Honestly, very few people know my diagnosis because there are too many facets to this disorder and I'm not comfortable with sharing. I have been struggling with my narcolepsy the past few months. One week, I'll feel like an adrenaline junkie. The next week, I'm completely exhausted. One week, I'll go to bed in a timely manner. Another week, I'll spend hours unable to sleep though I'm physically beyond my limit. At times, I try to express my frustration with the situation but I can't articulate how exhausted I feel. When talking to friends and family, many acquaint it with just being tired when it is so much more. And I know people don't realize how insensitive this comment is but my blood pressure rises every time I say I'm exhausted and someone remarks to me that they are exhausted as well. I want to scream, "really?" at them. Julie Flygare, an advocate for narcolepsy research, describes it best on her blog post, Sleep's Choice.
"It’s been said that an average person would have to stay awake for 48 to
72 hours straight before they would feel the same violent call to sleep
I experience daily ... Imagine being hungry but denied food for 48 to 72 hours. I’ve never gone
so long without eating, but I would expect that the experience would
reach dark places of mental and physical anguish. If I spoke to someone
who hadn’t eaten in 48 to 72 hours – I wouldn’t say, “I know how you
feel” because I missed breakfast yesterday." - excerpt from JulieFlygare.com
I've tried explaining my condition but I lack the words to fully express the everyday obstacles, but Julie has written a beautiful piece on her experiences with the disorder. Narcolepsy symptoms vary in their intensity for each person so I do not suffer through everything she describes, but a good portion of her article could describe me.
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