Living With Cystic Fibrosis Means I’m Bad at Sticking to a Routine

Columnist Nicole Kohr shares how she overcomes 'routine fatigue'

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by Nicole Kohr |

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I don’t find routine to be rewarding. At most, it’s a threat. It’s something predictable that my brain and housemates expect me to do, and if I don’t, we’re all disappointed.

Routine wants me to be structured and consistent, but my brain has different plans. For the most part, I thrive on creativity and inspiration. This is unfortunate because both cystic fibrosis (CF) and lung transplant are unpredictable. They require a consistent schedule of treatments to avoid infection, so I’m stressed 24/7.

This topic has brewed in my mind ever since I first watched Disney’s “Tangled” and its opening musical number, “When Will My Life Begin?

Everyone knows the story of Rapunzel. She has long hair and she’s stuck in a tower. In “Tangled,” Rapunzel does the same ol’ morning routine, and she does it with a smile. Cue red flag. I may not physically be trapped in a tower, but I’ve spent many nights in an isolated hospital room — months on end in some cases. I have never, ever, done my routine with a smile.

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I Swapped Health Routines With Another CF Patient for a Day

When routine goes out the window

In theory, my life would begin at 6:50 a.m. My inner dialogue and I plan for every morning the night before. First, I will use the bathroom. I will brush my teeth, wash my face, do my nasal rinse, and do my hair. Next, I will sit beside my bed and take my pills. I’ll check the weather and get dressed. After that, I’ll make my way downstairs for a healthy breakfast.

Reality looks much different.

Once my eyes crack open after an inconsistent and anxious sleep, I make my way downstairs for a soda. The midnight tissue that crusted onto my face gets thrown on the bed, where my dogs inevitably get ahold of it. I don’t grab my pills, and I forget to use the bathroom. Most times, I don’t even have pants on. The day lingers on from there in a chaotic fashion.

Historically, I’ve never been good at routine. My mom, a single lady with a full-time job, struggled to keep me on a schedule when I was little. Between my scattered eating patterns, CF treatments, and round-the-clock coughing, she never got any sleep. Mom made sure my treatments were done on time. Otherwise, teaching me how to use a microwave and a VCR quickly resolved that issue. It also made for a wonky sleeping pattern moving forward. In her defense, I have enjoyed many a chicken finger dinner amid a 3 a.m. coughing fit. I wouldn’t have eaten at all if I had to sleep and eat on a normal schedule.

Feeling chronically fatigued, overwhelmed, and burned out also come into play. When I’m sick, even the most minimal attempt at routine goes out the window. I’ve already spent most of my life taking medication that I don’t want to take on a schedule that I don’t want to keep. The rest of my day needs to be flexible.

Tips for sticking to a routine

Fortunately, I’ve come up with some tips and tricks that help me overcome routine fatigue:

If my routine is boring, I spice it up by making it into a game.

I do my best to ignore the list of anti-affirmations that my mind creates. Verbiage like “this is a waste of time” just makes the stubborn parts of my brain more resistant to complying. It’s more motivating to see things in a “challenge accepted” light.

I can often think of a list of things my time would be better spent on than making my bed or doing my nasal rinse. The list is less exhausting and more fulfilling, so I use it as a reward. “After I do my rinse, I can research that dinosaur from my dream.”

I prioritize by using my energy (or “spoons“) wisely.

If I have to choose between guilt and frustration, I choose frustration. Feeling bad for myself during a seemingly worthless task can be cathartic, but crying can cause additional fatigue.

I make short to-do lists and accomplish the first task immediately.

I practice self-love. I remind myself that I’m not lazy.

I do the dreaded task first if possible (e.g., sending that detailed email), and I usually do it in a comfortable position.

When I’m desperate, I carry a small figure in my pocket. Subconsciously, I feel like I’m completing the task for them, like they’re cheering for me, and I don’t want to let them down.

While it often seems like routine and I are on different pages, there are many ways to overcome this. The next day, after hours of self-motivation, I just remember Rapunzel’s relatable lyrics:

“Stuck in the same place I’ve always been
And I’ll keep wonderin’ and wonderin’
And wonderin’ and wonderin’
When will my life begin?”

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.


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