Personal Stories

Each of us has our own story of how we came to understand and cope with the fact that we have this incurable neurological disorder. Every person's experiences with this illness are unique, though we share many similar moments.

Members of the Support Group are available to talk about their experiences with narcolepsy. Contact us, if you would like to speak with someone. In the meantime, you can read the following account by Cher Scott, a member of our group:

Narcolepsy – Living in the Twilight Zone

If you had symptoms like dropping off to sleep, muscle collapse, temporary paralysis, hallucinatory or nightmarish experiences and trance like behaviour after you had been in a car accident, what would you do? Probably go and see your doctor. And what if you did that over the next couple of years only to be told that you could have narcolepsy but it was more likely to be depression and stress due to your unhappy marriage situation. How would you feel? Frustrated, angry, like you were going mad. Yes all of these and more because some of the doctors even intimated that it was all in my head.

Six weeks after the accident I returned to my job as a hospital receptionist, drifting in and out of sleep throughout the day. Much of the time I wasn’t aware it was happening until I looked at what I was typing, a jumble of letters not making any sense. Sitting with colleagues at lunch time, soon the inevitable happened and I would doze off. Coming to minutes later I’d blurt out something that I thought was relevant to the conversation only to find that they had moved on. I learned to laugh at myself along with my colleagues, but inwardly I felt so frustrated. I knew that I had something wrong with me, why couldn’t the doctors see it as well.

It became impossible to stay at the hospital. I had come to realise that if I could move around I would not doze off the same as when I was just sitting in the one place. So I applied and was successful in becoming a Community Development Officer for the N.Z. Society of the Intellectually Handicapped, as part of a team helping to establish handicapped people living in the community. I loved my job with a passion. Working with the clients, teaching them skills enabling them to live independently wasn’t a problem but the meetings and paper work were a nightmare. Finally the strain of trying to hide my disability became too much, forcing me to walk out without even a goodbye to those clients and staff I had come to love. Real Estate, now that should be OK I would be moving about, taking clients into various houses, but I didn’t reckon on the in house training every morning, listening to our boss talk and watching videos. Being told that if I couldn’t stay awake through the training sessions I would have to leave. I left immediately, so embarrassed. Working in a kiwi fruit pack house, going in to trance like behaviour and trying to stuff two kiwifruit into one hole on the packing tray, juggling the fruit from one hand to the other, all the while being totally unaware of what I was doing, coming to with those around me laughing.

Constantly dropping off, narcolepsy doesn’t care where you are, in church, at meetings, watching a movie, talking with friends. Off you go, much to the amusement of those around you. The only place I felt comfortable was at home, there it didn’t matter, if I wanted to laugh crumpling in a heap on the floor, or slide off the chair I could. If I dropped off during breakfast, lunch or dinner, it wasn’t so bad because I felt safe.

Shortly after retiring for the night I had what I call awake dreams – people breaking into the house trying to kill me, a head with blood dripping off it sitting on the cabinet beside my bed. Being raped, seeing the face, feeling the pain, all the time unable to move or cry out. It all feels so real. Wouldn’t you think you were going mad? Sometimes I wonder what would happen in a home invasion. How would I react, would I simply freeze and crumple in a heap on the floor? I don’t know and I hope I am never put to the test. Over the years I have learned to laugh at myself, but with some people I still feel uncomfortable.

So what are narcolepsy and cataplexy? The United Kingdom Narcolepsy Association briefly describes it as a malfunction of the sleep/wake regulating system of the brain

Its most common manifestation is an irresistible tendency to fall asleep, even in the unlikely circumstances such as in the middle of a conversation or at a meal. The other conspicuous symptom is a sudden loss of muscular control triggered by amusement, anger or excitement, which is called cataplexy. The effects of cataplexy range from dropping of the jaw to slumping of the head, to buckling of the legs and even collapse of the whole body; they last for a few minutes or up to many minutes.

Other symptoms of narcolepsy are temporary paralysis on falling asleep or awakening, often accompanied by hallucinatory or nightmarish experiences; moments, but sometimes extended periods of trance like behaviour in which routine activities are continued on "auto-pilot.”

Interruption of night-time sleep by waking periods marked by quickening of the heartbeat, over-alertness, hot flushes, agitation and an intense craving for sweets.

I now never feel refreshed after a 'supposed' sleep…I don’t know what it is to sleep right through the night, getting up with sleep hanging over me. I feel this poem sums it up pretty well:

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” doctor said
But what a change not needing bed
Awake twenty-four hours every day
I didn’t sleep in any way.

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.

– Anonymous

This has been my life for the past twenty-one years, and in all that time have I never found a doctor who understood enough about narcolepsy or cataplexy to help me. This year now aged fifty-six, with the help of my husband, we found Dr. Liz Humm. Thank you Liz for taking the time to listen to Tony and me. Referring me on to a physician, giving me hope that it would at last be confirmed I had narcolepsy. YES! a diagnosis, I am now taking medication enabling me to stay awake all day. It was all so simple, so why is it so hard to get a diagnosis?

Cher Scott, Northland NZ.