Sunny is a member of our Facebook private group and wrote this on her profile to share her struggle. We are grateful to her for allowing us to share her story here…

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I slept thru so many classes in school I am sometimes still surprised I got enough credits to graduate. I slept thru even HomeEc before and trust me, falling asleep while using a sewing machine is not a fun thing to do. I had a science teacher who thought it quite hilarious to stack items on me when I would crash in his class. Beakers, erasers, books, etc. Everyone got a kick out of it too. Well, not ME but I was sleeping in his class therefore I suppose he felt I was fair game for humiliation. I transfered out of his class after first semester. Not b/cCataplexy he was a bad teacher, but b/c he was an unsporting one and I had enough problems. Being horridly ADD and dyslexic was bad enough I had enough laughs @ my expense elsewhere in my life, I didn’t need more while @ school.

Dating was fun. I had a couple of ‘steady’ boyfriends and oh yes, I fell asleep on them quite often. At the cinema, while bowling, roller skating, laughing, swimming, restaurant outings, ball games, you name it. I am sure they thought there was something wrong with me and well, they were right. They never voiced it aloud but the question was always there in their eyes. But how can you explain something to some/anyone when you don’t understand it yourself? Even my parental units considered me lazy and stupid.

I didn’t know of anyone else who would wake up in places no one ever fell asleep. I even fell asleep riding on the back of my boyfriends motorbike on more than one ocassion. I slept in the shower, on the loo, in parking lots, drive up windows, while cooking, washing dishes, side streets and more than a few ditches. I slept thru every concert I ever attended including the Eagles twice, Molly Hatchet and @ a Lynnyrd Skynnyrd STANDING UP to name just a few. I fell asleep @ Kings Island while ON a roller coaster, fell off a MerryGoRound once b/c I zoned out. I would fall asleep while walking the cornfields detasseling the plants and falling asleep while mowing the yard on the rider was a given.

I got my drivers license @ 16 and promptly drove into the side of a bridge when I fell asleep coming home from work one night. I’m still happy I didn’t kill someone. It was however, THAT night that I realised something else must be wrong with me other than being the ‘lazy-sluggish-layabout-loser’ that I’d always been accused of being. Of course it would still be 24 more years, four kids, 4 jobs, moving 150+ miles south, many, MANY countless unplanned naps/sleep attacks and three marriages B/4 I was finally able to get a sleep study @ the insistance of my (still) current husband. But @ 16, it was pretty much hellish b/c I thought I was well not all there especially when in the throes of those pesky Hypnocogic Hallucinations that can really throw one for a loop and give you pause for your grasp on reality.

When I was 16, NO one had ever heard of NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. and you were just figured to be well… Lazy or Crazy.

Or both.

Life however, @ 51, is better now than it was @ 16 for many reasons… but now I have restricted my own driving down to a 10mile radius for simple safety for everyone on the road including ME. I have learned a lot over these years of the things I can do and the things I cannot, how far I can push me and when to not try. I know when I can safely get behind the wheel or anything else simply b/c I know it’s safer if I dont’ do this or that. I have missed appointments, days @ work, parties, and other outings simply b/c I know I am not going to be able to function while there or am too ‘unalert’ to even attempt to try attending. I even walk to work now more times than not for it is safer for me to walk the 10min it takes to get there than to get in the car for the 2 min it takes to drive it. I know if I take a walk in the neighbourhood, to not walk out more than 7min out and 7 back least I find myself snoozin’ on a neighbours lawn. I also know that while walking the neighbourhood, to take a dog with me as I do when I drive short distances. Their presence helps keep me more focused and allows me to (sometimes) remain awake for the entire trip no matter how short it be.

A couple of years ago I fell asleep while riding our Scooter. No one else was on it, just me. Wrecked the crap out of it and damn near killed myself in the process. How can anyone fall asleep while DRIVING a scooter? Well.. I can. And did. I remember getting ON the scooter, I remember turning on the scooter, I remember putting on my helmet and other safety gear and that is all I remember until I was rudely awakened by finding me hurling into a couple of logs and a tree about 1000 yards from where I’d been parked.

Yippee.

But, despite this I realised that I was done. That was the last time I drove alone anywhere, the last time I drove the scooter and the last time I took any chance like that again.

I also discovered I was also a diabetic that year (Gee Thanks Genetic Pool) and this in turn has only enhanced the Narcolepsy to rear its ugly head more often and harder when it does. I even turned down a very prestigous well paying job baking for a LV company simply b/c I knew I could not in good conscience responsibly accept it with my driving and other limitations. I used to have the abiltiy to travel the measely 30+ miles to Louisville, KY to hang out with friends but have severely curbed this activitiy in the past 2yrs. Now to me 30+ miles is the same as a scarey 300 miles. Now I do well to drive the 3/4 mile to the market and back w/o having to nap in the parking lot or pull over somewhere and zone for 15 min. or so.

I miss my friends, I miss socializing, I miss the fun, the laughs, the bantering and the hugs but everyone is safer if I stay here on my side of the bridge, @ home and not behind a wheel. I’ve even become a user of the Miller Bus Line here, taking it to Evansville and Indy in order to visit family. It costs a bit, but all in all… I’d rather pay out X amount of $ for a RT ticket, than XXX amount of bucks for a stint in the hospital due to accident. Or better yet, a spell of years in jail for harming someone else.
The bus ride is LONG, and it’s BORING but I can sleep whenever I need to nod off and it is SAFE.

That is what matters.

Narcolepsy STILL sux but it is good to KNOW now that I am not insane, I am NOT lazy and I am not Crazy. Well… I ‘am’ but you know… not certifiable anyway. Over the years however, it has become worse, more sneaky, more debilitating and more powerful in its ability to drag me from this ‘awake’ world to darkness in the snap of a moment despite the medicines available to keep me ‘alert’ but often still, not fully ‘awake’ and functional.

I plug along however, doing my utmost to ‘live’ even if it is sometimes doesn’t seem to be much of a life anymore. I have much more in my life than so many others and I am grateful for it all.

It is what it is and it’s what I have and I am dealing with it as each day comes and goes.

In the awesome words of one of my favourite artists (sadly the late) John Denver:

“…. Some days are diamonds some days are stones
Sometimes the hard times won’t leave me alone
Sometimes a cold wind blows a chill in my bones
Some days are diamonds some days are stones.

Now the face that I see in my mirror
More and more is a stranger to me
More and more I can see there’s a danger
In becoming what I never thought I’d be

Some days are diamonds some days are stones
Sometimes the hard times won’t leave me alone
Sometimes a cold wind blows a chill in my bones
Some days are diamonds some days are stones.”