Before I got ME/CFS I was a women’s health nurse practitioner working in a busy practice. I had spent years of education preparing for this dream job: two bachelor’s degrees in biology and nursing and two master’s degrees in philosophy of science and nursing. I loved education and learning new things.
After working for some years as a nurse practitioner, I knew I needed to work not just in the clinic caring for individual patients, but needed to fix our healthcare system as a whole. I set my sights on doing a doctorate in nursing so I could make a bigger difference. As well as taking care of my patients, I enjoyed having an active outdoor lifestyle with running, hiking, and teaching yoga. I also had quieter hobbies like knitting, reading, creative writing, and meditation. One of my favorite things was always learning as you can probably guess!
My transition from healthy to chronically ill was long and confusing. Despite all my healthcare education, I had no idea what was happening to me. I had never heard of such an illness as the one that was taking over my life. In the spring of 2014, I got sick with what seemed to be a normal case of mono. I hadn’t had mono as a young person. Happily, it went away after a couple of weeks, as mono does. I felt completely normal again and my life resumed… except that it didn’t really. I began a long, slow downward spiral. There were a few episodes that summer, of what in hindsight was orthostatic intolerance.
One day, out of the blue, I nearly fainted in Target. I would get out of breath climbing the stairs to my apartment. I had to sit and rest after walking a few blocks to the park. These things were scary and abnormal, but also intermittent, so I mainly ignored them. By that fall, I could no longer ignore them. My symptoms had increased from breathlessness and fatigue to muscle spasticity and pain. Doing the Gobble Gallop, Thanksgiving Day 5K that year, I had to stop running because my muscles were so tight they wouldn’t work. I was a runner, so I could ignore the pain, but I became so spastic I physically could not run, and eventually even walking became difficult. I had to give up teaching yoga and I would lie down on the floor at work to deal with the spastic back pain.
Four years later, still, with no idea of the problem, I decided I had been a couch potato long enough. Spurred on by a New Year’s Resolution, I decided I would go back to the Y and get in shape. By March I was so ill my parents had to fly in and care for me. That was my first serious crash. I diagnosed myself after watching the documentary Unrest.
Diagnosing yourself is never a really good idea, so I went to the Mayo. Clearly, I had a rare and serious illness that needed specialty care. What I got was a diagnosis of chronic fatigue, NOS (not otherwise specified), and a recommendation for CBT (cognitive behavioral therapy) and GET (graded exercise therapy). In this confusion, the accurate information from the Bateman Horne Center was a lifeline. Suddenly all my inexplicable symptoms made sense and I had the tools to deal with them. I learned about PEM and pacing. I suspected I had POTS (postural orthostatic tachycardia syndrome) and NMH (neurally mediated hypotension), although the Mayo read of my abnormal tilt table test was “consistent with deconditioning.”
The Bateman Horne Center support group then became my lifeline in another way. I saw a screen full of people like me: horizontal. I had found my people! This group provided me with a bulwark of sanity against physicians who told me I just needed to exercise. It also gave me hope that I could improve and thrive with proper care. I am so grateful for the support I found there. Seeing so many people like me increased my drive to fix the healthcare system so it understands and cares for those of us with chronic illnesses.
Everyone deserves INFORMED medical care.
That is why Bateman Horne Center is teaching medical professionals how
to diagnose and manage ME/CFS, fibromyalgia, and long COVID.
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