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Chronic Pain From a Spouse’s Perspective

July 10, 2018

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Hey everyone,

I’ve been thinking about doing this video for a while, but I never really had the chance to, until this past weekend when Martina’s health got pretty shitty. She’s doing a lot better now, today, and we’re hoping to catch up on our filming schedule. At the same time, even though this was a bit of a tougher weekend, we knew how to handle it profoundly better than we did compared to, say, how we handled things a couple of years ago. The more time we spend together the better we understand each other, and a lot of the ways that we grow and change now are with Martina’s condition forcing us to reconsider some aspects of our lives. In the video I discussed three things that have changed in me, in us, as a result, but there are some more ways that I haven’t fully figured out yet, and I think here might be a good place to discuss them and get a better handle on these ideas. Sorry if they’re not well formed, but here goes:

For starters, I think bad health crushes our desire for lifestyles we see advertised in the entertainment industry, of great looks, great bodies, great wealth, and flashy things. We don’t aspire to it because we know that we can never have that, ever, and that’s not a sad thing to say. I think advertising capitalizes on people’s insecurities, and – for us – we’ve become secure in ourselves and our understanding of what we can do, what we can’t do, and what we can enjoy. Mansions and fancy cars aren’t for us. A big house would be too difficult to maintain, and fancy cars won’t be comfortable to sit in. Expensive shoes are too painful. We don’t want it. I know too many people going broke trying to live lifestyles out of their price range. We’ve instead found personal fulfillment in a kind of alternative lifestyle (maybe?), but we do so without the bitterness of “fuck this fuck capitalism fuck the maaaan.” We can’t go out and go whitewater rafting or bungee jumping, but instead we can have a great melon! We can’t travel as much as we used to, but we can enjoy a cigar in our backyard as we look at the stars.

In a related note, Martina’s chronic pain has taught us not to expect fairness. And this is a lesson that’s kinda still not fully sunk in for us. There are still days in which we’ll see other people with good health and think, fuck, why can’t we just do things like normal people? Or some people have terrible diets and do jack shit with their lives and we think, why the hell is Martina the one who can’t get out of bed? The sting of this still bites us some days. Writing that wasn’t easy. But we’re (slowly) learning to accept that the balance of the world isn’t fair, and sometimes bad shit happens to good people. Feeling bad about that doesn’t do us any good in our lives. It doesn’t make our work better, doesn’t make our relationship stronger, doesn’t make us any happier. It’s something we’re accepting, and thinking, hell, we’ve been dealt a shitty hand in some ways, but we’ve also been dealt a great hand in other ways. Let’s do the best with what we’ve got.

The last thing I’ll write about before this whole post gets a bit too overwhelming is that Martina’s health teaches us to be able to make the most out of every situation. I’ve seen in the comments, especially in our last Gion Roiro video, how is it possible for us togo from a fancy meal to convenience store food and be ok with it. If you think we’re food snobs, oh boy, I know some people who can’t appreciate anything that isn’t high end food. For us, though, we find a way to appreciate every situation, no matter how rich or poor, elaborate or simple, in pain or pain free. When we first got married we were super broke, and we made the most out of the discount clearance produce. Now we can have fancy meals, but we still are thrilled to crack open a box of mac and cheese. Similarly, when Martina’s pain isn’t too overwhelming, we can go out and have fun adventures and explore the dark side of Kichijoji and other parts of Japan, but on the days she can’t do much we can still have loads of fun staying at home, playing scrabble, or just watching some Netflix and talking with each other.

I think the common element in all three of these is that we’re happy with what have on any given day. Our days are not going to be consistent, or fair, but we’re happy so long as we’ve got each other.

Ok that’s it!

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Chronic Pain From a Spouse’s Perspective

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  1. Having just discovered your YouTube channel last week (was it only last week? Is it too creepy to say that I by now feel like I had years of food adventures with you?) today’s video was a change but it had an important message and I am very thankful for it. I already commented there on YouTube too that I have a girlfriend who faces a very similar issue (plus we currently live a long distance relationship, which has its own pains).
    I am thankful for a message from somebody with the perspective of a partner, my perspective.

    Next I watched the video of Martina’s bad day and how to build a ladder. Music and happy videos have been a part, so I share with her for the next time it is needed what came fresh into my YouTube queue today. And I could simply not resist the cuteness. I already watched it six times. While here at work.
    https://youtu.be/ZJKByy5vhss

    1 month ago
  2. One of my friends has a husband who also has EDS. I usually share your videos on my FB page because you both are so positive and beautiful and lovable!! But you (meaning both of you) also have extremely directly honest videos that deal with your day to day life. I shared this video today and my friend (whose husband has EDS) was very grateful to me for sharing the video. So I am relaying the gratefulness to you both. Especially Simon, for his positive thoughts, actions, and also especially his words that help others. LOVE TO YOU BOTH!!!!!

    1 month ago
  3. I’m not a spouse to someone with chronic pain but as as daughter I know how that is. Ever since my mom had a terrible fall three years ago she has been in horrendous pain. It’s terrible to see her so upset especially if her arthritis kicks in as well. As an only child, it gets to me sometimes that I need to make sure I set aside money to ensure I can care for her in the years to come. Despite that we take every day in strides and enjoy every bit we can. I love the both of you so much. If you ever need advice (Highly doubt you’ll follow up but hey its worth a shot! :3) I’ll happily give you advice in anyway I can!

    1 month ago
  4. It was like hearing my husband talk about my genetic disease.
    One day, a colleague of my husband asked him why he wasn’t angry about a lot of problems in his work. My husband told him he was not angry because his job isn’t the most important for him. The most important was me. My husband told him that sometimes I could not walk freely or sleep because I had a genetic disease. So he put things in perspective. Work problems are not worth his anger.
    My husband doesn’t understand English very well, so I don’t think he can watch this video (maybe…). Same as you, he doesn’t have people to talk about. He have friends but not friends who understand the full picture of our situation.
    We have financial difficulties because my treatment costs a lot of money. We can’t travel as we want. It costs money and I have a lot of problems that limit the number of days I can stay out of my home. I can’t work. But we are really happy. We are the happiest couple we know. We love each other and we care about each other.
    My husband often asks me if I think there is another couple like us. And I say “youtuber canadians living in japan” every time. When I look at you, it’s like watching us: we have the same complicity. I hope my english isn’t too bad. I was a very bad student in English and I learned with your videos (when you were doing videos in your kitchen in Korea) and with Korean drama subtitled in English. it was a long way but it was more efficient than the university.

    1 month ago
  5. So, I have EDS type III just like Martina. I also have depression and anxiety. I do not think I have a severe case of EDS, but I do have chronic pain. I am always in pain. Some days I can ignore it. It’s not that hard for me to keep going with my life, but other days are REALLY hard. Some days I cannot walk nor move due to the pain. I’m scared of the future because I know this is getting worse. I do not have that many good days as I used to, but I am trying to fight against this and my depression.

    I have a wonderful boyfriend. He is the best thing that could have ever happened to me. He is supportive, he helps me when I am in pain and doesn’t judge me (my family thinks it is all in my head). However, I do not know if he is truly aware of what he is getting into. We are going to get married next year and I’m just worried of his reaction the day he sees me not being able to walk nor move (whenever that happens he is at his place). I do not want to be selfish and “force” him to live with someone who is sick, but I don’t want to lose him either.

    I just want to know, was it hard for you to get used to Martina’s condition? Were you shocked when you first saw that she wasnt able to do some things?

    1 month ago
    • My fiance has EDS type 3 too and I know she worries about things like this. She is in pain a lot, some days are better than others and some days she can barely make it down the stairs. I know her symptoms may get worse too, and perhaps one day a wheelchair might be needed, but I know that no one is forcing me to live with someone who is sick. I consider myself to be lucky; I get to spend my life with a wonderful person who makes every day amazing just by sharing it with me, and I also get to help and support them through the difficult times in their life. I’m sure your boyfriend feels something very similar; you two are a team and he will feel thankful for everything you get to share together.

      1 month ago
  6. Wow Simon, this is a brave video/blog (BIG HUGS!) I know that it can be hard to talk about this topic, even in your light-hearted fashion because you worry about how your spouse will interpret it. Martina is lovely so I’m glad that you are able to feel secure enough to share your own feelings, even if they are not 100% positive – it is very healthy to express them :). Having someone to talk to about this on a regular basis would be a great thing to help release any stress without impacting Martina – if you could find such a situation. There are lots of support groups in Canada, I don’t know about Japan though, they look at this situation differently – culturally-speaking. A social worker or therapist would be the next best thing. Social workers see similar situations to yours a lot, they often have a lot of helpful insight and also know what services are available to you and Martina. Having such a person on hand to call if you find yourself in a difficult situation is very comforting, even if you never need to call them. If you don’t know how to contact a social worker, you can usually ask at the local doctor’s office or hospital. Another comforting strategy would be to find a backup person/agency to temporarily care for Martina if you are unable to – in case you get sick or hurt or even have business to take care of that Martina just can’t attend at the time (ie. travel). You may never use them, but knowing that you are covered in a crisis will allow you to take some weight off your shoulders about your own health and allow you to be a little leeway to take care of yourself if you need it. I think that it would be reassuring to Martina too………………………………………………………………………………….as for fairness, welcome to learning that life ain’t fair XD. Regardless of whatever wealth-spectrum you want to measure success by, you really have to psychologically come to terms with the fact that not having it doesn’t mean that you’re missing out. Every day life is what sets the measure for your happiness, what you remember, what you treasure. Sleeping, waking up and having breakfast, looking outside at where you are, your career, enjoying these day after day is a large part of happiness, don’t discount them. Those who resent not being able to live the celebrity lifestyle are usually unwilling to pay the price to do so. To me, that price cancels out any kind of comfort I might find in living such a lifestyle, this is why most smart celebs make their money quickly and retire to the background young. If you enjoy what you’re doing and can continue to do it, just keep doing it – you don’t need to measure yourself against anyone else, all that matters in the end is your own personal happiness/satisfaction. As for Martina’s pain, all I can do is empathize/sympathize. It’s got to be very difficult. I could suggest (and this is based on pro-advice I’ve been given in a different situation) is that she put aside time, specifically to deal with her pain. Even taking/planning 2 weeks twice a year where she ups her meds to feel a lot less pain but can get a lot of sleep might really make a difference in her outlook and overall health. When I look at the #buildaladder, I think it’s a great motivator/encouragement, but it also seems like a fair bit of pressure to be active when you are able instead of taking some time to rest when it’s easier on your body to do so. If you set aside a time for it, it takes some performance pressure off and can even be looked forward to as a vacation from being active. I know that she can’t heal per se, but sleep and deep pain relief can go a long way towards easing her condition and helping with mental health as well – making it a priority on a plan would take any guilt out of it – maybe during typhoon season? This might be also a good time to test out any backup plans you come up with as she reliably won’t need as much care (since it will be mostly sleepy times). Well, good shooting of this video in a light and peppy environment and the audio was nice and clear.

    1 month ago
  7. I love when you make videos like this, just as much as your beautiful travel vlogs, or drool-inducing food adventures. It’s heartening to hear your truth and how you stay so positive even during crappy things. However, Simon, it may be hard to find in Japan, but a therapist would be a great asset for you to help Martina.

    A neutral party for you to unload your woes, feelings and thoughts to can really help you deal with being a “caregiver” and seeing Martina in pain, without worrying that you’re burdening someone else with your problems. I know it’s helped my husband in dealing with my depression and cancer.

    Anyway, just a thought and thanks again for these videos.

    1 month ago
  8. Thank you for sharing this with us. It genuinely hits me in feels when I read this. I have the same feelings about things that you guys do. Financially bf and I aren’t doing super great, and we’re trying to move (desperately) and it’s really kickstarted my depression. I’m still trying to figure out ways to deal with how badly my mood is effected on my depression days (that’s not even considering my sciatica/migraine flare ups) and I hope I can learn to really appreciate things in life as you two do. I don’t feel I’m at that point yet. I really want to be.
    Love you guys, and i thank you for all the positive you bring into my life on a regular basis.

    1 month ago
  9. TJL

    Hey Simon and Martina, thank you for sharing your life with us and being open and honest about even the toughest of times. You guys are so inspiring and bring positivity to us in the nasty community… I hope I and others can return the positive energy back with big virtual hugs behind the screen!
    #buildaladder

    1 month ago
  10. I wanted to write something profound, but I really can’t think of anything. So I instead just want to say Thank you soo so much for sharing your life with us <3 I know that what you're talking about in this video, and writing about in this post will definitely help me in my life (and probably everyone elses life too).

    1 month ago