We are finally back to our regular scheduled videos
And for this week's TL;DR, we are going to answer the question
that a lot of people have been asking
over the past month and a half
WHERE ARE YOUR VIDEOS?!
Some of you might know the answer to this, and
that we wrote this in the blogpost for the 'Eat your Kimchi Awards'
In which we had a medical condition
that we had to take care of
Back in December
So from the middle of December up until now we've bee trying to deal with
and want to share it with you today
Cue sad emotional music
*Crazy noises made by Martina*
So this is a very difficult topic for Martina
Which is why you're going to see she's going to be diffusing with a lot of humour today
Okay so, let's just jump into this because
I don't like talking about it that
So essentially I have EDS which is known as Ehlers–Danlos syndrome
I'm type 3 mobility WOOH!
Hyper mobility
Which basically is a disorder
It means you have problems with your collagen and protein
Which creates a lot of problems
Like dislocations...all the time
And a whole bunch of, just tons of things that come with it
But the main problem that comes with it is Chronic Pain
I can't sleep and chronic pain leads to depression
and it causes all these issues
My joints dislocate all the time
It's hard to walk
All that kind of jazz
She glosses over this very quickly but
the fact is that she's pretty much in pain 24 hours a day
As soon as she wakes up
So even while she's sleeping
She wakes up often in the middle of the night because
She has to keep on putting on her joints back into place
And this is very taxy living in chronic pain
It's not just physical pain but it's also emotional
It's very tough for Martina to keep on going like this
So essentially what happened in December was
We finally decided it was time to start seeing a pain controlled doctor
Which is something I've been avoiding for a long time
Because I don't want to rely on medication
I've been trying different forms of things like
I wear knee braces and ankle braces
And I do shoulder wraps
I tried everything to try to keep the pain in check
But it just pretty much got too extreme to the point where
I was just crying a lot and unwilling to get up in the morning
And it was just generally depressing
And I'm sure a lot of people have suffered the similar things before
Whether it be through other invisible disabilities
EDS is categorised as an 'invisible disability'
Which means on the outside you look totally normal but
Anyone who has been in a car accident or chrone's disease or
You suffer from IBS, there's like many, many
Different kinds of invisible disabilities
You know what it's like to struggle with
Something to get up, to get going, to face the day
So pretty much we reached a big low
And so we started to go to a lot of doctor's appointments
Which is why we were missing a lot of videos
So we went to one of leading specialists in Korea
That would understand Martina's condition
I started with a geniologist
He was extremely, highly recommended
And when Martina went to him, it turns out that
She was the first person that he has ever actually met with this condition
As an adult
So he's done geniology work before
Because you have to find out if you actually have it or not
But he's never actually met like a full grown adult
Which means, I was giving him more advice on it
He had no way of helping Martina out what-so ever
This is pretty common because EDS is like very difficult to treat
And most places in the world don't really know about it
Although Chicago apparently.....
Anyways from there I had to be recommended to a pain specialist
Which deals with people who have to take medication everyday
And we're not talking about, over the counter stuff that you buy for headaches
Like Tylenol or Advil or anything like that
Yeah anything I can buy at a store for pain
Is like....it does absolutely nothing for me
A Tylenol for Martina's pain is kind of like you eating a grain of rice for a full meal
It does nothing to satisfy your hunger, it does nothing to stop your pain
Yeah like maximum of painkillers and I'm like "What's going on?"
Which is why it was so funny when I got my tattoo done
Cause my tattoo was, it should be very painful
But I developed a very high pain tolerant over my life time
And so the tattoo artist was like "Are you sure you're ok?
And I'm like...watching
Are you talking about......? Slap me in the face while you do it
I was watching Vampire Diaries
And eating mandoo, and I didn't pay attention
But this is actually the real issue for people with EDS
Because we tend to be under diagnosed
Like when I broke my arm, when I dislocated my knee
And I didn't cry
People say things like "Oh you obviously didn't break your arm"
Because you'd be crying if you did
But when you deal with Chronic pain everyday
Your pain is above the average threshold
But no on believes you
So this is the problem with EDS as well
A lot of people don't get diagnosed with EDS until they're in their 20's
A lot of people suffered in their elementary school years and their teenage years
Because a lot of people don't actually understand that they're suffering this
We went to the pain specialist, we started trying new medication recommended
Through another doctor
So all the times they say to you the things like "Oh we can't put up another video for this week"
Or "We're really busy, we've got some meetings" or like..
"Martina's feeling kind of sick today"
It wasn't like the sniffles
It was me having to go to a doctor's appointment
But I didn't want to freak you guys out
By being like "I'm in a hospital"
And you know, telling you all the time
So Martina wind up getting two kinds of medicine
They were Tramadol and Meloxicam
Which for the first couple of weeks that she was using
It was actually helping out
It was easy for her to get out of bed, she was suffering less pain
Her mood was a lot better as result of not feeling so much pain
The only problem was that after 2 weeks of using
It caused extreme pain on her stomach
Worse than the pain that she suffers through EDS
In the end it seemed like I was having stomach bleeding
OH BOY!
So then they're like "Ok you need to stop this medication"
So we tried stopping the main medication for the pain
And then that was around Christmas Time, around the Eat your Kimchi Awards
So that's why we couldn't post a lot of things
We couldn't have the big, whole, Eat your Kimchi award that we usually do
Because it was difficult for Martina to even stand up at this time
And then I went through, terrible, terrible, withdrawal symptoms from the medication
SO let all you be known, if you're gonna take Tramadol
PLEASE, please, be careful
Because the side effects were one of the worst things I've gone through
Our doctor was rather negligent and Martina was on a very high dose of medicine
And he was like "Aaaah just stop using it, you'd be alright"
Instead of slowly reducing it out of of her system
As a result the symptoms for her were terrible and
I was never so scared in my life for Martina as I during Christmas time
Poor Spudgy man
Spudgy was terrified as well, he was curling up to Martina
Like trying to sleep with, he could sense that something was wrong
And it was really a tough time for all of us
While some of you watching this video might be surprised by all this news
Because we don't necessarily talk about it a lot
In the 2000 videos that we've done so far
We barely ever actually talked about Martina's condition
Even though it's something she deals with every single day of her life
Now there's a reason's why we don't really talk about this in our videos
I think we've only talked about it once in my draw my life video
And I barely even talked about it in that video
And the reason why is that there are some people who have chronic illnesses
That focusing on it, like being a part of support groups and talking about it all the time
Like on twitter or on a thread is very helpful for them
For some people it helps them cope with something
For other people I think it can make them feel very depressed and limited
And it can remind them that they can't do things, or they shouldn't do this
They shouldn't do that
For me, I find that focusing on this all the time is
not helpful for me
For me, I think that focusing on something that makes me happy or positive is how I deal with it
Even doing this video today is really challenging for Martina
It took a lot of holting to try get her to....
You promised me a cupcake!
To get her to open up about this with you is something that she really is uncomfortable doing
It's just that for me, it's not that it's embarrassing, it's just that I don't this to turn into you guys thinking
That I'm talking about it so that you can say "Ohh Martina, I'm so sorry like I didn't know!"
Like that's not the point of this video
The point of this video is that I at least want to tell you some tips
Of how I feel like I get through these days and how I get though my hardest of times
And I wanna be able to share something with you guys
Because I know that everybody at home goes through something
Whether it's chronic, maybe it's a really low time, something's happened
I just hope I can share something with you and that's what I wanna do for the next part of the video
A really good example of this is what happened yesterday
Now we wind up parking our car right behind the studio
And it's really just like a 30 second walk from the car to the studio
And when Martina wound up having her coffee
Her knee just dislocated, it just randomly does sometimes
And it's difficult for her to walk and she fell on the ground rather painfully
But it so embarrassing though because I'm like a toddler
like we were right in front of all these places where someone might have been eating food
And I just went down like a sack of like potatoes
Luckily I wasn't holding Spudgy
You were on the ground and it was really painful for you and were crying
And it was really sad for everybody that was there but
I wasn't crying! I came close, my eyes welled but I was fine
It just hurts to dislocate your knee, it really, really hurts
It was my kneecap but whatever...I'm just saying
But instead of just saying "F*ck this day going home
We went upstairs and filmed a really fun video about fruit that should be coming out really soon
We laughed so much and we were able to really enjoy having fun making these videos
And during that time we didn't think about the fall, we didn't think about the pain
It was something that was really positive in our lives
That helped us focus more in a creative way
The biggest struggle I feel is actually in my own head
When we were walking and my knee gave out, I was so angry at myself
Because I didn't wear my knee brace that day
BECAUSE we were giving a lecture that night and I was wearing a really pretty dress
And I said to myself "I'll be ok today without my knee brace because I don't want to clash with my outfit"
I just want to look really cute
So when I fell, I was like "You see Martina, this why you cannot mess things!"
My feeling was like "You shouldn't wear dresses, why don't you just stick to your sporty
"like tomboy look that you used to have growing up"
You should wear baggy pants to cover your braces, it's so embarrassing, you fell!
Someone could take a picture of you on the ground like an idiot
All of these negative Nancy thoughts came into my head right away
And then I had to say to myself "No Martina, you're going to make a video about fruit"
Extremely special fruit in Korea, it's a very interesting video
And people are going have such a good laugh when you talk with your husband
And you're going to joke with each other and Leigh's going to laugh behind the camera
And all those negative thoughts that I had will disappear
So I use it as like in a little, tiny, dark pit and I have this grappling hook that comes out
And I think about making creative videos and seeing you guys online laughing and your comments
And it just pulls me out of this pit
So for us, more than any actual physical pain medicine
One of the best pain coping mechanisms that we have is
Doing stuff with you guys online
Making videos and talking with you and laughing with you
This is what's helping Martina through a lot of her condition
Which without it would be a lot harder for Martina to keep on going on
So doing these videos and interacting with you guys
Is something that's very important to us
And making videos that have positive reactions, that's the key as well
So I could do videos about tons of different topics
But I wanna kinda focus on topics that make people have positive reactions in their lives
That was the only reason why I agreed to do this video is because
I thought I could hopefully, positively influence some of you guys at home
So when you're lying in bed in the morning and I wake up and I say to myself
I'm covered in pain, I don't wanna get out of bed
I don't wanna put on make up, what the point of doing my hair?
Forget filming today Martina, just stay at home
And then I have to tell myself "No, you know what? Why don't you do this instead?"
Why don't you draw this picture? Why don't you make this video
And that's what gets me out of it
SO I hope that you guys can do something similar
If you feel like you can't do something, try to find something that you can focus on
You know, going to get a cupcake, or making a video, the small victories
So I recommend that as well to anybody who experiences with any kind of
Chronic pain and depression that comes with it
SO that's it for our small update as to what's been happening over the past moth and a half
We're gonna get back to a lot more fun and happy videos
And you're not gonna see us talking seriously about the condition
Hey Simon's been going to the gym and working out
So that he can carry me places
I'm only motivated now
Like I've been working out every single day
I have to get stronger so I can carry Martina
In the next year I'm going to I'm gonna be like 300 pounds of
Gigantic viking muscle
So I can carry Martina like this if I need to
And you're gonna see a lot beefier Simon coming up very soon
So I wanna know in the comments section, if you have an invisible disability
OR a visible disability
What do you do to keep yourself motivated and get going
Lets share some tips and tricks with each other in the comments
And hopefully we can this fantastic conversation
CC by MariposaNudrath