How I Get Around w/ Ehlers-Danlos Syndrome #ThisIsMyEDS [CC]

Hello, hello!
Today under the arm of Part 1 of #ThisIsMyEDS I wanted to go through the mobility aids I
use as someone with Ehlers-Danlos Syndrome.
Again, EDS is very diverse, there are different types of disability within the community so
while I use these devices it is not gonna be the same for every single person with EDS.
My state of EDS keeps me in bed a lot of the time for several different reasons but if
I want to get out of bed I basically have two options; legs or wheels...
From there I can get more specific and then it’s actually, like, really more like 5
or 6 options.
Legs!
We got A) Getting around with no aids at all
B) Using orthopedic shoes, ankle and knee braces
C) Using a cane
D) A combination of A and C (meaning no braces, and a cane)
or E) A combination of B and C (meaning braces and a cane)
And wheels, I have two options there!
I can either use a manual chair or a power chair!
So first thing that I think is really important to try and communicate to you all is how disability
can be very fluid, um, depending on the person, the diagnosis, the disability itself.
So my ability to stand and walk is very limited due to chronic pain, joint hypermobility, dysautonomia,
and some cardiovascular issues.
Because of all those things combined, my standing limit is... it can fall anywhere between a couple
of seconds to maybe a couple of minutes maximum.
I think the most amount of time I was able to keep standing, and that was with a cane, leaning on
the cane, and shifting my weight, um, maybe like 15 minutes, was like the absolute most that I
could do.
So now that you know that it's fluid, meaning based on my symptoms, and whatever's going
on, I'm going to need a different device.
I want to talk about when exactly those times are that I will be using those devices.
So around my home or like small and/or private spaces I can sometimes get around with no
aids at all.
And that's, you know, if I'm just moving a few feet at a time and I need spaces to sit available
to me consistently, and what really really helps is being comfortable in the space and
knowing the layout of the space so that way I don't get surprised by any, you know, steps
that I don't know about or uneven floors, because if I run into that I can very easily
injure myself, uh, usually in my ankles.
If I'm seen using a cane it's a similar thing, I have to be expected to only move around
a few feet at a time.
Um, so in order to use my cane out in public, it's usually to spaces like a restaurant or
a house party where there is a stool available for me or a couch where I can sit the majority
of the time.
Um..
And then, you know, it varies on and off, moving with my cane, without my cane, depending on
how I feel.
And of course, in order to get there, the traveling has to be a short distance such
as, um, the option of getting dropped off right in front, um, so that I just have to
walk for a few steps into the location (the restaurant, the house, whichever space I'm
headed to) or a disabled parking space that's right in front, and then walk from my car
into the space.
And the cane is often used, uh, you know, as a safety precaution in case one of my
joints kinda gives out, usually, it's my knees or my ankles, I have my cane there to kind
of catch my fall, to lean on, so that way I don't actually crash to the ground.
It's a safety thing as well it allows me to relieve some of the pressure off my joints
by leaning on it.
If I'm in a space with my cane or without my cane, if I'm using my legs, uh, and I am
forced to stand for longer than my limit allows, uh two--
Well, three things can happen, I guess, um, one is I'm in so much pain but I catch it
enough to sit myself down on the floor, 2) my dysautonomia, my cardiovascular issues,
they can take over and the pain can get too high and either of those things can cause
me to faint, um, and 3)?
What was #3?
I sit down, I faint...
Or I injure myself!
So those are the three things that can happen if I don't watch my limits.
Because of my limited ability to stand and walk, pretty much, if I'm outside, the majority
of the time, I'm going to be in a wheelchair because that's typically what I need to be
out and about.
My first wheelchair was a very standard black Invacare wheelchair, I liked it, um, but I
was still able to get out quite a bit back then so I wore it down rather quickly, within
the first year of having it.
My second manual wheelchair was a Quickie GTX, which was an improvement but ultimately
all the pushing I was doing was stretching out the joints in my arms, and it caused a
lot of damage to my wrists and affected my elbows and shoulders as well.
From that point, basically if I wanted to be independent and mobile I needed a power chair,
which I got a prescription for but basically, long-story-short, insurance did not want to
cover it.
Ever been ghosted by an insurance company or by a doctor before?
Haha!
Because I’m tired of it.
Thankfully, it took like a year of crowdfunding but um, I finally raised enough to purchase
myself the EZ Lite Cruiser which is an amazing power chair; it folds, it reclines for my
back pain, it's just amazing.
Sometimes I've considered getting myself a cane with a seat or a rollator with a seat
for like medium size trips, like 10-minute trips into the pharmacy or the grocery store.
Because I’ve tried to do them with my cane, you know, because it felt needless to do so
much physical labor of taking my chair out of the car for such a short trip but it’s
left me on the ground in public because of the pain pretty much EVERY time.
Right, that was really complicated, I hope you got something out of that.
[LAUGHS] But basically depending on my pain levels, my fatigue levels, the amount of laxity
in my joints at any given time those are all the various mobility aids that I need in order to be out
of bed.
So let me know, do you have various mobility aids like I do?
Or maybe this is your first time realizing that wheelchair users might have other ways
of getting around?
Don’t be ashamed because you are DEFINITELY not alone in that.
Alright, well, okay, Happy EDS Awareness Month, I will be back with more stuff and I will
see you eventually!
Bye!
[OUTRO]

How I Get Around w/ Ehlers-Danlos Syndrome #ThisIsMyEDS [CC]

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