Pre-Narcolepsy Diagnosis = Graduate School, Marriage, Kids, Great Career, Social Life, Physical Fitness, Extrovert, Grow Old Gracefully! Post-Narcolepsy Diagnosis = Live Day to Day, No Romance, Single Forever, Can't hold a decent Job, No Point in Making Social Plans, Too Tired to Exercise, Introvert, Body falling apart piece by piece.
To live with Narcolepsy is like waking up and wondering if I ever fell asleep. Trying to remember what day it is, so that I can figure out what I’m doing. Taking my wakefulness meds with my first cup of coffee and trying to not lie back down on the bed. Wondering if I’ll have enough energy to leave my house and run some errands. Trying to remember what I think I forgot.
For me it's like staying awake for 24 hours then starting your work day... Everyday. With the addition of feeling like you're in one of the Nightmare on Elm Street movies because what I can experience upon falling asleep or waking up makes Krueger seem like a whimp.
I tell people I have orexin deficiency in my brain so cannot control when I fall asleep or wake up or when REM sleep happens. It doesn't really convey what the symptoms are like, but it stops people trying to compare their own subjective experience of sleepiness and dreams with yours and thinking that they know what your symptoms are like-because they don't and they simply can't if they have normal orexin levels!!! It stops people who don't have narcolepsy trying to compare their experiences to yours. And I sometimes also ask people: Would you force a diabetic to eat loads of sugar? Would you force someone who's broken their leg to walk on it? So why force someone who can't control their sleep cycle to stay awake when they are totally exhausted? People just don't understand that strategic napping is a real therapy, a necessity, not a luxury! We do not choose to feel exhausted and we may not have known that we had an orexin deficiency before our diagnosis, but we certainly do not need a neurologist to tell us we need to sleep during the day! I think we had kind of figured that out ourselves in all our years of non-diagnosis and exhaustion when this wasn't taken seriously by anyone! At least, that's my experience. Now I've given up on trying to explain what it feels like and just focus on trying to get people to take responsibility for their prejudices. They don't need to understand, they can't understand, they need to see past their prejudices!
I usually try to explain it to people in 2 different ways:
1. Imagine taking some Benadryl or sleeping pills and fighting to stay awake all day. And then drink caffeine in the middle of night and try to sleep.
2. Imagine a time when you had awful sleep- like a sick child or newborn. And you can’t think and you’re angry and tired and feel awful.
Both of these are narcolepsy. And that’s only the sleepiness part! Not including the cataplexy or awful dreams.
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