Narcolepsy reflection

Over the past few days I’ve been reading ‘Wide Awake and Dreaming’ – a memoir by Julie Flygare about her life with narcolepsy.

Since being diagnosed with narcolepsy I’ve been on the hunt for information and forums to help me understand more about my condition. Unfortunately this has been hard to find so reading about someone else’s experience with it has been comforting and educational. There were so many symptoms I’ve had over the years that I haven’t been able to fully attribute to CFS. There were also diagnostic questions I’d been asked by specialists, but I wasn’t sure if what I’d experienced was what they were specifically asking about so I’ve on occasion dismissed a symptom or not given it as much focus as it’s deserved.

One prime example of this is around an unusual experience I had one night last year…

I’d woken up during the night (a frequent occurance for me) and went to roll over but caught sight of someone standing in the bedroom doorway. My partner was sound asleep next to me and the kids were at their mother’s so there shouldn’t have been anyone in the house to be standing in the doorway. I tried to scream but nothing would come out. The figure in the doorway just stood there, getting off on the fact I was scared but couldn’t move. I was frozen.

Eventually I was able to release a scream, waking my partner in the process. He immediately turned on the light to find me screaming with my eyes closed.

I was convinced someone had been in the doorway and sure that I was awake. Because I had previously experienced mild supernatural encounters in the past and I was so convinced I’d seen someone, I began to think it was some extreme supernatural experience.

The events of that night still haunt me as I haven’t understood it. But now, after reading about someone else’s experience with similar events, I am now almost relieved to discover it was yet another symptom of narcolepsy.

It has taken reading someone else’s memoir to really understand what it is I’m going through. Medical reports can only explain things so much, it’s not until you can read or hear a first hand experience that it all starts to make any sense.

My only hope now is that I can one day help someone in the same way Julie has inadvertently helped me.

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4 thoughts on “Narcolepsy reflection

  1. These kind of dreams are actually really, really common. We have the sense of being frozen as our bodies are paralyzed during REM (dreaming) sleep so we don’t act out our dreams and hurt ourselves. It is also common to experience this paralysis as having a heavy weight on our chest (sometimes interpreted as a monster!). These dreams and sensations can often be interpreted by people as alien intervention – that’s where a lot of alien abduction stories come from!

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  2. I still need to read that book. Have you tried to avoid sleeping on your back? These episodes are much more common for me if I fall asleep on my back. I’ve been picked up and carried about a room, I’ve had people break into my house, all hypnagogic hallucinations I believe. The worst is when I get a clue that it’s a dream and wake up but there’s a new monster there. Finally I’ll realize I’ve not woken up at all- I’m still asleep and there’s nothing I can do.

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    • I generally sleep on my stomach or side. And I thought I was just rolling over on my back, but obviously I was sleeping that way. I’d never experienced anything like it before – very scary. I’m lucky it’s only happened the one time.

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  3. Pingback: A day-in-the-life of a narcoleptic | Not alone illness

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