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Ehlers-Danlos Syndrome Awareness Month

May 31, 2016

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Look! A video!

It’s not the happiest video at the moment, and I’m sorry, but we really wanted to do something for EDS Awareness month while we still had the time. We talked about making this video for a while, and we started planning something, but then Martina had to get back to Canada immediately for a family emergency, so we didn’t have time to make the video we wanted to make. I didn’t want to lose this chance, though, and I wanted to talk about EDS from another perspective.

What’s happening now is still pretty new to us. In Korea we just drove everywhere, but now that we’re in Tokyo, we’re taking public transportation everywhere, and it’s pretty tough on Martina. Some stations don’t have escalators or elevators, and when she has to climb those stairs it’s really a challenge. It’s also challenging when she has to take the elevator, but in a different way. What do you do on busy days, when you’re waiting in line for the elevator, and behind you in line are an old lady and a woman with a baby carriage? How often do you step aside, how much longer do you stay standing than you need to? And when you do take that elevator, how do you not feel shitty for it? How many people are looking at you and thinking you’re an asshole, or that you’re a lazy foreigner that doesn’t have any respect? It’s really tough for Martina, and some days she’d rather climb the stairs than deal with the shame. She feels guilty and shitty for it, but she needs to use it, and there’s no way she can convey that to onlookers the way old age and baby carriages can.

I actually remember similar circumstances with my father. He has a handicapped parking permit, and has had it for many years of my life, and I remember people shouting at him for using the disabled parking spots. They’d ask him “you know that’s for handicapped people, right? Do you have a disability?” And I felt terrible that my dad has to justify to strangers that he’s never met and will never meet again why he has a permit. Why can’t he go on with his day? Why does he have to stop and tell you about his condition? He was having a fine day, and not thinking about his illness, out with his son, and you have to pull him out of that and make him prove his merits to you. For what? Your thirst for justice?

So I’m hoping this video in some small way can help make people reconsider what it means to have a disability, and to make some people aware that not all disabilities are visible.

But that’s kind of hijacking the main point of this video, which is to raise some more awareness for EDS. May’s the month for it, and I’ve got a couple more hours to publish this before it’s not May anymore! Here, check out the Ehlers-Danlos website for more info. There are a few different kinds of EDS. Martina has type 3: hypermobility. We’re actually going to see a specialist in Tokyo for the first time ever! We’ve been waiting for months, and we finally have an appointment with him. Martina’s never been to a specialist for EDS before, and she’s had really bad, hopeless experiences at other doctors. But not all hope is lost: here’s to hoping our appointment this month works out well!

Otherwise, we’re going to have some happy videos coming soon. We’ll be filming Eatyoursushi! We’ve got another video almost edited and ready to publish, probably for Thursday! And now that Martina’s back in Japan, we’re going to start filming some more videos. We’ve got some big ones in store for June :D Yay!

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Ehlers-Danlos Syndrome Awareness Month

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  1. Hi,

    Not sure where to start. My wife has been a fan of yours for years, long before she became a YouTuber in Osaka.

    She’s suffered from chronic pain for about six years. She hasn’t been diagnosed specifically with EDS, but she was diagnosed with hypermobility a long time ago, and we’ve only put it together recently that EDS might be the reason she hurts doing everyday things.

    I would appreciate it so much if you could let us know about the specialist you saw in Tokyo and if it’s worth it to go.

    My wife follows you on Twitter if you prefer to answer there. She’s @Yunae. If you have time.

    1 year ago
  2. I’m currently making the plan to keep up with the video’s and blogs. I was watching this one from the list on youtube. It reminded me of the times when I had the herniated disc and pinched nerves that I had for three years. It was truly painful to stand, sit, sleep, and other things. Many people did not understand fully or at all how it felt. Lol, like you said, Simon, they didn’t believe what they couldn’t see. There was one summer I was waiting for an individual and two other people. Eh~ just to be told that it was too late to pick me up TT__TT~~~ The amount of pain that I experienced in that one day. I had to be in the last cart of the train leaving coney island because it was shameful to me to allow people to see the amount of pain shooting through my body. I was crying.
    The problem was because of a slip and fall on a mountain from my first hike. It was my first hike because I wanted to spend more time with someone. The rock hit me hard on one side and that seemed like one part of the injury. The next part came from issues at home.
    Anywhozertz, on New Year’s 2016, I went to church as always (New Year’s fell on a Sunday) and I made up my mind about something. I ended up being healed. Well, just between you all here and me. The pain is not as bad as before. It diminished way loads. Sometimes I go through days of left leg numbing or the mattress not being therapeutic enough for my left leg or lower back. I never felt bad looking at the males in the train. Just thinking dag why don’t they give up the seats to the women. Then again, I had to think about how hard those men worked throughout the day. Whatever job they had/have. Still, I did ask the men if I could sit down and let them know why. I even made a Microsoft collage showing the jist of what I had.
    Sorry for my words being long winded and all over the place.

    2 years ago
  3. I know the exact feeling of shame you discribe. I have been having trouble walking up stairs for years now and when I have bad days I’m currently even in a wheelchair because my hips refuse to work properly. It’s just constant pain in my hip. People can’t see it from the outside so most of the time they don’t believe me (even my group of doctors) and they all blame it in my mental state of mind. They say the pain is because of the stress. All but one Doctor. He wants me to get tested for EDS. And looking at al my symptoms I think there is a big chance I have one of the types. It just scares me a lot. Will that mean the pain will only get worse? I’m 23 years old and my boyfriend takes care of me fulltime because I can’t do a lot alone. While before I was this perfect little housewife. My whole house was neat and clean, and I loved doing that. Now I feel like I’m stuck in bed with nothing to take my mind of the pain. I want to be my happier self again. I really look up to Martina, being so hapy regardless of all the shit she is going through. You guys help me a lot! Thank you so much,

    Tomorrow I’m going to send in thhe needed infirmation for me to get tested for EDS.

    3 years ago
    • Hi, I could share with you some things that take my mind off the pain that I would feel from my body.
      Applications: Google play store
      Painter
      Iconplay
      Background Eraser
      Photo Shaper

      From those things you can color coloring pages that you can download from google.com
      You can also download anything kawaii stickers, kawaii erasers, and etc of anything you like.
      You will be able to download the pictures by lightly holding for about 3seconds the screen where the picture is and it should show a list of commands. You can choose the one that says download.
      I have loads of fun with that or gaiaonline.com is a nice place to play games and post up blogs or the gaia town is a nice place to speak to loads of people from different parts of the world.
      If not something online, but something outside of the house/apartment, then the park with a friend is a great thing to do. Maybe any free places and in warmer weather the beach.
      There are free websites filled with movies and television series as well. If you would like you can feel free to add me as your friend. LOL, I consider many people to be my friend even if I don’t know them.

      2 years ago
  4. Martina is so inspirational for being able to be so positive even with EDS! I watched some other videos about you guys talking about it and I could never imagine my joints constantly popping out! 마티나 최고!! 凄いです! I have really low pain tolerance. But my arms twist and turn in all directions like you guys once did in a different video hahaha. My jaw and thumbs and fingers and toes actually pop. It really freaks people out lol

    3 years ago