Disease Fatigue Is Not the Same as Laziness
I come from the generation of “Netflix and chill,” except for me, it wasn’t a sexual innuendo. My college life consisted mostly of watching Netflix and chilling; sitting on the couch with my girlfriend at the time, and binge-watching TV shows. I was known for being a successful couch potato, which basically meant I put loads of effort into schoolwork and work-work, but didn’t exercise much outside of walking between class buildings and my workplace.
I lived in Hawaii, yet went on maybe one hike per year and rarely hit the beach. A wonderful org called Mauli Ola Foundation has celebrity surfers like Kelly Slater and Sunny Garcia take CFers surfing (salt water vapor is good for lung health), and I’d feel stoked to hit loads more waves after each event attended. Fatigue would fade the amp days later.
My “laziness” was a joke among friends. But I didn’t laugh. I felt rude when I could only help minimally to set up and take down for church events. I didn’t feel manly standing on sidelines as other dudes played sports and valued each other by physical ability. I loathed feeling as though someone was choking me, stabbing a knife into my ribs, and blazing a blowtorch in my face when I exercised.
Exercise is one of the best CF treatments. But if you mistakenly begin exercise regimens later in life, when your lungs are crippled and muscles atrophied, it’s awfully hard. People complain about the pain of starting exercise programs or working out with a cold. Imagine how much harder it must be for someone with half or less of your lung function, plus multiple ongoing infections. Don’t pretend it’s as easy for a CFer to exercise as it is for a relatively healthy person.
In my last year of college, fatigue wrecked me. The Sandman slammed me into the ground with a sledgehammer, then screamed at me to stay down. I couldn’t keep my darned eyes open. I’d fall asleep in class, and wake up with a small shout (a sleep apnea symptom). My classmates would snicker as I stared intently at my desk and begged my mind to reactivate. I’d drift seconds later — sandbags dragging my eyelids. I was sleeping about 18 hours a day.
Lead and wool wrapped my limbs. I’d overheat while walking between classes; salty, stingy sweat flooding my eyes. In 10 seconds, my heart rate would shoot to 164 beats per minute while slowly walking on flat ground. I foolishly began drinking coffee, and lots of it. Nothing grazed my fatigue. I’d doze off in the library, forehead pressed to my keyboard, while working on my thesis.
I was in end-stage CF, dying, and people commented on my laziness. Many CFers kick things into gear and get really fit in end-stage CF, even knocking themselves off the transplant waitlist. They’re supernaturally determined. I lacked that.
During my transplant evaluation, a social worker asked about my goals. I said transplant wouldn’t be a life extension, but a reset button. I wanted to be athletic; to run and mountain bike. Mom cried, saying she didn’t know I wanted those things. I’d always wanted those things. I was just afraid to fail and hurt.
Post-transplant, I couldn’t stop vomiting and my body swelled so much from fluid retention that I looked like the Michelin Man and couldn’t fit into any shoes in the dead of winter. I simply couldn’t exercise. I thought I failed my family, my doctors, my donor, myself. Maybe I really am lazy?
But things changed. I adjusted to pulmonary rehab and progressively pushed harder. My transplant incisions felt like they were tearing, my shoulders burned, my legs cramped. It hurt so good. My muscles began giving out before my lungs. Eventually, my muscles stopped giving out, too. I began thriving. I now know I wasn’t lazy all that time. Fatigue had me in a death grip.
I never stop moving now. I’m traveling all over the world. I climb, run, play badminton, do yoga. My daily step average in July 2016 was 67 steps per day. I now have a 14,000-step average, and hiked over 33,105 (13.5 miles) in Zion National Park, in 104-degree weather at 6,521-foot elevation in a desert. I climbed 68 floors that day. The same week, I got medals at the Transplant Games of America for badminton.
The absurd thing? I wasn’t even a tenth as tired that week as I was when I’d walk across my living room before my transplant. That’s how bad CF fatigue can get. My days chained to my bed are over.
If you’re a caregiver, your loved one may suffer from fatigue. Don’t assume they’re lazy. Encourage them to exercise, but don’t attack them. They’re hurting.
I travel to Hawaii this December for the first time since my transplant. I’m excited to appreciate the hikes I neglected and surf again.
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