Words Janis Jean
A couple of years ago, I announced my retirement from the commercial photography business and a reduction in my work as a photographer for Seaside Magazine. That was the version I shared with the world and my clients. The real story, however, was only just beginning.
After a bad bout of COVID-19 that I never fully got over, I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It’s an illness that affects my energy levels in ways I could never have expected, and it’s very hard to explain.
I was initially told by doctors that there was nothing wrong with me, but I knew something wasn’t right. I trusted my instincts because I knew my body. I was sleeping at least 16 hours a day, but never felt rested. Simple tasks became exhausting and if I pushed myself too hard, my body paid for it the next day with what is known as a “crash”. Sometimes I could barely get out of bed, forcing me to cancel plans. I now know this delayed worsening of symptoms, Post-Exertional Malaise, is a hallmark symptom of ME/CFS.
Regardless of how much I “rested,” the fatigue never let up, yet my body had to rest and sleep. I felt guilty and lazy, despite not having any control over my symptoms. Even picking up my camera, doing something I love, for more than a couple of hours would leave me feeling utterly exhausted. My legs would feel like lead and I’d be heading straight to bed when I finished. I’ve had to learn how to pace my activities, schedule rest and afternoon naps.
The word fatigue is often associated with feeling “tired,” but for me, it’s so much more than that. Imagine running on a battery that never fully charges. Even on a good day it only reaches 50% . Once it’s empty, it’s no small feat to refill it, and I can’t function until that happens.
Everything I do draws from that half-charged battery, which means rationing every bit of energy I have in my day-to-day life. This condition has completely changed how I plan my days.
If I’m out and about, I probably seem like my usual outgoing self. What you don’t see is the nap I have taken beforehand, or the recovery time I’ve already planned for tomorrow so I can walk our dogs, spend time with family and friends or pick up my camera. It’s not that I’m unable to do the activities I love – when I’m there, I’m there 100%! But you don’t see everything that happens before and after to make those moments possible.
Eventually, I found a specialist who diagnosed and now helps me manage ME/CFS with prescription medication and supplements. I distinctly remember that appointment with him. When I described my symptoms and the circumstances of when and how it started, he diagnosed me without hesitation. I honestly cried afterward. Finally, someone believed me! No, it wasn’t “just hormones.” It wasn’t “all in my head.” It was a real medical condition, and suddenly everything made sense.
I’m sharing my story not to seek sympathy, but to let others who experience similar symptoms know they’re not alone. Sometimes, solutions take longer than expected, and not every doctor will have the answers. However, your voice and instincts are worth trusting. Don’t give up.
Keep asking questions. Keep advocating for yourself. Trust your gut, and don’t stop until someone helps you find the answers you deserve.
