There are good days, and then there are flare-ups. Sometimes I can function, even enjoy a little sunlight. But other times, I hit the wall hard: my head pounding, joints aching, overheated, drenched in sweat, barely able to move. Those moments can crush my day.
I live with Myalgic Encephalomyelitis, also known as ME or Chronic Fatigue Syndrome (CFS). At 32, I share my space with Howard, my husband, and Luna, our dog who serves as both companion and gentle motivator on the hardest days. Our home is a sanctuary, designed to fit the reality of living with a body that doesn’t always cooperate.
Freedom, for most people, means the luxury of spontaneity—the ability to decide on a whim to get dinner, take a weekend trip, or simply leave the house. For me, each decision has to be weighed against a complex equation of factors that most people never need to consider.
“Spontaneity is kind of off the cards. I can’t just throw caution to the wind and do something on the spot like other people might be able to.”
My symptoms can strike at any moment, which means that everyday life requires a level of planning others don’t have to think about. Average temperatures, mobility, accessibility, transport, accommodation—every detail needs consideration, even whether a place has a bath or just a shower, in case I have a flare-up.
“I remember one evening, we were supposed to go out for dinner, but I had to take a lineup of painkillers and anxiety meds just to get out of the hotel room. I had to wait an hour for the medication to kick in, just so I could eat a meal.”
Meeting life’s challenges while managing ME and CFS creates a unique kind of tension. I work as a forensic scientist for the Police—a demanding role that requires sharp focus and physical stamina, qualities my condition doesn’t always provide. When opportunities for advancement come up, the excitement of professional growth gets tangled with the reality of what my body can sustain.
“People talk about interview nerves, or being a bit anxious before something important. But for me, stress doesn’t just stay in my head—it leaks into my body. Stress triggers pain, fatigue, and emotional overwhelm. And when that happens, the spiral begins: I feel angry, then sad, and then I fall into this deep gut-level despair. That voice creeps in: ‘You’re not like everyone else. You’ll never be like them.’”
I know firsthand how stress and worsening physical symptoms intersect; how one triggers the other, creating a feedback loop that can turn a manageable bad day into weeks of struggling to find solid ground.
“It’s hard not to believe that voice when my mental and physical health are constantly feeding off each other. If I’m already low emotionally, my body reacts even worse. A flare-up that might usually last a couple of days suddenly drags on for weeks. My ability to bounce back—physically and mentally—gets slower every time.”
“It becomes exhausting. Life can feel like an endurance race, and not in a motivational sense. I’ve said before, it’s not about suicidal thoughts, but more that sometimes I imagine getting to the end and just… being free. People say they enjoy life, and I wonder what that feels like. For me, just being takes effort.”
