By: Ariel Fixler
What was one of the most surprising side effects of my diagnosis? INSOMNIA.
I have always been a pretty sound sleeper. If I were nervous for a big work presentation or event, or an earlier or red eye flight for work or pleasure, I would pop a Tylenol PM (but that was RARE). My dad and I used to wake up early together to bond every morning. Every weekday at 6AM, my father and I would work out together watch the news and sports recaps on ESPN and ESPN Classic. Exercise was “my escape and outlet” until I was sick. Then it was my worst nightmare along with my sleep cycle. I even had a recumbent bike in my apartment and a gym across the street (NO EXCUSES MOTTO).
I was always a huge proponent of sleep. I didn’t need gimmicks (like an eye mask, earplugs or a wind machine). I could even fall asleep with the television blaring in the background (I know that is unhealthy).
Once I started chemotherapy, drug trials, radiation, hospitalizations, immunotherapy and liver dialysis my sleep habits became hazardous. I became an erratic sleeper. I slept on and off all day, so my nighttime slumber didn’t take flight until 3AM or 4AM. I hated it. Sometimes even later on. I was sleeping when people were getting up. Watching Good Morning America became Good Night America for me. Sometimes I went days sleeping for 24-36 hour stretches. Sometimes I went days paralyzed by nervous energy, worry and anxiety. I would think that I was so sick that if I went to sleep I would never wake up. I felt like one of my friends (who I used to tease), who partied all-night and slept all day (essentially WASTING the day AWAY). To know me is to know I make the most of my time. I am not lazy, sloth-like or stagnant. I never slept all day and nursed a hangover. If I was in bed I was sick as a dog. I used to walk from the lower east side to my midtown apartment to get “shit done”. I used my transit time as productive time. I was one of those people who took the bus to get work done because the subway was too cramped for me to “think” (my ADHD in effect).
So when insomnia took over during my illness I felt POWERLESS. I clock watched like I used to do the night before the first day of school. I couldn’t control my body anymore. I HAD TO SLEEP DURING THE DAY. I hated sleeping all morning. During the morning, I was desperately trying to block out the noise of everyone going to work and construction all around me. I felt so OFF and I HAD NO CONTROL. It is why scheduling visits became so difficult (because I started to have to choose sleeping later in the day in order to feel balanced). I couldn’t see people early in the day because I went back to bad. By the time I started my day people were finishing their day.
So be aware when a patient chooses sleep over a visit, they are choosing THEIR ONLY ESCAPE. In their dreams they are living their best life. That life may even be a healthy life. So let them sleep. During treatment, some senses die and others are heightened. I heard and smelled EVERYTHING. My sight, sense of taste, balance and sense of dexterity declined immensely. IT WAS SO PARALYZING. So noise (even mild noise) was a massive disruption. If you wore heels, moved furniture or shouted I WANTED TO MURDER YOU. So be aware if a patient is extra agitated, they may be sleep deprived. It doesn’t mean they aren’t getting ENOUGH SLEEP. The SLEEP THEY ARE GETTING IS “OFF”. The sleep they are getting isn’t quality REM cycle sleep either. I stayed away from sleeping pills because they made me groggy and dizzy. Additionally, I wanted my body to tell me went to shut down not a pill to tell me. So be aware of the insomnia, but still embrace the sleepless wonders that are the chronically ill.
Affordable Insomnia Solution:
Dimming for cable lights and optimal sleep
QUOTES THAT SPOKE TO ME: