Living with Chronic Pain and Ehlers-Danlos Syndrome
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- เผยแพร่เมื่อ 25 มิ.ย. 2024
- This is our first regular video in almost a month and a half. We've been gone for health reasons, but we didn't really explain why. Well, for this week's TL;DR we're going to talk about Martina's EDS, aka Ehlers-Danlos Syndrome, how she lives with Chronic Pain, and what happened over Christmas. But, more importantly, we're going to talk about how Martina copes with living in Chronic Pain, and hopefully you can get a better understanding about us.
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I just noticed that Simon keeps saying WE had a medical issue, WE this, WE that... It's the sweetest thing ever. I might just be a random person on the internetz but I'm glad you guys found eachother. You were clearly meant to be.
I noticed that too! The sweetest thing ever.
+FYTJ Well it is WE once you take that vow, there is no more "I or you" :)
+orckiller91 But so many people don't think that... hence that divorce rate.
@mauia I wouldn't say divorcing is only due to people being selfish in their relationship. Sometimes a marriage just doesn't work out. I personally think, if the couple has tried and can not work things out, that divorcing is the better option rather than forcing 2 people together who are unhappy.. There are many things that can happen that might affect a relationship causing it to result in divorce such as the death of a child, sudden or prolonged financial stress, the loss of a job, serious medical issues, ect. I think to imply that those who have chosen divorce aren't/weren't trying hard enough is a bit ignorant. I know you probably didn't mean to imply that ALL people who divorce are selfish but I just get a little peeved when I see people generalize and (in a sense) demonize things like this. I haven't been through a divorce nor did my parents but I know others who have and sometimes selfless love just isn't enough.
That being said, I agree that Simon and Martina are an incredible example of "relationship goals". They are adorable together.
doki doki 💗
The love you two have for each other is no joke.
I cant even explain it. When Simon talks about Martinas pain he doesnt even say "she suffered", "her pain". it is always "we suffered", "our pain".
it really touches my heart to see how much they really on each other. Simon knows Martinas pain even though it is not his.
rely
i got diagnosed with EDS this week at 23
i don't think i would've ever known if it wasn't for your video
i watched it and something just clicked so i went to see a specialist
thank you
Anyone else rewatching their old vids after the breakup? 😭
musta been a rough breakup tbh.
i wasn't planning to but apparently youtube is evil
I literally went to Korea as a tourists because of their videos. Sad to know the outcome.
I don't have anything to say, but: SIMON STAWSKI, YOU'RE A REAL MAN IF I'VE EVER SEEN ONE! The way you take care of Martina, the way you look at her, the way you talk at her and generally the way you're always there next to her just aspires me to one day be a good husband like you for my wife. And Martina, you're one of the strongest people I've ever seen. I knew about your condition from the draw my life video you did and the couple other times you mentioned it, like when you did the UBEAT interview, but watching this made me realize how hard it must be and how strong you are as a person. I'm saving my prom money for a trip to Korea this May and I swear to God I will find you and I will hug you both so tight that you're both gonna brake (and I don't care how beefy you're gonna be Simon! :D) I love you guise so much.
Seconded that is how a real man behaves. Well done Simon! Martina is so tiny and upbeat its hard to think of her as being in constant pain. I wish them both the best.
Agree with you!
Honestly, Simon Stawski is one of the realest down to earth men I've ever seen in my entire life. The way he talks about Martina brings tears to my eyes.. I always catch myself telling people love isn't real or it is ever changing, and then I remember Simon.... Simon gives me hope for love, hes the kind of guy that reminds me to never settle for less. His devotion to Martina is so unique, I can only hope it exists outside their relationship, and that someone like myself could find a love so compatible. Martina is truly an inspiring person, as much as i love to see the way Simon looks at her, I love that in this video we really got to see how positive a soul Martina has. These two are both a real inspiration in my life, their videos, laughter, and ability to always remain true to themselves no matter how silly or dorky it makes them look, that is really inspiring. I have a really stiff personality, I'm hard to get along with, and I suffer from depression, but at the end of the day its people like Simon and Martina that give me the strength to keep trying to remain true to myself, and never settle for less.
Took the words right out of my mouth
Alyda King same ) Simon and Martina is my hope of true love too
If the two of you ever get divorced then there is no hope for any of us. That was such a beautiful example of a loving supportive relationship. I am envious.
Divorce isn't an option for us. It's not a word, not even a concept. There's nothing that would make us want to leave each other :D
Eat Your Kimchi TToTT #otp4life
Eat Your Kimchi Just shattered my heart with this comment. Such an amazing bond!
Eat Your Kimchi You two are my relationship goal.
Eat Your Kimchi Omg that is so sweet best couple ever!!!!!!
What gets me down is the "invisible" part. No one really believes your pain or know what's actually happening. Friends and family don't understand why some days you are grumpy and snap at them or call you lazy for turning down plans or having a dirty kitchen because the pain is just to much to bare at the moment. My immune system attack my body weakening it, so my joints swell, my spine twist causing disc to bulge and crumb, and some days I can stand up with someone helping me. Luckily I do have remission periods where I'm okay. This week has been one of those weeks where every movement makes me cry in pain. Your videos have been my ultimate source of entertainment! You've made my week bearable and my husband loved seeing me laugh (he even listened to me try and explain the yummy food you eat) 😊 I have a very high pain tolerance, I've dealt with this most of my life, and I don't usually share but I just wanted to say thanks for clearing my tears!
hwaiting! 💪🏼🌞
I know this is from a long time ago...but I hope u know you're not alone and I feel the same way, I couldnt - not say something. I hope you're doing better.
💗💗💗💗💗
the emotion in simon's eyes while martina was talking, that is love
LISTEN. If Crayon Pop can run around in knee pads, elbow pads, wrist guards, a helmet, and a skirt, *and* still look cute, then so can you.
This is a very good point. Paired well with your... is that Hyoyeon? giving a thumbs up :D
Very true.
Sooo true 👍👍
Yess!
elucified Yes, it's the Dancing Queen. Thanks lol
I really love how you can see Simon worrying about Martina so much, especially when she's being comical about the situation but he really cares about her a lot. It's really sweet ❤
Who says love isn't a tangible thing? He's drenched in it! Practically drowning in the stuff.
Nice catch....I re-watched some of it to see what you saw. Thanks. G.
I saw this the day it came out. Now here I am years later rewatching after being diagnosed today with the same thing. I hope you guys are still managing and building that ladder.
Nope they are separated and it's bad...
my daughter is four and I am thirty,we were both just diagnosed with EDS ,Chiari, ibs,scoliosis,etc...all caused by EDS. I did a genetic study, found out I'm part Japanese to my surprise,my daughter is fifty percent Japanese as her father is. I came across your channel with my daughter to help us learn about Japan while laughing to ease our pain,i remember thinking you were an EDSer before finding this video even,based off your legs when you sit, the look on your face when you move,i know that chronic pain warrior face!my daughters name is Klover-Raine,and we have found hope daily with you 🤘🤘🤘
On a more serious note, we're going to talk more about Martina's EDS, what happened over Christmas, and what it's like living with Chronic Pain.
thank you Martina and Simon for sharing this with everyone you are truly and inspiration to everyone epically you Martina you are inspiring me everyday and you are truly an inspiration to a lot of women and girls around the world and I am happy that you shared this with us and that you let us be a part of what you are going on and even though we are worlds apart and might never meet who knows? just know that all your fans including me are here supporting you. and that you have a whole lot of people backing you up and supporting you 100%
I'm so touched...please take care S&M 😘😘😘
Eunice Wong We're working on it. Many of our videos have subs, and hopefully many more will in the future :D
Thanks for sharing your experiences. We all struggle with something, and it gets hard sometimes. But seeing how you do not let your struggle weigh you down is really is inspiring! It makes me feel like I can overcome my own hardships and keep a positive attitude. I love you guys!
Well, mission accomplished, you guise: I just wanna hug Martina and congratulate Simon on staying strong for his lovely wife. I can't even imagine what it's like to have chronic pain. My bf has really awful chronic neurodermitis and thus has a high pain threshold as well. So I can punch him all I want, he doesn't care ;D It's awesome that you shared this with us (hopefully people will stop posting mean comments bc of not enough videos etc) and I hope that you find the right medication for you, Martina :-) Simon, stay strong! It's very important that Martina has someone to lean on at tough times. When I went through therapy, my bf stayed with me, no matter how much I cussed at him and it helped me getting better much faster that way. Love is a very good medicine ^_^ but since you're together for so long already, you guise must know all this. Just know that I admire you both
It is so inspiring to see a couple so caring towards each other. It is amazing you two formed such a trusting relationship, much happiness to you both.
Thank you!
but he is gay so how are they a couple? im kind pf confused.
mage13011988 he's not gay.....
Yes he is! ITs clear lol Im gay and i cant SOOO tell!!!! He can live his life the way he wants so its his choice to deny himself but not saying something out loud doesnt make it not true! He is gay weather he says it outloud or not! He knows the truth!
I must say, Martina.. You are a VERY lucky lady to have found such an understanding, supporting and loving husband. I hope you will live happily ever after together.
That being said I very much agree with you guys on the strategy of "the small victories". As a survivor of several suicide attempts and chronic depression anxiety and insomnia that those "small victories" can become very big. But this is actually a very hard thing to learn. Because in the beginning you feel sort of worthless and weak for it.. You get these abusive thoughts in the beginning like "Oh, you ONLY managed to get out of bed to paint a picture today? Yay you, dumdum!" but you have to stick to it, because once you get over that stage and actually accept and appreciate the "small victories" for what they are, and acknowledge that "Okay, I only managed to get up and paint a picture today, BUT I could have just stayed in bed wallowing, but instead I got up and did SOMETHING." That's when you can start healing and move on to the bigger victories.
To all you others suffering from an "unseen illness", be it mental or physical, remember that you are not alone. You should not be ashamed. This is not your fault. Keep going. Just KEEP GOING, because if you give up and give in, you will NEVER heal. If you give up your illness has won, and that is a victory no illness deserves. Thank you.
I'm surprised no one has created nicer braces for people to wear. I have Hyper Mobility Syndrome and sometimes have to wear braces or wraps around my joints. It'd be nice to have some bright pink or multi coloured ones to cheer me up. Eat Your Kimchi could maybe come out with their own brand! I'd kill to have some with Spudgy and Meemers on them. :)
You know, we would LOVE to make good looking braces. Martina had to buy a new one yesterday, and it looks like the eighties barfed on a paperbag fannypack. It's terrible. Why aren't there any funky looking ones yet? We need to find a way to make them!
+Simon and Martina Oh jeez. Thankfully the ones available in Scotland are either black or blue in colour. Still really depressing! I want some X-Men looking braces so I look like I have mutant powers. The power of being bendy with the ability to trip over thin air.... *sigh*
+Simon and Martina Have you looked into 3D printing your own?
+Simon and Martina My friend's mother has EDS and she prints a lot of her own braces/devices using her office's 3D printer. Maybe you guys could look into that?
Imagine some with a metallic or glittery finish for special occasions
Martina is absolutely amazing, and omg Simon is like the most understanding and caring husband I have seen.
(and is it just me that wants to try and find knee braces just to deco some out in a super cute way for Martina?...Might just be me.)
YEES!
OMG YES!!! AID MONEY FOR CUTE BRACES FOR MARTINA!! :D DONATE TODAY! XD
I was thinking the same thing. If Hello Kitty was on her knee brace she'd wear it every day. Or Loki, or Sailor Moon.
Hello kitty/sailor moon or just something cute in general! (like, I don't know if she has those fabric ones or some other kind, but those could definitely be made way cuter!)
Thr only problem is that I bet she has custom shaped knee braces to fit her leg exactly right... my dad did after his 3rd knee surgery.
It's strange for me (a chronic pain patient with something ppl can't see) to come across this video. I'm having a terrible time right now because my chronic pain Dr is retiring. I have a treatment that works but finding a Dr who's specialty is chronic pain has been a total nightmare. There are so few of them and they're far away. Like you I don't like to talk about it. Ive had lots of experience with terrible withdrawl too. I wish I had good tips about how to be positive. My boyfriend just gave me a lecture because I collect tamagotchis. But for me kawaii things really cheer me up. I guess that kinda is a tip lol. Cute, happy bright things make me feel better. :-)
P.s. I'm sending you good vibes and happy thoughts from snowy Ontario. I wrote that here instead because I thought my comment may be too long and get cut off. Thank you for sharing with us. I'm having such a hard time with this its so good to know I'm not alone.
I know it sucks to have to go to a new doctor but getting a referral from your retiring doctor might help. He may have some colleagues that could help you. And your tip is a good one, surround yourself with things that make you happy and feel better.
Finding doctors can be so hard and it can really make you feel down, but just keep pushing through and you will come out the other side with a new doctor that may be even better and that will help you every day. Fighting!!
Thank you both so much! My Dr is trying to help but it's not easy as so many doctors here aren't accepting patients or are very far away. There just aren't many pain doctors here. Thank you for the words of support. I really needed them this morning. :-) hugs to all.
I accidentally stumbled across this video and I am really happy to have watched this. I have almost been up all night, because I suffer from chronic pain, and have been since I was 18 years old. I went to many doctors but many of them claimed there was nothing wrong with me because it can't be seen on the outside. I still don't have a diagnose even though my joints are always painful, I never feel rested and I sometimes can't go anywhere because the pain is so bad I throw up. I know this is an old video, but I have seen lots of your videos throughout the years and you always manage to bring happiness.
Many days I find myself with trouble of getting out of bed, but your advice on how to stay positive really helps. Thank you for being inspiring, keep fighting, and I will too.
+Joffelicious hi, I am 28 and was diagnosed with fibromyalgia at age 14 due to my pain being so bad that it was hard for me to breath (due to pain in my rib cage) , I hope they will find out what is wrong with you so you know what you can do to reduce the pain. but so you don't over exert yourself check out something called "the spoon theory" it helped me a lot (basically, healthy people have unlimited spoons, and people with chronic pain have few spoons, each spoon is used to do things over the day, like get dressed costs one spoon, make yourself a meal costs one spoon, sometimes I have 4 spoons, and sometimes I have 15 spoons for the day.. )
+sarabjarnveig87 omg thank you so much for answering me. Life feels hard sometimes and I have been looking for ways to handle it! I will definitely check the spoon theory out, I am sure if it helps you, it will help me!! I am sad you had to live with fibro since you were 14. But you are a very strong person and I wish you all the best!
I absolutely understand this thought process of fighting any every day battle, and I always just strive to endure BETTER. HAPPIER. STRONGER. Right now things are particularly difficult, and truly it's one step forward, 2 back but you just keep at it. My victories currently are not using a walker, where 2 months ago it was walking 3 miles. But, it's in these times that we hold tight, fight hard, and find small steady miracles. Thank you for sharing, and I completely understand not wanting to give these diseases even one second of time more than they already seemingly rob us of.
+Little Zebra i understand what you're going through. And adults who has never experienced chronic fatigue and pain will have a trouble understanding it. :/ and I know that can make you feel very lonely, but just know that you're not! There are others out there who experience the same thing and we can have each others back! I hope you can learn methods to deal with your pain that will work a bit better for you. For me it's been a long process, almost 7 years, and I am still not sure how to do it, but I keep up faith it will come some day!
If your joint are swelling, there is a chance you might have arthritis. It's a lot more common in teens and kids than most people think, and sometimes doctors don't know why we'll have it. I actually have arthritis (I'm 18 and I was diagnosed at 11 months old) so I know a lot about the subject. When I read what you wrote, it reminded me of arthritis. If your doctor has already ruled out arthritis, then I'm sorry I couldn't help. However, if it was never mentioned as an option, perhaps you should go see a rheumatologist.
I hope you find out what it is soon. Good luck.
Simon, your dedication and the love you show your wife is really touching. The lengths you are willing to go to help her through this is amazing. Hope Japan is amazing and your pain is lessened Martina.
I hope Martina got her cupcake in the end. She deserves it. ^^
She got it. We got cupcakes for the studio after filming this :D
I don't have any physical disability, but I have Anxiety Disorder, and sometimes it's really hard to keep going, because I'm often unable to do simple things, and it's really hard to meet new people and really connect, but what really gets me down is thinking of all the opportunities I'm not taking and seeing people move on with their lives will I'm stuck in the same place because I'm too scared. But as you said, it's all about small victories! Every time you do a little thing that scares you, and you realize it's okay, you can do it, it feels so good! And no matter if your victory is going to a big party or simply buying a sandwich, all that matters is that you did it! And next time you have to go buy a sandwich, it'll be easier, and one day you won't even think about it anymore, and you'll be able to do more things more easily, until you can go to that big party that you were so scared of! You just have to move at your own pace and celebrate every little victory, no matter how insignificant it may sound :)
I feel you! I have anxiety and PTSD and it is really hard to just go out sometimes and meet people and do normal things that people our age do. It's a struggle everyday but you have to move on and be strong and fight! ^-^ good luck on your journey, even though we don't know each other it's like we're on a journey together! Was that creepy? Kinda? Yeah. :c
But seriously, fighting! :')
Haha no it's not creepy, it's good to be able to share experiences with people going through similar things, even just quickly like that :) Thank you, and good luck to you! :D
And yet, I don't have the courage to put my face in an icon despite not having an anxiety disorder (that I'm aware of).
I have a question. How do you get diagnosed with Anxiety Disorder? because I've looked into it on the anxiety disorder association website and I'm like 90% sure I have anxiety disorder. I just don't know how to be sure...I get unnaturally scared when I'm forced to be around people, and I don't do things because I don't want to go outside. the only people I am comfortable around are my friends and my parents. I can't even be comfortable around my cousins or my aunts and uncles.
xXJiJohiXx The only way you get "diagnosed" is to speak with a psychiatrist. A psychiatric therapist or counselor may listen to your concerns and provide some ideas of what you may have, but only a psychiatrist can diagnose. It's alright to research about a condition or disorder and find similarities between yourself and the attributes/symptoms of a mental or emotional disorder, but it's "extremely" important to not self diagnose. Independent research may help you ask the right questions when you speak with a psychiatric professional. The individual symptoms associated to any disorder may be experienced by "anyone", so while it may be an indicator, its not a determining factor. Even a mentally and emotionally healthy person may sometimes experience the symptoms associated to some mental disorders. It's the combination of "all" the very specific criterias of a disorder that determines if you have a mental disorder. Sometimes you may self diagnose yourself with one thing but a professional will determine that you are a combination of other mental disorders. Don't be alarmed, because many mental disorders are connected and influence the condition of one another. I respect your inquiry about diagnosis and anxiety disorders because open discussion is important for removing the stigma, society has on mental health problems.
Y'all are the best TH-cam couple ever. You're so supportive of each other and your nasties; it shows in everything y'all do.
We're very thankful to our audience. We couldn't do what we do without them, and we'll never take that for granted :)
Polish subtitles are now up on this video, thanks to a really lovely person who made them. You rock!
I have psoriasis. I try to ignore it but, it covers most of my body. My hands, a bit on my face, legs, arms, back and stomach. It hurts to shower, go swimming, do the dishes or washing my hands regularly. My skin gets so dry sometimes that I just don't wanna move. Along with the physical appearance of psoriasis... I also have chronic pain in my joints. I have gained weight because of the steroids I have take in the past... And no one acknowledges my struggle. I'm also depressed. I don't have a husband or anything. I'm looking for work, barely learning how to drive. And, I still live with my mom. She has started a new life and wants me out of here as soon possible. . But, you know what? I'm over all happy. I have the greatest best friend and I'm starting to take pride in my appearance. I don't let the depression suck me in. Supernatural, Doctor Who, HIM(band), classic rock music, reading, writing, arts and crafts along with my little siblings and niblings; have helped me push past it. Another thing? You guys. I really do admire and love you guys. Wishing y'all the best!
Awww, thanks!
www.amazon.com/Healing-Psoriasis-The-Natural-Alternative/dp/0470267267
OMG Vanessa M, i suffer from psoriasis and dermatitis too!! I cried when i read your comment. People don't understand how painful it its just to wash your own hair or do the dishes. I used to play the piano, but stopped because it would hurt to play or i would be to embarrassed to play ( i have dermatitis on most of my fingers). Work is hard and being around people who don't know about my condition is hard. But in the end i have to remind my self that while my hands are not perfect i at-least have some! Thanks so much for writing about you life, much love XOXOXO
To be honest, I started crying as I wrote my comment. People think it's just dry skin when it's so much more. As a kid I was too embarrassed to even play outside, wear short sleeves(I do now, I live in a frickin' desert!). But, we have to look at the bright side! Because, even if we are dealing with these ailments at least we are alive. I hope you will pick up piano lessons again. The piano is such a beautiful instrument! Thanks for reading and taking the time to reply! Good luck, girl! :) Sending some love back atcha. XOXOXO
Vanessa M I am sure there are days like you say that it gets to you. To survive a person needs to really not "stay" there all the time. Finding the things that bring joy into your life and pull you out of that bad place helps you to survive. Many times before I got married, the cats giving me the smoosh of love in the morning was the only thing that got me out of bed.
I'm sorry you suffer so much, Martina. And, Simon, I am sorry that you feel helpless when you just wanna make it all better. I have fibromyalgia (it is in remission, because pregnancy does that sometimes), but after having it since age 17, I can agree with many things you said like how tylenol is useless and how getting out of bed sucks. I do have to rest a lot, but what I try to do is hang on to the little things like how awesome dinner will be or how today I will go to the park. It makes my life feel more meaningful. Like you, I also have a supportive husband who helps me a lot. I don't know how I'd live without him. I also think it's horribly sweet that Simon is working out to help pick you up. Your such a fantastic, lovely person. Thanks for not letting the disease get you down. We love you. 💛
Also, thanks for sharing. Hearing that you go through the crap that I go through makes me feel not so alone.
Hey Cassandra, my Fibromyalgia went into remission during my pregnancy as well (lucky us!) In fact my son is soon to be 5 and I've only started to have pain again in just the last 2 years, I think breastfeeding helped perhaps the hormones. Glad yours is in remission, I hear from so many people how being pregnant has them bed-ridden.
i think i might have fibromyalgia. Can you give me tips on figuring out if thats whats going on?
dissscofish stretching and low impact exercise helps with Fibro. You may feel a lot of fatigue and achy all of the time. Take your time when doing chores around the house, don't do too much or you might be in bed the next day. I suffer from Fibro as well and was diagnosed when I was 19. Now I'm 27, married and have a 8 month old baby. Being a mom takes a lot of energy out of me so I try not to over do it.
Mikaela Otavalo alright thanks. i'm not sure if i actually have it yet. i'm gonna have to go to the doctor soon
Your lucky to have a partner who cares so much martina. I have EDS as well as other diagnoses and am in pain constantly but my partner couldn't care less. It's depressing.
Also I dislocate my knee caps. 21 times so far. It's awful, worst pain ever!
Sweetheart, I pray you find someone who cares as much about your pain as much as Simon does for Martina's. You deserve all the love and care in the world. I hope this comment makes your day a little better. Love all the way from Bangladesh
That doesn't sound very good :/ you should try to find a partner that cares about you more.
Louise Fowler leave them
You deserve better , there is better out there for you. Don't waste your time on someone who doesn't treat you the way you deserve to be treated . Life is so short . Your partner sounds selfish and without empathy. I am sending you every blessing and really hope you find your soulmate x
I also have EDS III. My husband and I went to Comedy Bang Bang live last night. It was their second show of the day and started at 10pm. Now I am only 29 but starting my evening at 10pm feels crazy late LOL. Anyways, I had overdone it during the day (making Korean food actually) and when it was time to leave I was feeling stiff and achy. I took 4 ibuprofen and hobbled out the door. We ended up walking a mile I think to the theater from the T stop, so by the time we got to the venue I was fighting back tears. To make matters worse, we were up in the nosebleed section and had to climb a never ending set of stairs (I think 3 flights) to get to our seats. I seriously wanted to just sit down and cry, but I knew once the show got started it was at least an hour and a half of non-stop side splitting laughter. This was my first experience of having (non-flexible) plans that conflicted with how my body felt. I usually end up staying home, but I'm glad I pushed through and had that amazing experience and made a new memory with my husband. Today I've been taking it easy as I have to be at work in the morning. Your videos brighten my day during tough times. Seeing someone with similar issues as me living to the fullest (when you can) really helps me push through. So thank you.... really, thank you.
Gemma Saint Hi! I live in America. I would love to talk to someone also. Can you message privately through TH-cam? I'm not great with social media LOL.
Carmen C I know this is late, but I also have eds and it would be neat to make some friends that know what I'm going through!
Olivia McCall Hello! It's never too late! I've sent you a message.
I'm 32 and up until 3 months ago I weighed 472lbs. I got to a point where my body hurt just lying down and I started having difficulty breathing, it was frightening. I finally reached out to friends and family to help keep myself alive. Through their advice I was able to change my eating habits and find something I have a passion for: dancing!! With Minzy as my spirit animal I've danced myself 75lbs lighter these past three months!
On the days that I was down, I had my people that I could talk to and videos that I could watch to pull me out of my slump! (Your WTF with Amber sure helped!) I'm still heavy, it's still hard, but I don't see myself stopping anytime soon! Thank you for sharing your story, Martina! I've been part of your audience for a few years now and I am so grateful to you guys. Let's support each and continue to share our positivity!! 🙌🙌🙌🙌
funny you should mention dancing, I started doing 5 minute "dance breaks" after hearing the idea from an EYK video and it was SO much fun! I couldn't care less about weight loss personally but it is a great way to make exercise joyful!
I have that exact disorder. There's like no one else where I live. I'm so glad that I can finally relate to someone thank you so much.
Good luck guys. I just saw your video about moving to Japan and i find Simon to be very sensitive about your condition Martina. I stuggle with a leukemia that has come back 2 years after having it "cured" and sometimes i see that same look in my boyfriend's eyes that Simon has. Its kinda sad and comforting at the same time because i know he cares. I hope u guys take care of each other and keep doing what you love like traveling. If it wont stop both of you to go to japan, it sure wont stop me from going too eventually. (Sorry for english mistakes, i'm (french) Canadian) :)
I'm sorry about your leukemia. but I hope everything works out and that you'll be free of it! much luck and best wishes to you! :D
I am writing this here because it is 3 yrs old and NO ONE will see it. I have a couple of conditions and I have for the most part given up. I don't leave my house. I dont allow people to come and visit me. I get everything I need delivered and I have stopped going to see the dr. I love your videos and I enjoy watching them. I feel like when I watch them because you are talking to the camera it to me because I am the audience. I am glad you can be fruitful. I, every once in while think, I should do more and I got my mail during the day today. I know it is weird but I feel like it is a step because I was only getting my mail in the night so I was sure no one would see me. I am not trying to sound weird or pitiful I just kind of wanted to write it down once. thanks
Don’t worry, we saw it :)
I am sorry I didnt want to bother you with it. I love your positive attitude Martina
Big thank you to Mariposa Nudrath for putting English subs on this video. Thank you :D
Thank you so much for the subtitles too!!
Candice Payne sklbb
..c
+b juardo Unless acupuncture can fix someones DNA I seriously doubt it's gonna help, that's like asking someone with Down Syndrome if they've tried acupuncture. EDS is a genetic, progressive and rare disease. Lots of doctors don't even know what Ehlers Danlos Syndrome is and even if they've heard of it they don't truly "get it", and to say it's misunderstood by the general public would be the understatement of the century
Everyone is different and what might help to control pain in one person will not work in another, for some heat or cold, a chiropractor and even acupuncture can help.
Hi, I suffer from depression and chronic pelvic pain and what I do to smile is... WATCH TH-cam VIDEOS. I have just discovered your channel (i know! how come!) and It made me smile. Thanks so much for your videos and i will keep watching. It is cool to see some with spanish subtitles. I am from Peru. Hope you guys can come to south america some day :)
Gurl me too! Stay strong
Simon, you are a compassionate and wonderful person. The way that you talk about Martina, we can tell that you really love her, and it is the most beautiful thing even.
Martina, I feel your chronic pain. I have SLE, and the fatigue and joint pain kills. Be brave! You are such an inspiration !!
I loved meeting you guys in Seattle, you have the greatest energies evarrrr!
+Captain Mana Rahl Tramadol hurt my stomach, and was giving me the *insert EatYourKimchi goat noise of profanity here*!! That stuff is HELL.
Spanish subtitles are now up as well! Thank you to the kind person who made them :D
How can I upload subs? wanting to add Korean as well!
+KA YOUNG Yoo If you click the little gear next to the CC button and click "Subtitles/CC" at the very top should be something that says "Add Subtitles/CC". From there you can add the subtitles! ^_^
+Simon and Martina you are welcome! 😃 Lots of hugs and kisses from Cancún México 💕
+Simon and Martina Martina you are so strong and so beautiful, on the outside and even your heart just shines through. You are an inspiration. Thank you for simply existing and being such a warrior everyday!
+Simon and Martina Smoking weed will help you get rid of some of the pain. You can get medical since you have EDS
I don't comment very often on youtube, but I felt very inclined to let you guys know that you just gained a viewer :) keep up the positive vibes!
Thanks Greg!
I'm recovering from a stroke (Brain Injury) and everyday is a struggle. What helps me is watching comedies. When I am laughing hysterically I forget all about my stroke. Thanks so much for being so open about your illness.
I know this video is older and you probably won't see this comment but thank you so much for taking about this. I have EDS and I've been having a really painful day today and feeling very torn down and lost. I went looking for EDS videos to find a way to cope today and I was really surprised to see yours show up. I've watched quite a few of your videos before and I had no idea that you have EDS. I really enjoy all your videos and its exactly what I needed to see that you can go through what I go through and still have such a creative outlet. I'm really happy to know that you can find ways to keep creating. Thank you ❤️
+Violet Leandra of course we saw this comment! I'm glad our videos can help.
Simon and Martina I don't know why this just made me tear up :') it's nice to feel like I'm not alone. Much love!
Violet! I'm going to get tested for EDS Feb 28th and in the midst of my research and gathering info from my own medical history I stumbled across this miracle of a video. I'm in the same boat with you and I've watched TONS of Simon and Martina vids in the past (fell away from it after having twins, lol) and have always enjoyed their dynamic and positive energy. VL you are not alone and Martina, thank you so much for surprising the crap out of me and reinforcing that we are not alone! Thank goodness for the internets and how we can find each other. Danny, interestingly weed makes my body pain SOOOO much worse (anyone else have that experience?). Anywhoozles, you all are awesome and this video and thread lighten my achy little heart.
Love and Learning,
Shelby
Shelby Harmon good luck with your diagnosis!
Italian subtitles now up, too! Thank you to whoever did them, kind stranger!
I really like your attitude during the video. Like, I may misinterpret this, but it's like "even though I have EDS, I'm not letting it hold me back or define who I am." I think that's super super important when it comes to these sort of chronic illnesses and pains, because it can be so easy to let them dictate your life and determine who you are as an individual. That takes a lot of strength to do.
I'm so glad that my enjoyment of your videos is a help. You keep creating and I'll keep watching. We'll all be the better for it.
Thank you :D
Eat Your Kimchi I actually have sickle cell anemia disease and a really bad heart murmur. Usually people see these as simple manageable diseases but with sickle cell what happens sometimes from either bad nutrition(i'm a college student on the ramen diet :P) or lack of iron and oxygen is that my blood thickens to the point where it becomes blocked in a valve or a blood vessel and the pain is unimaginable. the only way I can explain this is think of how it would feel if you could feel your organs getting cut off from blood flow and then slowly shutting down. This is called a crisis. The only thing that get's me through is the support from my family and watching you guys :)
shocked me for what you are going through because you are always so cheerful and just like anybody else that i don't notice anything. i feel sad yet really admire you for being so positive and productive even under tough situation.
I'm super new to your channel, and the reason I subscribed was because of your infectious attitudes toward life. You both seem so excited and positive, I never would've known Martina was dealing with something like this. What a strong, wonderful human. Simon, what a supportive and uplifting husband. You guys are literally goals. Thanks for putting goodness into the world and being so inspiring and resilient in the face of adversity. I love seeing new videos from you guys in my sub box - it makes my day. Much love from Texas!
+MsSydneyShaw welcome to our channel! We do our best to keep a positive perspective on life. Some days it's hard. But we gotta keep trying :)
thank you!! keep it up, lovelies!
invisible disabilities SUCK (as do visible ones). Best thing i ever heard someone say, is you just get up and keep going..because truly..life is there for us to live, so we just need to keep going!
I don't have a physical disability, but three mental ones, asbergers, depression and social fobia. I also have adhd, but that's easier to adjust to. I know that there is a huge difference between mental and physical disabilities but I sort of handle them in the same kind of way. Because of social fobia, I have to constantly going out of my comfort zone, and I skip eating, going to school and so on, just because I can't meet people. And yet, I spend most of my time working with politics. It's one of the best parts of my day.
So I sort of understand how you feel and I understand the feeling of not wanting pity.
Martina, you are amazingly funny, strong and someone I admire alot. I've known about your problems since the draw my life (and I spent about three hours looking things up on what it was) and ever since you have been one of my main reasons to get out of bed. If you can continue your life with this huge amount of pain you feel all the time, I can try and get to the store to buy food. So I just want to thank you, for making my own life better.
Hugs from Aki in Sweden!
Also, thank you Simon for not leaving her, I know a few people with chronic pain, and most of them have been left by there partners because it is so hard to live with someone you love who is always in pain.
I guess you could include mental illness in "invisible disability." It fits the definition.
I also find it interesting that you like politics. I feel strongly about politics too, but I feel like I won't make a change especially with the old, stuck in their ways, won't retire until they die politicians still around.
GingerLadies Yeah, but when it comes to politics I feel like "If I don't do it then who will?" If you want to reform something you have to work right? Also, in Sweden it's quite easy to change things because of how our political system is built. I don't know where you're from but I know that it's quite hard to be a part of the political process as a young adult in alot of countries
It's an invisible disability
KidTheFail AHHH SWEDEN! THE LAND OF PEWDIEPIE!!!!
Yeah. I live in the US and getting into politics here is like jumping into a shark tank...
Korean subtitles now up! Thank you for taking the time to make them, kind stranger :D
It's my little expression of gratitude toward you guys. your videos have always made me laugh through my hard times so thank YOU!
I'm glad our videos can help. You're very kind for doing these subtitles. Thank you :)
+Simon and Martina thank you for the fun and educational stuff you give! love you all! spudgy day to everyone!
+Simon and Martina thank you for the fun and educational stuff you give! love you all! spudgy day to everyone!
+Simon and Martina thank you for the fun and educational stuff you give! love you all! spudgy day to everyone!
Martina is truly an inspiration to me. I have tinnitus and hearing loss because of firework accident that happened a few years ago. I don't know if it's actually classified as an invisible illness, but it really is. Even though I look fine, I constantly hear this high pitched ringing that no one else can hear. It's distracting when I am trying to work, it keeps me awake at night, and makes me feel depressed and have anxiety. But you have inspired me to move passed all that and to not let this hold me back. Thank you!
I just want to say thank you Simon and Martina (and the whole EYK crew!). Thank you for always uploading even though you don't feel 100%. If you ever feel tired or sick, please rest. Health is always number 1. ♡
Just passed by to say that SIMON IS THE ABSOLUTE BEST!
Watching TH-cam videos helps me cope throughout the day
I have the same exact condition! I love how you explained this in a way that really helps people who don't have this. I completely understand not having people believe you... that is by far the hardest part for me. THANKS!
+Rebekah Rudolph I'm glad you liked it!
Wow, I feel so ashamed now for every moment in my life when I was too lazy to get up and do something fruitful in my life.. which is most of my days. Martina, you are my hero and role model for your bravery, strengh and the way you take your life and sqeeze all the amazingness out of it despite all the pain.
And may I also say that you are a lucky lady to have Simon by your side. It probably would have been so much harder to cope with that condition alone.
I cheer you both, wish you all the best and gosh, I haven't been that moved for a very long time.
I have major depressive disorder, and sometimes, all you want to do is sleep. Like go to sleep and never wake up. And because you're sad. Just...because you don't want to do anything else. I think that's the biggest misconception about depression. It isn't sadness. It's just exhaustion.
So for me, I look to the next day. And I remind myself of some of my happiest moments and remind myself that I am able to feel that way, too. All things pass. I can get through every bout, no matter what. :)
I have it too, often I can sleep more than three times a day , it's so exhausting, because even though you are sleeping more, you dont feel fresh when you wake up, and when you wake up, and your brain is active again, the depression comes back soon and it hurts my mind like hell
I have EDS too! I understand what you mean when you say you don't want to constantly talk about it and you want to focus on more positive things. every day is a struggle for me to stay positive but I am always thankful I am the only person in my family who has it because I couldn't stand to see them go through what I go through daily. so that keeps me going. I wasn't diagnosed until I was 7 because no one had even heard of EDS but now I'm so thankful there are so many support groups and so many people who talk about it and spread the word like you. my goal is to one day not have anyone ask "what's EDS?" because people are aware of it more
Thank you for your transparency. The back story just makes me love your videos even more. 💗💗💗Just warms my heart.
I have relly bad arthritis in like 10 different joints in my body, and I'm in a super similar situation to you Martina where I do the small victories thing! This morning when my hands hurt too bad to do anything I said I'm going to go online and find the best EYK videos to make me laugh while I try to see if I have enough in me to keep going about my day. Thank you so much for making this video, invisible disability EYK squad go!
Arthritis sucks tbh....I have a medical record of getting it on my legs 12-13 years ago and I have no f-ing idea how I even got it,but somehow got cured by eating a burger lol
Nice to see that your so positive! My mom has very bad arthritis in her knees, to the point she used to need a cane sometimes. She went to her doctor and has found that cortisone shots in her knee joints help lessen the pain for a good few months. I don't know if you have tried them but they could help if it ever starts to get to painful for you.
When I have low times I like to talk to my best friend and then write stories with her, or watch funny youtube videos, or try to just get out of my house and do something. I find the longer i stay in one place not doing anything for an extended period of time just makes it worse. Also cooking and baking makes me feel better as well!
Great advice on getting out of the house. Even going to walks or reading in a coffee shop helps me. I also turn to baking and cooking which is great for Simon hahahha!
Eat Your Kimchi : O
Ooooh my gosh, I never thought you would actually reply to me! I feel like I'm talking to a celebrity! I love you guys and you two always make me laugh! I'm so sorry you've been going through rough times!
One of my favorite things to bake lately is chocolate chip cookies with cheesecake inside, or cookies with chocolate chips that have caramel inside of them!
*has been fangirling it out for the past 10 minutes when I saw the reply* haha!
This is just so inspiring and I myself feel so related to the way Martina is dealing with her own pain because I exactly do it in the same way, I feel like talking about my pain will only limits me and make me think about it more and thinking more about it won't even solve it, it's really inspiring and it's just amazing how much Simon is so caring and loving
I just love them so much, and I look up to Martina so much, I take her mentality about life and try to apply it to mine everyday. I've watched this video a bunch of times. Thank you for always cheering us up!
OMG Thank you!!!!! I have eds III. I love it when famous people can do stuff like. You made me cry when I saw this! Simon, I give you so much respect that you understand and will go through this with her. You are amazing! You both are so amazing by doing this!!
Thank you for this video. Seriously. I hate that these things exist, but it makes me feel a lot better knowing there are others who are in the same boat. After years of testing (I'm almost 20) doctors decided I have IBS. I also have emetophobia (fear of vomiting). So anytime I hurt due the the supposed IBS, I feel nauseous, which in turn makes me anxious, which worsens the IBS symptoms. There are days when I'm totally fine and I can eat and do whatever I want. But the bad days SUCK. I struggle leaving my house. I don't really hang out with my best friends anymore unless my sister is with me. I won't go out and do the things I want to do because I'm scared all my time will be spent in the bathroom. That being said, however, I still push myself everyday to look past it. I'm a Christian, so I rely heavily on God to pull me through, which in most cases He does. Seeing the way you handle yourself, Martina, just makes me smile. I really respect how strong of a gal you are lol I hope that on days I'm really struggling, I'll remember how you deal with your illness, and I'll get over myself. I love y'all so freakin much!
You should try Florajen3. It's a very good probiotic supplement that you can find at most pharmacies including Target. Ever since I started taking it my IBS has been much more mild and tolerable. Practicing yoga really helps too.
OMG! You have IBS AND you're afraid of vomiting! SAMESIES!
.....sorry, I just got realllly excited. I've managed to control my IBS with probiotics and lifestyle changes (I don't think I have it nearly as bad as many people, though) but the vomiting thing is something that nobody relates with me on. If I feel the urge to vomit, I will fight it (for up to 6 hours once). I never drink too much alcohol because I don't want to feel nauseated and I got food poisoning once and threw up 5 times in one night and I got so anxious and upset that I triggered my IBS.
If I ever ingested poison and they said I needed to induce vomiting to survive, I would probably die. Because there is no way I could ever be one of those crazy people who can just shove their fingers down their throat, even if my life depended on it.
Forgive if I seem rude and ignorant, but how is vomiting and being nauseous involved with this illness? Google is not helpful enough, it seems. The symptoms that were listed were: Abdominal pain or cramping, a bloated feeling, gas, Diarrhea or constipation - sometimes alternating bouts of constipation and diarrhea, and mucus in the stool among other things. But, what would cause someone with IBS to want to vomit?
Kai Chizuru I sometimes feel a bit nauseated on the bad days but it's not really a problem for me personally. I don't think I have as severe a case as many others, so maybe others experience nausea a lot more often but, as far as I know, vomiting is not a symptom of IBS.
It's just that if you're nauseated for some other unrelated reason (drinking too much, bad food, etc) AND you're terrified of puking, it can then bother your IBS because stress/anxiety is one of the biggest triggers.
Koru Scott Oh, I see. Thank you for explaining it to me.
I'm so glad you two are so positive and optimistic, it's infectious!
Back in high school I would always watch your videos when I couldn't sleep or felt kinda anxious or down. It makes me so happy that these videos do as much for you guys as it does for me :)
Thank you Martina, I really think this video came out at a perfect time. I caught a bad cold (I work at a homeless shelter, and the germs are supercharged there), and I have had chronic back pain for about 2 years. I've been to the physical therapist many times and all the doctors keep telling me that it's nothing to worry about, but it just keeps getting worse and worse. My shoulders click and grind a lot, so it can get pretty painful and concerning. On top of everything, my cat slept on top of me last night, so I woke up many times from pain last night because she contorted my back with her weight. I was so tired today, but I went through everything, even though I just wanted to stay home. It's frustrating when I see other people who are also in their early 20s doing whatever exercises and activities they want, while I struggle with my back. People don't understand when they make judgements like, "How come you're sitting so proper, loosen up," or "why are you being so lazy? Take the stairs!" I want to say that I'm feeling a lot better after you've expressed all the things I felt today. I know tomorrow will be an awesome day and that the pain isn't going to stop me from doing what I'm passionate about.
Have you found the source of your back pain? If not do some research on Ankylosing Spondylitis. Early treatment can help with this even though there is no actual cure for it. For some reason doctors rarely think to test for this.
No, I haven't. My past attempts with the doctors have been negative and I always felt dismissed and somehow end up convinced that my pain isn't as bad as I originally thought.
However, I think I've worked up enough courage to advocate for myself, this time. I really want to get some scans and other assessments done. I'm tired of being passed on to physical therapy with the overarching label of "general back pain" involving my muscles. I did do some research on Ankylosing Spondylitis before and I know that it's mainly genetic. It's tough, though. Although my mom has a disfigured spine, she avoids the doctor. All they know is that she's got scarring and arthritis in the area.
Anyway, I really do appreciate you reading my comment and giving your two cents! I'll be sure to ask about it, because I feel it's time to be more proactive about my medical care.
I actually have lived my entire life (24 years old) with a really bad stutter. So people look at me and expect me to be able to say "Hey, how are you?" Yet, it will come out sounding like a DJ is doing his thing and delaying my words. And it's rough, but like anything there are good days and bad days. I find the biggest help, is my amazing girlfriend, who without her, I probably would just shut down and not talk for days at a time. I find that just being around the person you love with an invisible condition like this. It helps so so much. Like, I'm sure Martina has had days, where without Simon she would be like totally lost.
Martina, all your fans are here for you. If you need to post a video and just say "Hey guys, not doing great" I'm sure we will all understand. Sending you and Simon massive hugs from the US. -- Joe
thank you so much for making this video!! I have EDS as well and it's so nice to feel like i'm not the only one living this way who doesn't want to focus on it.
I've been subscribed to this channel for so long, and I am so excited because of this. I was diagnosed with Classic type EDS when i was ten, and never really had anyone to look up to with my condition. Thank you for sharing your story. At the age of 18, I finally have someone i can relate to.
Medical marijuana.
Definitely not going to happen in Korea but it's a million times better than taking powerful pharmaceutical pain killers on the regular. I know medical users who have chronic pain from Crohn's disease (literally feels like your stomach is filled with tiny bits of glass) and Epilepsy and found relief from MMJ after spending years suffering through pharmaceuticals.
***** Yeah I get the sense they are anti-drugs and include marijuana in that category (THC is a drug but you know what I mean), which is unexpected since they are from Toronto and the weed culture here is vibrant and tolerated much moreso than in Korea
*****
Part of it is that they find being around smoking deeply unpleasant. It's possible they'd be more receptive to ingesting it, but who knows.
Two words: vapourizers + edibles :)
I agree, it helps so much. I have crps which is the worst chronic pain, and it does so much. I realize, its not fixing my nerves but it puts me in a good mood and i can actually live life without the pain interfering as much. Of course i have a lot of physical limitations, there are a lot of things i cant do or cant do for extended periods of time but with marihuana i can go out and see friends, and go to concerts and manage it where as before i started smoking i could not leave my home. I was miserable. I also write music and listen to kpop and stuff to cope, but smoking makes it so i can actually live my life.
So instead of fixing the problem, you just numb it?
I have fibromyalgia, and if I had a dollar for every person who doesn't believe me (because I look fine) I'd be rich... Living in South Korea has been very interesting. I do not take medicine and it's very difficult to explain what fibromyalgia is, especially when it isn't really recognized in Korea. It helps me to focus on other things, it just hurts too much some days.
I'm glad you find laughter and positive things. Watching your videos gives me joy. I'm glad they do the same for you. 파이팅!!
To get myself motivated, I doodle, talk to friends, work with my students, watch a funny movie... Things that keep me from wallowing and thinking about me and fibromyalgia. Daejeon is too pretty not to go outside and try to walk a little, and that helps too. Also, planning trips helps too--I'm going to Seoul next week, and I'm looking forward to exploring the city and finding some of the places you guys have talked about!
I was just diagnosed with EDS and my friend sent me this video. I completely understand how you feel, Martina! Good for you for staying positive. And like other commenters said, it is amazing to see how supportive Simon is. I think I might forward this video to my husband as well...
I just wanted to say thank you for this video. It helped explained what you have Martina. But it also helped me with give me pointers when my MTCD flares and i start to go down the nasty depressed road. So thank you for finding the courage to talk about it.
I spent a year renting a room from a really cool woman who had EDS, and other medical health issues, so I have some what of an understanding of how strong both her and you are.
i have eds type 1 and 2.. ._. well that do effect me in daily basis.. but well ive lived with it my whole life so i could say im fine now ^^
I remember watching this video when it just came out. A few months before that I met you guys in Stockholm. This video now means a lot to me. In January this year I started to get sick. I now live with pain 24/7. I have no diagnosis yet but I can relate to what Martina goes through, and that means a lot to me to know that I'm not alone. You two are so strong and that really inspires me. Thank you Simon & Martina, seriously thank you
Thank you for being vulnerable and brave enough to make this video. I deal with a boat load of issues and have been out of work for 6 years, but hearing your coping method gives me courage. I am not good in support groups because sometimes it just focuses just on the bad. But...I can see the power of small victories. Thanks for sharing yours.
Thanks for sharing this and shedding some light on EDS in the process (I also have EDS). It has been a dream of mine to teach English in Japan for a while now and I actually applied a few months ago. Recently however I have been in quite a bit of pain and have felt my condition will prevent me from carrying out this dream. This video and your life gave me inspiration and I am now reconsidering going to Japan. Thanks for that!
Thank you so much for making this video. You wont believe how comforting it is to see such a positive and casual video about something like this, instead of the typically heavy videos that are on TH-cam. I just wanted to say that your videos are part of my coping strategy. On days that are really bad I will binge watch your videos until I have courage and the lighthearted feeling in my chest that I often need before I can deal with a really bad day or moment.
Thank You!
Thank you for saying that. We found the same thing as well: looking online about Chronic Pain tends to be very heavy stuff. It's hard not to feel worse after reading it :(
My spiritually really helps me with my fibro. I'm really thankful for your videos. You guys are so great.
These two are actually the most supportive and loving couple I have seen in a long time, I only found your channel a month ago and it actually makes me so happy to watch you guys have so much fun and laugh so much together.
I have EDS, too! Classical type 2! it makes me feel a bit better that someone is bringing more light to the condition! Thank you, guys ;u;
I am diagnosed with lupus and fibromyalgia so I understand your pain. You and I are blessed to have husband's that are caring and loving. much love to you both! !💟💙
A lot of the things you both are dealing with I and my wife are as well. I have chronic pain, and this was very nice of you to share. Very encouraging. Thank you
Thank you so much Martina for sharing with us a very sensitive part of your life and I'm so glad that your not letting it stop you from doing what you love! Thank you for being an inspiration for all of us!! 😁👍🤓
How strange.. I saw this video yesterday, and I was diagnosed with a relatively mild form of EDS hypermobility type the same day. I always had issue with my knee hurting from activities, and it turns out my ligaments are loose, especially around my knee cap. I thought it was normal that they move around a lot, but now they look really wacky compared to others'.
Best of wishes to both Martina and Simon in your adventures. You guys are truly lovely. Thanks for all of the great videos!
Thanks to my gma and the genes she passed down, I'm immune to opiates. When I had foot surgery as a baby, they gave me morphine... It didn't work. It took them forever to find out that I wasn't crying because I was fussy but because I was just sliced up and had no pain medication.
Also even though I've had sx, my condition is not completely 100% fixed so I get random foot nerves pinched, tendons are easily pulled or they move put of place, I get cramps and can only walk for a few hours before I want to cry in a corner from general foot pain. I just try to laugh through it or listen to music. I have my doggies to cheer me up too.
I love watching this video. It always kinda helps me keep perspective on my own disability and that it shouldn't stop me from achieving what I want. I really admire how strong Martina is. Watching you guys always reminds me how much people can accomplish with kind hearts, a positive attitude, and hard work. Keep it going, guys!
as another eds sufferer go you you have such a healthy mindset about the condition.
the awareness you brought with the video is great as well
This is my very first comment in youtube. I've been enjoying your channel not knowing what's happening there. I sincerely feel sorry for Martina's condition. Hope she gets better soon!!!
YAY YOURE BACKKK!!! WOOOOP
but guys don't hesitate to take breaks cause you guys gotta rest man!
take care of yourself
I just got diagnosed two days ago with EDS and I'm so glad you posted. I stared watching yall in 2016 and love yall.
Thank you so much for making this video as well as the one Simon made for EDS Awareness month! Seeing Martina kicking ass at life even with chronic pain is so amazing. Also, as someone who does not have chronic pain but hopes to be helpful if/when I meet someone with an invisible illness, it's great for me to see Simon having her back and continuing to be there for the long term.
YAY, YOU GUYS ARE FINALLY BACK!!
Much Loves from Singapore
So I don't have EDS or anything like that. I am however in pain pretty much every day. My weight is affecting my ankles, knees and hips and my back hurts every day. I also have very bad constipation which gets bad quite often and I can't stand up properly. I was also diagnosed with severe depression last autumn and it makes dealing with the pain even harder, since I really have to force myself out of bed. Every day is a real struggle. I have to lose weight to make the pain more manageable but running etc makes the pain worse and my medication makes it harder for me to lose weight. However I do try my best to keep going, believe that it'll get better. I hope you're feeling atleast a little better Martina. I have a way out of the pain but I want you to keep fighting. All the nasties support you.
School and my boyfriend are the things that get me out of bed in the morning. My boyfriend is so supportive, it's because of him I went to get help for my depression. Like Martina said, small victories. If I get to school and don't skip any classes, it's a victory. If I manage to eat breakfast it's a victory, if I get a full night's sleep without waking up 1-5 times, it's a victory. I still don't believe I have any true friends but the people around me have stepped up to make me feel better. They ask me out for coffee or to watch Sherlock with them. It has helped a great deal and I love them for the effort. Surround yourself with people and things you like, like cats and Sherlock marathons. I have felt better in these last few months than I have in several years, and it just gives me hope that I'll get better.
Try low-impact exercise. Walking, swimming, biking, yoga, most mat-based workouts.
Running is bound to hurt if you're not used to it (like me last year!). Start small -really small - and build on it.
I dunno if this will help, but if you are living in an area where it snows a lot in winter, then definitely go sledding. It's a fun ride downhill and definitely worth the workout you get going back up the hill for the next round. Take your friends and family with you and it's great fun plus a wonderful exercise! I'm also trying to lose weight so I understand the plight you are in. :)
Completely understand what you mean with the pain due to weight. I'm trying to lose weight as well. My ankles are terrible and my right knee is starting to get really bad. Good luck :)
A little tip is to start out with light weight-lifting. If your joints and ligaments aren't surrounded by muscle to support the cardio you do, then you can do some serious damage to your body. Start with portion control and healthy, clean eating. Then slowly go from there. Don't push your body to run, if it hurts. You can seriously fuck up your tendons by doing that, because your muscle tissue isn't sufficient to support the movement. And also - I know it probably doesn't feel like it right now, but it gets better. When you're in the middle- or beginning stages of recovering from depression, it seems as though there's no way out. But trust me, every day gets better. It will slowly but surely get easier to get out of bed. Try to find ONE thing that you 'have' to do each day to make it a good, productive day. For me, getting out of bed and having ONE cup of coffee each day was that one thing. I hope you get better! And as said - don't push yourself too hard (neither physically nor mentally). ^__^)/ You got out of bed today, bro! GOOD JOB!
Thank you for sharing this! I have been binge watching your videos lately and had no idea this was going on. You both are such positive and happy people and I think it's wonderful you are no letting this hold you back from living! Such a joy to watch your videos!
Watching this probably makes your subscribers more proud of your videos and put smiles on our faces, you turned your pain into our happiness. Thank you :)
You both are an inspiration. Thanks for sharing.
Your husband sounds like a help also! I have RA, mucho pain, and his laughter and positive understanding keeps me going! Thanks so much! I do a silly blog, and it makes me feel great. People are 'you should write more about RA" and I am "I want to focus on fun in life." Also, a pain day means I try to find something small to do for someone else....even just a post card for fun. Give hubby a hug from me!
seriously, I have a friend and her daughter has a heart condition. Her daughter won't make it to 18. so I have a pile of silly postcards I send her daughter if I'm having a bad day. It's small, but I don't feel I have "wasted" a day by just staying in bed.
Kitty Mervine I have RA as well.
I know this video is from 2 years ago, but it was so helpful and inspiring I had to comment. I also have an 'invisible' chronic illness, and joining support groups totally made me feel like I was already one foot in the grave! Martina, I appreciate the positivity you exude in each of your videos despite the pain. Kudos to both of you for your honesty and bravery in sharing with us!
You know, I watched your videos while bed bound for a year, I started at the oldest and just watched through it all. Dreaming of traveling and exploring. And this video, and in the end your channel, changed everything for me. Because it showed me I can do this too.
And I'm immensely inspired seeing how you've grown, how you approach your chronic illness in social media nowadays, how you've both opened up. It's one of the ways I build my ladder. Thank you for sharing. ❤️