Fibromyalgia | 15 Years Later…

Orchid and Droplets

Recently, as in today, I have been listening to the music of Wardruna, a Norwegian band focused on sharing Old Norse traditions, reclaiming it from those who have misappropriated it. Let’s make it quite clear, I am rather ignorant of many aspects of Old Norse traditions.

The closest I came to learning anything about Old Norse tradition was taking a course on Germanic languages (thank you, Professor Robinson) and studying the rune poems to learn about the runic alphabets. That’s it.

Still, I found myself entranced by the voice of Einar Selvik singing the poem “Völuspá,” which tells the Norse creation myth. Certainly, I understood nothing of the words, but the passion of his voice brought tears to my eyes. Such is the power of music.

Völuspá tells not only of the birth of world, but also its death and rebirth.

Fifteen years ago, I realized that something was terribly wrong. I felt tired, sick, and in pain. For two years, I searched for an answer. At various points, I was convinced that I was just psychosomatic, it was all in my head–it didn’t help that my doctor was dismissive of my condition and did little to help. Ultimately, I learned the name of my condition: fibromyalgia.

I wrote quite a bit about my journey with fibromyalgia between 2011 and 2015. For the past six years, I have remained relatively quiet on the topic and this blog for a variety of reasons. However, I would like to share with you a little about my journey.

Contrast Petals

If I think back to 2008, when I first received my diagnosis, my mind immediately remembers the laundry list of medications I was asked to take just to function. I spent more time at hospitals and clinics than at any other time in my life. I joined a support group that caused me to realize that there was some other way that I wanted to live…

I wanted to find a path to living a life that held meaning to me and not one defined by my illness. I believe I found it.

I became vegan (now pescatarian), started meditating, doing yoga, and taking walks regularly, and began scaling back on the medications I was being asked to take. Ultimately, I went from taking approximately eleven medications to taking three. And for the past four years, I take only one…and it’s not for fibromyalgia. Instead, I go regularly for acupuncture or massage to help with pain management.

Choosing to Do Things Differently

Living with fibromyalgia means living with uncertainty: uncertainty of what one can do, how one will feel, etc. It is understanding that one’s sense of self-efficacy will be shaken if not shattered. There is nothing quite as humbling as waking up to realize that one can neither move because of pain nor remember a particular word (or two) due to brain fog. One’s body can become an enemy as it seems to work against one’s mind. As a result, one’s self-concept may begin to unravel–it certainly did for me.

I’ve spent the past decade redefining myself, constructing a new self with the fragments of self that survived pre-fibromyalgia, filling in the missing parts with who I have become. Certainly, everyone changes over time. However, developing a chronic illness in adulthood, in particular, means having to accept a change in a well-established sense of self-concept as well as deal with the potential fallout of being ill. A long-term battle between who one is and who one used to be can ensue.

Blossoms…Warmth

So, what can you do?

Choose to experience life differently.

For a long time, I was unhappy with my very nomadic life of living for only few years in any one place. However, now, I believe that my nomadism has been beneficial to my understanding my life with fibromyalgia. With each new place I have lived, I have had a chance to experience the world in a new way. Eventually, I came to the thought: why not remain open to experiencing myself differently, not just the world?

The challenge was no longer to hold on to an old concept of self, an old identity–it was to see and embrace a new aspect of self. Who am I now? How have I changed? What have I learned? Where do I want to go now on my journey?

Choose to ask yourself questions that open yourself to a newer you.

I realized that there was nothing to fear in being different from who I was. In the uncertainty of my condition, I found certainty. Having fibromyalgia has taught me (repeatedly) to be mindful of my physical and mental limits. It has confirmed for me certain goals and allowed me to discard others. I have become a kinder person to myself. Also, I am very curious about how my illness will continue influencing my perception of the world around me.

Remember: be who you are, embrace who you will become. In the interim, work on creating a life full of meaning for you. Let it be a life not defined by, but informed by your challenges.

Look forward to your rebirth.

Until Next Time,

Diedre

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