Kleine-Levin Syndrome

(September 21, 2014)

I think it's been about... I don't know maybe two months now? Sorry... honestly I have no idea. It's like I've lost all sense of time since everything first started happening. I literally check what time it is every chance I get. I feel it's one solution in this battle I'm having in attempt to try and keep control of my mind.

I'm scared, I mean it, I honestly really am. That's why I'm doing this, writing down everything that's happened to me. I need some sort of way to deal with this. So... so that I don't lose my mind, so... so that I don't forget.

It was sometime around August when it first happened. I went to bed around 1:00 which is perfectly normal for me, damn my insomnia. I think I actually fell asleep around 3:00 or 4:00, those with insomnia will understand what I mean. I feel like the select few of us are chosen to have this disorder for a reason. To have to lie on a bed for hours straight with only our thoughts to accompany us. We're wiser, more understanding of our minds and more organized with our thoughts. Which is exactly why when something happens that disables us from keeping track of our thoughts it's so frightening.

For the past two months I have found myself waking to find that it's been days since I last woke up. Do you have any idea what thats like? To wake up and find out that a whole week has passed since you last fell asleep? It's terrifying, it screws with your mind and makes you question your sanity. I've even tried staying up for days on end but it never works, I just end up blacking out at some point. Just let me tell you it is no fun to wake up inside a police station and be told that you were found passed out in the middle of a sidewalk. Apparently I nearly got hit by a car one time, I blacked out while I was crossing the street. I was simply trying to get to school and nearly died in the process.

I'm gonna do some research and try to figure out what's been happening to me. Hopefully I can find the answers I've been looking for, and maybe event prevent myself from getting killed in the near future.

(October 3rd, 2014)

It's been a whole two weeks since I last woke up. Within that time I have been expelled from my high school due to them thinking I dropped out. Not to mention I've also been assumed comatose, I woke up to find myself in a hospital bed staring at a white ceiling. That was a traumatizing experience, considering I hate hospitals in general.

It's surreal... you hear the phase "Your life can change in a single moment," but you never really pay much attention to it. In the short time I've been dealing with my "affliction," so much has happened to me within a short period that I can justify that statement no questions asked.

Since the last time I wrote I said I would try to find out what was wrong with me, and I think I finally have.

I found this online...

"Kleine-Levin Syndrome (KLS) is a rare and complex neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior, and a reduced understanding of the world. The disorder strikes adolescents primarily but can occur in younger children and adults. At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), sometimes waking only to eat or go to the bathroom. Each episode lasts days, weeks or months during which time all normal daily activities stop. Individuals are not able to care for themselves or attend school and work. In between episodes, those with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction. KLS episodes may continue for 10 years or more. KLS is sometimes referred to in the media as “Sleeping Beauty” syndrome."

Kleine-Levin or "Sleeping Beauty" syndrome, it all makes sense now. All the things that have happened to me, the long periods of lost time, my blackouts, my inability to notice any change in my behavior or body, everything!

Now that I understand what's wrong with me maybe things will be different...

(October 5th, 2015)

It's been a whole year now, it wasn't until a few days ago that I realized I still had this journal. I think I might share it in the hopes of connecting with others like me. I might even find some reassurance from doing so.

I will admit that since I found out that I had (KLS), it feels like a heavy weight has been lifted from my conscience. I feel like I have a grasp on my sanity and it's like I can properly think again.

My biggest fear right now is that I'll fall asleep and won't wake up until years later. I fear that I'll wake up on that hospital bed surrounded by the smell of Lysol and other disinfectants, and I'll be right back to where I started. Traumatized, scared, and most of all not in control of my mind once more. I never want to deal with that again, if I'm forced to experience that one more time I truly will lose my mind.

My parents are now aware of my disorder and are extremely supportive. I'm not sure if I can handle my mothers tear stained face every time I wake up anymore though. I feel like I'm pushing her to the point of depression and it's driving me crazy. It's even worse when I wake up to find that a holiday had passed such as Christmas or some other major event. I missed my birthday apparently, it was in July, I'm 16 now. I've been asleep for the past three months according to my dad. I wasn't really upset about this though, I mean I already missed my 15th birthday.

Overall, even when I feel like things are getting better, fate likes to laugh in my face and pull some sort of crap on me just to make me feel like all hope is lost again.

(October 11th, 2015)

I recently started being homeschooled, me and my family kind of decided that going to an actual school wouldn't be the best idea. Imagine it, I'm in class and all of a sudden I'm asleep and I won't wake up, just imagine the vast chaos. If I'm lucky, (which I'm not) and fate decides not to screw me over, maybe I'll graduate soon.

Life isn't as smooth as I wish it could be, but I'm dealing with it. I have my family with me at all times and their a big help.

Someday, maybe in the future, doctors might be able to find a solution and I might be cured. Considering my luck that's probably highly unlikely but I've still got what little faith I have left in me.

This is probably my last entry, I finally feel like I finally have a grasp on everything and I have no more need to write. I'm hoping that I might be able to impact someone... even if just a little bit.