READER REPORT:

'I can't move or talk but I hear everything'

KATY STONYER
Last updated 05:30 01/08/2014
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NO WARNING: Katy has narcolepsy - a neurological disorder that effects how her body decides when, where and even if she sleeps.

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There I am on the ground AGAIN. People just walk by giving me, according to my friends around me, disgusted looks mixed with that feeling they should be doing something.

For those that do ask, my friends tell them I am fine, I am just having a cataplexy attack. They smile and nod, not really understanding, and go on with their day. How I envy them.

Because even though I am on the ground with my eyes shut and can't move or talk, I can hear everything. I hear the whispers of the people thinking I am drunk or stoned or lazy. I hear the shopkeepers wonder how long I will be taking up space in their store as it's not a good look for them.  And I feel shame.

I want to get up and run out that shop, get off the pavement or even the road and be just like everyone else. But that isn't how my life is going to go.

After many years of being misdiagnosed I finally had a sleep study and was diagnosed with narcolepsy - a neurological disorder that effects how my body decides when and where I sleep, and even if I get to sleep.

Since I was about 14, I had horrid nightmares that seemed so real you could smell the gore. Then there was the fact I seemed to fall over when there was nothing to fall over (cataplexy).

I would always wake up and see spiders walking down the bedroom wall towards me but I was paralysed (hypogognic hallucinations and sleep paralysis). Plus I never got enough sleep, like, ever.

For me, my main symptom is cataplexy, which is where your body falls asleep but your mind is wide awake. This can happen up to five times a day.

That's five times where my body goes 'nope, we are done with this whole standing up being productive stuff, the floor looks good from here'. Next minute I slump to the floor. I can be there for a few seconds to over an hour.

I hear people talk about how they never get enough sleep and sympathise. Despite being tired 24/7 it's a good day if I get 2-4 hours of broken sleep a day. And the sleep quality I get isn't like everyone else's, that would be too easy. It's not restful sleep. Meaning even when I sleep I am not getting what the average Joe would get.

What gets me most though is people's attitude. They think I am lazy or just making excuses. They don't understand that this rules my life and I hate it.

I can't work, as I have been deemed an OSH hazard due to falling round desks, computers etc. I can't drive as that is just an accident waiting to happen.

I spend my life trying to fight for sleep that never comes, wishing for a cure or even something that would let me use the education and training I spent years getting.

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The more tired I am, the more often I will be on the floor. But how do you explain that you need to sleep more than the normal person and even that won't be enough?

I live on a cycle of stimulants and sleeping aids. They don't do much but without them I wouldn't be able to do anything at all. I must look like I am a walking dispensary popping pills just to keep myself conscious.

I always warn any new people in my life about narcolepsy and explain how tired I am etc. But without fail they never get it till they see me collapse.

They don't see my eyes go out of focus or me struggling to concentrate on whatever is going on. They think me being tired is like it is for them after a night out and then work the next day... maybe times five and we might be getting close.

I get sick so easily as my immune system doesn't work as well due to lack of sleep. Sometimes I feel like the doctor and my chemist should be selling me shares in their companies!!

All I want is to be like everyone else. Be able to go to work and drive and be awake or even just mildly tired, and not to be covered in bruises would be awesome.

Instead of feeling sorry for myself I decided to contribute to society in other ways. I give free advice online, am studying online and take in people to my home to teach them self esteem and assertiveness.

What I will settle for is for people reading this and learning. Just because you can't see me fall or see how few hours of sleep I have had or how sick I am doesn't mean it isn't real or frustrating.

At the end of the day, this is the life I have and I will live it to the best of my abilities.


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