How I Deal with Chronic Pain - Build A Ladder
Вставка
- Опубліковано 30 вер 2017
- Warning: this video will start out sad BUT I'd like to show you, start to finish, how I deal with the mental toll of Chronic Pain, how I refuse to give up, and how I continue to #buildaladder to pull myself out of a dark pit.
Hi, I'm Martina. I suffer from chronic pain as a result of having Ehlers-Danlos Syndrome (hEDS). You don't see it in our videos often, because I've learned to hide it, like so many of us with invisible illnesses. But on some days, the pain is unbearable, and I can barely focus. On those dark days it is easy for your mind to succumb to incredibly dark thoughts, but I've made up a type of mental visualization and personal mantra revolving around focusing on little things which help me to build a ladder out of my darkness.
Martina's Website is • ｡･:*:･ﾟ★,｡･:*:･ﾟ☆ 👑 www.kingkogi.ca 🐷 ｡･:*:･ﾟ★,｡･:*:･ﾟ☆
You can find Martina:
puttering on her Instagram @ king.kogi
posting personal projects to her UA-cam page @King Kogi
and live-streaming on Twitch
King Kogi UA-cam: King Kogi
King Kogi Livestreams on Twitch - King Kogi
• ｡･:*:･ﾟ★,｡･:*:･ﾟ★,｡･:*:･ﾟ☆ ★,｡･:*:･ﾟ☆ ★,｡･:*:･ﾟ☆ ★,｡･:*:･ﾟ☆
#buildaladder #chronicpain #EDS
You are a force. I appreciate your vulnerability, it's inspiring.🙏
+emmymadeinjapan you’re amazing and make great videos :)
emmymadeinjapan ahh emmy i didnt know you watch Simon and martina
I didn't know you watched Simon and Martina.
I too didnt know you watched Simon and Martina.
can we also just take a second to appreciate how amazing Simon is with Martina and how he is a solid rock next to her when she needs it. what a wonderful partner he is for her. no wonder, Martina is so lovely.
I think it's incredible to see the emotional transition throughout the day as Martina continues to make small decisions. That's such a heartwarming part of this video - to see that she can wake up feeling absolutely gone, but as she controls what makes her happy, she too starts to feel better. Her voice is higher, her eyes sparkle. Martina, you are the epitome of hard work, in the mind and on the body.
I'm only 1:20 in. I started sobbing. I have an unidentified auto immune and couldn't even pull weeds in my flower bed today. One year ago, I was training for my third half marathon and yanking overgrown bushes out of the ground by myself. Powering through anything. And now I can't even hang a wind chime successfully. It's been a hard day. Hard year...
I've watched your videos silently since you all first started. But I missed this one. I think it was meant to be saved for now.
Thank you for being so open about what's going on with you, Martina. I appreciate it so much, and hope I can help others get through this stuff someday as well.
Now I will finish watching the video. Thank you, guys.
I watch this whenever I feel down about my pain. I think if Martina can do it, get up and get out of bed, I can do it.
And I think the same about the members of my community :) you can do it, so I do it too 🔨
This is how I feel! We’re all stronger together!
I just remembered to check our translations, and I realized that many of you have submitted subtitles in a lot of different languages. Thank you for helping, everyone. Subtitling isn't fun, i know. I really appreciate the effort. Thank you :D
I actually like making subtitles. Also, it's a little something I can give back to you guys.
Hi Martina. Great video. I don't login to youtube much but I wanted to say that I have met quite a few patients with EDS and I would recommend visiting a good rheumatologist who can help. Losing weight and shifting your diet over to a healthier one with less meat and more veggies such as a vegan diet has also shown to be quite helpful in controlling inflammation and pain. I know you and Simon are foodies, but having a healthier diet is definitely something to take into great consideration.
As I was watching I was thinking "I've got to put in portuguese subs, this is such an important video" and i was so happily surprised when I saw that someone already did! Thank you Simon and Martina for making the video and huge obrigada pro lindo(a) que legendou!!! Ficou lindo, aliás.
Jennifer Tran Cannabis is absolutely illegal in Japan.
My mom suffers from chronic pain because of a fracture in her spine and multiple really bad achieved surgerys. She does not understand english, that is why I expend the afternoon subtitling your beautiful video. I hope it can help her. A bad day to her it's a bad day for the whole family so we always try to cheer her up with bad jokes (she is the QUEEN of bad jokes), ugly dancing and funny TV shows. Also we play a lot of board games that make us concentrate and friendly fight with eachother. For us Distraction is the key to build our big family size ladder.
This is a tough video, but Martina is going to show you how she perseveres when her chronic pain gets overwhelming.
Hopefully this will help so many people suffering
I'm still crying, even after this video ends. Stay strong, Martina ~ Lots of love for you 💕💕💕
feel better soon martina! 🙋🙌🙆🙏💪
You guys, the both of you are so incredibly strong. Hold on dears. I only can hope that soon there are treatments that will make the pain go away. Big hugs.
Thanks for being an inspiration guys!
I have rewatched this video so many times. Sent it to so many friends who have mental and/or physical pain. What a great resource. Please never take this down
My son has EDS. He is 21 an sick for 10 Years now. He feels like you do. Thank you for sharing your day.
He has a good Doctor, who relocates his spine, arms, feet, fingers etc. So he has less hurts and his spine is straight now after ten years of mild Chiropractic-Ostheopathie-Dorntherapie-Mix.
If his shoulder dislocates, he relocates it or goes to hospital. If you dont do that, it hurts more and more.
After 4 sabbat- years, his chronical fatigue is gone and he is happier. But he can not go to school or work.
I wish you the best and that you find somebody, that can help you. Stay strong... 🤗😘
Simon is my role model in helping my partner build his ladder.
The fact that you and your husband both got degrees and emigrated to Korea and Japan and made a successful UA-cam channel and web-site speaks volumes about overcoming your disability. You are an amazing woman and a great couple. :) I hope that someday maybe there is a better treatment or cure for you, but until then I wish you both the best. Estoy enviandote buenas vibras!
I am guilty of laying in bed on bad days and letting the depression take over. I don't have anyone around me who can understand why there are days where I can't do because my body hurts to much. It hurts to move, it hurts to sit still, it hurts to lie down and some days it just feels easier to curl into a ball on the bed and wait for a new day. Your determination has inspired me to "build a ladder" on the days I can to help me on the days I can't. It's only human to have times when you feel sorry for yourself and ask why me when everyone else can just live normal and it seems so unfair, but struggle builds strength. I remind myself as often as I can and now will try getting out there when I'm maybe not quite feeling up to it in the hope that I can improve my mood. Being in a bad mood while in pain just makes the pain worse. Thank you for inspiring and encouraging and reminding me I'm not alone in the struggle.
swetpmnkygrl your comment is super relatable and yeah, you are not alone!
You're not alone. I barely manage to wake up some days. Today I'm slightly better but I'm waiting for the pain to kick in soon. I can't deal with this anymore
swetpmnkygrl I relate to this so much. Thank you for sharing and chin up babe ♥️
So relatable. I was first diagnosed with depression at the age of 12. 37 now with a diagnosis of chronic depression. And within the last few years especially this year chronic pain started dominating. Along with fatigue severe exhaustion just from doing small tasks. I used to be able to work in the restaurant business move around stay on my feet for 12-hours work 40 50-hour weeks. I was able to manage my depression but all the sudden the bottom fell out lost my job everything just started going down and medications were no longer working. I've had them shipped it still nothing and nowadays I spend most of my time in bed. I may have one or two good days a week. With the laws where they aren't very difficult to get pain medication. even harder to get disability when you have a mental illness because they can't see it. Chronic depression is no joke. It eats away your brain slowly. And you find everything in your life slowly disappearing into you have nothing. then you're curled up in the bed most days and physical pain because the toll your brain has taken from the depression has now turned into physical problems chronic pain. people tell me I love you got up moving around more you wouldn't hurt well it hurts just to take one step out of bed some days. I've also been developing Parkinson's like symptoms from low dopamine levels that we're never noticed and never diagnosed. I just recently found that out a few months ago so that's freaking scary. But what this woman and this video is doing it so brave. Seeing her get up out of bed knowing she's all that pain is inspiring me to just push through it no matter how bad I hurt.
I didn’t want to watch this, because it’s hard to face my issues sometimes. I’m glad I did. I have EDS HYPERMOBILITY syndrome and rheumatoid arthritis. I’m often in chronic pain and deal with a lot of shame about the fact I am overweight, I have to say it’s a bit chicken and egg the issue though, I want to lose weight but can’t exercise, but if I lose weight exercise would be more probable. I hate when people say “how are you?” How do I answer that? I hate when people didn’t know me before, when I was a lively, beautiful life and soul of the party. I am more than just my illness, but it is all consuming. Thank you for spreading awareness and making me feel less alone and less lonely. I wish I had a duckie, but I do have two wonderful understanding 15 year old boys, so I am very lucky, them not so much. X Rose
Milkymoles. Ohh I can so relate to the shame of being overweight due to serious and painful conditions. Being overweight or not being able to move also makes the pain worse, atleast that's how I feel. Or maybe it is just the mental pain affecting your body too, who knows. I think being overweight is just another symptom, and the real shame is that people don't understand that.
I also have a hard time losing weight. It's hard for me to exercise because I have type 1 diabetes and if I overdo exercise, I might have a low and undo all the good I just did for myself by having to eat something high in sugar. Also, insulin in the form that type 1 diabetics have to use causes us to hold onto fat more so than someone with a normal functioning pancreas. I know it's not a chronic pain thing, but the mental part can be somewhat similar and I do have depression on top of it. I never thought about #BuildALadder until Martina talked about it, but I'm considering finding myself a visual representation of it to help me take care of myself.
Milkymoles. I feel this
Milkymoles. I also relate to how all-consuming Chronic Intractable Pain illnesses can be. I completely lost everything; my career came crashing down in a very grand, public, humiliating fall from grace; my identity; my worth. I was a 120# 5'5" L&D/Pediatrics Nurse, Firefighter, Vol. Paramedic, black belt, equestrian, 4-H leader, H.S. Volleyball team mom... I was a dynamo. People who say that Fibromyalgia patient's are just looking for attention; are malingerers; just need to lose weight & get a life are full of schitt.
I have been very happily married to the Love of my life since I was 18. I was living my best life, working my dream job, with an absurdly well-behaved teenage Daughter. Until I got sick & the pain left me bed-ridden for over 2.5 years. Being unable to move, & b/c of the many medications I was on, I put on weight & topped out at 265 pounds. From 120 # to 265# in under 18 months. All of that was a symptom of my illness & a result of my pain & medication. None of it was selfish, attention-seeking, embellishments of my pain & symptoms. And it's asinine for anyone to say otherwise. It's an embarrassing, humiliating, painful situation to be in such an uncomfortable, overweight body condition. I felt terribly ashamed for my Husband & Daughter to have to be seen with me, or to have to acknowledge my relationship to them. I was bed-ridden due to the horrific pain, so I didn't leave home often, but when I did, if I saw someone we knew, or my Husband or Daughter ran into people they knew, I'd try to sneak away & hide so they wouldn't have to admit knowing me & be forced to introduce me to anyone. I felt terrible for them.
Finally I found a good Pain Management Dr. who quite literally saved my life, found a good pain medication for me, & gave me enough pain relief that I once again have some semblance of decent quality of life. And b/c I can walk again, I have lost 75 pounds. It's not great; it's not where I WANT to be, but it's a start. Most important, I don't feel as absolutely unworthy of love anymore. My Husband has always been amazing through this, & It's a huge gift to be able enjoy going out for a dinner-date together, or walking the Dog together.
One thing I know is that I could not have gotten through this without my amazing, wonderful Husband of 27 years.
It's hard enough to get through this WITH a wonderful, supportive, loving, understanding Husband; I can't imagine going through this alone, but I'd rather be alone than with a partner who not only wasn't supportive, but was actually demeaning, insulting, & hostile. I don't know how so many women live through so much physical AND emotional pain; may God bless their souls.
Sorry- Please forgive me. I didn't mean to digress. I always could talk the ears off a mule, but I'm much more of a talker (writer) now that I don't engage in any other meaningful conversations, except for those with my patient, precious Husband. Much respect & admiration, & much love & best wishes to you~ ❤
No shame girl! You can’t hold yourself to the same standard as someone who is healthy and able.
My five year old said you are a beautiful lady. She loves your cat. Hope you feel better! I suffer with depression so I go to gym, color or draw, put make up on. Talk to my grandpa.
I didn't believe superheroes existed before I heard Martina's story. She's truly a real life superhero.
So what about Cancer survivors ? They're not superheroes
I wonder if Simon was crying filming this :(
Every time I need to rewatch this video, I’m going to thank you, Martina. Thank you. And thank you Simon for being an awesomely supportive spouse, this is so hard, you’re saving her life every day. Seeing y’all working together gives me hope. XOXOX
Thanks y’all, you keep saving me xoxox (I need a pig and a pig hat, STAT!)
@Sue W I wonder if he feels like he's failing you, because even though i've dealt with chronic pain longer than my husband has, he is in terrible shape, and I often avoid him. I feel my being around him makes him worse, so I build a wall. If you can, ask your husband how he feels when for going through the worst days, and if he feels overwhelmed by it all.
I got a huggy pig and I just got a pig hat... Thank you. Martina xoxo
#BuildALadder
@@debbieebbiebobebbie can you share the link to the pig hat? 🐷
Nearly 3 years later and this video still speaks to me. I watch it on hard body pain days and it inspires me to at least try taking the first step. Thank you Martina for sharing your journey, you have no idea how much it helps even years later.
Same here ♡ Martina is such an inspiration for ppl that struggle with chronic mental or physical pain
My God, Simon could not love you more! To hear the emotion in his voice is to know he will love you forever. Love and strength to you both xxxx
I thought this too. If they love, cherish and support you on the bad days then they are keepers!!
One thing tho, this makes me so much more comfortable. Because this is life, and every day is important... We gotta love what we have and go through hard times to pay the time we spent here...
Hey Martina, I know this is an old video, but....I always come back to this video to help me start the ladder.
So you'll be proud to hear....I got out of bed and took my first steps outside
Hi I have EDS and I stumbled upon this video today thank you for making this I live in an area where it gets very cold most of the year so leaving the house is not an option when I'm in high pain but on those days I try to get up and do my hair take a shower or put on some makeup but some days that's not enough I still go through a mental spiral and even my pain management isn't enough I used to have things to do on my ladder that really helped but lately those have been taken away I can't even bake without severe hand pain so my list of hobbies have decreased to pretty much reading my Bible and watching TV I'm hoping this summer things cheer up but for now I have more bad days than good and sometimes just the validation knowing that it's not just me it's this disease helps so seeing someone else have to struggle with this breaks my heart but helps me understand that this is not my fault or anything I did this is just my connective tissue and I can choose to be a victim to it or try to get creative and cheer myself up thanks for posting this video I would do it but even on my bad days I don't think I could take a video so I praise you for doing that when you don't feel well even that was hard I'm sure
I applaud Martina. This took guts to put on the internet. Im on the city bus crying my eyes out
sophia frost yes it does. She had a great attitude
Simon is the perfect husband! You guys are just the best! ❤️❤️❤️
I can't tell you the amount of times I've come back to this video over the years. You have such a big positive impact on your community, Martina. Wishing you all the best :)
I have scoliosis and I needed this video. Thank you. I barely have gotten any sleep lately from my back just tearing me up and it's hard to be positive. Yesterday I was stuck crying and laying on the floor unable to move for a few hours so I crawled myself over to a book and read on the floor to start my ladder. I hope everyone else who watches this gets some hope too.
"Good morning, my love". What a special couple. I've watched your videos for years, and appreciate that you've decided to share your experience with us. Hoping the best for you both.
Martina you have no idea how much these videos mean to me. I suffer from Chronic Reoccurring Multifocal Osteomyelitis. I'm 15 and I'm in such a hard time right now with my mental and physical health. You are such a role model for me. Seeing your videos make me feel like I can get over anything my life throws at me. Stay strong Martina
I really like the ladder concept. Chronic illnesses suck :( I like to try to cook something or clean something around the house even if it's just a sandwich or picking up the living room makes me feel more positive and like I accomplished something for the day. But some days when I have to work even just for 5 hours, that's all I can do for the day. Thank you for sharing your experience with chronic pain/illness ❤ and Simon is a good man, as is my husband 😊 I wouldn't get through most of my hard days without him
I’ve been struggling with going on. Life has hit me harder than ever before, these days are things I never foresaw and I spend them in bed. Watching this and your other videos on building ladders really do help me see some glimmer of light. You’re powerful. You are so powerful. Thank you for making these videos.
I don't see this as sad. I see this as a woman with strength and hope!!!!!!!!!!!!
I'm a teacher. Many of my kids are dealing with trauma far beyond their years, and beyond their coping skills.
This video has already been so helpful to me personally. We talked about "building a ladder" in class today. I plan to continue talking about it.
I don't comment much on UA-cam, but please know that you've had an impact on at least one person across the globe.
Thanks for your honesty and introspection.
+
+
+
As a fellow EDS sufferer, I thank you for this.
I got diagnosed with HEDS after 13 years and I’ve watched this video many many many times because it helps so much. THANK YOU SO MUCH FOR POSTING.
Simon is literally the best husband ever he's so supportive and cares for Martina so much 😭❤️
Having just recently been diagnosed with EDS after 9 years of thinking it was only POTS, I really sometimes struggle to see myself living anywhere but where I am right now - 21 years old, jobless, not in school, living with my parents, having them do so much for me. There are days I don't even want to go to sleep because I know that it means waking up and starting the cycle all over again. But you know what? That's life. Everyone has shit they don't want to do, but they do it anyways. And why? Because whether you want to be part of the world around you or not, it will still go on.
And I hate it. I hate thinking that I'm so out of touch with myself, so out of touch with my entire life that it will continue to exist with or without me. It hits me harder than my chronic illnesses because at least I can try to control those. And so often I'm stuck between thinking, "There's more than this." and thinking, "This is all I've ever known."
But seeing a video like this? Where someone like me is functioning, even if it's just to make it to the end of the day, and able to still enjoy life through the pain? It makes me feel like hey! Maybe I can do it too. So thank you. Thank you for not shying away from the ugly days. Thank you for showing me that giving in is just as bad as doing nothing at all. Thank you for showing me that giving in isn't an option at all! Rome wasn't built in a day. And neither will my ladder.
Best of luck to you, well not luck but wishes. I hope that you can find a happy medium where everyday is a good day because you made something good out of it.
I believe doing things that make you happy won't take away all the bad stuff, the pain (physical or emotional/mental) but it means when you look back you can be proud you did more than stay in bed, even just doing this is a step forward to a better day.
Harper Reese Keep going sweetheart! You have a journey ahead of you, at 21 with a new diagnosis you are still very near the start. You expressed yourself so eloquently and with so much optimism that I am certain you will build an amazing ladder to take you to places you haven't yet dreamed of. Much love xx
Harper Reese You're doing great, keep fighting!
Harper Reese
WOW! How very beautifully you express the life of chronic pain sufferers! I'm desperately sorry for your pain and my heart hurts that you are so young, but I also see someone who is awakening to what's possible even while dealing with chronic pain. My advice to my patients (nurse 37+yrs retired) was always "You are not your disease. Your diagnosis is not what defines you. It gives you different parameters than those in good health, but as long as you are willing to stay within those parameters and do yourself no extra harm by" pushing through it", you are still able to participate in life. How you do that is up to you and your medical team, but please don't become your disease. It's what you have, not who you are. "
Thank you guys so much for the positivity! I will keep fighting, and I hope that I will find the best 'me' there is through all of this and take them to great places! ❤
Loved your video. I have severe fibromyalgia. I agree that we need to get out as much as possible. My mornings are horrendous. I just feel like curling up in a ball and not leaving the house, but I force myself to go out. Even if it is to a grocery store. I use the cart to help me walk around and walk up and down the aisles to give me some exercise. Then I chat with the cashier or a customer. A few days ago my friend and I went out for lunch. We had a short walk to the restaurant. She has bad arthritis in her knees. She was hobbling with her came, and I was struggling with my walker, but it was so worth it. We had so much fun and such a lovely meal. We even forgot about our pain for a short time. Pain is a very lonely and disabling illness. Trying g to stay positive and not get too depressed is very important. I hope you are having a good today. Hugs ❤️🇨🇦❤️🇨🇦
I'm crying a river over here bc martina is the most sweet, honest, strong and she's just so full of life person I have ever seen on UA-cam. I only know her through UA-cam videos but its obvious to see that she gives off such a positive vibe even when she's struggling emotionally or physically and through this her beauty shines so bright. I cried not bc I feel sorry or pity martina but its bc she helps me to realize that no matter what kind if struggles I may have, I can surely make it through I just have to keep going and don't stop. How could someone I've never met in person gave me such an impact on life and helped me to look at life in a much more appreciated way. I just wanna say thank you so much martina with lots and lots of love! ❤
I have EDS too. Searching for videos about the condition was how I first found this channel. In the past, I was housebound at best, bedbound at worst. It became so unbearable that I contacted an assisted suicide facility. Sometimes I couldn't walk, sometimes I couldn't stand, sometimes I couldn't sit. There were days I couldn't even talk. I wasn't just ready to give up; I already had.
Martina, your last EDS video filled me with such hope and positivity that I still consider it the first rung of my own ladder. My health spontaneously improved, but if it hadn't been for your inspiration, I may never have tried to see what I was capable of. I could have stayed in that dark dark place, in that pit, if you hadn't helped me to heal. Now, I can go outside again. You were my pig hat. I will always be grateful to you and Simon 💓
NotMostGirls prayers to you! Thank you for sharing your story! ❤️❤️❤️❤️
NotMostGirls build that ladder girl ♡ Your story is inspiring
Kelly Wimer, thank you so very much, bless you 💓
Basic Avocado, thank you very much, that means so much to me 💓
Glitter that latter as you climb it, girl! Add some streamers the higher you get
I started bawling the moment Martina came out of her bedroom. I love you both so much.
Sending many hugs and kisses to you both xoxo
Thank you so much for sharing this video. Building a ladder. I have to remember that. I've been dealing with depression lately. I've been sleeping a lot lately. So damn much. Anyway, I've been working on trying to get out of the house more. Some days it feels like I haven't left the house in weeks. I'm trying to drink more water too. Because oddly enough, soda pop shouldn't be a way of life. It's the little things, you know? Thanks again for this. Stay strong, girl. You'll get through this. You're stronger than you realize.
I just finished watching Simon’s tattoo video about his past and watching this video about you Martina and your pain makes me appreciate every single video you guys have done even more. The love and support you two have for each other is amazing and strong. I’m so happy that you guys found each other. Stay strong both of you and we will always be here for you and supporting you two and all the adventures you guys go through❤️❤️
It’s 0.07 seconds in and my eyes are already teary. Must be bc having following them for years you know the struggle she faces daily. And now she’s actually going to show it and I find her so incredibly strong. And now I’m crying and haven’t even started the video >.
lorenax17 Same here. And watching the progression from where they started to now and how Martina's condition has progressed also makes me sad. But the way Simon is always there is amazing.
Katherine Smith I agree! His support for her makes this relationship pure goals. :)
Seeing Martina like this makes me cry so hard but she is so strong and beautiful. She always pulls through and tries to hide her pain but her showing everyone this video is so inspiring!!! (PS. Simon is such an amazing support!!!)
I came back to this video because I got diagnosed with fibromyalgia this week on top of the hip condition I was born with. I watched this video again as a reminder to myself of this brilliant way to get going on those difficult days,
I wish I was as strong as you. I have EDS and Fibromyalgia and ME also Epilepsy. Today is the first day I could get out of bed for the last 8 days. I’m trying to build my ladder but is really wobbly and so lonely
I do realize I comment on this 1 year later and wish I could have done way earlier...
I see that you have ME, so do my mum and it's really terrifying... Don't push yourself to do things the slightest at all, don't go up do things just because you today have more energy/adrenaline....
My mom has a terrible case of ME and I really don't want anyone to reach that state. She has been stuck in bed the past 4 months, before she used to be able to sit by the kitchen table to eat, but today she isn't even able to do that.
I often have nightmares about mom's illness and it affecting her even more than it already does.
Please do take care and NEVER do something for someone just because you feel like you should. You are ill and really have to put yourself before EVERYONE ELSE. Even if you have children, please don't put them before your own health. I swear that they would be happier seeing you able to talk and think rather than feeling a guilt that you do things for them but only get worse when you do.
I really wish my sister would stop calling my mom all the time, she can't accept the fact tha mom is seriously ill because our mom has done everything in her power through our terrible childhood to keep us safe.
Yeah
Stay strong!
I didn't want to get out of bed today. But literally as I was laying there checking my phone I saw your video come up and I watched it all. I got out of bed, I went to work, I even made it to the pharmacy to buy more medicine. Thank you for sharing how you build your ladder. I hate seeing how much pain you're in, but knowing that you still get up and build your ladder even when you want to do anything but makes me feel like I can do that too. Sending you and Simon all my best
Superheros don't wear capes, they wear pig's hats...sending some positive energy and hugs.
Jana Schott best comment ever
I just found your channel today, I am always grateful to find a youtuber with EDS because watching your videos makes me feel less alone as I lay here on my couch in agony after a day of pushing myself to be out of the house. So thank you for what you do!
I have chronic fibromyalgia. I am on the biggest medication and I still hurt. I still feel the way you do. Pain. I love you. I love to watch your videos. When I'm in bed and in extra pain, I love to watch your videos. If you can't get out of bed, I'd love to see bed stories with you two. I love you two. I'm sorry you're in so much pain. So much love to you.
My sister used to put a tiara on when she was having a bad day. She passed away 3 months ago from cancer at the age of 32. She also had MS for 10 years before being diagnosed with cancer. I miss her terribly but I have all of her tiaras so that when I'm having a bad day with chronic pain, anxiety, depression, and panic disorder I pick one of them and wear it. It helps me feel close to her but also makes me feel a little better. One of the hardest things for me is getting out. I don't know that it really helps me, but talking with a friend or watching some you tube videos helps.
Thank you for showing us what one of your bad days looks like. I want to be able to spend more time with my son (10) and husband so maybe next time I want to just stay in bed and sleep it away, I'll get up and start small. We can always come back homer or continue on with our journey. I also think that having such a super supportive partner helps. I feel that my husband gets it some of the time, but on other days he just doesn't and makes me feel even worse. I'm not trying to deliberately avoid being with my family but I think he feels like I ALWAYS have a choice to get up and go. Sometimes that's super hard. Last night I didn't sleep at all. The night before that either. So that makes it really difficult to function in general, but then when you add all the other crap on top it almost seems impossible. But I'm going to try to build a ladder tonight and see if my boys want to go somewhere for dinner.
Thank you, Martina. ❤ And Simon, you're a really good egg.🦆 You seem to go with the flow of Martina can't get out. You'll go do something on your own but you don't make her feel bad about it. But you also seem to be such an encouragement and cheerleader for Martina too. You're a good man, Charlie Brown!!
Ok, I'm done now. Truly though, thank you for being so open and courageous about the challenges you face. It really does help to see someone succeeding that's in a similar situation to my own. 🦆
I can't express how deeply sorry I am for the loss of your beloved sister. When you are able to go out, you can experience every good moment on her behalf and in her honour; that way she will live on with you and through you, always 💖
Im so so sorry for your loss but I believe that you are an strong person ❤️
I think you are one of the greatest people!!! It is not easy to share a story like this....I am so sorry for everything and I know you went through a lot.But I can see that you are so strong and you can do anything!!!!! I really hope you see this comment.......
Maybe it will help to show him this video. It can be hard for some people to understand that another person can be experiencing a day in a fundamentally different way, so maybe watching this can help him see what it takes for another person experiencing something similar to you. I would also show him one of their regular videos so he can see how it isn't a matter of who the person is but rather what they're going through, you know? But, of course, the same goes for him too, I think. These things don't only affect us, they affect the people around us too, so be empathetic for his experience as well. Be gentle with each other. :)
I want to offer you a hug. Losing your sister can't be easy. I just hope that peace finds you and supports you even when the tears/grief show.
Watching this after a cry because yesterday turned out to be a hard day full of pain while it should have been about finally meeting colleagues and having fun. I just got diagnosed with HSD after 6 years of mysterious pains, physiotherapists, massagetherapists etc. Although I am a lot better after the efforts of one massagetherapists, the chronic pain still gets me, especially to realise now that I will always have pain one way or the other. When I watched this video years before, I never realised I had similar sypthoms as Martina. Now this video is an aid for my own problems, this being my ladder for today.
I'm new to this channel. I just found it five minutes ago just to see yakisoba noodles but I can't say with words how much I needed to see this. I saw the blue tape and I immediately knew.
I have Ehlers Danlos syndrome as well and I still try my best to hold a job and stay out of a wheelchair full time. It's SO hard on me every day although some days are better than others.
Chronic pain can make every little thing difficult but I'm so proud of you for still going strong even when your joints and collagen isn't. It makes me feel so good to be reminded that I'm not alone in this.
Martina here! 💜 Welcome to our Nasty community! The least nasty, most supportive and welcoming UA-cam community on the internetttttt! I hope we can give you some smiles and laughs through our videos. I personally use humour to deal with my EDS as it’s so easy to fall into a dark mind space. You’re absolutely not alone, check out the #buildaladder on twitter and Instagram and you’ll see other lovely people sharing their tough times and pushing through.
Simon and Martina thank you, I definitely will!
We all love you Martina!
#buildaladder
It’s so sad that an amazing strong woman like Martina has to go through this
living (emphasis on "living") with a serious illness is what makes people strong.
I also want to point out how having a supportive partner helps A LOT.
This did not agree well. There was no way you could know.
I know that I am 4 years late commenting on this video. But, this is officially my favorite video in a long time. Your brutal honesty and insight in life makes a world of a difference for me. I deal with chronic pain as well and this video is exactly what I needed to keep going. You did not bring the mood down! In fact you brought my mood up. Knowing I’m not alone and seeing things from different perspectives truly help when we feel at our lowest. Today I woke up and didn’t feel like there was any hope, but this video completely changed my outlook. I truly can’t thank you for sharing and helping me see hope for me and my future! You’ve positively impacted my life for the better, more than you will ever know! Thank you so much for sharing your story and being brutally honest and helping me learn how to build a ladder! Love and spoons sending your way! -Gracie
When I first found out of Martina's condition, I was devastated for her.
A year or so ago, I was diagnosed with Hypothryoidism.
I knew what she was going through was bad but I never thought I would suffer from my own chronic illness soon after.
Not only do I support you, but I greatly look up to you now.
You put such a bright smile and outlook on life even when suffering.
Although our illness are vastly different, I look up to you and how you can stay so strong.
You are a role model to me more now than ever.
Thanks Martina.
For keeping my spirits high.
#BuildALadder
P.S.
Simon, you are a great person. It's hard to find people that put full support to people who are suffering chronic illnesses. You are a blessing.
Bless you love, stay strong and keep building that ladder!
My sister has hyperthyroidism and she really struggled with it before she started taking medication. I hope you're doing well
My teenager has an undiagnosed (as yet) chronic illness and has been feeling pretty sad lately about not going out of the house. Today I got home and found out that the kid watched this video and is feeling inspired to get out of the house every day, has gone over to their Dad's house and is determined to build their own ladder. I am so thankful to you guys. xx
Verylisa fatigue? New century sickness. Pretty common (I have it)
Check out POTS (postural orthostatic tachycardia syndrome)!! I was just diagnosed after two years of barely going to school and staying in bed all day. I know how frustrating it is to know that something is wrong but not knowing how to fix it! Hope this helps!
Hi Grace -- that's my kid's most likely diagnosis. We have a referral to a POTS/dysautonomia specialist but the first appointment's not until next month. Good luck with managing your POTS. xx
Hi Gabriela. Are you referring to chronic fatigue syndrome (CFS)? I know other people who have it and it's on the radar for my kid but it's so hard to diagnose. :( I hope you are doing okay.
I watch this video every time I have a really "down" day, and it helps me to watch you pull yourself out of it. It's a very late comment but I wanted to say thanks again for making this.
I just started watching this and I’m already tears because I understand your suffering. I have a channel and I only do vlogs when I can be a little cheery. My husband always says people are not going to see how bad I really am. I have ME/CFS, POTS, Small Fiber Neuropathy, Undifferentiated Connective Tissue Disorder and more.... I deal with daily Chronic pain and torturous fatigue. You are a strong woman. I am so sorry for your all the pain you have to live with.
Martina.
I am an American Navy combat veteran. I have loved your channel ever since the girl who became my wife introduced me 4 years ago. Thanks for being great!
I too know what it is like to deal with chronic pain. I was caught in an explosion caused by a suicide bomber masquerading as an Iraqi pirate while at sea. I was in a coma for 3 days with a 6 inch (15.24cm) piece of shrapnel sticking out of my forehead. The blast induced a thing called sudden nerve trauma or blast induced Neuro trauma depending on who you ask.
Seeing how you have coped with your affliction has been a source of strength for me and my wife.
I am sorry that I cannot do more for you other than say stay strong, be happy, love others, and be kind, everything else is secondary.
Pain hurts, love heals, life continues.
Be brave.
Simon is with you.
Best Regards,
Your fan,
Kristofer from The Bay.
Fair winds & following seas, brother. =)
Thank you for your service
mikatheraven My husband has TBI ( Traumatic Brain Injury) from IEDs in Afghanistan. The symptoms are very much like PTSD. We take every day one at a time, sometimes one moment at a time if needed. Sometimes we find ourselves overwhelmed, but even during those times we make an awful joke or do something ridiculous to make eachother laugh. What is shown in this video is so important to people who deal with illnesses or injuries that change almost every aspect of their lives. The little things are SO so very important when facing issues like this. Thanks for sharing 💪
Also, NOTIFICATION SQUAD! We usually say something happy here, but this is kind of a sad video. I just wanted to say sorry if this gets you down. We'll get back to more fun videos soon. We've got a bunch filmed!
Simon and Martina no apologies beauty. Love you both so much! Lots of love!!!!
Simon and Martina We'll always be here to support you guys! You can do it Martina! #BuildALadder 💪💪💪 We love you!
Simon and Martina hugssssss
Thank you so much for sharing this!
Simon and Martina We can't always be fun and happy. We understand.
i fucking cried with how wholesome and real the pig hat explanation was. I use animal hats when im having an awful day too. and wear polar textile sweather and carress my sleeves and hug myself. the fluffiness feels like a barrier and protection from any external bad things and internal bad things like she was so serious about the pig thing and didnt even laugh. gosh i want to hug her.
"I'm always here for you girl" - so that was not true since it's 2021 and they broke up..... :(
Martina has been voicing that things might not have been as good as they seemed on camera.
A lot of information can be found on Reddit > r/simonmartina
www.reddit.com/r/simonmartina/comments/o4tkde/this_comment_on_martinas_video_about_her
A lot of shit he said wasn't true. If you go back and watch videos & read between the lines... he doesn't actually seem all that nice imo
@@kmarie3602 I thought that since their kpop music mondays days
I love you, Martina! I really, really do.
Everyone has bad days, Martina has physical pain & sometimes we have mental pain. She didn't say it but, gratitude is a big part of her day. Fill your life with things and people that make you happy. Martina made this video out of the strength she has from the beauty of her life. She made it because she loves us & her ducky and her stunkies;) & herself. Life is seriously too short to not enjoy it. Simone and Martina are a wonderful example of follow your dreams. They inspire us everyday. Sometimes I watch Open the Hsppy when I'm having a bad day. That Spudgy voice makes me laugh every time, the bows video is one of my favorite memories of all time. Build a ladder, care for yourself in a loving and kind way. Don't put yourself down and live in the things you can't do. Celebrate the things you can do. Love to our sweet couple who inspire us everyday!
Hi Martina! Today’s the day since you made this video that I sit down and tell you how much this video helped me.
To make a long story short, I was in a serious auto accident where I broke my back and a few other bones as well as a Trumatic brain injury. The brain injury was the worst. Is the worst, still to this day. I’m not as disabled as I used to be but I still have a long way to go. One of the things I have dealt with is severe PTSD. I had to travel 12 hrs. hours to get to Brain Rehab every week. I had to travel on an interstate and it was terrifying. I had severe panic attacks and I couldn’t look at the road so I would just cry hysterically. I didn’t know what to do or how to cope... I had tried everything. After I saw your video I learned that I could cope with the pain and find a way to get from point a to point B without losing my sanity. It was then that I bought myself a big panda bear to ride in the car with and I I asked a sweet girl on Etsy to make me a Pikachu hat so I could have the power of the Pikachu. It’s a big hat that prevents me from seeing out the windows and it makes me feel secure. It didn’t solve all my problems but it really helps and I have wanted for a very long time to tell you how much I appreciate this video and it still remains one of my favorites. I have a good friend who deals with the same disorder you do and today I shared this video with her and told her she needs to get a pig hat to give her the power of the pig just as it had given you power. I hope you are doing well and weathering this pandemic with your sanity intact. I hope you are continuing to build that boss ladder! Thankyou for helping me build a ladder out of my hole. I’ll never forget you. Much love, Heather💓
Thank you so much for sharing this.I also have EDS and I am so grateful when I hear about others with it, or any invisible illness. The stigma is strong, but we are stronger.
Please post more about moving to another country with a chronic illness! Travel is especially terrifying when you're living with a disability, especially one as uncommon as EDS. Sending much piggy love to you!
You are so brave to publish this.
Thanks for all, Martina 💖✨ You are really strong!!
this video didn't make me feel down at all. the opposite, looking at you feel me up with power and optimism. you are one strong woman!
Hi Martina and Simon. I don't have eds but social anxiety. It developed after I finished my masters and was jobless for YRS. Back then I couldnt meet friends or relatives at all, just out of panic and fear of telling them "yep same old joblessness. no development here". It was so bad that I had anxiety attacks even when doing social things I used to love (e.g. rock climbing) just cause ppl were there 'watching'. I have seeked help and have gotten much better. But still have days where my thoughts turn inward and I simply don't want to face the world. Home is my comfort bubble. But you guys are so right... I can see how forcing yourself out, even when your mind is so dark and gloomy, can make you see and appreciate the beautiful things about life. Martina, you're the strongest woman I know. Your heart and thinking can outlift all those crossfit youtubers out there!! Dunno if ya'll ever read this, but thank you so much for this video.
Gonna go build a ladder now (and maybe find a cute fluffy hat too). 😘 ❤🤘
Martina you are so awesome and so strong. You not only inspire those with EDS but you inspire those going through hard times. Thank you for showing us how you get through this hard days and how you stay positive. It's never easy to build the ladder but you show us that's it possible if we try. Thank you soooo much for being such an inspiration. Love you guys lots!! ♥♥
When my depression’s being an ass, I like to bake or cook. I especially like making bread. I love the smell, the kneading, and specially the punching when it comes to making bread. Or I watch Simon and Martina’s videos because they’re hilarious and they never fail to make me laugh.
Thank you Simon and Martina for being the best despite of you both have to go through.
Punching bread dough sounds like a great way to get out your frustration - and also end up with some delicious bread! :D
As much as it broke my heart, I really needed to see this. As I suffer from depression which stemmed from my arthritis I can fully understand your pain. Seeing this video has really helped changed my perspective and I'm going to start looking at/doing things with a more positive outlook. So now I'm going to go out and go for a walk down the canal near my house and look at beautiful nature. Keep going, Martina, we all love you!
Martina, this is the 4th or 5th time I've watched this video. Thank you for being so honest... but when I have absolutely HORRIBLE days I think of you and how strong you are. As someone who has dealt with depression since I was in Elementary School and I really appreciate you opening up because you've helped so many of us.
i've already seen this but it showed up again in recommended and i clicked again. I cried again so much too. You two are always such a strong positive force in my life, and I really hope that ladder stays strong. I've never cared so much about people on youtube before, and you two are truly just such sweet and wonderful and strong people. Thank you so much for being in our lives and letting us in, even on the not so happy videos.
How did these onions get in my bed? 😭😭😭😭
Ugh you're so amazing and really are such a role model. Love both of you so much
cassie middles I know right? It made my eyes water.
I almost never leave comments on videos, but this one moved me to do so. I've been suffering from depression and anxiety the last few months and there are days where I also feel so dark. Today was one of them. When I started watching this video I had already been lying in bed for hours and was contemplating staying there all day. But I'm following your ladders steps. I got up, made some coffee and I'm going to go take my dog for a walk. Thanks for sharing, I know it must be extremely difficult, but know that you're helping others who suffer too. ❤️
Ming Lim I know I'm a complete stranger but I feel really proud of you for doing that ☺. Keep pushing through!
You did so well!!! I'm proud, too. Your comment moved me.
Once depression takes hold it can be really hard to climb out of that hole. I hope you get better soon, if you are not seeking treatment already I strongly advise you to do so. If you can't afford treatment there are some self help books that might help you such as those by David D. Burns . It sounds like you are taking the right approach though, just take things one step at a time. Good Luck !
I'm happy and proud of you! You're doing a great job, keep pushing yourself as best you can. You have us in the comments as believers, and I'm sure your dog is just as supportive.
That's *amazing* I'm so happy for you :) I'm very familiar with those days, days where it's hard to get out of bed and even more difficult to leave the house. I'm very proud of you for fighting against those dark thoughts and proving to yourself, and to your depression, that you _can_ fight this! Fighting depression is a lot of small battles (getting out bed, making coffee, taking your dog for walk, etc), winning even just one of them is a _huge_ accomplishment when you're in that "dark pit." Let's both continue to add rungs to our ladders! :)
Thank you for sharing a large, difficult part of your life with us. It's encouraging. I love the ladder and will borrow it for my down days dealing with anxiety and depression. Thank you, Martina. And thank you Simon for taking care of our pretty lady.
You areand absolutely brave for putting yourself out there! We love you Martina! Keep pushing forward and building a ladder from watching your videos has even helped me with my depression and anxiety disorder as well as when im having a flashback from my PTSD and I definitely thank you for everything that you are doing and have done! Keep pushing forward and building that ladder girl!! We always got you and I know Simon will always be there for you too!
Not gonna lie, I started crying within the first three seconds of this video. This video helps me feel extremely inspired, even though I’m not living with an illness or chronic pain.
It puts everything in perspective and makes everything seem more achievable, since i’m not the only trying to work through things. I’m not alone. Lately, I’ve had goals that I want to achieve, but my anxiety, depression, and fear has been holding me back. I know it won’t be easy and will take time, but I have this video when I need a helpful push. #buildaladder
God i’m teary, thank you.
Lee Hanel Same! Tears just stared pouring from my eyes as soon Martina started talking
Incredible how she can deal with such a horrendous thing that is forever-lasting pain. I wouldn't even wish this to my worst enemy. Take care, girl.
I needed to rewatch this. Thank you for your honesty and methods to deal with pain and depression
Thanks for your positive film. I have mild chronic pain from degenerative disc disease and cerebral palsy. Today was a rough day, I got out of bed, took my meds, talked to my family, took a shower, got dressed, interacted with some friends, ate dinner, filled a physical and occupational therapy papers and watched your film. Thanks for speaking about the ladder, ADLs and ice. Have a great day!
i wanted to write something deep and gracious to express my awe in you both...
5mins later, the only three words i have are "inspired" and "thank you"
You are a strong cookie. I dislocated my shoulder, it popped back in and had residual pain for at least a week. Here you are walking around with a dislocated shoulder for freaking 3 wks. Not to mention the other symptoms caused by your illness. I pray for your continued endurance and a freaking cure.
I know, right?? She's so amazing D:
This broke my heart, and Lao warmed my soul. I love how supportive you guys are of each other.
I love you for posting this. I was feeling so bad and so alone today and it was so nice to see someone go through the same things. I also try to use humor when I feel bad and a lot of people interpret that as meaning I'm fine. I can't put into words how much I appreciate you sharing this.
MARTINA PLEASE READ: I’ve wanted to write you for years. I suffer from a rare disease which is quite painful. It has since lead to my body breaking down and new conditions to rear up. I have an extremely high pain tolerance, so when my pain is at a 10 it literally makes me vomit. It gets so bad that there are times where I want to kill myself. I’ve had every possible surgery, taken every drug they gave me, including experimental treatments. My husband couldn’t handle it and divorced me at our ten year anniversary (we married young). People can’t see my disease, and I’ve learned how to visually disguise my pain... makeup, nice clothes, beautiful hair... 90% of people can’t tell I have 9 serious illnesses. I’m told my eyes are what gives my bad days away. My pain is in the pelvic region and for 3 years I was bedridden. Standing and sitting were near impossible. My depression was immense. I made improvements and had 7 “good” years (relatively). Then 3 years ago a new issue came up, making everything I had before look like a joke. Nobody can figure it out. Nobody can fix it. I spent $18k of my own money since January on “non traditional “ treatments praying something can help besides drugs... Martina, I’ve been a nasty since your early years and Ive wanted to write you so, so many times. There is so much I want to say to you... because I get it. The base of my ladder has been my family. If I didn’t have supportive parents and a sister/brother in law & nephew, I would have ended the suffering long ago. I have to work full time, so I don’t have the luxury of staying in bed on my bad days. And I cannot take all the meds they prescribe or Id be a zombie. Your videos remind me I’m not alone. I’m glad your talking about the ladder. It is a tool that helps. I didn’t have a name for it, I just knew I had to do something. I know you have millions of fans, but if you ever wanted to vent or need someone who gets it send supportive messages, I’m here for you.
Polly Pocket
i don’t know you but you are so strong and im so glad that you’re slowly learning how to build your ladder too
I'm sorry you have to deal with that, I hope this video helped you and will continue helping you. Keep staying strong and best regards!
You're such a strong person and your story is really inspiring. Thank you for sharing and good luck with your ladder
I have multiple health issues and have always dreamed of having such a supportive partner. You are the most loving, patient, and compassionate couple I have ever seen. Martina, thank you for showcasing your strength and vulnerability. You're a force to be reckoned with and are an incredible person and role model. Simon, thank you for giving Martina the love and encouragement she needs. Your strength is also incredible. Bless you both infinitely.
I greatly appreciate this video!! Seeing someone in the daily struggle of chronic pain...not sugar coating it... showing how you deal with the hard days is just what I needed. It's easy to feel like your alone in this struggle. Thank you for being vulnerable! Pray for your healing as well as mine.
For the almost year this has been up Martina there isn't a moment I don't think back to this video. I don't have Eds but I certainly suffer from chronic pain, and you have no idea how much it's helps to see the creator you go to help ease the pain, be open about something like this but still find so many positives, you are such an amazing person and ever since I found your channel so many years ago. I've always strived to be like you, someone who makes everyone else's world so much brighter. you genuinely are one of the best people I've ever seen. even on your worst days your still such an amazing inspiring person. Thank you for teaching me and so many others to build a ladder
Immediately started crying. I can't believe how strong you are. I freakin' love you so much, Martina. You're such an inspiration.
Right?? Not even one second into the video. We all love you Martina, and think you're a strong, amazing human being. xx
i wanted to comment before i watch the video but martina is our universal mom and it hurts to hear our mom is sad :( we love you more than anything martina and by just getting up in the morning we know you're stronger than anything!! :) stay positive
our mom! nah shes too young to be anyones mom shes a great life example and guide
Her mom had her when she was 10
Girl she's like 30.
As a 38 yr old dude shes more like a sister in law.
i know LOL its just like a phrase of affection for me
You have no idea how much i appreciate you making this video. Thank You!
When I have a bad pain day, I come back to this video. Knowing you’re strong enough to get through your struggle gives me the strength to try and build my ladder. 💜 Thank you for being an inspiration. You and Simon are amazing people and your story has touched my heart and made me laugh for years now. I’m a long time Nasty and will be forever. 💜💜
Martina, this video was amazing. While I love how positive you are all the time, showing this side of chronic pain, and the ways you deal with practically, is so helpful. I have EDS as well (though I have the Classical type), and though mine is usually controlled pretty well, this last month has been really had with school and work. Thank you so much for having the courage to share this side of chronic pain
Martina, I have epilepsy which triggers intense migraines where I cannot get out of bed and spend the day crying and holding back vomit. Thank you. Thank you so much, I'm building my ladder. You're a superhero and you are my hero...this year for Halloween I'm dressing up as Martina
Dressing up as Martina sounds AWESOME. 💗💗
::star girl:: instead of Spider-Man we will dress up as the coolest superhero of all Martina! ;)
This actually made me tear up.
Joy-Colleen Murphy that is so sweet.
Joy-Colleen Murphy I am new to the community, but I wanted to say to hang in there. I too have epilepsy but to a brain injury as a baby. I had to learn on my own how to deal with my seizures. I am glad you are finding ways to build your ladder.
Thank you for sharing. I’ve been watching y’all’s positive and real videos and it’s helping me feel less blue and less alone. Thank you for helping me build a latter. Sending love from Louisiana