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Ashley’s Story (Narcolepsy)

AshleyIn 2013, I was a newly independent adult. I had just graduated from college with a bachelor’s degree in Health Science. I moved to the central coast of California; home to beautiful beaches and amazing weather.

I worked full time as a medical scanner and part-time as a waitress. My family was not in the area, but I had close friends nearby and was meeting lots of new people. It was an exciting time in my life; everything felt like an adventure. I just didn’t realize what kind of adventure was ahead.

One day, at my medical scanning job, I felt overwhelmed by sleepiness. I tried everything I could think of to stay awake, but I could not keep my head off my desk. I had to sleep, so I snuck into an empty office. I laid down on the floor with a blanket bunched up into a makeshift pillow and slept. I was able to drift off within seconds on the hard, dirty floor, with the fear of getting fired looming over me.

Increasingly, it became a daily struggle for me to stay awake. Driving more than 30 minutes became nearly impossible. One day, I went to a job interview two towns away, and on the way home, my eyes began getting heavy. I was having trouble focusing. I knew I had to get off the road. Pushing myself to focus on driving, I used every ounce of strength to keep my eyes open as I found an off-ramp to pull over. I pulled into the first parking lot I could find and napped in my hot car without air conditioning.

I continued to suffer every day thinking it was because I was pushing myself too hard. I told people that I thought something was wrong with me because I was heading to bed at 5 p.m. any night that I did not work. People said, “You have two jobs; of course, you’re tired.” After almost a year I finally realized, this was not a normal level of tired, even for my lifestyle. Something was wrong, I was barely functioning, so I made an appointment with my doctor. She immediately told me “I think you have lymphoma,” I was in complete shock. At 24 years of age, my doctor told me that I may have cancer; my mind was blank.

Once the labs came back without evidence of cancer, my doctor stopped trying to help me figure out what was going on. She said that I was young and healthy and that I just needed more exercise. How does someone go from “I think you have cancer,” to “You’re fine.”?

A year later, I finally found a doctor that was determined to help me find a diagnosis. For two years, I was seen by an endless string of specialists and was tested for an array of things including adrenal fatigue, early onset menopause, and depression.

Those two years were absolute agony; the fear of losing my job was a regular occurrence. Eventually, I had to reduce my weekly schedule from five days a week to four. This affected my paycheck more than it affected my sleepiness. I slept all day on my day off, but I still had a problem staying awake on the days I worked.

My relationship with my very sweet boyfriend suffered. As understanding as he was, he would still become frustrated with my limitations.

On our two-year anniversary, I surprised him with a romantic trip to Big Sur. There was a huge storm; ideal weather for our cozy cabin in the forest complete with a fireplace and an outdoor tub. It should have been the perfect weekend. I drank coffee each day to prepare to stay up until an acceptable adult bedtime, but the entire weekend I lost the fight against sleep. My head would get heavy and I’d blink and drift off. I could see the disappointment on his face, and it broke my heart. I wanted so badly to be a normal girlfriend and spend time with the person I loved so deeply. I lost parts of my life to sleepiness during those years.

Finally, at age 29, I received some answers. My sleep specialist told me that I have narcolepsy, a rare, chronic neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. One of the symptoms of narcolepsy is excessive daytime sleepiness, which is sleepiness that is comparable to how someone would feel after staying awake for 48-72 hours. That is exactly how I had been feeling. Getting a diagnosis was a huge win!

Now that I have a diagnosis my life is easier. I do my best to get lots of sleep every night and take my prescription medication daily. I work forty hours a week and most of the time I do not have trouble making it through the day;I can usually stay up until 9:00 pm. That is not to say my life is without limitations. It’s not uncommon for friends to get upset with me when I leave a social gathering early or cannot make early morning plans. It takes all my energy to work a full-time job.

All in all, the quality of my life has improved to a level for which I am very grateful. The months leading up to my 30th birthday were not filled with dread, as many people experience when entering a new decade of their life. I was excited about my thirties because I slept through my twenties!

I will continue to live life to the fullest and help others do the same to  spread awareness about narcolepsy. The average period of time to reach a diagnosis for narcolepsy is 3 to 5 years– due to misconceptions and lack of knowledge. I hope to improve the time it takes to get a diagnosis.

I plan to pursue a master’s degree in Environmental Policy so that I can make a positive impact on the health of humanity and our planet. People cannot see the challenges I have overcome because narcolepsy is an invisible illness. What people will see is my ability to persevere. This journey with narcolepsy has shown me that there is no challenge that I cannot overcome. You may just know someone living with an invisible illness.

 

 

Ashley
California
Submitted February 8, 2019

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

4 comments

  1. I so relate being so Happy to turn 30, I had nearly died due to liver tumors! I got diagnosed faster w Narcolepsy, I hAve al symptoms. I loved you article.

  2. Hallo Asley.Wie gu,dass Du schon deine Diagnose kennst und dein Leben danach ausrichten kannst. Denn Du bist nicht NARKOLEPSIE-aber Du hast Sie.
    Bei allen Reduzierungen kannst Du dein Leben bewusst optimal gestalten.
    Ich habe erst mit 40 Jahren meine Diagnose erhalten u solange keine ärztl. Hilfe.Immer nur das Wissen, etwas stimmt nicht.-obwohl medizinisch gesund
    2 Berufe gelernt.2 Kinder geboren.kein Verständnis in der Familie-wegen der Müdigkeiten.
    Ewiges Versteckspiel am Arbeitsplatz. Deshalb öfter gewechselt.Es war nicht einfach und natürlich dadurch auch reduziert.
    Vieles ausprobiert. nach meiner Ehe,ausgestiegen, spirituelle Wege gegangen.
    auch in Big Sur Esalen u Harbin Hot Springs gewesen. Einen vielschichtige Lebenserfahrung trotz der NARKOLEPSIE gehabt-oder gerade deswegen. Reisen u tanzen als ein Lebenselexier. I did it my way……
    Inzwischen war ich schon 70.Jahre alt auch wenn ich mit gebremster Kraft leben musste- habe ich noch immer Lebensfreude.singe-male-mache TelefonSeelsorge(mein Ohr am Volk)
    meine Story gibt es auch.(könnte sie auch mal veröffentlichen?)
    Sehr geholfen hat mir die DNG.(Deutsche NarkolepsieGesellschaft) zu erkennen,dass es viele Menschen mit Narkolepsie gibt,auch wenn es unter “seltene Erkrankung” genannt wird.
    Habe mich als Probant zu Verfügung gestellt, zwecks neuer Medikamentenentwicklung.
    (bei Prof.Dr.Geert Meyer, HephataTreysa.)
    Ab dann habe ich mich nicht mehr dafür geschämt und akzeptiert was ich nicht ändern kann,
    aber das Beste daraus zu machen. “I feel good…”
    Das wünsche ich auch Dir liebe Ashley und allen Betroffenen.
    love Anita

  3. Hey Ashley it’s inspiring that you shared ur story with us and how positive u with it.all I can tell you is that over the years you grow and learn to live with narkolepsie .i finally can do my license after 12 years with it and so you can reach anything you want too.if u like you can add me on fb and stay in touch wish you all the best for ur future big hugs ????

  4. Thank Ashley your story is so touching. I have the same experience since the age of 16 to-date.(now22) the major concern is for youths here in Africa like me .I misdiagnosed twice with very serious drugs just because I was cataleptic, everything became worse. illusions became rampant and at home they misunderstood it taking it to be witchcraft.
    This was all like that not untill I took myself to national hospital of mulago. Thank God that I got relieved just by knowing the disease I am suffering from eventhough I am not under any medication.

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