Experiences

In this section Narcolepsy UK (previously UKAN) members share their experiences of life with narcolepsy. If you have an experience you would like to share please e-mail the 'Catnap' editor with the details.

 

While I was getting divorced (and before my Narcolepsy had been diagnosed) I shared a house with another girl. One evening we had asked friends round to dinner after work. When we had eaten, the four of us sat down to watch Star Trek, my favourite programme at that time. Soon the inevitable happened and much against my will I dozed off. Captain Kirk had left the Starship Enterprise to investigate trouble on the planet Somethingorother. He was surrounded by aliens and about to be exterminated, or dehydrated at the very least. All eyes were glued to the box, except mine. Snatching his communicator from his belt to contact the Enterprise with the now famous message 'Beam me up Scottie' he spoke urgently into it - 'Captain to Bridge Captain to Bridge' - I immediately responded with - 'Um. Yes? What?' - Eyes wide open. Whereupon everyone fell about laughing including me, when I realised I had answered to my nickname of Bridge (short for Bridget). So embarrassing! But that's Narcolepsy for you isn't it.

 

It was due to an article a few years ago in the Independent that I became convinced I must have Narcolepsy. It spurred me on to see a consultant, two in the end. My Narcolepsy was confirmed due mainly to my having cataplexy. The contact with UKAN (now Narcolepsy UK) has been invaluable in reading other accounts of their experiences. I have so far been unable to attend any of the meetings, as I am dependent on being driven such long distances and meetings in the afternoon are not the best time for me. Day to day I survive by being incommunicado from 1.30-4.00 pm. This restricts my life style and as yet I have not explained it anyone other than family. This I am considering, at the moment, explaining to a wider circle what Narcolepsy is, with the hope that it can become more widely known and understood and could considerably help the unknown narcoleptic out in the society I frequent.

 

Having suffered from Narcolepsy for thirty years there have been many funny experiences - here are two I recall. One Sunday in church I was sitting next to a married couple who I had not seen before. It was embarrassing when I awoke to find my head on the man's shoulder. I was travelling home on the bus, it was very full but as it got further into the suburbs several had got off. I must have fallen asleep from the beginning of the journey. Eventually the lady sitting beside me woke me up. She said I had been asleep a long time and wondered if I had gone past my stop. I looked out, two more stops. I explained to her that I had Narcolepsy, when she immediately moved to another seat. She must have thought it was infectious. Not so funny an experience is when I go to sleep with a cup of hot tea in my hand and it goes all over me. This happens quite a lot. My face has fallen into a plate of baked beans, but it was in my own home. I did go to sleep during a meal in a restaurant which was awkward. Everyone had finished but me and my lunch was cold. Such is life as a narcoleptic.

 

To simulate what I felt like
go fifty miles on a pedal bike
ignore sleep for a couple of days
then try setting about your normal ways.

I could reach this state in an hour dead
straight from the time I rose from bed
I'd fight and fight to keep my eyes open
knowing it was a waste of time then.

I've slept everywhere one possibly can
and other places unfit for man.
No need for a special spot
wet or dry, warm or not.

Forbidden by law to sleep underground,
so I dare not nod off where I'd be found.
I'd slip up some old road, that looked nice.
and go to dreamland with the mice.

The best years of my life went by
and even now I wonder why
no-one near, whom I turned to for aid
took side with me in this crusade.

Last year brought one strange twist of fate
that I'd like to take time to relate.
Given some drug to lift depression
I didn't sleep, six weeks in succession.

'They shouldn't have done that' my doctor said.
But what a change not needing bed.
I didn't sleep in any way
awake twenty four hours of every day.

There is still a whole life story to tell
a lot of times being quite well
but to keep in front has been a fight
a mixture of doing wrong and right.

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