Music to my Ears

Today I listened to music. My music. In my house.

That sounds like not much to most everyone, but it is huge to me. I haven’t put my studio music on for ages. It’s all the stuff I listen to when I’m deep in an art trance for hours at a time. I haven’t painted like I used to since I was diagnosed, and a part of me has felt like it is wilting as a result. Having five or six creative outlets at one time has always been a part of my madness!

Lately it’s a daily struggle not to wear my chronic fatigue, fibromyalgia, potential MS, and that pesky anxiety, and wrap myself up in them like a big ugly blanket. Some days are definitely better than others, but as anyone with a chronic illness understands, “better” does not mean that my pain is actually gone or that I should push myself to my limits and beyond just because my body will allow it temporarily.

So there’s obviously a balance to be struck here, and I have to confess that I haven’t completely found it yet.

I have a feeling I will always be looking for balance in my post-chronic-illness-life. That’s okay, because so is anyone out there who is paying attention! That’s what chronic pain does, it’s like an alarm system where the sensitivity is set way, way too high inside your body, but it makes you notice things other people forget to take into account.

This morning a nurse compared my chronic pain to high blood pressure. I was annoyed at first, but then I heard her reasoning and I melted. She said that just like in high blood pressure, where one system in the body is set on high alert, so too is chronic pain a system that is over-active inside our bodies. Suddenly it felt like all the weight lifted off of my shoulders: all the stigma I had directed at myself for not being able to beat chronic pain with willpower alone was gone. It takes years and years of effort to completely cure oneself of high blood pressure. I know because I have spent the last ten years doing just that, and succeeded, in the midst of chronic illness, even. I had a bad reaction to taking birth control, and seemingly permanent hypertension was the repercussion. It is not a clean & clear cut path to beating hypertension, it takes a multi-disciplinary approach to actually get rid of it, and then it takes maintenance to keep everything running smoothly even after managing to get it into remission. I still have to take it into account all the time. Comparing the two actually made so much sense to me that I was in tears, thanking the nurse for her perspective and the weight that had lifted off of me after years.

In celebration I am listening to music I haven’t listened to in almost as long, music that has always gotten my creative side to come out and play. I am hoping that at some point tonight I will finish my boyfriend’s homework (busywork about grammar, which I asked to be able to do so I could re-learn all the rules I have forgotten) and then I can pick up a paintbrush or a sponge and get myself covered in paint, gesso, and paper scraps. Here’s hoping! 🙂

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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.

2 responses to “Music to my Ears”

  1. abodyofhope says :

    Congratulations on music!!!!! I do understand how huge that is. Wonderful!! Music is so good for the soul and I hope now you feel more uplifted being reuinited with your tunes.
    I have been off music for over 3 years now bc of my head many issues so I get that longing for music.
    Enjoy your songs 🙂 🙂 🙂

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Thank you so much, having someone understand what is means to listen to music for the first time in ages makes me sad, because I wish you could listen too, but I am very appreciative that you actually get what this means. The average healthy person would probably not be able to understand how these “little” sacrifices we make because we are ill add up, and even little things we have to give up can take a big part of us with them. It’s crazy that when your system is overwhelmed or the autonomic nervous system is damaged or malfunctioning, even things you have always loved and considered soothing or cathartic, like music, can become noxious stimuli and cause pain.
      Hope you are having a day that is gentle on you and filled with extra spoons. ❤

      Like

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