Ok my story of Narcolepsy.
Im not sure where to start so i'll start from the beginning.
From the first day I started high school I came home exhausted everyday. My tiredness was extreme all throughout my teen years and I had been tested for all the most common deficiencies and causes. We just put it down to puberty and growing.
* Photo of me asleep after school the year I started highshool
Years down the track when I was doing my VCE, my last years of high school, I was sleeping through classes and during recess and lunch. I knew deep down there was something wrong with me but I just sounded like a hypochondriac.
Dreams were always very real to me and often I would confuse them and reality but it wasnt until I was in my senior years at school (around the age of 16/17) that I started to hallucinate, however I wasn't aware I was hallucinating, I thought it was real.
Some of [what I think were] my first hallucinations are still some of the most vivid in my mind still to this day.
My bedroom was a in a studio separate from the house. I could see the shadow of the clothesline through my window and I was sure one night I had seen the shadow of a tall alien like figure walk past, I was terrified however I couldn't move anything except my eyes and I couldn't speak so I forced myself back to sleep and put it down to being a bad dream.
Not very long after this I awoke lying in bed, again unable to speak or move anything but my eyes, which is what I now know to be sleep paralysis that would always accompany my hallucinations. There was an alien sitting beside me on the bed who seemed to be giving orders somehow and another crouched over my chest who had a foul temper. Although I couldn't move I somehow seemed to bite it and it snarled at me and I saw sharp razor like teeth even though I recall it having little if no mouth at all. The next day I'd asked my parents if they'd heard anything that night knowing my Dad was a light sleeper and would've heard anything and they hadn't so I just started to think I was going a bit crazy but mostly put it down to another dream.
Not long before I turned 18 I noticed that when my friends would make me laugh my neck would go limp and my head would just hang there. I could still talk but couldn't use the muscles in my neck until I'd fully stopped laughing. It was hard to believe unless you saw it and it had to be a proper laughing, hysterical and it wasn't until the night of my 18th birthday dinner celebrations that my Mum saw this for herself.
Soon after this I was with a friend getting videos and she was being funny and I had real trouble standing when I laughed. My knees would wobble and go weak and I'd stumble into stands of videos trying not to knock them over. As we left the store and crossed the road to her car she made a joke and I fell to the ground like a ragdoll in the middle of the carpark. Luckily it was late and there were no cars around. My mind was completely conscious. I could hear everything around me but couldn't move as I was still laughing inside my head. It wasnt until I forced myself to stop laughing that I could stand again. This is what I now know as Cataplexy. A loss of voluntary muscle use with extreme emotions; for me, laughter.
My Mum and I made a trip to my GP and he basically said it sounds like a nuerological issue (I was surprised he even believed me!) and referred us to a Nuerologist. Once the appointment finally came I explained my Cataplexy experiences and he just nodded amd asked me about whether I'd had any hallucinations or seen anything abnormal to which I replied to him about 'that time with the aliens'.
He straight away answered "You have a textbook case of Narcolepsy". I just bawled my eyes out as he described the disorder; cried with relief that I wasn't crazy, that my fatigue I'd struggled with for years wasn't just me being lazy.
12 years down down the track and I'm medicated and living almost like a normal person.
I often take naps during the day or if I'm working I know when I start to get tired I need to change things up to stimulate my mind or else I go into a trance like state where my body is trying to shut down and go to sleep but my mind is fighting it trying to stay awake.
As a measure against cataplexy attacks I noticed I distance myself from situations that might involve me laughing hysterically or I just completely tune out. I still have Cataplexy during family dinners, its almost guaranteed as my siblings know my sense of humour and know how to make me laugh.
I struggle alot from depression too which is another part of Narcolepsy. Just imagine knowing you are literally going to sleep away more than half of your life! It's especially hard at the moment as I am looking for work. I need to go into retail as I love fashion which makes it stimulates my mind better helping me stay awake. However there seems to be a small ratio of retail work available compared to people looking for work.
My dreams are always vivid and I can often confuse them with reality. My hallucinations are now minimal thank God to the medication but I do still have them occasionally where I usually find someone has to snap me out of it.
I guess in some ways I am lucky that I have all the symptoms of Narcolepsy; the fatigue, the cataplexy, the hallucinations and the sleep paralysis. Not all people who have Narcolepsy have all the symptoms which would make it so much harder to diagnose. And apparently [in America] 1 in every 2000 people have Narcolepsy, alot go undiagnosed.