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Fibromyalgia – The Art of Care

Inclusion
September 21, 2017
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September 26, 2017

Fibromyalgia - The Art of Care

By: Nell Rousseau

Four years ago I was a 28 year old freelance model and that summer I toured the NW through SW and back again solo while traveling between the two weddings of four of my closest friends.

After returning briefly to Seattle, falling in love with whom I thought was a wonderful musician and fellow artist, I disembarked once again, this time to Burning Man having had a decade pass between my last attendances. I knew I’d have friends there; I had a ticket through a friend who put me in touch with a ‘Plug and Play’ that needed kitchen staff. Why not? Right?!

Three days in I experienced severe heat exhaustion. I was taken to the central med tent three times. While the man burned that Saturday night I sat in the med tent hooked up to my third IV, not my last, while I cried intermittently. I had to be carried to the bathroom because I was too weak to stand on my own. The most painful thought which sent me into hysterical fits of tears again and again was simply admitting to myself that I needed other people’s help, that I alone was not enough, and the feeling that I was a burden to others.

After all, I was fierce. I defied stereotypes. I was strong and smart and independent, radically self-reliant...But I was, I am, still human and I was encountering the thing I feared the most, my own fragility. I did find, however, not being the only person distraught in a medical tent, that when I could comfort those around me it brought me some relief.

"I was strong and smart and independent, radically self-reliant"

 

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When I returned home I felt exhausted beyond words. My body felt like a heavy weight hanging on my bones, aching. In the days after my return from Burning Man I felt like I could barely get out of bed. I would be overtaken by vertigo and would have to lay down after the simple act of making a sandwich, after standing upright to do so. I made a doctor’s appointment and I remember for the first time hearing the word Somatic being used to describe my condition. I wasn’t upset but I was confused.

I could feel something was distinctly wrong and yet the only thing offered to me was OTC pain medication and “happy pills”. I opted for the ibuprofen and NSAID roulette and began the next part of a long and daunting journey. My relationship failed, as I was unable to provide continuous approval and affection to another person. I needed more than anything to get on my feet, eventually coming to stay with a friend while I made a shift in career, something more stable and routine to help me get my feet planted back on the ground.

I changed occupations to work where I felt the most need and found working as a Nurse Assistant very rewarding but also very physically and emotionally taxing. My self-care was in a constant ebb and flow. I did my best to rest as much as possible when I could and was constantly ingesting green juices, vitamin cocktails, 5hour energy, coffee and energy drinks in rotation, and a constant rotation of NSAID's and ibuprofen of which I was maxing out on for months.

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I attended yoga classes and went to the YMCA to get cardio and other exercise. I went from one job to the next until I settled on two of the best Nurse Assistant positions available in Seattle in two of the best senior communities. I worked hard and was reliable. I enjoyed my work and was thoroughly good at it but I was still just barely keeping my pain manageable.

Eventually, after barely abating pain or being in pain chronically for another year I agreed to take one of the medications for depression. The assumption from my doctor still being that the pain was only a somatic issue caused by a perceived underlying depression catalyzed by my traumatic experience. The drug appeared to be helping some; at least I was a bit perkier which was distracting from the pain at best. I was feeling the necessity for more change in my life as a Nurse Assistant only allotted me so much opportunity for growth in my career and while I enjoyed caring for people I knew I needed to go further in my career to be fulfilled.

Massage Therapy was an interest of mine since I graduated high school and attempted it the first time at 17, eventually I enrolled in classes at the Cortiva Institute. My first term in school I managed straight A’s while working both jobs. The second term, however, something shifted and my energy became fickle, fatigue episodes where getting worse and I was starting to skip classes to rest some nights in an effort to keep up with demands. I read about Fibromyalgia as a case study and when I presented the similarity in symptoms to my doctor she did a tender point test and agreed it was my condition but had little she could change in my care routine to assist.

Then, it hit me hard; the “happy” medication induced my first outright manic episode. I couldn’t sleep more than four hours, if I was that lucky, for two weeks. I was advised to discontinue my medication by my doctor and try something else. I had also been taking muscle relaxers as prescribed to alleviate some discomfort and help with rest, eventually I was told to discontinue those too but I was wary and starting to really doubt that the doctor’s actions were in my best interest.

That’s when I began going to see different doctors, hoping someone would understand. The scariest thing for me was knowing that it was the medicine which had put me in this dire position. How could I trust another experiment? How was I going to handle the next adverse effect? I tried things that made me feel hazy and disconnected. I didn’t like them at all. I didn’t feel like myself.

Eventually, the lack of sleep affected all my faculties. I remember telling my boss for the first time that I had to leave work because of debilitating fatigue; vertigo was hitting, and my words were starting to become ramblings. I was admitted at multiple hospitals and checked in at a specialized facility twice over the next month and needed an additional month at home to recover before returning to work. The strain on my finances was dire and I attempted some odd jobs but I had no choice, I could barely muster enough strength for most normal things.

I was not the same after. Lithium pushed me down, down, down in to the most depressive state I had ever been. I did not stay on it long as I noticed suicidal thoughts when I took it. My body was still in pain. The thought of lifting my arms over my head to merely don a shirt and standing up to pull on pants was excruciating.

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Shortly after the period of “spiritual awakening” otherwise known as a breakdown, my physical symptoms were finally being treated. I was given a combination of anti-inflammatory, pain reliever and a low dose med for bipolar, which, through an unfortunate choice of somatic pain medicine had become obvious was one of my conditions. I have been managing Fibromyalgia for four years now, two of them diagnosed, one of them well managed. I can say honestly that it has been the greatest struggle of my life, learning how to live well when the fear of debilitating pain and fatigue is just around every other corner.

Managing your life effectively is crucial for this condition. I went through many doctors before finally finding one that really listened to me and what I needed, who works with me to find better ways to care for myself with less side effects. As a caregiver, I know the mentality well that what’s really important in life is being able to be there for those who need you but there is absolutely no way to really care effectively and extensively in the long term for clients, patients, residents unless you are caring effectively and extensively for yourself in the long term.

Seeing the care through, not letting myself be cast aside, continuing to pursue the right medicine I need and other modes of wellness have brought me to today, where I am a strong and sensitive adept Caregiver and Massage Therapist and bring me a greater sense of self-actualization all the time. It doesn’t get easier but not giving up is vital because there is no way over or around the issue. “Start where you are, use what you have, do what you can”. For me it’s a continual balance of effort; yoga and cardio as regular practices, regular massage (for myself), eating the right foods, which includes leaving out most things which have inflammatory properties, taking my medicines on a regular schedule and doing my best to take everything on time and at the right time of the day.

Getting enough rest and having a consistent circadian rhythm is important. These are all what I’m shooting for and sure, not everyday everything works out but being compassionate and accepting of yourself when you aren’t the person who can do anything, when you’re hurting and just need comfort food and someone to hold you, that’s good too.

There is finally better research available on Fibromyalgia and how it manifests in the body. The likelihood that if you are diagnosed in the years to come will get you much more effective and compassionate care. I am relieved to know that others will not have to endure the sideshow of pharmacological failures that I have. I advocate compassion a lot as a first step to real care.

When I massage my clients, I feel great relief in knowing that we are diminishing pain and creating greater wellness from a microscopic as well as a macroscopic perspective. It is my hope to use my intimate understanding of this chronic pain condition to better treat and care for my clients.

My greatest privilege and the love of my life is learning the art of care.