Day 16: My EDS Toolkit
Another fun post! These are some of the things that help me get through my day-to-day. They're all products, but this isn't an ad. Just a list of stuff that I find helpful. You might not find any of these things helpful at all! But I hope you do. At the very least I hope it's fun to read. I mean, I hope that about all of the posts, but this one especially. Otherwise it's just a list. And then, like, why bother? Anyway...have a hopefully not pointless list of things that help me with EDS symptoms!
CW: There will be a photo of my elbows hyperextending. If joints bending in directions they're not supposed to freaks you out too much or makes you sick, skip to the following "after" photo of the braces working their magic. I'll give a warning before the "before."
Recently, it has come to my attention that the state of my elbows has deteriorated (translation: they hurt and also they pop a lot and also they hurt and also my hands go numb all of the time and also they hurt). I've known for a long time that I need something to keep the hyperextension in check, but I hadn't been able to find anything that worked for me. There were a lot of things that worked...partially. Everything was either too bulky, irritated my skin, destroyed my clothing, was going to need to be replaced too frequently, or was just no match for the sheer stubborn determination of the backwards force of my elbows. I tried so many things. The hand therapist at my therapy office tried so, so hard to make me something that would work; I felt awful, it gave her such a hard time. She was so upset. I was so upset to have made her so upset. Here she was bending over backwards finding extremely creative solutions, literally creating things out of nothing, and there are my elbows hyperextending their way out of every single great idea. Look, I've spent years searching for something that provided an actual solution; there was nothing. At least not in the US. Enter We Design**, a company based in The Netherlands that primarily makes silver splints for fingers, hands, and wrists. Know what I have now?
Mother f'ing TITANIUM ELBOW BRACES.
These babies are going NOWHERE. Let me show you a quick before and after with these things. The following photo would be the one to skip if joint stuff makes you squeamish.
Before (just fully bending backwards, literally making other people physically ill to see):
After (genuinely as much as I can straighten my arms):
Those arms are STRAIGHT. The braces easily fit under my clothing, leave minimal bruises (especially compared to other braces I've tried), don't irritate my skin, and will last me an extremely long time. They're made specifically to my measurements. Plus, I think they look pretty badass.
**I cannot in good conscience fully recommend this company. They weren't communicative, it took nearly six months to get the braces, and they ultimately sent them to someone else. It was honestly just lucky that the person they sent them to happened to be another patient of my physical therapist and could bring them to the office. I ended up telling PayPal what was up and was issued a full refund (oh yeah, they were EXPENSIVE). Sending a medical device to anyone other than the patient is unacceptable, and that's not even including any of the other problems I had with working with them. They've been good with some patients and less good with others, so you'd maybe be making a bit of a gamble ordering from them. But maybe that's only if you're in the US? The product itself is excellent, though.
These do roughly the same thing as the elbow braces. But they're much more easily found and procured in the US. That's not to say that they're cheap, but there's definitely a range of price points. I use them to keep my fingers from bending backwards, twisting, subluxating, and locking. They also help with damage done from arthritis. Some of mine are made to measure from Silver Ring Spring Company and some were made by my hand therapist.
This is essential. As someone with moderate-to-severe asthma that often isn't well controlled, having a nebulizer that I can bring with me anywhere is so helpful. (not that I'm going many places these days; although having one that doesn't need to be plugged in is extra useful for safe outdoor adventures). This one from Bruitcare is really nice! It's quiet and lightweight and charges via USB. The carrying case has elastic bands that hold everything in place along with a nice little pocket on top, super convenient. And you can buy all of the parts separately as they need replacing for hygiene or any other reason.
Oooooooh, this is a fun one. Okay. So. I've talked before (on my instagram if not here yet) about how EDS messes with proprioception, or your ability to tell where your body is in space. It's super weird. Also, my muscles get too tired to hold up my spine. Which is not great for so many reasons. But this thing! This product is so damn cool. It's basically giant elastic that wraps around your body, called Body Braid because it literally looks like a giant braid for your body.. It provides haptic feedback, which reminds your body where it is in space, and it provides support and stability all over your core, back, and shoulders. I'd like to get the leg extensions soon so I'll be able to get up and walk around while wearing it.
If there's any small thing I could recommend to improve a round of illness or a dysautonomia flare, it's this. I've been consuming these darn popsicles since I was diagnosed with orthostatic hypotension when I was about 16. I'm pretty sure it's just regular Pedialyte...in popsicle form? But somehow it's delicious? and refreshing? And comforting? It's one of the things my first pediatric cardiologist recommended just having in the freezer all the time, and he was 100% correct. Any time I can tell my body needs salt, but I can't get myself to eat anything salty (or anything at all), or if I can tell I'm dehydrated, these help considerably.
Pretty straightforward, right? Relaxes muscles in a target area. Lately, I've been using one a lot for my neck and jaw, because when all of that gets too irritated my trigeminal neuralgia kicks in, which is pretty excruciating. But when I can heat up the muscles in my cervical spine and get everything to CALM THE HELL DOWN, those nerves don't get trapped, my jaw tends to stay where its supposed to be (or at least I can more easily move it back to where it's supposed to be if it moves out of place), and everyone is happier.
Apple Watch (and Health App)
Also pretty straightforward! I use it to monitor my heart rate and oxygen saturation. Everything get's imported to my health app. I also have the same medical ID on my phone and watch, with the ability to contact emergency services and my emergency contact.
Okay, I've gotten an unexpected number of compliments and questions about this one. It's a ROAD iD! They make ID bracelets for athletes, kids, pets, and those of us who need them for medical reasons. The one I have is made from engraved medical grade stainless steel, and is designed to slide onto an Apple Watch band. I've had it for years and it's still in immaculate condition. And they donate a portion of every order to a non profit that connects children with service animals. So, you know, that's pretty great.
Blue Light Glasses
Ending on a bit of a boring note, maybe, but it's still important. I saw a neuro therapist last week who said blue light glasses are part of her personal tool kit, so I took the liberty of giving myself a little mental gold star for already using a pair. You can get them all over the place, so I'm not going to link to anywhere specific. But I feel pretty cute in the ones I've got, so hopefully you can find some that make you feel cute-while-protecting-your-eyes-and-brain too ❤️