A Day in the Life...

Many people have asked me why I am writing and why now.  I want to make it very clear that this blog is not about sympathy, it's about helping people understand what is going on in my life and in the lives of people with narcolepsy.  I think that most people, even those closest to me, don't understand how I feel daily and I think it is important for me try to explain.

Before I get started I want to share a couple of images about narcolepsy and the misconceptions:

Time for Bed
Let's start with bed time since that is the best time of day in my world.  I could literally come home and go to bed at 5:30 or 6:00pm.  I try my hardest to make it until 8:00pm because that seems like a socially acceptable time to go to bed.  For a long time it bothered me that I went to bed before most of my students, but I quickly got over that.  My roommate and I call it "Life at the Lorax" when she is doing something like making dinner or watching TV and I am going to bed.

The truth is, I have been thinking about going back to bed since I got out of it.  I generally fall asleep pretty quickly and don't really move at all.

Sleep Phase Hell
One of three things generally happen after I fall asleep.  I would say it's like a choose your own adventure book...but I would always choose the same option that it doesn't happen that often.
1. I fall asleep, stay asleep and life is good.  (20% of nights)
2. I have a vivid dream or sleep hallucination.  This is often just a vivid dream that happens while I am asleep.  This turns terrifying when hallucinations are involved.  I believe it is because I am coming in or out of REM and some sort of hallucination happens.  There have been times where I have "seen" things in my room and have come to with my bed or room completely torn apart.  Usually this only happens once a night, but there have been nights where it has happened multiple times. (30% of nights)
3. I wake up a few hours after I fall asleep and I am WIDE awake.  I cannot fall back asleep until shortly before I have to wake up for the day. (50% of nights)

Waking Up
The worst part of my day.  If my alarm goes off during REM sleep, it is like waking a dead beast.  I feel like I am waking up from hibernation.  If I wake up during non REM sleep, it is still extremely hard to wake up.

Getting Through the Day

 

I am generally good to go for 3-5 hours after waking up, showering and taking meds.  This is the only time that I feel like a normal human being.  Once I start to crash, I crash fast.  It feels as though I didn't sleep the night, or four nights, before.  I space out, am extremely foggy, I forget things, I can't formulate thoughts or find words, I get angry easily, and I have headaches.

The absolute most frustrating thing is not being about to do anything and to want to sleep but know that sleeping actually isn't going to fix anything.  It is extremely frustrating to me to not be able to do the things that I want to.  My life has changed, friendships have changed, and I have changed.  Narcolepsy controls my life, and I would give anything for it to not.

It is hard to put words to the way narcolepsy controls my life.  The thing that I want people to know is that it is a neurological disorder and not only a sleep disorder.  It's an invisible illness which I did not expect when I was diagnosed.  I feel lucky that I am without cataplexy and am able to drive and live my life independently.  I cannot imagine feeling this way constantly and living with the fear of having a catalexy attack.  

Narcolepsy sucks, but I will continue living my life trying to figure it out.

Time for a nap...

LS