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PWN Spotlight: Juliana

September 1st, 2020

Quarantined-Birthday Surprise: You Have Narcolepsy
By: Juliana Florez

The week of March 16, 2020, was one I will never forget. The global pandemic made it to the tristate area and we had to go into quarantine pretty much overnight. There was no public transportation, businesses were closed indefinitely, and schools were forced to go remote. At that time, my concerns were too many to count. Did I really have enough toilet paper? Should I attempt another trip to the grocery store and wait in line for hours? How would my graduate program transition to a fully online platform? I tried to put my fears and worries to the side since I was looking forward to my birthday. Little did I know, I would spend my 22nd birthday in quarantine because of COVID-19 and with a new diagnosis: narcolepsy.

Given the COVID-19 pandemic, I had to get the results of my sleep study over a telehealth visit. This was my first virtual appointment with any physician, so I was very anxious. I didn’t really know what to anticipate. My doctor’s words were very clear, “You have narcolepsy”. I felt a surge of immediate mixed emotions. Am I happy to have a diagnosis? Am I angry that it took this long for someone to believe my exhaustion was more than just tired? I was somehow annoyed and overjoyed at the same time. But then came trying to process the news during a global pandemic nonetheless. How will I manage during my graduate program with all evening and night classes? How will I tell my family, friends, and colleagues? Will they even believe me and how will this change their perspective of me? Will quarantine help me succeed or hinder my academic performance? Wait, this is nothing compared to the thousands of people directly affected by COVID. So, I said nothing about this massive discovery to anyone. My constant sluggish feeling, my eyes closing while in class, the continuous need to stand up and move, it was real. I spent so many years wondering why I struggled with ordinary and simple tasks. With all these thoughts in my head, I simply tried to remain somewhat calm and put on a happy face because it was still my birthday.

What happens now? As if the diagnosis wasn’t already enough to process, I now had to decide on a game plan for treatment. My doctor recommended I start with a low dose stimulant each morning and after two weeks, double the dose. Okay, so not that bad. Just one pill every morning Juliana, you can do this! Thinking back, it was both a blessing and a curse being quarantined at home 24/7 while starting the medication. Yes, it was comfortable to be home with an upset stomach and constant dizziness. On the other hand, I had to make a conscious effort to not just get out of bed, but stay out of bed, every day, in order to function while I worked and studied. My lunch break could turn into an unexpected two-hour nap if I was not careful. I could just open my laptop and check my emails in bed, but let’s be realistic, it would take about five minutes before I would be sound asleep under my soft blanket. I tried to be positive about the new medication. If I had achieved so much without medication, imagine how great I would feel with it? Well, it’s not magic. It took over two months to adjust to the meds. During that period of trial and error, my entire body would shake and tremble; I would sweat profusely, and I lost over 10 pounds. I was pale and pretty much looked like a cast member for the next zombie movie. The weird and oddly satisfying part was that no one noticed. My classes were now on Zoom and I was also working remotely. No one had a single clue that my clothes were too big or that I spent hours hugging my toilet from nausea. At times, I would be super sleepy with brain fog, and other nights I would sleep a total of two hours. Regardless, I showed up to work or class the next day as if everything was “normal”.

Ha! There is nothing “normal” about quarantine anyway. All I knew was that I needed to push through the last few weeks of my semester and somehow pass my finals. I reached out to the Disabilities Office to become affiliated and get the appropriate resources. I approached my professors for a private conversation about what I was going through. I let my supervisor know of the new diagnosis as well. Feeling trapped at home, I had to stay attentive while I worked from home and now stared at a screen for an average of 12 hours a day. I knew I needed to think creatively about how to stay engaged and awake. I invested in a new smartphone with a smartwatch and earbuds. The smartwatch helps me wake up in the morning since pressing “Snooze” is just too easy. My alarm is now linked to my watch that vibrates and makes noise to ensure I get up. The earbuds have ambient sounds which help me stay focused while I work from home or do homework. Sitting in silence for me is a recipe for disaster as I immediately start to nod off. Another challenge for me has always been sitting – sitting for too long makes me sleepy. I have my smartwatch set up to remind me to get up and stretch every 30 minutes. Since I was home, I also made sure to drink a gallon of water a day along with healthy snacks. No matter what, I just needed to keep going.

I would say that my reaction to the diagnosis was “fight or flight”. I have been experiencing narcolepsy symptoms since I was 15. Why wouldn’t I “fight” now that I had the diagnosis and the medication to help me? The quicker I accepted this neurological condition, the quicker I could embrace myself. Narcolepsy isn’t a flaw. It doesn’t define me. Rather, it has empowered me to take action towards a healthier lifestyle. Narcolepsy has pushed me to be open, honest, and vulnerable about how I feel, whether it’s to my supervisors, friends, or professors. My narcolepsy isn’t going anywhere. It will “hang out” with me, so I knew I needed to adapt and make the necessary changes to coexist with narcolepsy. Given that I have other health conditions, such as high cholesterol, hypothyroidism, and fibromyalgia, the newest addition of narcolepsy really solidified my need for better choices. Once the dosage of the stimulants was tolerable and effective without the side effects, I started to go for runs in the park every afternoon. Funny thing is that I hate running and hadn’t run a mile in at least six years. I felt so much energy and momentum that my first run was a 5k in under 50 minutes. For a woman who struggled to get up to shower in the morning, this was like winning a gold medal at the Olympics. I didn’t just stop there though. I exercised every day since I now had the energy for it! From afternoon runs to strength training and high-intensity interval trainings, it all felt unbelievable. The time to make a positive impact was now, and looking back, if I didn’t have the diagnosis, I don’t think I would have transformed my life in the ways I did. I focused on my nutrition and started to do research on healthy diets. I am almost fully dairy-free. I buy organic and gluten-free whenever possible. I also make vegan and vegetarian meals. Reading books would make me quickly fall asleep so I started to listen to audiobooks. From yoga to meditation, to hiking, I was learning about myself in such a deep introspective manner that allowed for true vulnerability. I realized I cannot change my diagnosis of narcolepsy, or any of them, actually. However, I can change how I feel physically, mentally, and emotionally. This entire experience has shifted my worldview. I now want to focus on the things I can control such as diet, exercise, and thought process.

The last five months of quarantine have been a rollercoaster. Getting diagnosed with narcolepsy on my birthday during a global pandemic was a once-in-a-lifetime experience. The human body is so intricate and complex but that doesn’t mean I am anything less than resilient. I chose to be a person with narcolepsy, not a narcoleptic. I chose to be an advocate for sleep disorders. I chose to not let anything stop me from achieving my dreams. Wait, maybe just a quick nap, but then it’s back to work.

This spotlight originally appeared in our printed newsletter. Want to receive your own copy? Make sure you become a member and you’ll receive our newsletter that is filled with articles about how to be active in the narcolepsy community, medication updates, and so much more!

 

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Date Created: September 1st, 2020
Last Updated: February 23rd, 2021