Jody’s ME/CFS Story
My name is Jody Keeler. On February 26, 2011, my life changed when I came down with pneumonia and never recovered.
Before that day, I was a long-distance runner, endurance bike rider, and small business owner – living a full and active life. As weeks passed, I developed unexplainable symptoms – severe headaches, dizziness, weakness, and fatigue. After eight months of uncertainty (what was wrong with my body?), scores of tests, and visits to 22 specialists, a Boston doctor finally gave me the diagnosis. I had ME – Myalgic Encephalomyelitis, aka (the inadequately named) Chronic Fatigue Syndrome, or ME/CFS.
That day he also told me, “The good news and the bad news is that you’re not going to die.” And he was right. A diagnosis that’s only a name – a debilitating mystery disease with no known cause or cure – is a disappointing dead-end. By November, I was bed-bound, and my wife, Peg, my hiking, biking, and kayaking partner, became a full-time caregiver.
Since then, I’ve lived with a daily stew of symptoms – brain fog like the dentist’s lead x-ray blanket dropping onto my skull; fatigue that feels like cement in my veins; and headaches that can be thudding & dull or bright & buzzing, like a hive of bees in my head. I have extreme sensitivity to odors, sounds, and bright lights. My blood pressure drops, and my heart rate soars after standing for a few minutes, making me so dizzy that I have to lie down in a dark room for hours. A simple phone or in-person conversation can intensify the symptoms and put me in bed for the rest of the day. This is a part of post-exertional malaise (PEM) – where all symptoms worsen and persist with the slightest physical or cognitive effort.
In terms of daily life, I can only leave the house for a few hours in the mornings. I can’t go out for dinner or travel overnight. And I have to choose activities – like a wedding or spending time with my grandkids – knowing that I’ll pay by being in bed with exacerbated symptoms for days.
I’m lucky – my health has improved incrementally, and I’m no longer bed-bound. Most mornings, I can play guitar, write or do some woodworking for a short while. But I know millions of people with ME/CFS spend every day in a dark room, in pain, with little hope and shut off from life. That’s why we donate monthly to OMF – to support their commitment to research, advocacy, and finding a cure.