A transformative message that directly impacted my patient care.

I was on my way home from a routine workday when I started feeling ill. Achy. Headache. Sore throat. I thought I had the flu, as did the clinician I saw at an urgent care facility that night. I went home, but by the next morning, something had shifted, a palpable shift, like a light switch had been turned off. The magic spell of life had been broken. And life as I had always known, changed. I was where the Disney version of Cinderella is when the clock strikes midnight. The carriage reverts to a pumpkin, her horses once again are mice and Cinderella is back wearing rags. The mice are sad but Cinderella knows the one glass slipper still on her foot will lead her back to her prince. At the end of the fairytale, Cinderella does become a princess and is only in rags for a moment, but for me, the transformation is a much more arduous journey.

For those of us living with an undiagnosed chronic illness, the spell has been broken and we are stuck at that moment. Still in our rags, standing next to a pumpkin and some mice, outside of the castle. Wearing one glass slipper. While everyone else lives on. Unlike Cinderella, our broken spell is hidden and invisible to those around us. And we’re left spending our days trying to craft a story that others can understand, often falling short.

As someone living with Chronic Fatigue Syndrome, or more accurately Myalgic Encephalomyelitis (ME/CFS), it’s hard to accept that I am ill. My friends and family have this same trouble believing until they witness three common and visible patterns: First, the confusion and irritability that develops if I multi-task too much; secondly, the consistent need to mute those noisy TV commercials and lastly, the way too frequent need to cancel all plans and stay home. I am most self-conscious about my irritability. Imagine you are innocently showing me photos of a recent trip. Flipping through all of those screens can quickly overload my system. Brain fog rolls in and now I start getting confused. On the defense, I raise my voice and tell you, STOP. I find myself apologizing more for these moments than having to cancel plans. When someone sees any of these moments of unraveling, I am more convincing.

A seemingly simple viral infection left me wearing one glass slipper which serves as a constant reminder of my previous active self. The virus also somehow disrupted my mitochondrial batteries. They are never fully charged and can drain to zero at any moment. And as my energy supply begins to drop, an internal alarm starts to chime. My own internal warning system that now exists because of my Chronic Fatigue.

With ME/CFS the time on my watch doesn’t tell, or direct my life, the unpredictable time of my internal alarm does. I never know how much time I have before my next alarm is going to go off. It is as though the fairy godmother realizes that I am still wearing one glass slipper and keeps trying to strike midnight to somehow reset the clock so I get my happily ever after. But, when the magic spell of life broke, it also damaged her clock. Her midnight isn’t midnight anymore. My internal clock is no longer in sync with the world around me, and while I am constantly stopping and starting, regular time marches on.

Living by an unpredictable internal alarm looks like this: Heading to the grocery store at 7:30 AM, still early, a nice time to go to the store when it is less crowded. I move towards the door, but then Vivi, my internal clock alarm rings. It feels like that moment when you are starting to go uphill on your bike, after gleefully cruising down the hill, and you realize you are still in high gear. And now it is too late to shift.

I pause to wait it out, to see if these feelings pass and my body finds the gusto to carry on. While I wait, I realize it would be better to order groceries online. When I am ready to start again, I get out my list and reduce it to the basics since navigating the screens requires some demanding brain energy. I finish just before Vivi strikes again and the brain fog rolls in. This time, I rest on the couch. And rest doesn’t mean sleep. For me, it is a time to decrease all of the noises of the world, screens, TV, light and just settle.

Vivi also shows up for important events and celebrations with impeccable timing. I’m attending my niece’s wedding on a hot mid-August day. As an outdoor wedding, I already knew that the heat would exacerbate my symptoms. But, I had a job to do: take care of my elderly parents who are both in wheelchairs. The plan was to take my parents home early, before the sit-down dinner. An early departure, but one that benefits both me as well as my folks.

But as fate would have it, my parents are urged to stay for dinner and as a result, me too. I am already starting to unravel while Vivi’s alarms ring and my irritability takes front and center. Drinks arrive first and the next thing I know my nephew is letting my 90-year-old, legally blind father get served some wine. And I say, “What the X are you doing!” I wanted to leave and now people are enjoying wine. I am Cinderella in rags outside of the castle, watching everyone live on.

My nephew just sat there stunned as I got up to make sure that my dad didn’t consume any. I immediately apologize to my nephew before sitting down. My reaction wasn’t rational at all. I snapped. My dad has every right to live life and enjoy wine at his granddaughter’s wedding. On the drive home, I am completely shut down and quiet. Battery empty and guilt weighing heavily.

So, with ME/CFS, the time on my watch doesn’t tell, or direct my life, the unpredictable time on my internal alarm does. Life shifts when Vivi rings. But while I am constantly stopping and waiting for my body to feel ready to proceed again, regular time marches on.