The Monster If I had to describe my chronic illness as a creature, it would be a grotesque, twitchy hare with a hyena head and spider legs. It's the stuff of nightmares. Can you imagine it? A blind, lifeless eye staring back at me while venomous drool drips from...
Patient Voice
The Germiest Place on Earth
The fatigue began at the top of my head and rolled down my body, as if I’d been standing under a cold shower. I felt flushed, chilled, achy, and unsteady on my feet. I had to lean against the display case of the cupcake shop, hoping my son wouldn’t notice. We were on...
Community Helps Me Live Better with Fibromyalgia
I felt like a normal mom. I had three girls, so I was busy, but I still liked to hike, bike, run and go for walks. I had finished my bachelor’s degree and considered getting a master’s when my youngest started school. I kept up my teaching certificate in the meantime....
From My Dream Medical Job to Life with ME/CFS
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...
Josie’s Story
I was only 11 years old when I got ME/CFS and my life changed forever. Before ME, I was a normal, happy kid. I loved going to school and got straight A’s. I was that crazy kid who couldn’t wait for school to restart after a break. I also loved music. I played the...
My 36-Year Journey with ME/CFS and FM
Prior to becoming sick, I worked a variety of jobs including an orthodontic receptionist, dental assistant, massage therapist, yoga instructor, answering service operator, waitress, cleaner, and costume jewelry designer and maker. I loved riding my ten-speed bicycle...
The Day My Life Changed
After high school, I attended and graduated from a class in machinist training through NASA. I worked for multiple machine shops throughout the years and ultimately became a journeyman machinist, CNC milling/CNC lathe programmer. In the late 1990s/early 2000s I...
A Physician’s Journey with ME/CFS
As I think about the Bateman Horne Center (BHC) I am reminded of its mission of empowering patients, advancing research, and improving clinical care for all those impacted by ME/CFS, FM, post-viral syndromes and related conditions (msCCDs), as well as the vision of...
I Have Learned…
I Have Learned... My worth is not in what I can do, it is in who I am That people don’t really think about the fact you are in a wheelchair Except to be on the alert if they might be able to help you The grieving process is a circle I have hard days, but I had hard...
“Precipice”
We stand on the edge of a precipice and most of the time we keep our eyes trained on the horizon where we can see across to our loved ones to moments of joy happiness contentment. Sometimes we lose our energy and our gaze turns downward into the chasm of despair pain...
“Reflections at Year 5”
Reflections at year 5… On top of the world, amazing career, a perfect life Until suddenly I wasn’t Why me, why now? But why not me? Unable to stand, to eat, to sleep, to think Where had I gone? An end, and then a foreign uncharted path Time eased some burdens, some...
“Better Because of M.E.”
"Better Because of M.E." (Myalgic Encephalomyelitis) Despite decades of sickness, I’m still me. I’m still of worth; better because of M.E. More loving, empathetic, patient and kind In spite of “losing” some of my mind. Stuck at home but not in the mud, I “get back up”...