Navigating complex sleep issues in life with cystic fibrosis
Getting rest can be challenging, but I've found practices that help
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My relationship with sleep has always been complicated.
Sometimes I wait until the very end of the day, when I’m so exhausted that I just collapse into bed. Other times, I toss and turn, adjust my position 35 times, and eventually fall asleep a few hours later. I’m also prone to avoiding sleep by starting projects late at night because I claim to get all my bright ideas in the midnight hour. Seldom do I simply go to bed and fall asleep.
Even if the conditions are perfect, I can still have a sleepless night. The room temperature can be ideal, I can be propped up on pillows to prevent acid reflux and snuggled up to my husband, who’s my own personal furnace, and still, I may lie awake for hours, contemplating my life choices, running through my to-do list, or brainstorming future plans. Or, I might hyperfocus on that one area of my body that’s in pain and spiral into thinking through all the possible causes and outcomes, and before you know it, I’m having a full-blown panic attack.
The possibilities for which way the night could go are endless.
How chronic illness complicates sleep
With Sleep Awareness Week beginning March 8, it’s relevant to address how complicated sleep can be when living with a chronic illness. I was born with cystic fibrosis (CF), and sleep has never come easily for me. I spent the first 30 years of my life struggling to breathe. With constant respiratory congestion, it was difficult to fall asleep, stay asleep, and silence my cough long enough to get any rest during the night.
The lead-up to my double-lung transplant eight years ago was one of the hardest seasons of sleep I’ve ever experienced. Laboring to breathe, even while wearing supplemental oxygen, was scary. I struggled to fall asleep, anxious I might not wake up. I regularly felt like I was drowning in mucus, and was often woken by a booming cough to clear my lungs.
After the transplant, my sleep struggles continued. The surgery left me with severe medical trauma, which made it challenging to relax enough to fall asleep. Adjusting to anti-rejection medications left me with a level of anxiety I’d never experienced before, not to mention their side effects, which, for me, primarily include sleep disturbances.
Despite knowing my health was more stable post-transplant, my body didn’t learn that for quite some time. Even now, it still defaults to being anxious about sleep when I’m sick, recalling my past near-death experiences.
Thankfully, I’ve developed my own sleep toolbox that I try to use regularly. Turning off all electronics at least one hour before bed actually works. I have a ritual of somatic practices that help regulate my nervous system, which is vital for calming my anxiety. Praying before bed helps rid my mind of racing thoughts and heavy, unsolvable problems. Making a list of things I can’t forget prevents me from obsessing about my to-do list. And finally, reading before I go to sleep settles my mind and relaxes me.
Perhaps we just need to normalize having a complicated relationship with sleep. It doesn’t take a rocket scientist to recognize that sleeping is a restful state — one that many people with chronic illness rarely exist in.
Can you relate? Please share your experience in the comments below.
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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