Terrible, Horrible, No Good, Very Sleepy Day
Matt and the terrible, horrible, no good, very sleepy day.
If you live with narcolepsy, chances are you have experienced one of these days. These days are more a matter of when, than if. Life happens, and narcolepsy doesn’t discriminate when it comes to serving up these gems.
Knowing these days are coming allows me to develop coping strategies to navigate the storms. The problem is, there isn’t always a way to know which days you need the umbrella.
Lessons from children's books
As the children's book Alexander and the Terrible, Horrible, No Good, Very Bad Day goes, Alexander wakes up with gum in his hair, chaos and calamities multiply. Like people with narcolepsy, the trouble begins transitioning to wakefulness. The REM sleep that showed the unlimited potential of lucid dreaming comes screeching to an abrupt halt. The hangover of dream sleep haunts me as I work to achieve a degree of wakefulness. During these moments I am most vulnerable to falling into negative thinking.
Problems are universal
Alexander’s solution involves moving to Australia. Some of my favorite advocates are from Australia, as are some of my closest friends. The reality is, problems exist in Australia too.
Geographic solutions change locations but the propensity for problems and sleepiness doesn’t need a passport. Naps can be helpful, but retreating and relocating to my sleep cave will only result in delaying resolution.
Being prepared for adversity
Growing up in Boy Scouts provided me with invaluable life lessons, including the scout motto: “Be Prepared.” Knowing that life will serve up sh*t sandwiches means that I need to be prepared to eat one every now and then.
I have learned to work through one or two bouts of adversity and confrontation. The real challenge is when those bits of adversity hit in calamities of threes or fours.
Getting through hard days with narcolepsy
Whenever life hits in multiples I have to work on staying grounded and centered. I’ve come up with a simple approach that even my sleepy mind can follow.
There is no particular order, except I always try to incorporate breathing techniques first. The increased oxygenation and focus on biofeedback help my blood pressure and heart rate to return closer to normal. Then it is a matter of nonlinear progression to work through the challenges in my way:
Connecting is essential for me. The wisdom of others and stepping outside of my own thinking helps me to work through some of the subsequent steps. Sometimes I need a listener, other times I need guidance. The act of reaching out is often enough to pull me from my funk.
Naps are a great way to work through some brain fog, excessive sleepiness, and cataplexy when life throws a few curveballs. My goal is to get just enough of a REM refresher to work through the moment and to avoid the allure of hibernation. Difficulties will remain upon waking up, but naps can reboot my brain and provide just enough focus to work through.
Prioritizing is essential for working through the frustrations on a given day. Reciting the serenity prayer is a great way to identify what is possible and what is out of my control: “...grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” (Reinhold Niebuhr). Reciting the mantra doesn’t necessarily involve a religious strategy. The wisdom of the words helps me identify what I can and cannot control.
Writing and journaling is a big step for me to process through the emotions and details of the day. Putting my thoughts on paper or social media can be an invaluable coping skill for processing and reflecting. Blogging is a great approach too. For me, the goal is to tap into the thoughts and feelings as they happen. The written record helps me to identify areas for growth and areas where I excelled. As a documenting process, I can look back and see my victories and my struggles. Not every day is a win, but every day can be a lesson. The World’s Strongest Person having narcolepsy with cataplexy approved this message.
Do you take steps to prepare for challenging days before they happen? What helps get you through difficult times? Share with our community in the comments below.
What is the hardest part of coping with narcolepsy?