When people hear I have narcolepsy, their first response is usually "oh that falling asleep thing". And to make life easier, I tend to say " yeah that's it". But Narcolepsy, like so many other things in life, is rarely that simple.
Everyone has seen the "funny" pictures and memes on the internet, the videos on YouTube. People with Narcolepsy falling down. I'm as guilty as anyone of perpetuating the myth that Narcolepsy is a funny illness that just means sleeping a bit more.
So here's my attempt to put the record straight and explain my Narcolepsy and how it affects me.
I do fall down asleep. Let's all get that laugh over with. This, in my case, is known as Cataplexy and in most cases is linked to my emotions. Imagine being afraid to laugh, to cry. Even pride or shock are triggers for me. I cannot watch a horror film or a comedy without having someone to supervise me.
When Cataplexy attacks, I can suffer a number of symptoms from the mild - head bobbing, slurred speech - to the major. A complete loss of muscle tone. A puppet with the strings being cut. And all the time, I'm awake inside and aware.
Bathing is a major pitfall for me. How many readers enjoy a long soak in the bath? Maybe taking in a book and a glass of wine? I've lost count of the number of times I've nearly drowned. Taking a bath, and hearing a car door slam outside. Or a cat fight in the street. Or even a dog barking if I'm relaxed enough. Each of these can be enough to trigger a Cataplexy attack which is a loss of consciousness - although inside I'm awake and screaming. Imagine feeling the water going up your nose and into your mouth and not being able to do anything. The more scared and panicked you become, the more impossible it is to move and the more you can feel yourself breathing in the water.
The only reason that I'm still here and blogging is Prince Daddy. He has pulled me from the water, drained my lungs. He knows what is likely to trigger an attack and the most likely effect it will have on me.
I cannot drink as even a small amount of alcohol makes me incredibly drunk incredibly quickly. So that glass of wine is out. I also sober up very quickly, finishing a night out as though I had not drunk anything at all. Some say this is a side effect of the medication, some say it is my metabolism. All I know for sure is that alcohol stops my medication from working for days ahead and so drinking becomes more trouble than it's worth.
Although Narcolepsy is commonly known as a "sleep thing", it is classed as a Sleep Disorder because although sleep is a feature of Narcolepsy, the quality of the sleep is very poor and not necessarily restful. From the moment I go to sleep, I dream. And I dream until I wake. Non-Narcoleptics cycle through a number of stages of sleep including deep sleep which allows rest. I do not. And the hormone your body releases in order to paralyse you and prevent you from acting your dreams is not always there. So I regularly act out my dreams.
When my body does release the paralysing hormone, it does not always dissipate as it is supposed to, meaning I can "wake", be still stuck in a dream, and unable to move or speak. As a child these were known as Night Terrors-a precursor to Narcolepsy, if we had only been told.
Because my body does not always distinguish between sleep and wake, I lapse into sleep during waking hours - not always realising. I recently blogged about hallucinating a cat. This is one, more humorous example. Some of the hallucinations are more scary. Having a pet made it easier to tell truth from fantasy. If the cat reacted, it was real. If the cat ignored it, then I was probably confronting my own dream.
This doesn't even touch on the dangers of Automatic Behaviour. The wandering off, the waking up, realising I've lost 10 minutes or more of my life and done things/been places I had no intentions of.
The limiting that comes with having to plan a life around Planned Naps in order to limit the amount of Cataplexy attacks that may come later.
Next time I'll blog about Narcolepsy and Family. About the effect Narcolepsy has on Prince Daddy and Little Prince. And on the people around me.
I just hope this helps others to understand.
