Saturday, January 19, 2013

Narcolepsy Notes #2 - The Trouble With Mornings

"You were born tired!"

I'll never forget my mom's words to me when I was still a grade-schooler. I had been complaining of being tired all the time. I think she may have just been annoyed with my frequent complaints or it might have been that she herself was always tired. She was a working mom after all. And maybe she just had the 'welcome to my world' attitude. But I took her literally. I thought that I was just a person who was always tired. 

Also, when my mom would come to wake me up for school in the morning, it was incredibly hard for me to wake up. My mom would get so frustrated! We had a schedule to keep after all and she would come in to wake me up only to walk past my room five minutes later to find me back asleep.

"Get up!" she'd admonish as she pulled on my arm to get me out of bed. 

"Mommy, my heads hurts." 

"You're a kid. You don't get head aches. Now get up! You can't be late for school and your father and I have to get to work!"

Waking up with a heavy head happened every morning of my life and still does. I never knew anything different. My poor mom thought I was just lazy and didn't want to go to school. Besides, my dad was the same way. He was terrible waking up in the morning. 

I remember him often running around the house in the morning trying to scramble to make it out the door on time because he often slept past his alarm. My mom probably thought I had just inherited my dad's "night owl" tendencies. 

Through high school my trouble in the mornings continued and I too always scrambled to make it to school on time. Like father like daughter. My first period teacher asked me to please do my make up at home rather than sit in her class and do it. Like I had time to do my make up at home? I'm sure!

I was a really good kid. But I was often in detention. But never for anything other than being late to home room. I wonder how many hours I spent in detention over the years. It had to be in the hundreds! The ironic thing is that detention occurred before school. How I made it to detention on time I don't remember.. But I'm pretty sure I used it to put on my makeup.

My last couple years in high school I was on the color guard and we practiced everyday before school. Every day I was late to practice. I tried everything to get out of the house on time. Going to bed early. Laying out my clothes the night before. Setting more than one alarm. Setting alarm clocks in other rooms so I’d have to physically get up and walk to them to turn them off. Have friends call me in the morning to wake me up. 

But even with these tactics, I would still fail. I would sleep through the alarms or wake up late to find that I had gotten up, walked in the next room to turn the alarm off only to return to bed with no memory of getting up in the first place. It was maddening! 

I did not want to sleep late everyday; trust me. It sucked!

One time in junior high, I had a friend sleep over. It was the middle of winter in Iowa. So we used electric blankets. My friend was sleeping in a sleeping bag on the floor with an electric blanket over it and I was in my bed. When I woke up in the morning my friend said, “Finally!” 


“You’re finally awake. I’ve been awake for hours! I turned your electric blanket off hoping to freeze you awake. When that didn’t work, I turned it all the way up hoping the heat would wake you up. But you just kept sleeping!” 

I found out decades later, this is a symptom of Narcolepsy. Many people with narcolepsy (PWN) have a really hard time waking up. Some, like me, wake up feeling exhausted, head achy, heavy-headed, or (like on my worse days) sedated. Somedays I wake up and I feel like I’ve been shot with a heavy sedative. The extreme grogginess and foggy head takes hours to go away if not all day. It’s horrible! 

Part of the problem with narcolepsy is that the brain is messed up on when to make you tired or alert. So while you fight like hell to stay awake during the day, you may have insomnia at night. Yeah. That’s fun. Spouses love it too! :) 

Besides, having trouble waking up, I also fought most days to stay awake during the day. But that’s a story for the next post. 

Below is a link to a really good article about Narcolepsy if you’d like more information on the disorder itself

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