Good day, dear humans.
[Intro music]
This video will be about one off my illnesses
that's the Ehlers Danlos Syndrome.
I will shorten that to EDS in this video
so when i say EDS, I always mean Ehlers Danlos Syndrome.
On the channel Annie Elainey, which I will also link to in the description
you will find the youtuber who started
the hashtag
that's called #thisIsMyEDS
so, this is my EDS.
This hashtag is about
showing how different the experiences
of people who have EDS can be.
EDS is a wide spectrum.
Some people with EDS have hardly any impairments
other people with EDS are severely disabled.
Type and severity of the impairments are just very different
depending on which body parts are affected
and what the individual presentation of EDS is like.
To go with the hashtag, Annie has
created a list of questions
I will now read those questions and answer them.
I have never done this before
I have no idea, maybe it will be totally boring
But...
Here goes. [laughs]
The first question is:
Introduce yourself.
Name, pronouns and EDS type.
I am Lian
which you maybe
could already tell from the name of my youtube channel
uhm, my pronouns are "it"
So i'm "it", not "he" or "she" (Note: German has no "they" pronouns)
My EDS type is hEDS, that's hypermobile EDS
That means my joints can a little bit...
dislocate and bend in unusual ways
I can do party tricks like this
I don't know if you can see this very well
I can push my thumb to my arm
And i can just pull my shoulders out of the socket
Second question: First things first, in one word, how are you feeling today?
First things first?
That's the second question.
The second question is not first!
[sighs]
In one word?
How am I today?
A danger to the public?
Is that a condition?
I am feeling... dangerous to the public?
[laughs]
I am dangerous to the public. (In German it's 1 word!)
[laughs] I've already almost set fire to my apartment twice today, so
Hail to smoke detectors
and today I'm not touching anything else that can break [laughs]
or that I could forget
and that can then cause fire
That has already been more than one word again
[laughs]
Third question: For those who don't know, can you explain EDS (medically) in a sentence?
Maybe?
EDS is...
a genetic weakness of the connective tissue
that can affect different organs
for example skin, joints
or blood vessels and organs.
I don't know if this was very understandable now, so
I'll prefer to give a few examples now as well
If the skin is affected, this shows
in that it is relatively elastic but also fragile
that scar tissue doesn't form correctly
and that wound healing can take longer.
If joints are affected
it looks like my joints
they're hypermobile.
they can be dislocated easily,
and move in directions they should not move in.
This is not always as obvious as the things
that I just showed, sometimes the movements
that are out of order are rather small
and can cause strong pain anyway.
If the blood vessels or organs are affected
this can cause them to be very fragile
4th question: What's your favorite analogy for how EDS feels?
Or what EDS is like?
To be honest I've never described that with an analogy
[laughs]
For my EDS type, hypermobile EDS
I'd probably say: Skeleton puzzle
because I just have to push all my bones
back into their correct positions all the time
Often I notice that something hurts
For example in my hand's it's quite frequent
and then i have for example
this is such a place or down here
and
then I have to randomly press it
until it goes Crack and the bones that were out of place
in this case, the carpal bones,
until they are back in their right place.
I also quite often look up
I look for x rays on the internet
or skeleton animations
to see what those bones look like
and what the hell is just happening there
So I know in which direction I have to push
[laughs] to make it hurt less again!
So I know every bone in my body personally.
Not necessarily by name, but I know all of them personally.
because I just know where every single bone belongs
and where it doesn't belong [laughs]
5th question: What are your symptoms and comorbid illnesses?
My EDS symptoms are mainly chronic joint pain
and joint instability
I also have rather fragile skin
that means that something like
wearing sandals without socks, that's just impossible
Because the skin will be gone immediately
And I do mean: Immediately. [laughs]
In addition, I have POTS
that is: postural orthostatic tachycardia syndrome!
that means when I sand or sit upright
my heart starts beating a lot faster
because, yes, my autonomous nervous system is just
not really good
at regulating my heart frequency and blood pressure.
that means when I am standing
or sitting with my legs on the floor
then I get dizzy very quickly
and I may even pass out sometimes.
POTS commonly goes together with EDS
they're a rather neat double act.
Here's also a list what other conditions you could have
I'm just looking through all those [laughs]
uhm...
POTS belongs in the category dysautonomia
Dysautonomia is the umbrella term for
all dysfunctions of the autonomous nervous system
The autonomous nervous system controls stuff like
temperature regulation
pulse frequency, blood pressure,
but also the movements of intestines, digestion and stuff like that.
For me, my temperature regulation is
I wanted to say: busted
but in reality it's just nonexistent [laughs]
So...
I always have to adjust perfectly how much
of my body surface I have to cover
and where I will place addtional heat sources
it's impossible.
I'm constantly fidgeting around like
jacket on, jacket off
wrist brace on, wrist brace off, because they are also warm
electric pillow on, electric pillow off
socks on, socks off, [laughs] scarf on, scarf off,
and then maybe it's a bit too warm anyway
and uuuugh.
I just notice 1 or 2 degrees temperature difference immediately.
and then I have to adjust accordingly.
[laughs] My body just doesn't do it.
Because of that, I also practically can't shower
like other people can
because as soon as I get my upper body wet
my temperature regulation just...
goes wild and
then I get so hot while I'm in the shower
and as soon as I turn off the water I get so cold
And freeze to death
and, aaaah, it just doesn't stop, it's so terrible
Because of that I need to use special
techniques to get myself clean
[laughs]
that don't include pouring water over my upper body.
[sighs] Additionally, I have this
allergy problem, as I've been calling it until now
which is probably a mast cell disorder
which is also relatively common with EDS
that means I just get allergic reactions to pretty much anything
even though I don't have an allergy in the classical sense.
But that's a subject where I'm still just
looking for diagnosis and treatment
which is why I don't want to say so much about it yet.
but only when I know
what exactly is going on.
Altogether, my symptoms mean for me
that I'm very disabled
I mean I'm completely unable to work
I can barely manage my housework, my everyday life with
doctor's appointments and occupational therapy and feeding the cats
and [laughs] vacuum cleaning...
for me, that's already so much
and I don't even really have the energy
to do things that I would really really like to do
like essential hobbies, or
communicating with people, or... going outside
I mean there's just no room for nonsense like
going to work
My biggest physical impairments
beside the chronic exhaustion
are, on the one hand, my mobility impairment
which at the moment is such
that I can walk a few metres, I guess I have about
100 metres that I can walk per day.
that means, walk back and forth in my apartment 10 times
and that's that.
After that, there's not so much walking any more
it's more like...
Crawling
But even those 100 metres that I can use
are very painful for me and
in a nutshell,
well, walking is just not so much my thing any more.
[laughs] Yes.
Additionally, I have a severe
impairment of my hands
because they're just super super sensitive
and even light straining can just cause
the bones in my palm to dislocate, those
metacarpal bones
This wrist is fucked up anyway
The elbows...
The shoulders... [laughs]
So I can hardly
write, I mean with a pen or something, I used to love to draw
but I just can't do it any more because
if I hold a pen for 2 minutes, that just hurts so much.
I can't open jars, because gripping like that,
this movement is just...
Lightning strike through the wrist
So, my hands just have me
scream in sudden pain several times per day
that's just my normal
You make one thoughtless movement
grip the door handle and then you're lying screaming on the floor [laughs]
I always laugh about that because it's just so
ridiculous, how my body keeps epically failing
Furthermore, I have
some problem or other with my uterus
which is probably endometriosis
but I am avoiding this laparoscopy because
aaaaah, hospital and stuff
This problem with my uterus
is that when I'm menstruating
I have extreme pain
and by extreme, I mean:
I've passed out from this pain before
which actually was a quite interesting experience
because I was thinking like wow, this is strong this is strong
and somehow I was aware, like okay,
this is just about the strongest pain that I know
and then I came to on the floor.
[laughs]
So, now I know rather exactly where my pain level 10 lies.
At least that.
6th question: How does EDS impact your daily life?
As I already said, I can't work
My daily life is one big disaster...
[sighs]
uhm...
On many days, I spend a lot of time in bed
because i often just can't sleep properly due to the pain
and then i just lie in bed for a long long time and try to SLEEP
or I'm just too tired to get up and
yeah
So, on many days I'm just more or less
living in bed.
I can't do many things any more that are actually important to me
For example, at the moment with the bad wheelchair that I have
I can barely leave the house
I mean it's good enough to do the necessary things
grocery shopping, doctor's appointment and such
But i need air
I'm that kind of person, I need to be outside
I just need that
wind in my face and
some rain
I had to give up many of my hobbies, I mean
most of them
or at least reduce them a lot
I had to adjust myself to
this level, that's just what I have now and
that I will stay at for the time being.
Then, it also says here: How often are you in the hospital?
Never?
No!
[singing] No!
No!
I don't go to the hospital!
Aaaaaah.
No really.
I hate hospitals.
Indeed it sometimes happens
that I visit the ER because of something acute
usually I get sent home after 5 hours
because they couldn't find anything wrong with me
or rather, I send myself home
They always want to keep me overnight "just to be sure"
But longer hospital stays
those I avoid like the plague...
So far, this has fortunately worked
because I've never had a bigger acute injury
and because I've never urgently
needed to have any surgeries
There are a few things that I should... maye.... eventually.... have done
but I hate hospitals!
Did I just cut my nose?
[laughs]
I don't think so, it's not bleeding.
How often do you injure yourself, how do you prevent injuries?
You probably know
my wrist braces
Hopefully I'll soon be getting a better model
with customized fit
But yes, they are
oooh, that's good [laughs]
Ah, that's really good!
[laughs]
Yes.
I love my wrist braces.
Especially when sleeping, I put them on to avoid myself
getting into weird positions and then
fucking everything up
I also use a wheelchair
and I just have to forgo many, many activities
and get help accordingly
Naturally it's rather difficult
to adjust to this
because it's also like...
yes, it's so disenchanting
Because all those dreams that you had
about what things you would be doing sometime, that's all...
pffffrt.
And in this ableist society that makes you
fight for every little bit of
help and support
it makes it super hard
to be okay with that.
But altogether I have to say
It doesn't even depress me so much.
Of course, it was a kind of re-orientation and
every now and then I have to consider, what's important,
and what can I kick out, with what can I get help
But in the end it's just good for me to
take care of my body and myself like this
That was it for the first part,
the other 2 parts will come
in 2 other videos
So...
See you around!
Bye!
[Outro musik]
[Clank noise]
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