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Living with Chronic Pain and EDS

February 4, 2015

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Simon here: I’m writing this blog post a few hours after we filmed today’s TL;DR. We got back home from the studio, went out for some Sundubu Jjigae, and came back to our apartment. Martina’s totally beat, and has just laid down for a nap. It’s 8:15PM, and she’s exhausted after a really challenging day.

We’ve been planning on filming today’s video for a while now, but we never knew how, or when, or even why. When Martina fell yesterday, and I saw how her spirits were crushed at that moment, and we did our best to think about how much fun we were about to have in the video we were going to film, we realized that was the perfect example. It’s not our first experience of motivating ourselves through pain. It happens often, mostly in the mornings, but yesterday’s fall and how we overcame it helped solidify our idea on how we wanted to share Martina’s experiences with EDS.

I think that could be why we take on so many projects as well. Are we just really motivated people and can’t stop trying to do new things – like road trips and tours and opening coffee shops and expanding the studio and making an app (Android version out really soon!) – or are we giving ourselves more responsibilities so that we could keep going? I’m not sure. None of our projects are burdensome, though; all of them excite us. We’ve got some really cool stuff we plan on doing this year as well! The biggest burden is in staying home and in not doing something.

We’ve chosen an unconventional path. Hell, I’m not even sure if it’s a path that we’re on as much as a giant wheat field that we’re running through without any idea of where we’re going. The conventional path usually involved graduating from school, getting a career, a spouse and two kids, and working until you’re 65, and then retiring and traveling. That’s not something that we can do. We’re running into limits now because of our health; how functional will we be when we’re older? We’re not going to postpone our dreams for a safer day and age. We’ll do all we can, when we can, now.

We spend most of our time, so long as health allows it, in pursuing our passions, in eating really great food or in traveling to new places or in building new things. We focus on the happy things in front of us, and try to leave the upsetting things behind us. I have this reoccurring dream every month or so, in which I’m in a horror movie set, and it’s either the Chainsaw Massacre dude, or Jason with the hockey mask, or some evil thing trying to get me, but I’m never afraid of it. I simply run over to the nearest highway, and just start jogging. I know so long as I keep moving, and keep my distance, then whatever is trying to hurt me will never catch up to me, and I can keep going on forever.

It’s when I slow down to think about the situation that I hurt the most. Martina’s the greatest person I’ve ever met; she’s so radiant, and so creative, and whimsical. She’s so optimistic. She’s understanding and compassionate. There’s a spirit to her that I’ve never seen in anyone before or after, one that I knew upon meeting her how special she was, and even ten years into knowing her I still feel the same way. She has motivated me to be a greater man than I ever thought I could be. And so, it’s really challenging when I see her lights flicker, when her sun clouds over, but I do my best to ease her burden, and to get her back in her stride alongside mine, so we can both chase the nearest distraction.

December was the darkest I’ve ever seen her, and it was an exceptionally challenging time in our lives. It’s really tough to keep on going when you can’t even stand up. She’s better now. Not fully recovered, but we’ve got enough in us so that we can get back to doing what makes us happy. We can travel again. We can film again. And we can joke with you all like we used to.

You’re all a really important part in this for us. I can see Martina’s joy when she’s reading your comments online, and when she’s writing back to you. So, thank you for that. Really. It means a lot to her, a lot to us, and you’re supporting us in more ways than you might have known.

So…that’s it for this video and blog post. We’re worried that we might have been discouraging to some people with disabilities, and we hope that it doesn’t seem like we’re telling people not to discuss their disabilities openly, just because Martina prefers not to. For many people, that’s a solid way of not only coping with, but also in overcoming their limitations. For Martina, though, it doesn’t help. She’s creative, and finds creativity therapeutic. Some might not think it’s the best way to handle a life of chronic pain, but it’s what works for us. We don’t know anyone else, really, who lives in pain. We don’t know who we can relate to, who we can discuss this with. So we work through it by making all of the things that make us happy, for as long as we possibly can.

Hopefully you won’t think worse of us because of this post, also. Martina’s condition doesn’t change how we’re going to make our videos; nothing now is different from how we’ve made videos in the past. I’m sure when you see our fruit video coming next week, you’d have no idea about what happened before we filmed it, so we hope you won’t think sadly when you watch it, but instead laugh along with us, for that and for the rest of the videos we do.

And, lastly, even though we don’t talk about it often, it doesn’t mean we’re not willing to talk about it here, now. Though we’re not experts on Ehlers-Danlos Syndrome, or Chronic Pain, and the best way to either treat or cope with either, we’re willing to talk about and share our experiences here, and would be open to hearing yours as well. If you’re comfortable with it here, we are too :D

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Living with Chronic Pain and EDS

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  1. My mom came down with a chronic pain disorder called RSD or CRPS2 when I was twelve years old. At the time she had three jobs one of them a small interior design business that she and my father owned. Suddenly, because her left arm was in searing pain all of the time she couldn’t do all of the things she used to do. For me at twelve it was like watching a giant fall. This woman who had always been strong and wholly independent couldn’t even push a shopping cart on her own. I became her left arm for many of my teenaged years; I pushed the shopping cart and carried the clothes at the department stores and hung pictures and made dinner. I put aside my own problems (which were increasingly severe) for hers. I learned from her example and conceived my hurt, covered up my crippling anxiety problems by being a good student so she would have one less thing to worry about and then I watched her marriage fall apart as she became unable to keep a job while she was trying to manage her pain. It was like my whole world was coming out from under me. I think my worst memory of all was a time that she and I were headed to the mall so we pulled into handicapped parking because it was windy and cold and air pressure affects her pain level. Anyway, this man in a truck say us start walking to the door (which was very hard for her because RSD caused terrible joint swelling) and rolled down his window and screamed “is like to see who’s handicapped there.” It broke my heart. For the rest of the time we lived in Colorado, she avoided handicapped parking unless there was no other alternative.

    5 years ago
    • I’m so sorry about that guy! People just assume that handicapped requires a wheelchair, cane, etc. Invisible debilitating problems like that are so hard on everyone. Hwaiting!!!!

      5 years ago
    • Good lord. I’m so sorry you had such rude people like that guy. People are just shitty sometimes. I hope that you and your mom get any and all help you want and need. You don’t have to suffer or hide your pain because a loved one seems to have it ‘worse’. Pain is pain, both physical and emotional. I sincerely hope things can get better for you.

      5 years ago
    • I apologize for the typos, I was crying while I was typing. It’s still a very hard thing to talk about.

      5 years ago
  2. Hello simon and martina, i just want to say i’m so happy that martina was so strong for a long time, she inspires me a lot since i have a Chronic disease, thank you so much for being helpful for us by filming this video, btw we miss you so much guys and we’re happy to see you again, all the love.xxxx

    5 years ago
  3. Martina, you are the perfect example how to deal with such an uneasy thing as chronic pain or an “invisible disease”. I admire you for that. Simon, you are a perfect husband, you know that, don’t you? :D You guys motivate me like no other to keep going, to be attracted to happy things, to be a better person, and I am very grateful for that.
    As for me, I suffered a severe depression for 3 years, and it got me to a clinic with lots of proсedures and lots of medications. And I remember my withdrawal from medication was the worst thing ever, because I cut it out in one moment. Do not ever do this, people! I also have neurangiosis, which is basically constantly feeling down and loss of consciousness from time to time because of really low blood pressure, and I find it really hard to explain it to people why I feel blue and moody, because it’s absolutely invisible. I try to cope with it by not letting myself to stay in bed, by going out constantly, by staying positive, but sometimes it’s getting really severe especially after I faint. Usually I don’t feel like talking about it, but I just want to share it with you, because I totally agree – we should be naturally very delicate to each other even if we don’t see that something might be wrong with the person.

    Love you.

    5 years ago
  4. I’ve been following you guys for years now, but this is the first time I’ve decided to comment on a video, so I’m kinda nervous… ^-^;

    Thanks for making this video! Although I don’t have an invisible illness myself, my husband has a neurological disorder called POTS that just popped up a few years ago. It makes it hard for his body to regulate his blood pressure and heart rate which can make him pass out or feel like he is having a heart attack randomly throughout the day.
    What was the hardest part for me though (as the significant other, watching him go through this) was the depression that can along with it. He really took it hard when he first got symptoms. He was always extremely healthy until about 23 when this started. All of a sudden it was difficult for him to get out of bed, his heart was beating out of his chest making him feel like he just ran 6 miles, he was passing out at work, going to tons of doctors that had no idea what he had, giving medications that they didn’t know would work or not (we went to so many ERs that first year). It was an extreme lifestyle change that we are still working on today. It’s easier to manage the symptoms now and he tries to hide that he not feeling well as to not make people worry (so I understand when Martina says she doesn’t like to talk about it) and think that he is weak. Some days it’s harder to get out of bed than others. It’s difficult for people to understand that he is not well because he looks perfectly healthy. It’s so important for the SO’s of people with chronic illnesses to be a pillar of support to rely on while everything around them seems to be crumbling. I try to be the most positive person in the world when things get bad because I know that his head is full of dark clouds. They may not want people to worry, but they don’t want to go through it alone. ^-^

    5 years ago
  5. I’ve suffered from on and off depression for the last eight years. It started showing itself when I was 14, although neither me nor my family recognized it as such at the time. They thought I was being difficult (by being ill a lot, keeping to myself and trying to get out of going to (a new) school). It wasn’t until a family member I was very, very close to died when I was 18 and I hit rock bottom that I finally got a diagnosis after four years of various doctors and bogus diagnosis (not really sure what the plural form is- sorry, I’m Norwegian, and English is as such not my mother tongue). At this point I started self-harming and became increasingly desolate, and my drama teacher spent weeks convincing me to see a psycologist. I started using anti-depressants which helped a lot. I still have bleak days, where I can’t seem to get out of bed or eat, or do anything, really. But luckily they are fewer and much further between these days.

    I also have a slight anxiety when it comes to facing new people and new situations. Which is why I got my dog Chingu (profile picture) before I moved three hours from home to go to a school (teacher training college) where I didn’t know anyone two and a half years ago. She’s helped me a lot. I find her to probably be the thing that keeps me going. When I’m having a bad day, she stays with me at all times, refusing to leave my side. The fact that she’s a constant source of affection and consolation is definitely a big part of why I’ve been more or less stable since I got her.

    I also feel like you guise are partially to thank for lifting my mood (and I promise this isn’t something I’m just saying here). I discovered your channel back in 2009, around the same time I discovered k-pop, and was lured into the wonderful world of South-Korea via music, variety shows and k-dramas, which happened to more or less coincide with my psychological breakdown. Your videos never fail to make me laugh, and should you happen to read this, and stick with it all the way to here, I just want to take this opportunity to thank you, Simon and Martina, for sticking by your passion, and not letting your daily struggles (which I will not pretend to understand) stand in your way.

    Much love,
    Anita

    5 years ago
    • I’ve been struggling with the same issue, and it’s one of those things that you have to just take one day at a time. I’ve been on two different medications, both of which had nasty withdrawal symptoms but have helped me a lot.
      I also find that meditation, sketching, journaling, going on quiet walks, and finding new productive ways to channel my energy are very helpful. If there’s a day where I struggle to get out of bed, I have a journal in my nightstand where I’ve written lists of things I’m thankful for and the blessings I’m fortunate to have which sounds super cheesy, but really helps. Don’t be dismissive of your feelings but find new ways to express them. Finding someone you love and trust to talk to helps too, my friends keep me from hiding in my room on more than one occasion
      You can do it! :)

      5 years ago
  6. My TLDR;) QUESTION IS WHAT IS DENTISTRY LIKE IN KOREA…. I HAVE WATCHING FOR THREE YEARS AND YALL HAVE NEVER TALKED ABOUT IT BUT A LITTLE ONE…Thankyou for sharing this… I have Aspergers which isnt as bad as what you have, but its makes my life hard because i dont understand alot of things. It makes simple task seem hard. Like driving, going to the gorcery store, dealing with people at work, and just life in genral.

    5 years ago
  7. It’s funny because, i created an account just for that comment! Yeah at 8:55 I saw myself…like almost everytime… I don’t have chronic pain, well not sure, i have Osgood Schlatter disease. It’s not one of the worst case but about 4 days a week my knees get swolen and it hurts but there’s just 1 time a month where i can’t move my knees without feeling like dying.. It’s been now 10 years i think, probably gonna have it forever. Oh well, that doesn’t bother me anymore because i have worst. I’m going for my 9th and last surgery this summer for my cleft lip and palate. Now we almost don’t even see the scar because i had good surgeon (the best in canada for reconstructive surgery they say but he’s now retired), got bullied and all that but I’m good now, i’m not even scared of surgery haha! Not bad. But then 2 years ago My parents and I moved in Moncton, NB and it’s 14h from my friends and I developed a bad bad depression and panic attack. I screwed 2 semesters at the university because of that (mostly the panic attack..) but i got meds for a few months. I stopped in september and everything is…kinda fine… Still have panic attack almost everyday. But it’s ok i guess. And I have my moments of depression on & off that i usually hide with a smile… I’m in one damn moments and well it’s so bad i might even need to go back on meds but i hate them. So when you said at 8:55 all that went through your mind when you fell, i saw myself so much…made me almost cried haha! I need to learn how to motivate myself like you do. I used to take my motivation in kpop but i don’t know, i think i need something else with kpop. But you’re really strong! Really really strong! I got really unlucky but there’s people with cancer and worst disease than me so can’t complain too much. One day I’ll be able to be the happy smiling girl i was :) Gonna subscribe to the comments to see if I can catch a good trick or 2. Ps. All your videos are awesome and i was wondering, since you lived here in Canada (yahouuuu!) if both of you knew a bit of french? I’m a french canadian (quebeckers, yes us the weird one, but i’m now a…neo-brunswiker?? What’s the word in english haha XD ) so that was my small question :) see ya! (Damn is that a book i wrote? :) ) thanks!

    5 years ago
  8. Thank you for sharing this. I know how hard it is to talk about chronic pain and depression in a semi-serious tone. Humor is best, at least on my experience. So thank you for doing something else in your day that was hard. I particularly appreciate it because it was because of the first time that you talked about your struggle that I realized I was not alone in mine. Keep being happy, both of you, I look forward to seeing your smiling faces on days when I don’t want to get up because I know it will hurt when I do. <3 Fighting!

    5 years ago
  9. What an amazing post! Martina I know how hard this must have been to share but I really appreciate that you did. I have Fibromyalgia, which when it flares up makes me feel like my body is on fire and it hurts to even lay down and just breathe. It also comes with a lot of nasty symptoms other than the pain like brain fog, where I just can’t figure anything out. Super frustrating. The hardest thing is that people don’t believe it is a real disease, so they think you are faking it or don’t understand how much pain I am on, to the point where I can’t sit up straight. While most days I may be fine, flare ups are incredibly debilitating. I think for me the best way I deal with it is to recognize that I have this and give myself a break. If I can’t wear heels one day because it hurts too much o don’t. I allow myself to rest when needed because its the only way I will get better. And honestly sometimes I do need to talk to someone else about it- like just telling a good friend, hwy my body is on fire today almost takes a little bit of that weight off my shoulders. For the most part I try to be as active as possible on the days that I feel good. Stay strong Martina-I know all us Nasties are sending warm fuzzies your way. And its also a comfort to know there are others out thrre-were the superheroes being held together by duct tape ;-)

    5 years ago
    • I’m in the same boat as you. The “fibro fog” is the worst, because it makes me feel like I’m an idiot when I can’t remember simple things or recall oft-used words. Don’t worry – you know you have at least 1 other person in the Nasty fandom that knows exactly how you feel.

      5 years ago
  10. Thank you so much Simon and Martina for sharing that with us all, I understand that it’s such a hard topic to talk about because you’re not your illness and don’t want to be treated as ‘that person with a condition’. I admire your strength and motivation about everything and coping with difficult times (& reading Simon’s blog post brought me to tears).

    My sister and I both struggle from chronic pain. My sister has severe scoliosis and when she was 17 had major surgery to place rods in her back to help otherwise she was told she wouldn’t live past 30; she now has to have the rods extended in the next 10 years (she’s 23 now) and won’t be able to have children from her arthritis and the weight it would place on her. Ever since then she’s had major difficulties with her back and is often confined to wheelchairs, relying on her husband and us to help her which makes her feel terrible and incapable.

    I on the other hand have chronic abdominal pain effecting everything which I feel compared to my sister and you Martina is minor. 2014 was one of the hardest years for me, I was very poorly for over 6 months being admitted to ED on a weekly basis with an array of issues. I was forced to withdraw from uni half way through semester and defer the next because I was unable to continue. I eventually had three lots of surgery each with complications after so much pain and waiting I found it so frustrating and upsetting that I felt no one believed me. When you were talking about tramadol I understand the potentially dangerous side to it and I’m glad you’ve gotten over the withdrawal side effects. I developed serotonin syndrome badly after being placed on tramadol, maxolon (an antiemetic) and amitriptyline whilst I was already taking SSRI antidepressants for my previous depression and anxiety (major depression since I was 13 when my dad died after a series of strokes). I remember when I called my now fiancé (woohoo) to tell him I was in hospital again and I felt so awful as I knew how helpless he felt and how worried he was about me, I’m sure he was more worried than me as I was so used to it ha. I’m so incredibly thankful for him for being there through everything and helping me get through it. Simon you must make so much of a difference in Martina’s life and she is blessed too to have you by her side.
    I still go to the doctors weekly and see multiple specialists for everything but I finally feel like things are on the up with proper help. I’m sorry about your experience with the genealogy doctors especially when you want something good to come from it. In my last endoscopy the doctor told me I should start this special diet which basically eliminated everything but as I was anorexic for 3 years and now a recovering bulimic for 2 that type of diet isn’t particularly beneficial for my recovery; so frustrating when I can’t do it from other people telling me not to restrict.

    I’m sorry for the ever so long message but your video and blog post really spoke to me and I appreciate it so much. I wish you you both all the best & all the happiness in the world, I hope things get easier again for you both soon.

    Katherine

    5 years ago
  11. Whenever I am unwell or unhappy your videos make me laugh and I am just feeling better overall. Whenever I am feeling depressed, because my life sucks at the moment, I see your radiant personalities and how you cope with negative things. Then I am feeling a bit stronger or at least I am telling me to be stronger. This video, as well, encouraged me to make the best of the day and to try to see the better things in my life. I think I will even begin to write and to draw again, because that makes me happy (I’m german so I write better in my own language ;)). And to travel. I’m always telling myself, that I shouldn’t travel because I should work and learn even more, but now I decided that I will definitely travel to Rome this year! Martina you are so strong and a good example to never give up and I love your way of thinking and how you try to see the good in all things. And Simon: If I ever get a boyfriend or an husband I would be happy, if he would be a little bit like you. It’s hard to feel pain, but it’s also really hard when the person you love is in pain and you are feeling helpless. But I am sure you are helping her in every way you can. The love between you seems to be really strong and I wish you both the best from the bottom of my heart.

    5 years ago
  12. I admire you for talking about it Martina. Thank you for sharing. :) I myself weave in and out of depression since I lost my nan at 16. It was hard because it was on a Christmas eve and happened… In a not so nice way for her n it haunts me. For me I have always turned to music. I love my music and if I had the right programming for it then I’d probably be a DJ creating music like a trance musical badass. :P Another thing for me has been gaming. I love to escape the world and go into another like Final Fantasy games, Child of Light, Scarcraft 2 and/or Mortal Kombat. The other thing is my art. I do alot of drawings, painting and even get creative with make-up and nail art. These things are my escape. I usually find a few people go the alcohol or drugs or other routes but I feel they’d only make me worse not better so yea. :) Basically being creative is my release. I also from time to time livestream my games on twitch which again like with the videos you folks create give another release.

    So all in all they are my ways of dealing with issues in my life (which I’ve only told one of many). Again I wish to thank you for being open about yours and wish you guyz all the best.

    Love and happiness to you all :) <3

    5 years ago
  13. Thanks for sharing your story and your tips, Eatyourkimchi!
    I have IBS and it doesn’t sound like anything big, it can be embarrassing, when your guts are making raging sounds and feel like they’re going to explode during an exam/a job orientation/at the restaurant. Shake my head. What I did to control it was learning about the symptoms and triggers. I had to actively change my lifestyle to accommodate to my needs and to make it a healthier one. I used to take prescription pills for it, but it didn’t do anything. So now I wake up 2 hours earlier, drink green tea, avoid heavy meals, avoid caffeine (it makes me agitated anyway), and avoid lactose. I wish you guys all the best health and fortune!!! May 2015 be a fun year for you all! We all love you~ <3 XOXO

    5 years ago
    • I’ve been wondering if I have IBS. It must be that or really bad anxiety. I have dealt with it since I was a little kid (I’m now 27). I went to the doctor years ago, but they said it was just nerves. I decided this year that I am going back to a doctor to see if I can find out what is going on. I see him next Tuesday. Hopefully I’ll get some answers. :)

      5 years ago
  14. Less than a month into my 9th grade year I started feeling intense pain in my right hip. After 2 weeks, I had the same pain in my left hip. I live in a small town, and the doctors didn’t know how to treat me. I had 2 blood tests that covered a wide array of diseases or illnesses I could have had, but all of them returned negative. I felt so hopeless, I was sick and no one could see it, and at the same time no one knew what was wrong with me. My teachers at school were nagging at me to come to school, my classmates telling me to stop playing hooky, and no matter how often I explained “The doctors don’t know what’s wrong with me” no one believed me. My pain was internal, no one could see what I was going through or understand. Every day I tried to go to school meant 2 days of laying in bed at home in agonizing pain because I couldn’t get control of my pain. I was extremely depressed, not being able to get out of bed or tie my own shoes made me feel so hopeless. I finally got a referral to a large childrens hospital and after trial and error with being referred to doctors who couldn’t help me due to their specialties, I was diagnosed with juvenile rheumatoid arthritis (JRA) at 15. It felt so much better knowing I had something to tell people I had. My doctor also said it was due to stress of school, and the most important thing I could do was put myself above everything else. My pain meant more than being at school and sitting through class just so I would be counted as present. He concluded my pain was from high stress. After this diagnosis, I worked towards getting better, not only physically but mentally. I had to go through a lot of physical therapy which helped me immensely in bettering my mobility. I can’t just thank my doctors, but I have to thank video games as well. The whole time I was laying in bed sick, my brand new gaming PC I got for Christmas was sitting on my desk, unused. I wanted to use it, I wanted to play my games, so I used it as motivation. Every day I’d try and see how long I could sit at my desk and play, how long I could sit without having to stretch, testing my limits because I knew at school I would have to be sitting for a long period of time. I finished my 9th grade year on a high note, my GPA was a 3.9. Through the pain and the suffering, I achieved. Today, 3 years later, I’m homeschooled, graduating highschool a year early, and attending college. It was hard to go through, and I still have pain some days, but with perseverance I made it. I kept pushing through, doing what I loved, working and striving for more, and it kept me going. I understand what chronic pain is like and what having an invisible disease feels like, and all of the things that come along with it are not fun. I hope reading these comments give you strength, Martina. You aren’t alone and we’ll get through this! We love you!

    5 years ago
  15. What an inspiring video! I really congratulate you Martina on taking this bold step. While it’s cathartic or therapeutic for a lot of people to discuss their trials or illnesses, very few are brave enough to talk about their searches for solutions and coping mechanisms so that it can help others. I think that your positive attitude is so beautiful and contagious, I hope that you can hold on to it forever. I know that it is part of why I enjoy watching your videos so much. I might even venture to say that it’s a very attractive part of your videos for people who are having difficulties in their life, that they can be inspired to keep on keepin’ on and trying to find the joy, like you. I hope that you are able to find a better pain management path, it might be worth a trip to Chicago (if you haven’t been, it’s a fantastic city to visit).

    My story of pain is more emotional. Due to financial reasons, my husband had to work in another city for almost 3 years while I was left to raise our toddler by myself and fix up an old house in which we had just ripped holes in all the ceilings and walls. He wasn’t allowed overnight guests at his cheap basement rental so we couldn’t visit him and it was a 5 hour drive through the nastiest winter driving to see us so we didn’t see him for months sometimes. There were days when I didn’t want to get up, but I had to, kids have to eat. There were days when I just wanted to zone out in front of the tv all day because I was so sore and depressed from trying to fix a house that broke more every time you tried to fix something. I went through a lot of physical pain (3 operations for various injured or failing body parts), a lot of emotional pain (trying to raise a kid on my own and missing my husband) and financial pain (paying to live in 2 locations). I did enjoy having eatyourkimchi videos to brighten my day, that actually helped me keep positive, it was hard some days when there were no video as expected because then there was extra let down in my day on top of the already huge pile. Two big things helped. 1) Get out of the house. When you live where you work, there is no escape but to leave and the fresh air really does help. Bring a friend if you can. Even if it’s just a drive in the country or a trip to a playground, get out. 2) I also came to the conclusion that the only way out of this torture was the keep moving forward, no matter how far the goal. Even if I did just one small thing per day, that was progress. It might not be on the room or the wall that I was sick slagging away at for that week, but something, anything, would help ease the burden and keep me feeling like I was closer to the goal. It’s when you start to feel that you are behind, that darkness comes calling. Small, achievable goals really really really help to you keep going. I even separated mowing the lawn (which I totally hate) into two parts so that I wouldn’t have to mow for more than an hour at a time and then, only on the shady side of the house, and then would cut the lawn into weird small shapes so that I only had to concentrate on small sections at a time and felt some small achievements throughout the job to keep me going. It’s a small thing, but when it’s a job that you hate piled onto a high pile of work, anything you can do to make it easier, helps you get through the day.

    Well, (ahem) anyways, glad that you are back to making videos, I hope that you have fun doing them. Don’t be afraid to cry over it from time to time, keeping it in only adds to the stress. It’s also okay to accept or ask for help when you need it. And taking a “personal day” is all really need to tell anyone, just try to call them earlier to avoid people waiting all day for a video that isn’t coming (that’s what makes people mad).

    Cyber_3 – getting back to working on my sister’s wedding dress.

    5 years ago
    • You. Are. Awesome. That’s gotta be an incredibly hard thing to do, being so far from your husband for that long. All the props to you.

      5 years ago
      • Thanks so much, that’s very kind of you. I know that a lot of people are in this situation with the global economy as it is so please just keep hoping to anyone in that situation or just avoid it if you possibly can. We got out of it eventually but it was so damned hard. I would NEVER EVER do it again. My husband’s situation was just as bad as mine – living all alone in a strange town, in crappy basement, working overtime all the time, missing his son grow up, not eating right. He called me on the phone every day for 15 minutes on his lunch hour, it helped us to have that to look forward to as well.

        5 years ago
  16. thanks so much for making this video. My 8 yo daughter and i are both fans, and i think she needs to watch this. Gigi is on the high functioning end of the autism spectrum. it isnt immediately obvious that she has a disorder. it is often dismissed as her being spoiled or just plain weird because they dont know how hard it is for her simply to sit in a class room and interact with other people. she loves school but it is exhausting for her. some days she just doesnt want to do it, and by it i mean ANYTHING that isnt laying in her bed and watching/ making videos. she loves making videos too. we just bought her her first “real” camera and downloaded her first suite of video editing software. when she gets home from school i’m going to make sure she watches this video. i think it will mean alot to her because she adores you martina. she’s alot like you, so for her to know that you have problems too, and to see you get up and do it all anyway- i think it will serve as a great inspiration. thank you !

    5 years ago
    • I’m happy to hear that your daughter is getting into video so early on! I wish I got into it sooner than I did. We didn’t start editing until our 20s. If she’s starting this soon, she’ll be a whiz at it in no time :D

      5 years ago
  17. I relate strongly to you martina. Back in 2007 i was diagnosed with myasthenia gravis which is essentially a complication with my muscles which have no cure. I was alone studying far away from home and it was hard. Having invincible disability is hard coz we appear to be somewhat normal but the mental and physical pain is unbearable. Everyday when i wake up i hope that i am back normal and my body would just function normally. Some days i cant even lift my eyes and to other ppl i appear to be sleepy (no way im telling ppl tht im ill). Only my close friends knows about it and i wanted to appear as normal as i can be to other ppl. Laughing it off and concentrating on positivity works for me to cope with all the pain and depression. And a hunky man loyally by my side doesnt hurt either :) currently my disease is under control, and i am sending lots of hugs your way martina. I know u can do this and thank you for sharing. And simon, i can see that u hurt as much as martina do, lots of strength your way but i guess a dothraki man have plenty of strength already.. love u guys

    5 years ago
  18. aww, thanks for sharing this. Even i’m physical healthy, but i feel quite depression and every day is a fighting to wake up, to do something. The worst that i totally lost creativity and that’s very important in my job :/ well but your videos always lift my mood and inspiring me. Martina, so good that you have Simon by yourself :) i hope some day i will have such person next to me. FIGHTING <3
    Like Yoshiki from X Japan said: Nothing is impossible!

    5 years ago
  19. Simon, by bearded brother, we hate hearing our friends are in physical and emotional pain, but not because we don’t want to hear it. That sounds funny, but really you make it sound like talking about it is something we would judge you negatively about. That of course is silly. Sharing your happiness with us has made us fans, which are friends you don’t really know yet. Sharing your pain is something friends need to do too. We can’t feel the pain, but you know we greatly care about the EYK team. Your successes are inspiring, and so are your struggles. I didn’t know what Martina has to go through until her “draw your life”, and I was surprised and worried. You are real people and that’s why we have a connection. Thanks for sharing with us, and know that everyone places your best physical, emotional and mental health far above the brilliant internetainment you provide us. My wife and daughter love all you EYK folks and pets. Keep jogging and know you aren’t jogging alone. -Mike, Chey and Ember.

    5 years ago
  20. Oh guys, I have never commented before but I feel compelled to now (actually, thinking back, I have been watching since you were both teaching!). Thank you for this video. I suffered with bad Generalized Anxiety Disorder for a long time, and luckily it is mostly controlled with medication right now (SO LUCKY). Your message really hit home for me too, because NOT talking or thinking about it makes me feel better as well. Mental disorders (and I can imagine physical ones as well) take over your brainspace, and discussing it constantly makes me feel worse (I know not everyone, but personally very much so). It is hard sometimes to find a good distraction from negative intrusive thoughts – but hearing how much success Martina has by being creative and focusing on the happy is such an important message. I try to cope in similar ways when I’m going through rough times, but a reminder is ALWAYS helpful. We don’t have to suffer alone, and we don’t have to suffer together either – we can be happy together! I have watched your videos as a pick-me-up in the past, but now knowing this will make the time I spend watching your videos even more special :)

    So in short, thank you for sharing! I’m glad you guys communicate with us in the way you do, and I’m very supportive of you and your decisions. Big hugs!!

    5 years ago
  21. I’m sorry to hear what you’ve been going through and everything is getting better. I have Type 1 diabetes and was diagnosed a little over a year ago whilst living in Korea. Since being diagnosed it has been a constant struggle of keeping my blood sugar in check, watching what I eat, and always making sure I don’t forget anything incase I go hypoglycemic. But what mainly gets me through the day is actually looking forward to the food, I’m going to eat. I don’t let the condition I have rule my life and control who I am as a person. I still eat the foods I love. I also still live abroad in Korea because I know If I did live back in America, i know I would be more depressed there than I would l living anywhere else in the because I love adventure and I won’t let diabetes control me.

    5 years ago
  22. MARTINA!

    I can sort of feel a percentage of your pain. My knees tend to dislocate sometimes as well, and are just really weak in general. I have ended up on my tail end from my knees giving out too. It’s super embarrassing for me too. I can’t imagine it happening ever day, it’s really impressive you can even deal with it as much as you do. =]

    You are seriously an inspiration to me, and many other nasties on accepting our femininity and going with it, a knee brace is never going to stop that, or clash with that. You are the most adorable person I know.

    Next time you think about not wearing something that will keep you safe, and from pain, just remember, we seriously LOVE you. My heart hurts thinking about you feeling like we might judge you.

    I hope you get lots of positive vibes coming your way, and I think I speak for every one when we say, You guys are the best, and we love just being a part of your lives!

    5 years ago
  23. Thank y’all for posting this, I’m sure it’s not an easy thing to share with hundreds of thousands of people. But, I’m really glad y’all did. I have hypothyroidism, which thankfully is treatable, but when my levels are off balance I suffer from bad joint pain, depression and a slew of other uncomfortable symptoms. While my pain isn’t all that bad, I definitely get those Negative thoughts that make me not want to try. Martina, you really are an inspiration and if you can face the day I can too!

    5 years ago
  24. I hope you feel better now Martina. If you ever have other issues with your drugs, you should talk to your pharmacist about it. It sounded like your doctor did a terrible job with your meds. From your video you said you had bad stomach pain from your drugs, I suspect that was caused bu the meloxicam. Most doctors would prescribe some kind of stomach meds along with the meloxicam as stomach pain is a very common side effect. I agree that withdrawal from Tramadol can be awful and your doctor SHOULD know to taper your dosage(being a pain specialist). I don’t know if you are still on meds or not, if you are then you should try a different doctor and like I said above, talk to your pharmacist. If you are not, I highly suggest that you reconsider it. Yes meds have side effects but they can be managed properly and there are lots of alternative drugs that you can try. It is, however, ultimately your decision and I hope you make that decision after being fully informed what the meds can do for you. Sorry I rambled but being a pharmacist I see Dr messing up their prescription every day.

    5 years ago
  25. First of all, you guys are BACK!! *throws confetti and does a celebratory jig*

    Second of all, thank you for sharing such a difficult topic with us. I don’t have a chronic pain or disability so I can’t really talk much about this. But I’ve read books about people facing extreme difficulties and I am always impressed with how positive these people always tend to be, like you!
    My favorite quote is from a book by Viktor Frankl – Man’s Search for Meaning. It goes “if you have a why to live, you can bear with any how.” This guy went through real horrible suffering, surviving the worst of the concentration camps during WW2 only to come back home realizing that his whole family has been murdered in the camps. But he managed to find meaning in that and pulled through, living positively.

    <3 I wish everyone more happiness and health this year! (since the Lunar New Year is coming) ;)

    5 years ago
  26. Actually, I suffer from practically the same disorder as Martina does. It’s called HMS, which is hypermoblitysyndrome and it basically comes down to the same problem. My muscles and tendons are too weak to keep the joints in place so they dislocate, causing infections within the joints but also overloaded muscles and tendons. As a result, I’m at home, unable to work full-time and basically stuck doing nothing or less than I want to practically every day because of the pain. Especially during winter (right now) it’s just very bad and demotivating. So I understand what you’re going through, Martina.
    So what do I do? I Skype a lot! Unable to meet up with my friends I talk through Skype to keep my spirits up. Other than that I also bury myself in creative outbursts like making cosplay costumes, painting, writing stories, making stuff for my house, anything that I can get my hands on and makes me happy, really.
    Even though it’s hard to live with such a limiting condition sometimes, especially because pain medication doesn’t really work like you pointed out, it has also made me a stronger person which I am grateful for. I can endure a lot more, I can stay positive throughout the worst in life (not always though ^^;;; )and I have learned to keep my head up high and keep going which in the end gives amazing results I am always very proud of!
    So the best tips I can give is to never lose the love for yourself and don’t look at what you can’t do but what you CAN do. It’s hard to fight the negative thoughts in your mind whenever things get harder and painful but you have it in yourself to keep fighting! Don’t ever give up the fight and try not to think less of yourself because of the struggle you face each day. And when it gets too much to handle, take a step back and leave the world for what it is and focus on yourself and your loved ones for a moment. It’s not selfish or anything to make yourself your priority! You are worth it after all ;)

    5 years ago
  27. I wanted to encourage you both for bringing such an uplifting message of positive action to such difficult circumstances. I don’t typically reply on online media, but I’ve received so much enjoyment, laughter and encouragement from you videos and I wanted to express that. Although I’ve not had the extreme depth of your condition, I can relate because I’ve had what is best related to IBS, something that turned up in the last few years in my life. I haven’t been officially had it diagnosed (despite my husband and mom nagging me to) because I just don’t have or had the fortitude to deal with the doctors, the tests, and the bills that would follow. So, I’ve worked on it from home, with a friends ear who is going through it worse than me, and trying to manage. I just remember my worst time, the misery, inability to leave my own house, the tears of feeling like a failure of a mother for not providing what I felt like my kids need because “Momma’s stomach hurts right now”. It was and is all so easy in those times to get sucked in a hole and not want ti come out. And everyone on the outside has no clue because, like you, I don’t like people to know my problems, I don’t want pity or platitudes. Plus, I am incredibly private in general. All that to say, your experience rings true to mine and your lovely positive response and life voicing the positive to overtake the negative is an encouragement to me, personally. I have survived my dark times through my faith, my husband (he us beyond good to me) and my determination that my kids not have a hole dwelling momma. So, a wall of text to say I get what your saying, and thank you!

    5 years ago
  28. Hi! I can relate to what your life is like. I suffer from IBS and it causes severe stomach and back pain every Day. It’s very differnt kind of chronic pain, but I can still relate to you. Thanks to your video I understood that the cause for my depression May have been the pains. For three years now I’ve been neglecting school and social activity because I am scared of the disability to move and take care of myself whilst I am in pain. Now I’ve come to conclusion that it’s better to see People than stay at home, but everything in my oen limits. For example I was in school today. I attendet only one class but still I went there and felt so good about myself. Unfortonatelt I was diagnosed with endometrios a week ago and I too need a strong pain medication for handling the severe pain that the disease comes with, but because of my weak stomach and the treath of a stomach bleeding I’m unable to eat the medicine. But there is no choice but to keep on going!!! Thank you for your video, it really means a lot to know that I’m not only one struggeling to get out of bed every morning and that it’s possible to be such a bright persona dispite all of that. I’ll try my Best to get out from this slump and I wish the Best for you to^^

    5 years ago
    • Crippling pain to a point that I cannot move is something I have that time of the month, every month, since I first have my period. I try not to take any medications for it and totally get it when Martina says your pain tolerance is way through the roof. I don’t take painkillers after getting my teeth pulled out. It doesn’t hurt, but man when it’s that time, geezuss. It helps that people around me acknowledge my pain, because I’m white as a sheet, but I understand that most people don’t have this luxury. So I know how it feels, Fighting!

      5 years ago
    • Endometriosis is not an easy thing to deal with. I have lady problems too, and mine are so bad that I need a hysterectomy… at 28. -hugs- Do everything you can to get help for it, even if you have to try 50 different medications/birth control/whatever to help. It’ll make your life so much better, trust me.

      5 years ago
    • Oh my, should have checked the spelling before posting ;_;

      5 years ago
  29. I just finished watching the video and all that i can say is both of you are so lucky to have each other. At first i wanted to share my negative thoughts about the world right now as i am also currently depressed about my life, but after watching the video, i still kinda want to share it but i also want to be positive as i post this because i want to see / make martina happy. I guess we’re all lucky that we have the internet that we can use to share our views about life and although we all know that suffering is all around the world but with the internet it helps our lives get a little bit better. I hope you won’t stop sharing laughter and fun here in the internet and that in turn all of us here in the community could live a happy internet life. Thank you for sharing this video!

    5 years ago
  30. I’m so happy you told about this, even if it was hard. Hearing about it always helps to understand “invisible” illnesses, at least it helped me. I admit I have been judgmental in the past, e.g. thinking that a pretty girl can’t be depressed because she’s so beautiful and takes good care of her looks. I’m ashamed of that now. But now I know to think twice and try to be more understanding. I can’t imagine how you guys are feeling, but I wish the best for you. I’m one of those fans in the background, who doesn’t participate much on the conversation, but your videos make me as happy as they do everyone else :) You know feel-good movies? EYK is my feel-good-channel.

    P.S. Martina, your makeup is so beautiful! Wolverine makeup.
    P.S.S. More Sailor Moon videos, please.

    5 years ago
  31. As someone that has IBS I understand how tough it can be, although based on what you just said EDS seems a lot worse. I take medication now and I’m mostly fine. But there were a few years where I suffered from abdominal pain everyday and sometimes it was so much I had to sit down in a foetal position to ease the pain. It really sucks that there are no cure only things to ease the symptoms. There sure are times you wish you had something worse but curable instead.

    5 years ago
  32. I love ya Martina and in a totally platonic way ^.^. I was born with Club Feet and with that I had my share of side effects. Thankfully, the lovely phantom pains I used to experience, I grew out of. Doctors said they were caused by the extreme reconstructive surgery I under went. They said it was like loosing a limb cause my body kept telling me my feet were in one place when they now were in another and the pain was just my mind coping with it. If that makes any sense at all. I still suffer with weakened ankles due to loose tendons and ligaments and one of my feet tried to revert to it’s original state. I forget the technical term but the doctors still did a dang good job. Seven surgeries and I can walk thanks to the people at Shriner’s Hospital.

    5 years ago
    • That’s awesome! I’m glad it was fixed, though I bet it wasn’t fun going through that many surgeries. Go you!

      5 years ago
  33. Beefy hipster Simon :D I´m waiting!

    5 years ago
  34. It made me sad hearing about this, but at the same time, as you wanted, it also was a very encouraging video. I struggle depression and some other disease, and getting through everyday is very hard. but it’s nice seeing how other people cope with their pain, wether it is chronic, mental or just in general physical pain. I’m looking forward to more cheerful videos, because i absolutely love them. and i hope you get better ^^ I hope you know, that your videos help cheer people up or get through their days, it’s always a highlight when you upload a new video :D

    5 years ago
  35. I love you, Martina! *big glomps of hugs and snuggles* <3 <3

    5 years ago
  36. Q

    I admire you both so much :)

    5 years ago
  37. I actually couldn’t finish watching this video because I’m at work and it’s making me cry, but I really wanted to comment right away anyway. I know how uncomfortable it must be to talk about something you’d rather just not think about, so from the bottom of my heart I want to thank you for sharing anyway. My mom was diagnosed a few months ago with a really rare autoimmune disease that made her hands go numb and totally useless, but also have serious shooting pains all the time (she was on tramadol too actually) and makes her exhausted and have trouble walking. I’ve been living at home to help take care of her. And it’s been so hard on both of us, and she’s so deeply depressed and sometimes it feels like there’s nothing I can do to help her and I feel so alone sometimes. I don’t know what my point is haha. This video just really touched me is all. So thanks for sharing and helping me feel a little less alone^^b

    5 years ago
  38. Totally with you on this one. I’ve had chronic migraines and periods that last 10-12 days and cramps before, during, and after leading to ~3 weeks of pain each month. My doctor and my mom ( a nurse ) both think that I have fibromyalgia on top of it. I had surgery twice so far, with no help. An exploratory to find out what was wrong ( my right ovary is by my appendix and was stuck with adhesions, causing inflammation ), and then a planned hysterectomy that turned into an appendectomy instead, and removal of the adhesions.
    I’ve been in 24/7 pain pretty much for the last 12-13 years. I know the feeling so much of it being “invisible” and having people not believe you is the hardest thing. And the whole waking up and being depressed over the pain, 100% there with you too. What sucks is that because we wake up so often and pain interrupts the sleep cycles, we don’t get enough sleep. Not enough sleep actually leads to more pain, memory problems, emotional and physical stress, etc. Being called lazy because you appear to sleep “too long”, being accused of being an addict or just lying about the pain ( the WORST ), just.. everything about it is lame and horrible. I also can’t take anything over the counter because it doesn’t do anything at all – except make my stomach upset. I’ve had a prescription for hydrocodone ( Vicodin ) for the last 9 years ( I have a migraine prevention medication that works, after trying 7! ), and I’m hoping that having a hysterectomy will stop the majority of the pain so that I won’t have to take it again. Other than that, I get support from my friends and eat better than I used to. Those are big things that help.

    Also – American healthcare SUCKS. I just got coverage through my state in the middle of last year, and they’re covering pretty much everything so far. I haven’t been able to do anything until then, so it’s been years of just “here, try this pain medication” and not being able to afford anything else. I’m glad it’s finally being taken care of, because I’ve been wanting to start school but I haven’t been able to because of the pain. Not being able to focus, not being able to drive ( because of medication ), and just generally feeling like garbage has hindered all efforts. Until now, woo~ I’ll be starting in April, unless things change between now and then.

    I’m glad you made this video! I don’t have the same condition, but the basic effects on me as a person, the pain, etc are all the same. Pain sisters? Haha. I’m also glad you’re seeing a pain specialist, because that will make your life so much better when you find the right treatment. It sucks trying a hundred different things, but it’ll be worth it in the end.

    5 years ago
  39. jqx

    Thank you for sharing not only your struggles but how you try and overcome them. You guise have helped me get through a lot of miserable days. But you’ve also made a lot of great days even better! So thank you very very very much for that!!!
    You are really amazing and inspirational! ^^
    Sending you happy thoughts and rainbows! And hugs, because snuggles are always nice ^^

    5 years ago
  40. Reading this made me tear up a bit. I can’t even imagine how you deal with this, but I hope you understand that what you and Simon do, make a lot of people like myself happy. It’s great that you are doing something you enjoy, and I imagine (correct me if I’m wrong) that doing what you love, with someone you love makes each day better. I understand that you don’t like to advertise what you’re going through, I’m the same, but thanks for sharing a bit of your struggle with us, I think it can help someone who is going through the same situation, at such a young age.

    5 years ago