I Must Use My Energy Wisely, but Use It I Can

Nicole Kohr avatar

by Nicole Kohr |

Share this article:

Share article via email
cystic fibrosis mental health | Cystic Fibrosis News Today | A graphic depicting a woman on a stage with the words

When my body feels like it’s running on fumes and I’m in need of a pick-me-up, I watch the musical comedy “Once Upon a Mattress.”

The story, which famously starred Carol Burnett in various roles on Broadway, follows a selfish queen, her adult son, and the affected kingdom. The queen wants her son to remain single so that her power over him and the kingdom remains intact. In one song, “Quiet,” one of the queen’s evil plans against an eligible princess is put into action. Princess Winnifred is tasked with sleeping on 20 mattresses and, unknown to her, must resist sleep and identify a pea at the bottom of the mattresses to marry the prince.

The musical makes me giggle and reminds me that sleep and energy are scarce resources, especially if the journey toward your dreams is an uphill battle. When I was younger, my mother would tell me that she needed to get at least six hours of sleep. I understand this concept more and more as I age, but I still severely underestimate my body’s required minimum of sleep.

I used to be full of energy. In most cases, I could go without sleep. Even back-to-back all-nighters left me an energetic gal. As a senior in high school, I recall waking up at 5 a.m. and powering through 16 hours of scheduled activities. Was I a superhero? Perhaps everyone feels that way when they think of their younger selves. Regardless, that’s not the person who’s appeared in my reflection over the past year.

Granted, I have a handful of toxic infections and medications that drain my energy. Much like a demon would unapologetically siphon gas from a used car, even my eight hours of sleep giggle at me as I drift off mid-conversation. Still, having to spend 20 minutes persuading myself to do my nasal rinse is unhealthy, right?

Recommended Reading
side effects of trikafta | Cystic Fibrosis News Today | mental health | illustration of two people hugging

Reducing Trikafta Dose May Ease Mental Side Effects, Study Reports

As a short-term solution to this ongoing issue, I began hoarding my energy. I napped whenever possible. I turned down opportunities to engage publicly, especially on days that I labeled for rest. I squeezed as many chores as I could into the short-lived “zoomies” that my body experienced around 4 p.m., and I loaded up on caffeine.

If my calendar was filled to the brim with events on Wednesday, and I ended up exploring my neighborhood’s restaurants on Tuesday, I panicked. “I was reserving this energy for tomorrow,” I would say to myself. “Now, tomorrow will go terribly!”

Frighteningly, having a single event on my calendar filled my nights with restless anxiety. I thought about that one event to the point where I didn’t get anything done. It’s one of the reasons I started requesting early-morning appointments. All plans that involved something other than resting became a chore. It forced me to think, “What now?”

I concluded that my plan to hoard energy was unrealistic and selfish. I didn’t like who I was becoming — an antisocial homebody with nothing positive to say. Finding other ways to restore and create energy has optimized my health and refueled my life with positive energy.

I’ve once again taken the initiative to join my friends and family for outings. It’s summer. COVID-19 aside, it’s not healthy to lock myself away. I’ve reflected on the fact that my fatigue is not my fault, but more important, it’s not my family’s fault, either. My reaction to my fatigue is within my control, so I refuse to waste any more time submitting to a symptom.

I spend each morning searching the fridge for diabetes-friendly snacks: “How can I get the most bang for my buck?” Eggs and leftover carbs followed by a lengthy walk around the block have created a supply of energy that lasts me through the afternoon. The gallon of water that I’ve onboarded into my diet boosts my energy, too.

Lastly, the documentation of my sleeping patterns opened my eyes to healthier habits. Mindful activities like yoga encourage me to relax and breathe. Turns out, I’m a teeth grinder, but hydration, healthier foods, and exercise have lessened the grinding, at least according to my husband.

Back in January, I dragged my body through the lengthy list of chores that I declared time-sensitive before crashing violently on the couch. As of June, the family pictures once again include this smiley mug, regardless of the sleep I got the night before.

My husband and I are attending a wedding this weekend, and the invitation says it will last through 11 p.m. I can’t worry about the energy that I’ll have to expend, but I know one thing for sure: I won’t be able to locate the pea under my mattress that evening.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.


Leave a comment

Fill in the required fields to post. Your email address will not be published.