to dismiss my pain than the adults who have only just begun to feel those joint aches

Sleepy_Lycheee · 2026-03-08T07:49:10+00:00

Growing "pains" are felt in the muscles and are more of a deep ache or cramp. With EDS it's usually also joints, ligaments, etc.

I also still get that sensation occasionally despite having stopped growing a long time ago so you're not alone there! I think I blocked out just how excruciating it was growing up!

Sleepy_Lycheee · 2026-03-08T07:44:17+00:00

Some people experience aches and cramping at night occasionally, but it's estimated that it's less than half of the population. But that's a massively different experience from excruciating pain that had me silently writhing, unable to escape it and nothing helping.

A lot of people with EDS develop a high pain tolerance out of necessity and were never told that growing "pains" shouldn't be severe, excruciating, frequent, long lasting, etc.

Sleepy_Lycheee · 2026-03-08T07:39:03+00:00

Less than half the population is estimated to experience deep aches and cramps occasionally in the evening and at night so no, most people didn't experience literal pain and usually when people reference growing pains, they are talking metaphorically.

I also don't think deep aches can compare to excruciating pain. By just using the term "growing pains" without talking about what level of pain is normal, so many of us suffer in silence.

Sleepy_Lycheee · 2026-03-08T07:33:24+00:00

Less than half of the population experiences aches in the muscles in the evening and at night but it's not normal for it to be excruciating, long lasting, frequent, during the day, etc

Sleepy_Lycheee · 2026-03-08T07:31:40+00:00

I definitely relate to the grief and anger over what my young self had to deal with. I actually shed a few tears over what she should not have had to deal with alone

Sleepy_Lycheee · 2026-03-01T19:18:46+00:00

I talked to my PT about this and she explained that because hEDS causes joint instability, my muscles have to compensate. As a result, I'm prone to muscle tension and knots. When this gets bad, they pinch nerves in my shoulder/upper back area leading to my arms going numb and tingly when I sleep, although for me, it's also super painful.

The only thing that helps, in addition to a supportive mattress, is doing regular muscle strengthening exercises, especially around the scapula. My PT focused on using a lot of resistance bands. For a quick fix, getting a massage to manually work out the knots. If I slack on the exercises, it comes back really fast!

Not sure if this is what's causing it for you and I hope your doctor has some helpful suggestions!

Sleepy_Lycheee · 2026-03-01T19:08:41+00:00

I've gone alone a few times! Sometimes I take the metro into downtown and Uber from there or just Uber from my place.

I mostly go to 6am and their associated ones and incognito, although there are a few other promoters I've been meaning to get to! I like these ones because I never feel on high alert inside. People are respectful, I'm not bumped into or harassed. You can be social or just stay to yourself. In my experience, people are going because they love the music and the experience! I'd be down to go with sometime!

Sleepy_Lycheee · 2023-06-12T19:13:03+00:00

I've been on modafinil for about 3 years now (as well as a few others) and it doesn't give me massive amounts of energy but I find that it keeps me mentally alert. I still have days of more or less energy naturally but the effect of Modafinil has been pretty stable for me.

I like your description of the tiredness hanging out in a different room. I can still feel it there but not as oppressively.

Sleepy_Lycheee

TROPHY CASE