So... I have narcolepsy. Narcolepsy is defined as excessive
uncontrolled daytime sleepiness. No it isn't like the movies; I have
never fallen asleep in a bowl of soup. Yes I do fall asleep every day.
Sometimes I fall asleep multiple times throughout the course of a day.
I say this and people picture me in their minds curled up with a cozy
blankie napping on the couch. I don't nap every time I fall asleep!
In fact I very rarely take naps. When I say I fall asleep every day
I mean I doze off and snap back. My head lolls forward and then bobs back
up and I am awake again. Repeatedly! Sometimes I can get up and
walk around or do some jumping jacks to snap out of it. Sometimes I need
caffeine, although most forms of caffeine don't usually have much of an effect
but Green Tea usually works the best. Sometimes there is no help for it
but to take a quick nap. I can lay my head on my crossed arms upon my
desk for 5 minutes and Voila! I am better. Other times I have to carve
out an hour of the day to curl up with a cozy blankie on the couch. :-)
Regardless of the remedy I have to deal with this disorder every day.
It's exhausting!
I don't sleep like non-narcoleptics sleep and that is also
exhausting. I circle through the stages of sleep, REM, cycles super
quickly over and over. I don't get enough "Deep Sleep" and my
mind then triggers a sleepy response over and over all day trying to tell my
body that it needs to get more deep sleep even though this will never happen. On
the plus side I dream multiple times every night and can usually remember
several of them every morning. I can also nap and "pop" back
into my surroundings like I never slept. For instance, I can fall asleep
on short car rides while other people in the car are talking and when I wake
back up I can join right back into the conversation and I know where we are and
how far we have traveled. I very very very rarely wake up with any
instant of confusion or sleep transition. I am just awake again.
Poof! People often find this disturbing or humorous when
encountering it for the first time. In addition I can fall asleep almost
instantly every time I crawl into bed.
My insomniac friends find this amazing and infuriating. Sorry!
There are also many drawbacks to the condition on top of constant
sleepiness. One of the down sides is I
sometimes experience what is known as sleep paralysis. I wake up and am
unable to move. My mind comes out of the sleep cycle but my body doesn't.
This was absolutely terrifying the first few times it happened. I
had no clue what was going on and didn't know how to stop it. After a few
occurrences I was just frustrated when it happened. I would lay there a
few moments angry before falling back asleep.
I now know when this happens to just relax and fall back to sleep.
When I wake up again it would be a normal wake up.
Chronic neck pain is another side effect
of the condition. My head spends a lot
of time bobbing forward and I often fall asleep setting up or in other
uncomfortable positions causing neck strain.
I have had the same ache in my neck and tension headache since I was 17
years old! There are many down sides to
narcolepsy but this is my least favorite.
Along with narcolepsy, for some people, comes cataplexy, another negative
aspect of the condition. Cataplexy is where you fall asleep during times
of great emotion. I don't fully doze off but I go very weak and my mind
goes fuzzy for a moment whenever I laugh very hard. If I am standing my
knees will buckle and legs go wobbly, if I am holding anything I will most
likely drop it and my head lolls forward until my chin hits my chest. I
feel light headed and almost drunk. It only last a moment or two and I
know it is coming but I can do nothing to stop it. I always make sure I
am setting or at the very least leaning against something and that I set down
drinks, dishes and other breakables when something very funny is happening.
Precautions! This has turned out to be one of the more humorous
down sides to narcolepsy.
Sleepiness and cataplexy can both be treated with medication.
I have taken these meds for years and they work great, however pregnant
women and breastfeeding mommies cannot take these meds. Great! Now I am
not only narcoleptic but I am sleep deprived from waking up 3-4 times a night
to a nurse a baby that I may or may not have to quickly set down at any given
time so that I don't drop her while laughing hysterically. Awesome.
Moms and Dads please don't panic. I am on baby #4 and have never
come close to dropping a child. Like I said before I know when the
cataplexy will hit, it doesn't sneak up on me. That being said it is
still a danger and very frustrating. Don't mistake this post as a rant or
ploy for sympathy. I am well aware that there are many many more serious
conditions that one can be affected by, I am simply sharing my story.
Throughout my history with narcolepsy
there have been several funny happenings and humorous encounters. A few of these are as follows:
Fell
asleep in truck in parking lot waiting for friend to get of work so I could
give her a ride home. She walks out the
back door of work and doesn’t see me.
She has to call for another ride. Oops.
Fell
asleep at a stop sign. Woke up to horns. (Several times)
Fell
asleep in the middle of giving an order at drive through window. Snap back and can’t remember what I have
already asked for and have to ask teller to repeat my order.
Fall
asleep while standing in kitchen with my head on the counter waiting for the
coffee pot to finish brewing. Fell onto
living room floor. Thankful for carpet!
Fall
asleep while typing/working. DAILY!
While
at sleep monitoring facility undergoing a sleep study, the nurse asks me how I
think I slept the night before. Did I
fall asleep more quickly than usual or did it take longer than usual. I tell him it took me forever to get to sleep. "I just couldn’t get comfortable and let my
mind wind down," I tell him. He can’t help himself;
he laughs. “7 minutes,” he says. I look at him puzzled. “From the time I walked out of this room and
flipped off the lights last night until you hit your first complete REM cycle
was 7 minutes,” he tells me. That means I fell asleep
almost the instant he walked out the door.
“Well It felt like a long time,” I reply smiling.
Paid
a lot of money to take a helicopter tour from Las Vegas to the Grand
Canyon. Fell asleep on the way back and
missed the night view of the lights on the strip.
Went
with hubby, family and friends to a rare car museum. Sat down on couch in show room and fell
asleep. Hubby and crew proceeded to look
at the cars and leave me there sleeping.
The
list goes on and on. I fall asleep at
work, in movie theaters, at college basketball games, while driving and pretty
much everywhere else. My hubby has a
vast collection of me sleeping pictures in his iPhone. He and my girls even dressed me up with sun
hats and feather boas one time. At least
they are getting some amusement from the problem! I am Kylie and I am a narcoleptic mommy.
