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How I Deal with Chronic Pain

October 1, 2017

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Heya,

This post is coming from a different perspective. It’s probably not going to be as coherent as most posts, because it’s tough to write out. You’ve seen how Martina deals with her chronic pain, and what she does when she’s having a really rough day. But what do I do on these days? What can I do as a spouse when I’m watching my wife suffer?

For starters, I really didn’t want to film this video. I know Martina wanted to do it, and so I helped her film, but my instinct is not to grab a camera when she’s suffering. I came up early that day and saw that she was off to a rough start. I brought up a coffee and some ice packs. I reassured her that it’s ok if we don’t film today. We’re lucky enough to have jobs where we set our own schedules. But Martina really wanted to show what a rough day for her is like, in hopes of inspiring other people who have rough days as well.

My instincts are not as noble. I love all of you for watching our videos, really, but the only thing on my mind when I see my wife crying is finding ways to help her out. Nothing else matters. Standing on the other side of that camera was too far from her for me. I felt my heart in my throat. Hell I couldn’t even edit the first part of the video. I tried but just walked away.

Thankfully, I’m not going to have to have a camera between us on days like this in the future, and there will be plenty. We get them every week. It’s tough for us to explain to our friends or to people at business meetings why we have to reschedule, but we’re lucky now in that most of the times people are understanding of our situation. It does really sadden me when I see the acknowledgement in people’s eyes; I see that they’re sad for Martina. Hell, I’m really sad for her too. But being sad isn’t going to do much for us. We’ve got many more things we want to do with our lives, and we’re going to keep pushing forward.

So, on Martina’s bad pain days, we have a variety of options. I first need to assess what’s happening. Where is she hurting. Is it just her upper body, which means she can still walk but will need shoulder support, or is it in her knees and hips, which means we’ll be staying at home instead? Martina gets a little foggy when she’s in really bad pain, so I have to make sure she’s had breakfast so she can take her medicine, since she can’t take it on an empty stomach. Sometimes a massage in a painful area helps. If it’s her hips Martina has stretching exercises that can help. Once she comes downstairs I try to make the place as bright as possible. Closed blinds and shutters makes our house darker, which leads to Martina feeling darker as well. Once she’s had her breakfast and medicine we’ll start icing her up, as ice helps. If she’s ok to head out and work on building a ladder then I’ll apply KT Tape wherever she needs it. If she can’t leave the house I find baths help. I’ll get her in a nice hot bath, which she’ll protest against because baths are SO BORING. And usually after a bath she can take a nap, and I find that she’s a lot better after a nap.

But those are all small tasks I can do. The bigger ones are tough to handle. Especially for Martina, when she’s in pain like this she thinks very poorly of herself. She’ll feel profoundly guilty, she’ll feel like a burden. She’s ashamed to ask me for help. And the challenge for me is to keep on reminding her about the amazing woman that she is. The pain comes and goes. Well it never really goes away. It’s always there. But there are days where she’s a lot more functional, and inspiring, and bright-eyed, and that’s who I married. That’s who Martina is. I need to reassure Martina that her pain days aren’t how I think of her. The pain day is just something we’ll work through together. We’ll go out and build some ladders, and we’ll get her back to her normal self. We’ll get her back to marvelling at big sunflowers, back to looking at butterflies. She’s the most amazing woman I know, and no matter how much pain she is I always see her glorious self shining through.

Oh fuck I gotta stop writing this. This goddamned thumbnail is too sad for me to look at so I’m gonna publish and that’s it. Open emotion time over.

Thank you to those of you who use the #buildaladder hashtag. Martina looks at it on her tough days and feels inspired by the posts you put up, and that makes her want to go out and make more videos and share them with you all. Ok emotion’s coming back I need to be stoic and shit.

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How I Deal with Chronic Pain

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  1. I usually watch the video first, then read the blog post. Today I read the post first because I knew it was from Simon. I have been lucky that I haven’t experienced any long term chronic pain or depression. I’ve had bouts, as have most people, but generally I do ok. I do have anxiety really bad, but I’ve been seeing a therapist and I’ve come a long way. However, my boyfriend really really hurt his back very badly at the start of 2016. It was a soft tissue injury that they could see easily on the xray, which isn’t normal. It still flares up and bothers him even now. So he went through the crazy pain and depression. He wasn’t able to work (he’s a cook), he had trouble doing laundry and climbing stairs, even sitting in the car would wreck him up. He didn’t want to ask for my help because he wants to take care of me, so I think that there was also some ‘machismo’ stuff tied up into his guilt and pain as well (he is a feminist type of dude, but he was raised by a bevy of sassy black aunts, he’s a gentleman to the core)…

    Just in general, your videos have brightened my outlook on life. Sometimes I’m in a situation and I want to say or do something, and I think ‘what would Simon and Martina do?’ I want to be a good, happy, cheerful, and kind person. I wasn’t for a long time. I’m working on it! The both of you inspire me every single day, and I thank you for that.

    As for symptom and pain relief… I know you guys live in Japan so this may be difficult to do… but I really think you should google ‘medical cannabis for EDS.’ I used to be very against marijuana, but over the last 2-3 years it has helped me ease off my anxiety, helped me to calm anxiety attacks, made the pain in my joints lessen (I’m a cook/server, so I’m on my feet all day and have some old injuries that flare up sometimes), and more. It’s NOT a miracle drug by any means, but I think that it can really help mitigate some of the issues you are having. My boyfriend has smoked for a very long time, he has colitis (like a severe form of irritable bowel syndrome sort of), and it helps him with the stomach issues he has. It also helps him mitigate his anger, stress, and his back pain. You don’t have to smoke it, there are oils and things like that you can take (see the videos where people use oil to help with their seizures etc), and even some topical treatments. I can’t speak for the topicals and oils though, I smoke with a pipe and a vape (oil that I vape with a small battery). This is the only thing I have to offer really as far as a treatment goes. I hope you can look into it a little bit.

    Thank you again for the video and the blog post, love you both.

    1 month ago
    • I wish html was allowed in posts haha… maybe to break up paragraphs I should just reply to myself and make a chain. Sorry for the wall of text.

      1 month ago
  2. I can relate. There are some mornings that getting out of bed is so painful, you hold your urine until doing that becomes more painful than the arthritic pain you’re experiencing.

    2 months ago
  3. The day you published this, I watched it right before I went in to work. I saw it (and knew it would be on the sadder side when you mentioned it in your last live stream) and thought “Maybe I should wait until I’m off work and home for the day” because I didn’t want to be upset/ emotional at work since I deal with people all day. I decided to watch it anyway because I always want to watch your newest video the second I see it’s up and I’m glad I did.

    I started crying like 3 seconds in, but the end of the video put me in a really good state of mind for the rest of the day. I got to see a new perspective on how to view the negative aspects of my life, especially chronic depression, which I’ve struggled with for 10 years now, since the age of 13.

    One thing I have always struggled with is having severe allergic reactions to things. I have trouble using things like cosmetics, facewash, moisturizer, lotion, perfume, air freshener and scented candles (both cause my airways to tighten up), fabric softener, scented laundry detergent, toothpaste if it gets on my face at all, the adhesive on certain kinds of bandaids, and sunscreen, which is the worst by far (the list goes on, but that’s what I can think of off hand).

    Every single sunscreen I’ve ever used in my life (and I’ve used just about everything because I, too, am ultra pasty) has caused me to break out in a rough feeling, burning rash that dries out and makes my skin peel, caused me to develop hives and blisters (yes, both at the same time) or caused my face to swell (gotta love not being able to see because one or both of your eyes are swollen shut). The word “hypoallergenic” means nothing to me anymore. Anything I put on my skin or anything that enters my airways is a gamble for me. I had to make the decision to either stay in the beauty industry where you have to wear makeup every single day and expose yourself to various products, or quit. I quit after spending $20,000 on my education, and currently I’m working a crap job I don’t really like surrounded by people that couldn’t possibly care less about their jobs or the people they work with.

    Sometimes I feel like I miss out on little things everyone else gets to enjoy like wearing makeup to your friend’s wedding, covering a blemish here and there, being able to spend more than 30 minutes in the sun without being burned for 3 weeks, or having clothes/ sheets that smell nice. I’m guilty of throwing some pretty serious pity parties for myself, but seeing you, Martina, and the pain you deal with day to day made me realize just how good I really have it. I at least have the ability to prevent my allergic reactions by greatly limiting what I use on myself/ what I allow into my environment, and you’ve made me much more grateful of that fact.

    Thank you, thank you, thank you for putting this out. You wanted it to have a positive impact and it did :3 I adore you both and can’t wait for your next video!

    2 months ago
  4. Some people are so unlucky with what they inherit; they get either one bad disorder or catch several lesser ones who together still can make life rough. Thank you Martina for being so open and insightful about your struggle and how you cope with it, though it is hard to watch someone suffering in obvious pain :( But it will serve to help people understand what chronic pain does to someone. And most importantly, a sort of step by step guide (quite literally) how to keep going despite it all. It may be easy to overlook how vital it is to see an entire ladder described; it has way more effect if you are conscious of what it is that helped you and what else to do to keep moving (if I just do one thing and not build on that with other steps, it isn’t always enough to lift me up/distract or simply will not fill my day).

    While there does not seem to be anything to effectively really help EDS, maybe a form of CBD and/or THC may help alleviate some symptoms, side effects (not the EDS self)? Or maybe it might be of use to some of the people who post here. It is used by some to treat (to some degree) depression, epilepsy and rheumatic pains (maybe other stuff as well, I’m not sure). Then again, I am not that knowledgeable, or an expert, and everyone has their own ways that works specifically for them; they know how to deal with their physical and mental well being.

    Also thank you Simon for your side of the story. It is good to hear your thoughts and feelings as well. You may not be able to take her pain away, but you are in tune with what might help and what she needs of you, even if she does not wish to burden you. That is a great partnership. Not in every marriage do the spouses complement and support each other that well, regardless if one of them has health issues or not.

    2 months ago
  5. I know you’ve probably got a ton of comments and emails and everything else about this video, but after many many many tears and watching this over and over again, for the first time in my seven (holy crap seven???? it’s been that long???) years of following you guys, I needed to make a comment.

    I’m 24 years old and have been dealing with severe depression and anxiety basically my whole life. The past few years though, my mental illness took a very steep turn, I started having daily panic attacks which would get my heart rate up so high my resting heart rate would be over 200bpm just from sitting being anxious, my depression got so bad my body would physically not cooperate with my mind and I would be stuck in bed for weeks. It got so bad I had to quit my job which was one of the main stressors that added to this sudden increase in my symptoms. I started going to therapy a year and a half ago despite some major phobias due to past experiences and have started medication but in the year we haven’t quite found the right mix.

    Without further delving into the ‘woe-is-me’s, because this is not what this comment was about, I wanted to give an extremely teary-eyed thank you.

    It’s one thing when someone tells you do start off small, when someone tells you to get yourself outside and take a walk when you’re feeling at your worst, and it’s another thing entirely to actually witness it. I am so in awe of your strength Martina, I don’t have a chronic pain illness, only my own chemical imbalances and watching you power through both EDS and depression is genuinely inspiring.

    This video happened to come out on one of my worst days in awhile, and I was lying in bed, watching on my phone and thinking to myself, “Wow, I wouldn’t be able to bring myself to be able to get out of bed, let alone get outside and be around people” and then I wondered, why not? If Martina can drag herself out of bed on a horrific pain day, if she can get out there and make her day even the tiniest bit better, what excuse do I have for just sitting here?

    Your videos have always helped in making my days a little bit brighter, even all the way back to the very first WTF video in Korea. I’m so thankful to be able to have this particular video to look back to on those days when the world doesn’t feel worth fighting through anymore.

    Martina I am so, so incredibly at a loss for words for how amazing your strength is. I’m so thankful you have that strength to push through, because of all people who deserve to be able to punch a bad day in the face and say “no, I’m going to feel better”, it’s you. I’m so thankful to the both of you for having the strength to create such wonderful uplifting videos despite the fact that you struggle with these things.

    Thank you so much for showing me that I can get better, that I can do things to make a day better, that I can celebrate even just managing to crawl out of bed.

    2 months ago
  6. i love this video.
    i think about you two and your channel a lot. you’ve both been such an inspiration in my life since i found you, maybe nine years ago now. your videos have always been a constant source of happiness, entertainment, culture, and creativity. and especially with videos like this, strength, motivation, inspiration, and love.

    i think you two already understand the importance and power of your videos, and that’s why you choose to film even the bad sides of life, but i think it’s still worth recognizing how strong you both are for this video, and each and every video you create. this video is very important. thank you

    2 months ago
  7. My heart really went out to both of you when I watched this video. I understand that it was hard for you to make it, but I am so glad that you did. Too much of what we see on social media these days is people presenting their lives as perfect and happy and people think that they are the only ones suffering. What you did shows people that they are not alone.
    It was brave. Thank you.

    2 months ago
  8. Thank you for this. You are so strong! It was eye-opening for me as I too need to learn how to build that ladder. Keep being positive and strong :)

    2 months ago
  9. Keep building that ladder! Sending positivity waves and hugs! :)

    I don’t have EDS but I have a prosthetic leg (I was born without my right leg from the knee down) so I have days where I just did too much, I won’t be able to walk for days due to the pain. Today I’m not able to walk for the second day due to the pain. It’s really hard because I used to know what I could do but now, as I am getting older, my body is deteriorating. On days like this, I remember that it’s better to have done something you love doing and be in pain, than do nothing and still be in pain.

    Anyhow, I just wanted you both to know that you’re amazing and loved! Thank you for making the interwebs a brighter place, even if you’re going through some tough times yourself! ❤️

    2 months ago
  10. I know it must’ve been hard to film this video, but im incredible proud and incredibly thankful that you did it. You really inspire me to not let myself hanging even if i feel like i cant take pain/hurt anymore. I always look up to you and set you as an example for myself. I know that you also must have days where you cant give yourself that push that you’d need to turn the day around and start building a ladder but i think those days are also part and are also okay.

    Just thanks, for reminding us and yourself how important it is to turn the light outwards where it can shine and brighten our day instead of letting it die down in our own negative thoughts..

    You go gurl ♥ i send everyone hugs that reads this.

    2 months ago
    • Also Simon, you are really an angel of an human being. ♥ You are always out there rooting for your love.. you are such a lovely soul

      2 months ago
  11. I absolutely love this video Martina! I defiantly need a “ladder” in my life. I have Fibromyalgia. I have good and bad days like you must. It is a great idea to use tiny incentives or steps. It is hard for me to make plans and keep to them because I will wake up so painful and not able to even get changed on time. I was wondering if this ever happens to you? Have you ever had a place and time picked out to maybe go shoot somewhere and you were too painful to go? Thank you for sharing something so personal and helping others! Ps. Hi Simon! I am a loyal nasty! Thank you! -T’ana

    2 months ago
  12. This is my first time posting a comment, even though I’ve been watching your videos for the past 5 years or so (I’m really shy). Anyways, you guys have always helped me get through the hard times. I hit a really deep depression about 4 years ago, and have been building my ladder ever since. Between long lasting injuries, eczema on my hands, general anxiety and severe depression, it has been a really hard four years. Through all of that, I’ve been able to rely on your videos to help ease the pain a bit, and I just want to thank you. Thank you two for being such wonderful people, you will never know how much you have helped me. Some days your videos were the only thing that made me feel less alone, and made it possible for me to find a shred of happiness. And thank you for sharing one of your hard days. I find with all the social media platforms, it’s easy to get swallowed up in the idea no one has hard days, and that you are all alone, but it isn’t true. I’m not alone, and neither are you. We just need to keep building our ladders, one step at a time.

    Number one thing I do on my shitty days:
    Make an accomplishment list for the day. Rather than focusing on what did not happen, I try to focus on ANYTHING positive that did. Sometimes the list is just that I got out of bed, brushed my teeth, got dressed. Sometimes I put things like “listened to happy music”, or “got a load of laundry done”. It could be the most mundane, seemingly easy task, but on those days, it is an accomplishment to be proud of. And if nothing gets done, that’s ok too.

    Anyways, thank you so much, love you guys lots, and hurrah for the small steps in the ladder!

    2 months ago
  13. Thanks for this. I really needed this video right now (I cried the whole way through). I’ve gotten myself into a pretty bad depression lately and I’ve been having a hard time trying to figure out how to get out of it. It’s like I just forgot how to be happy. My sister has been a big help in keeping my head above the water so to speak. She has informed me that I am not allowed to listen to dark music anymore. Everyday I need to play something peppy. She has also made assignments and deadlines for me to work on my art. It’s funny how you slowly stop doing the things that made you happy. I think I gave up because no one seemed to be interested in my drawings or photos, but I have to remember that I’m not doing it for other people. I’m doing these things for myself because they make ME happy to see them. Anyway, I’m not out of the dark yet but I’m trying and I figure that’s what counts. Thanks for being an inspiration to me on so many levels! Lots of love :)

    2 months ago
  14. Guys, I know it’s hard for you to publish those videos, but I wanted to say these are super helpful. Actually, your very first TL;DR about chronic pain helped me realise that I was dealing with it as well, and had me seek medical help. I’d been living with increasing pain for a couple years, but the reactions of the people around me just had me think that I wasn’t good enough at dealing with it, that it was me the problem, and well the fact I have a phobia of needles always makes it hard for me to go see a doctor. But after your video I did, and even if it took a couple more months to get an actual diagnosis (and another year to find out I’d suffered from some sort of psychological trauma/Ptsd for about 20 years, which didn’t help -.-) it helped me find a serious and comprehensive doctor, a great physio, counselor and osteopath too. And no needles were involved! Yoohoo!
    Seriously I stopped thinking about anything when I wake up in the morning. Somedays I’ll just feel horrible but after a couple hours I’ll find I can have a normal day, other times I feel fine when I wake up and then acute pain or dizziness come kicking in (I have neck vertebrae issues, among others) and I can’t do much more than shower and eat. So I just tell myself that I have to get up, have a meal, and only then do I think ‘so how do I feel today? Can I go out or will I listen to my favorite travel show instead?’ And tea time is always the highlight of my day, no matter what my situation is. I always make sure to have yummy stuff in my house :D
    Thank you for sharing these videos with us, you two are amazing persons and one day all of us spoonies and their helpers are gonna take over the world muahahahaha!!!! Stay strong and positive everyone <3

    2 months ago
  15. I don’t know what to say other than I love you guys so much! I was literally looking for something to bolster my spirits so that I will get out of bed. Your videos are usually my first stop :) but my phone only had 5% battery so I knew that I probably could only watch one. I was going to watch an oldie-but-goodie but I just watched this one instead and I’m glad I did. I wanted to reach through the screen and do SOMETHING anything to help. This reminded me of the helpless feeling my family and friends feel when I’m in pain. My mother told me one time that it is actually selfish to deny people’s help so I reached out today and asked for some coffee. This is a small task that means so much to me and to the people that feel helpless. It made me feel better and so do the others around me. Thank you so much for posting! I know it’s hard but it helps so many people. Here more love and a virtual bear hug <3

    2 months ago
  16. How I deal with my chronic pain:

    Part of it is prep. Since moving to such a humid country (Japan whyyyy) I check the humidity forecast. I learned that since I am from a super dry climate, the humidity has made my joints more lax. It helps me know when I might have a tougher day. It’s not a guarantee as I can have problems from many things. I also stretch gently twice a day or as needed. Sometimes I just have to find out the hard way what makes things bad. If I do a lot of repetitive motion I will injure a joint. I hurt my finger turning the bath knobs, i can’t hold a bag staight down or it hurts my elbow…it’s frustrating, but knowing what hurts and what doesn’t helps me try and prep the things that do work. my muscles are good, ligaments bad. So I’m super strong unless it’s a weakened joint.

    The emotional part is the hardest. When I’m having a bad day I can’t talk to others about it, and i don’t want to let people at work know. My health gave my company a reason not to promote me even once over the past two years. (it’s not due to incompetence or disagreement, i am a well liked highly sought after contract teacher who is always fully booked). It’s frustrating, but I feel like it is really cultural for Japan. It makes it hard to talk about there, and so I do feel isolated from it. What has really helped me is to help my other gaikokujin bud, who has trouble due to her various food allergies. I can’t always fix me, but supporting her by reading labels or finding vegan ramen (seriously btw thanks!!) makes my bad days better.

    I fail sometimes though, and when I can’t leave the house, I paint, draw, knit, or do something creative. I get something done, and those little accomplishments really make me feel like that day wasn’t a waste. I had a super bad day recently, and all I did was watch the new Star Trek, and then I watched it with Klingon subtitles… Next time I’ll try getting dressed, I’m bad and I stay in my Pjs hahaha -_-… Also, I know where u got that pig hat :P

    #buildaladder

    2 months ago
  17. This is my first time commenting on a Video/blog post and I would like to say Thank you.
    I know it must have been hard while filming. My Twin sister has chronic pain. These types of videos helps keep people with chronic pain stay motivated and positive. My sister is a Spoonie -she has chronic pain and we both have been subscribed for a while (2013) and we love your videos.
    I know that because i dont have chronic pain I wont really know what shes going through or how to show her she can push through during tough times – its not the same if you dont really know what someones going through so I just always support and try to help in anyway i can – even if it feels like its not enough. These videos really let her (and other spoonies) know that they are not alone and that she can build her ladder and do the things she wants too.
    This is a long comment – We really enjoy your videos. Thank you for being awesome! Love feom Fiji!

    2 months ago
  18. I’ve watched EYK vids since 2012, and it’s seriously been on playlist repeat on the days that have been super hard for me. I live with chronic pain too, but when I moved to Japan the pain increased steadily. The humidity here is so drastically different than my northern desert, it makes rainy days so difficult for me. I stuck with it because it was a massive dream to live in Japan. Thank you for sharing some real tips, and some real feelings. I am proud of you two, and will forever watch and love.

    See you at the fan meet! I’ll show you my KT tape if you show me yours ;P

    2 months ago
  19. Thank you so much for this video. I imagine that it was hard to film and make, but I am so glad that you are putting content like this out into the world. I cannot thank you enough <3 #buildaladder

    2 months ago