“You picked this doctor because she had time to see you. Thank God for her time. The words she spoke will change your life.” Diagnosis: Narcolepsy!
I am writing this blog post in response to Julie Flygare’s request for fellow persons with Narcolepsy to participate in her “Dear Diagnosis Blogathon”. Julie has become a strong Narcolepsy advocate, and I am honored to add to her collection of stories.
“Happiness is being diagnosed with Narcolepsy” – said no person ever on the day of the actual diagnosis. However, nine years after getting the initial news I am able to find happiness in my Narcolepsy and how it changed my life.
It is late 2004 by the time you are ready to read this letter. This year has been a downward spiral of stressful and life changing events for you personally. Your home life took a turn for the worse and after making some drastic changes you are now getting back on your feet again. You are working at a full-service brokerage firm, trying to be the next great Financial Advisor mass-produced by their training program. Your circle of friends has changed, and you are just trying to make it from one day to the next without… well, simply without falling asleep!
Lately you have been feeling much more tired than normal – no, tired isn’t the right word. “Sleepy” is more like it. Anywhere and any time seems appropriate for a nap! Thankfully you have realized why the ladies room is also referred to as the “restroom”! Surely everyone must utilize these facilities for a quick cat nap during the day – you certainly do! These cat naps become more spontaneous and unpredictable, until one day you fall asleep in a client meeting, a small intimate setting between you, your work partner and Mr. and Mrs. Retiree.
Fast forward through “the talk” with your employer where he tells you that you have to start getting more sleep at night and spend less time being hungover. Which is rather ironic, because you have been too tired to go out at night, so it certainly isn’t because of your partying ways that you seem to doze off.
This monumental fall day in 2004, you are sitting in the exam room at your new general practitioner. You have seen her once before, a young female Indian doctor, whom you decided to consult just to prove to your employer that you are deficient in some vitamin – and that is the logical cause for your sleepiness. The doctor enters the room with all the results from the full blood workup you had done last week. She smiles and tells you that everything looks normal and fine. Your heart sinks, you had hoped for a simple reason with a quick fix to your problem.
You initially chose this doctor, not because of her credentials, or because she was recommended to you, but simply because she had an available time slot for an appointment. Thank God she had the time, because the next words out of her mouth will change your life. She smiles very sweetly and says these words to you: “I am only a few years out of med school, but I remember learning about this particular sleep disorder that I think you may have – NARCOLEPSY! We only spent a few hours on it, so I will need to refer you to a specialist for further testing. But here are some printouts. Please read them and tell me what you think!”#DearDiagnosis. Getting a #Narcolepsy Diagnosis is not easy, but it might just be OK! #NarcolepsyNotAlone Click To Tweet
You look at her and start laughing. The only thing you really know about Narcolepsy is from the movies, where people fall asleep facedown in their plate of mashed potatoes – that CLEARLY isn’t not you… or is it?
You start reading her handouts, reviewing the symptoms one by one: extreme daytime sleepiness – check, sleep paralysis – check, cataplexy – in a mild way – check, hypnagogic hallucinations – check and finally, automatic behavior – check! Tears stream down your face and you look up at her with a quiet and humble “Thank you. This IS it!”
Later a sleep study will confirm the doctor’s initial diagnosis of Narcolepsy with mild cataplexy. The neurologist even calls you a “text book case”. Wow, you have never been a text book case of anything in your life, never mind a rare sleep disorder! Suddenly your whole life makes sense. All the things that were quirky to others, but in your eyes were normal were due to your Narcolepsy. Your “childhood epilepsy”/ episodes of falling and being unable to move for a few moments were cataplexy. Your sleep paralysis were not signs that you were losing your mind, but merely REM sleep taking over your body, as you were falling asleep, yet still awake. And the cat naps in the restrooms… well those were not as normal and widespread as you initially had thought!
You will spend the next year completely consumed by your diagnosis. Narcolepsy will truly take over your life, as you try to figure out how to minimize your sleepiness trigger, which is stress. You will change career paths and get out of sales and back into the administrative side of financial services. You throw yourself into yoga, acupuncture, meditation, healthier eating – anything and everything that may reduce stress and therefore bring your Narcolepsy back to a manageable point. You start taking Provigil (the Narcolepsy medication of choice at that time) and you inform your employer that you must take daily naps for about 20 minutes.
You become an open book about your diagnosis, sharing your story with everyone who crosses your path. Informing people and warning them of your sudden sleep attacks is another way to reduce stress and take pressure off a situation – all in an attempt to hopefully avoid a spontaneous nap.
After a year of trying to find yourself and figure out how this diagnosis will affect your future, you find Mr. Right, Mr. Understanding, and Mr. Accepting – all wrapped up in one tall handsome man. You will marry him, you will have children with him – many actually, (in 2013 you will be expecting your fourth boy). He will support you and appreciate every aspect of you. You will have a great career, make new and understanding friends, and you will go onto helping others through their medical journeys because of your newly garnered understanding and compassion.
You will find time for naps, love and lots and lots of happiness. Narcolepsy will force you to slow down, change your life and it teach you to TAKE LIFE ONE NAP AT A TIME.