If you ever tell a disabled person that they can do anything they put their mind to, you personally owe me $10,000.
When I was in primary and high school we often had PE. I would of course be the slowest and clumsiest person on the field who always got tired way before anyone else. I don’t know about anywhere else, but at my school, sport was status.
I have distinct memories of Friday afternoon non-PSSA cricket. The entire time I was fielding, I felt like I was going to pass out, I could never catch anything. When I was batting, I could hear the groans and laughs from my team because I could only rarely hit the ball, and when I did it was never far.
I can clearly remember teachers telling me I wasn’t trying hard enough. That I was lazy and unfocused.
But here’s the thing. I did focus. I put my mind to it. Every single time.
I loved the feeling of running, when it didn’t make me feel like my bones would slide out of place.
The things those teachers told me? I believed them. Of course I did, what else was I going to believe? Society has a very strict and narrow view of what constitutes a disability and I am the first person in my family to have an active EDS gene.
When my health deteriorated significantly further and I discovered I had hEDS, my view on all my memories changed.
I don’t currently have the words to describe the sheer fury I now hold towards all of these people.
Moral of the story is that telling us we can do anything we put our minds to isn’t just ignorant, its downright harmful. Even now I still feel the flush of shame when someone says I can do something I know I can’t.
Besides, the very definition of disability means there are things we can’t do. So accept these differences and accommodate for them, don’t just pretend that our disabilities don’t exist because they make you uncomfortable. That’s your problem.
Having Ehlers Danlos Syndrome sometimes feels about the equivalent of being composed of jello and wet spaghetti. Nothing stays where its supposed to. Literally every single cell in the body is floppy, so fingers are definitely an issue for many of us. I can almost guarantee that for the majority of us, writing is not only slow and painful but nearly impossible at times. FIne motor skills? What even are those? An EDSer surely doesn’t have any of those. Even typing which is far easier than writing, is painful and daunting at times. But last year I joined the population of shiny zebras by getting fitted for a set of Silver Rings Splints and they are beyond magical.
For those of you who have not heard of The Silver Ring Splint Company, they are a company that custom makes finger splints that look like elegant pieces of jewelry. Don’t believe me? Well I can’t even tell you how many compliments I’ve received for them. Nobody even suspects that they might possibly be medical. But more importantly, they work amazing! I still have hand pain and finger dislocations when performing fine motor skills and writing is definitely not something I look forward to but I have saved myself thousands of painful dislocations, I can open doors easier, type faster, write longer and hold objects in my hands without looking like an alien from a sic-fi movie. With the rings on my fingers actually look like fingers rather than tentacles!
The company is also family owned and the people are so sweet and helpful!
If you are having trouble with hand pain, clumsiness and dislocations please check out this amazing company!
I’m literally crying right now. I will be able to use my hands!!! As it stands I can’t do dishes, hold things, write, hold books, type, without pain or dislocation. Oh my gosh. This is a miracle.
@peaceypanic
those are gorgeous and that is amazing how well they’re working! signal boost!
I love these things. I use one for my thumb because due to arthritis I have very little strength/support in the joint and therefore often can’t do anything. My splint makes it possible for me to do my job, do the shit i need to do and not have as bad of pain.
these are so cool
omg the first ehlers danlos post I’ve seen, this makes me happy!
We love Siris Ring Splints (silverringsplints.com)! But we know not everyone has the same price points or style so we have a whole page of splints (and braces too) oer on PrettySick Supply so you can shop your own style and cost! And a lot of the folks we’ve found are others with EDS and hypermobility issues who support themselves by selling the splints they make!
I probably should say that most of the time it’s safer to go up a shoe size if you’re in doubt.
Just remembering that time I was in a friend’s wedding, and she decided we should go for these matching dyed pumps. As happens with wedding parties.
That maybe wouldn’t have been so bad if the shop had my size in stock when we went in to try them on. But, of course the closest pair was a little tight.
“Sure, let’s go ahead and order in the size up, I’m sure that will be fine.”
Spoiler: It wasn’t fine. And it was too late by the time they came to try something else. I would have been better off with the ones I tried on.
The Sasquatch-sized pair they ordered in seemed to be a different brand, with different sizing. So I got stuck in heels that felt at least 2 sizes too big. They didn’t really want to stay on, it was that great a fit.
So, I tried insoles and stuffed the toes with paper. Which put a lot of my weight onto the toes crumpling themselves down against the toe paper, instead of on the balls of the feet. Besides the blisters.
(And of course I forgot to pack along comfier shoes for the reception. It was too cold to just go without, though I seriously considered it anyway. So it was pretty much all day stuck in those horrible shoes.)
I’m not sure if any toes actually ended up broken, or “just” dislocated. (Thank you lousy collagen. 😩) There was a lot of bruising, and walking was not easy for a couple of weeks afterwards.
Now I would just say, “Sorry, I’m just going to have to wear non-matching shoes. These are not working at all.” Even if I didn’t have diabetic foot issues to keep in mind.
That was over 15 years ago, though, and I felt like I needed to good sport my way through in horrible shoes.
Also a cautionary tale, I suppose. Please don’t do that. 😱
Well, that’s a new one 🤔
It’s not scraped or anything. The best I can tell, that’s a weird trash bag handle pinch mark, from carrying them out to the curb. Sort of like a half-assed blood blister. None of the bags were even that heavy ¯_(ツ)_/¯
(It also doesn’t actively hurt or anything. Just, wtf?!)
Blaming lousy collagen. Which usually seems to be a safe bet whenever strange skin things happen.
A specialist recently told me that what your label is (meaning your diagnosis) doesn’t matter because no matter what you’re diagnosed with the symptoms and getting treatment/management for said symptoms is what they focus on and what you should be focused on and your diagnosis changing won’t change that.
Honestly though? I disagree diagnosis’s and “labels” are important to the patients even if they aren’t to the professionals. Maybe in the medical community they care more about your symptoms than what your diagnosis is (although I can confirm that this 100% isn’t always the case, especially when you’re undiagnosed) but in the real world it matters.
It matters if you need to access certain treatments that require a formal diagnosis.
it matters if you’re at risk of developing certain secondary conditions, complications or injuries
It matters when you’re trying to get future medical help or another diagnosis.
It matters if you need help or support at work, school or college.
It matters if you need to apply for disability benefits, a disabled badge or home adaptions.
It matters for your mental health. when you’re worrying about what your symptoms might be caused by.
It matters (unfortunately) when other people ask why you haven’t been able to do x and y for so long and you don’t have a “real” answer so people think you’re exaggerating or faking because if there was something *really* wrong they’d be diagnosed with something right?!
Not only is it important for the above reasons (even though being diagnosed doesn’t always help with the things above) but my illnesses are part of my identity, part of who I am and being able to label myself as a disabled person with hEDS, fibromyalgia etc. Is empowering and gives me a sense of pride and self acceptance. Those labels come with a whole community which have given me a sense of belonging. Being able to talk to others who know what I am going through makes a huge difference and helps me to feel less isolated and alone. Finding people going through the same thing quite literally saved my life.
When it comes to identity, I feel the same way about my sexuality. Being bisexual is part of who I am and having that label, being part of a community has made a huge difference to how I feel about myself and helped me to get over my internalised biphobia. My sexuality is part of my identity. My disabilities are also part of my identity. The only difference is that people are usually encouraged (and occasionally even pressured) to label their sexuality but when it comes to disability and illness people, especially medical professionals don’t want you to label yourself.
Maybe we need to look at why and stop seeing illness as something bad and negative that we need to hide from the world and start seeing it as a part of who some people are and something they identify with.
Not to mention there are some things that go along with certain conditions that would be super helpful to know on advance – like how EDSers often process anesthesia differently?
You know what doesn’t sound fun? Randomly waking up in the middle of surgery.
Also, how certain symptoms are treated can vary GREATLY depending on the cause.
Like, Pepto and Tums aren’t going to cut it if your nausea is from Gastroparesis.
Any doctor who says labels don’t matter, I will personally diagnose them with a case of These Fists.
EDSers process anaesthesia differently?! Is that considered to be an official symptom of eds?
I’m only asking because I’ve always had problems with local anaesthetic not working fully or taking ages to work. Also I usually need a lot of extra for it to work at all. My mum who also has hypermobility type eds has the same problem. (I’ve Never had general anaesthetic so I’m not sure if it affects that too but I’d be terrified if I needed surgery.)
Local anesthetics have never worked right for me, and I was also very interested to find out that it’s a common EDS/HMS thing. Was going to add a couple of links, but searching on “EDS local anesthetic” turns up a lot.
I was glad just to find out that, no, I haven’t just been imagining that, and it really is way more effective for most people. Getting the relevant people to listen has been more of a problem. The last time it came up with trying to convince the NHS to cover some serious dental work under sedation (successfully!), I took some printouts along.
Just in case it might help on shorter notice, I also got this Local Anaesthetic in EDS keyring Card. That hasn’t come up so far, but with any luck having something to show them might help the issue get taken more seriously. Something to maybe consider for anyone who might need a little backup.
From what I understand, general anesthesia thankfully isn’t usually the same kind of problem with EDS/HMS. I’ve personally never had trouble with it working properly, and haven’t seen people reporting it.
(Though I do have apparently unconnected problems with getting extremely sick for a couple of days afterward–with very high fever, vomiting, and delirium so that they’ve been afraid it was infection. The last time I had surgery, I told the anesthesiologist about it in advance, and changing the blend of drugs did stop that from happening again. For anyone who might have run into similar issues. I don’t think they ever told me the details, and it’s been a long time, but that is apparently a known thing.)
Pretty frustrated, since I was hoping to clean the 180L tank, with the free night from Mr. C gone to that work event.
But…one of my toes is not cooperating! Of all things. No idea why I woke up with it hurting, but it is kind of swollen. Everything feels like it’s in joint now, but who knows while I was asleep ¯_(ツ)_/¯
(Best guess unless I have unknowingly started sleepwalking or something. Feels suspiciously like one joint may have stayed dislocated long enough to start swelling, with no other obvious signs of anything wrong.)
I’m usually pretty bad about just pushing on anyway, but the way this is feeling just walking around the house? I don’t want to maybe do further damage to it. Whatever the issue might be, that’s seeming very possible.
Extra annoying when it is something that relatively minor, but hey. Maybe better elevate the foot some.
@natalunasans – From what I understand, at least, that usually has more to do with the cumulative damage building up and catching up to you over time. Definitely feeling that more with some joint/muscle garbage myself by now.
Not so much that your gums, etc. will actually get more fragile over time. I guess that could be possible in some cases, but otherwise that part doesn’t seem to have changed for me at least.
Currently trying and probably failing to convince myself that I don’t really need a 4-lb tub of popcorn. (The smallest amount of anything close to a “hulless” variety I could find without paying for international shipping.)
And I had to get amused at some of the reviews.
The common variety/varieties I have seen here–AFAICT across Europe in general–really does have some of the thickest, toughest, most intrusive hulls I have ever encountered. With the lovely EDS/HMS easily torn up gums factor, that’s really not a good thing.
I really like popcorn, but have held off on eating any for couple of months. After the last popcorn-related bad inflamed gum episode that made it hard to eat solid food for a few days.
Tonight I couldn’t resist popping some again, and thought maybe I should actually try to find something less likely to cause regrets afterwards. Never had it to this degree with even bog standard popcorn varieties back home, and it’s not like my collagen would have gotten any funkier in the meantime. But, apparently it’s not just me imagining the hellacious hulls 🙄
Trying something different is probably worth the money, yeah. Even if we can’t use all of it, as much as I hate wasting food. It should stay good for a while in the freezer, at least.
Urocyon's Jaunts 2.0 
You must be logged in to post a comment.