Suffer Well

Does anyone else accidentally assign music to certain periods in their life?

I’ve been doing that since I was… little? Like 9 or 10 at the latest. It used to be that I would pick a song that reminded me of a feeling I had while reading a book. I was reading a book a day, sometimes more, and each novel got its own song, and those songs served as really great triggers to remind me of the entire plot/emotions of each particular book. I don’t do that anymore, but every month or so a new song or an old one will float into my subconscious and stay there, playing on and on. The one that keeps getting running through my head right now is Suffer Well by Depeche Mode.

Yes, I have always had this affliction for Depeche Mode, The Smiths, The Cure, New Order, Joy Division, Bauhaus, etc. Classic goth music. Sleek, a little shiny, still as awesome as it was the day they conceived it. Make fun, I do not care! 🙂

I have loved this song forever, well, since 2006, when I was still in high school. But last month when I started listening to music again, I found it on my ipod and Dave Gahan and I got reacquainted. We warmed up to each other pretty quickly, I remember how I felt when I first heard it, all my suffering was psychological and stress-induced at that time, and my take on it was more about my how the antidepressants I had just been told to start taking were fucking my body and brain up in ways I hated. Now, listening to it again, I found something much more positive in this track.

Dave Gahan sings “Just hold on…. Suffer well. Sometimes it’s hard, so hard to tell.” Amen.Yes. It is hard to tell. I feel like people should be able to see the pain in my eyes or all around my body like fire, but they cannot. Only if I start acting off or unresponsive does anyone catch on. I’m still not used to it, I don’t know if I will ever get over feeling like it is arcing off my body, surrounding me in a fiery red that people should be able to see from a distance. The pain is so overwhelming that I keep thinking it must be visible, somehow. I stare at my betraying limbs, wondering how something that looks normal other than the spasms and twitching could possibly cause so much pain, and how, how, how can it look so normal?!

Lately my body has been plagued by infections I am having trouble getting rid of, but which I refuse to treat with western medicine yet because I know my body will eventually fight them off, naturally and more healthily than with more pills than I already take. One after another the severe infections appear, and then when I think I’m done with them, the cycle seems to start over, all over my body. I make progress, slowly, until I get sick or knocked down by a flare up for a while and my immune system tanks. I know I will prevail if I take care of myself correctly. It’s a learning curve.

This is where I take a page from an excellent Depeche Mode song, and try to suffer well, since the suffering seems quite inevitable right now.

I will also strive to care less that it is so truly hard to tell how much pain I am in. I am smiling on the outside, so I cannot hold those who mean well around me accountable. That is what words are for, after all! Definitely something for me to work on in the future!

I hope that if you are suffering tonight, you are enduring it well. I know that sounds odd if you haven’t been dealing with a chronic illness, but all my fellow spoonies will understand that I mean it with all the love in the world. Our suffering is not always avoidable, but we can choose how we handle it with practice.

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

14 responses to “Suffer Well”

  1. Moongazer says :

    Oh you are a girl after my own heart! My life has a soundtrack 😀 although this year I have had a very on/off relationship with music due to the end of a relationship.
    But I am absolutely delighted by your music choices. I was a goth when all those bands were around 😀 My absolute favourites are The Mission – Gods Own Medicine era 😀
    I once saw The Cure live at Camden Palace but they were dreadful LOL
    Xx

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      No kidding?! That is amazing, you are awesome! I’m so glad we met! 😀 Totally made my day that you dig my not-so-secret-secret music obsessions too!
      Thank you for the music suggestion, I’m off to find The Mission! I can tell this is the start of a great friendship! 🙂 And I am surprised to hear that the Cure sucked… but then again, not surprised. That’s happened to me so often where the expensive big name shows are a total ripoff and little intimate, often free shows are the best. I can’t go to shows anymore, and I miss it, my adventures into live music were pretty short lived, but enjoyed to their fullest! 😀 Many good memories now to sustain me.

      Your new soundtrack will emerge when it’s the right time! Music isn’t something that ever leaves you completely, even when you take a long break.

      Liked by 1 person

      • Moongazer says :

        😀 I used to love live music too, although from the age of 19 I lived too far from any venues 😦 It’s 8 years since my last live show 😦
        The best song The Cure did was the encore – Do you wanna touch? The Gary Glitter song. LOL
        I hope you like The Mission. You’ll probably come across them as The Mission UK. A US band claimed the name, so they had to differentiate by sticking UK at the end. Absurd!!
        All About Eve were good too. Esp their first album.
        I have “Wasteland” (1st track on God’s Own Medicine) running thru my head now!! Think I might have do go find my ipod 😀
        Thank you xxx

        Liked by 1 person

      • Moongazer says :

        Oh, oh, oh – if you haven’t already, you must try Killing Joke! I’m sure Adorations is on youtube. BIG songs!! 😀

        Liked by 1 person

  2. abodyofhope says :

    You have a warrior chant. That’s like an ancient thing that warriors from every era and part of the world and tribe have always done. Depeche Mode’s “Suffer Well” is so fitting. Music is always therapeutic.
    I can’t even listen to music any more, but I always have a song inside of me that helps me along.
    These infections you are having sound very scary. I’m sorry you’ve been struggling so.
    I like the changes to your page.
    ❤ ❤ ❤

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Warrior chant is right! I never thought about it like that! I hope that someday again you can listen to music, but I am glad that in the meantime your soul is full of your own songs. ❤
      I almost didn't want to share that bit about the infections, I don't want to scare someone who is newly diagnosed (and it honestly could be unrelated to the CFS/ME or the Fibro), but my skin is literally falling apart. It's not pretty, it used to really scare me, but not so much anymore, I'm learning to roll with all this extra good bonus sickness stuff. We don't know if it's caused by an infection or a group of infections, or if I just have weak and fragile skin that tears easily and no immune system or ability to heal myself. I think it could be related to Ehler-Danlos, but my doctors are completely ignorant of that one. They keep saying it's very rare and I would be skinnier and taller if I had it. I am like "Whoa, wait, are you talking about Marfan's Syndrome? That's different!" and every time they *are* talking about Marfan's and I can't get them to understand how much pain my flexibility/loose joints causes, how much I dislocate/sublux hips, shoulders, ribs, collarbone, vertebrae, ankles, thumbs, toes, EVERYTHING dislocates, and it's been going on so long I just make this weird noise involuntarily and either force it back in place if I can, or go back to what I was doing. It's almost brainless now, it only really bugs me when it means I end up falling down.
      I have had a few extremely painful and one permanent dislocation (my shoulder on the right side will not stay in place no matter what), so the likelihood that all these infections/skin problems is made worse by a collagen disorder makes a lot of sense.
      I fit the criteria for EDS 100% but that doesn't seem to matter. I was born rare, lol.
      Only one in 20,000 babies is born with a dislocated hip, and I was born C-section with TWO dislocated hips, three weeks early. Rare.
      Only one in 10,000 babies is born with Spina Bifida. Rare.
      Also a congenital heart murmur. Rare.
      I was the bendiest gymnast in my entire county and any other team we competed against. Rare!
      So something being rare is not an excuse to not test me for it.

      I will keep trying to get some health professional to listen to me on that one… even my boyfriend thinks I probably do have EDS, and he hates when I self-diagnose even casually anymore.

      Thank you for noticing the changes, I’m liking the layout a whole lot and the font, but the boredom factor is huge so I will try to spruce it up a bit/make my page less empty. I am burned out and in a weird fuzzy hazy brain-fog plagued place right now so it could take a while!

      Love you, sorry that was such a long ranty reply!!! ❤ Thank you again for adding my article to Amy's Fibro News. You rock!!! ❤ <,3 ❤

      Liked by 1 person

  3. abodyofhope says :

    I just wanted to let you know your article got picked up by an E Magazine: http://paper.li/fibroflr/1302478958#!tag-spoonie
    Congratulations!

    Liked by 2 people

  4. abodyofhope says :

    No, I just Tweeted it and she really loved your article enough to add it 😀
    When you described your skin falling off and your joints popping, my body made this uncontrollable churtle sound. Uggh!!! You really do have EDS girl. I know so many ppl with it because I have POTS and you actually probably have THAT too because of the EDS- I’m sorry :,(
    Tall and thin… That one made my body do a thing that sounds like a single chuckle.
    I wasn’t born with all of those rare things and they aren’t testing me for the obvious things that it seems I have either. It took years to get the POTS dx. I have this theory that if you already have ONE diagnosis, every other problem just gets swept under the 1st dx rug. It’s a hot chronic mess!!! I write about that a lot. It makes me nuts since having more issues the past few years.
    “Oh, your arm is rotting off? Well, your chart does say you have a migraine disorder, so….” Lame.
    My husband is super sick of my ideas about what I MIGHT have also. But if I don’t research it, who will? Or just give me more pills instead of answers. :/ 😦 (No thank you, sir.)
    This past year, no one was being aggressive with HIS health, and I ended up calling his diagnosis well before any of his doctors did. Write the check to…. 😉
    You can decorate your page like decorating for Christmas!
    Hope you have a good weekend. I needed to rant. Love it.
    (((hugs)))

    Like

  5. The Mama With Bipolar Disorder says :

    Love Depeche Mode ❤

    Liked by 1 person

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