Narcoleptic From Day One and Not "Failure To Thrive"

by Cyndi L.
(Kalkaska, Mi)

I was born in 1979 and 3rd in the line of siblings. I never cried in the middle of the night like my brothers did. My mom said she had to wake me up to feed me because I just never seemed to wake up and alert her. The doctors said i was "failure to thrive". I think that phrase made me the most angry.

As a child I played sports starting at age 5. I was always active in something and easy to put to bed at night. I remember mornings being a little difficult in elementary school.

By the time I reached 10-11 years old I figured out how to nap in choir and was pretty successful. I would laugh hard and my knees would buckle right out from under me. My brothers either laughed as I crashed to the floor or rolled their eyes that I was being too "dramactic".

I remember falling asleep on the floor of the living room and waking up to several people walking around me. Apparently my brother's graduation open house had begun. I blamed it on staying up late helping mom cook. I visited Cedar Point and fell asleep in line for the first rollercoaster.

High school was easy when it came to grades however staying awake was a whole other story. I lived maybe 5 miles away from the high school and my mom would pick me up from swim practice. I was out cold by the time we hit the driveway.

For Christmas my brothers custom made a mouse pad for me with a picture of me at maybe 5 years old standing upright still coloring a picture at a picnic table. I found the photo humorous and usually made my "sudden naps" the center of a joke. I played varsity sports so of course I would be a little tired..,right?

By junior year I slept straight through Chemistry (I seriously barely remember being there) and luckily was able to use the book and friend's notes to stay afloat. College started out pretty easy in community college but by the time it came to be in the dorms in a 4 year university it became more than I could handle and slowly sleep took over everything.

I have held jobs easily and could hide my tiredness however if it is a desk job it won't work out. If it is a driving job...no go. If it involves a lot of constant concentration...again no go.

I stopped avidly reading because I fall asleep way to easily. I had started smoking so I could drive longer distances along side leaving a window down, air blasting, and the radio. I had to start to listen and pay attention to my body hardcore. If I don't flip radio stations or sing along...I'm losing my attention. If I scream at the top of my lungs then adrenaline comes in swiftly to keep me awake until I can get to a point I can nap.

Finally a doctor believed me. I was 27 approximately. It wasn't cause I was heavier otherwise since birth I would have been "obese". I was chubby but never obese. Laziness and boredom weren't it either. Narcolepsy and slight cataplaxy with hallucinations between being awake and being asleep.

I feared falling asleep once I had a toddler wouldn't stay where I put her. I would even position myself in places where she would have to climb over me to get anywhere by stairs etc so I would wake to her climbing over me. Baby #2 really stressed me out but thankfully we lived with family at that time so it proved to be extremely helpful.

I'm now divorced and single mom of 2 girls 12 and 14. They use my drowsiness as a time to ask permission for silly things like ice cream before dinner. They understand I need a nap sometimes and try help where and when they can. I have to take naps before I head out to places and that involve staying up late. I cant drive long distances and then return home after a long day of fun. I just don't trust myself without an adult co-pilot.

I am now a preschool teacher and that wears me out! I can't sit down at rest time and be idle...I have to be doing something active and truly engaged in an activity.

I take Ritalin which so far seems to help in the morning in the late morning/12 and again at 4pm...provigil did at first but after awhile it was ineffective. Medicaid needs a lot of hoops jumped through but once you vet there it is all good. A neurologist working along side my doctor is the next step if I feel I need more ritalin.

Listening to my body, watching for the slightest of signs if they show (sometimes they dont), and trusted people around me to help notice signs has been the key to my "survival" of life.