How Being Narcoleptic Is Not Funny

I keep falling asleep, even first thing in the morning after eight hours sleep the night before.

Being a perpetual student, I’m always trying to learn something, but the minute I pick up a book to start reading / studying, I go to sleep.

Also I enjoy going to meetings / seminars / workshops, like the dormouse in Alice in Wonderland I sleep right through them. Sometimes this can be quite hilarious, especially if I’m at a meeting. I don’t know how it happens, but I will wake up long enough to come out with a relevant suggestion, then I go back to sleep.

But I can assure you that whatever is wrong with me it’s not contagious. You can’t catch it off me, even if I breathe on you.

I know now I have Narcolepsy. Yet I had it for twenty-years before I knew what I had.

Narcolepsy is not an illness. It’s not a disease, I won’t die from it, unless I fall asleep while crossing the road; no it’s a condition that I have to live with for the rest of my life.

How long have I had it? About 45 years. It was just after my younger daughter Susanne was born, about 1962, that I found myself having to have an afternoon nap along with my two daughters. But with having a two year old and a newborn baby, plus a husband and house to look after, it wasn’t surprising that I was tired.

So life went on. I used to read to the girls at bedtime. Problem was that I would fall asleep midsentence. Michelle my eldest daughter would wake me up shouting, ‘What happened next mum?’

When the children were in double figures I started work again. But because of my falling asleep on the job, I kept having to look for new jobs. My CV’s had to have a few porkies in them.

Then in 1971 I was accepted as a Student Nurse. I got through two years of my three-year course, sleeping through the lectures, then having to read my textbooks in order to keep up with what I should have learned in class, even passing my exams.

But eventually I had to leave my nurse training as my constant sleeping meant there was a possibility of me harming a patient; without meaning to of course.

What Was Wrong With Me, Other People Didn’t Keep Falling Asleep?

Even though I worked in a hospital for just over two years, nobody picked up on what was wrong with me.

Me And Further Education

As I had left school at fifteen I had no educational qualifications. So being a sponge for knowledge, at aged thirty-one I went back to school. I would see my daughters off to school each morning, then I’d go to school ‘Mums’ School.

I studied for a year and came out with six GCE O’Levels. I say studied and I meant double studied. I once again slept through all the lectures, so I had to study my textbooks by night.

It Was Twenty Years Later That I Found Out What Ailed Me

In 1981 I read a letter in our local newspaper. Dorothy Hand wanted to start a support group for Narcoleptics. She described the symptoms. Now at long last I knew why I was always falling asleep, I wasn’t alone with the problem of always nodding off, and what I had, had a name. Narcolepsy.

I went to the first meeting. There were thirty of us. We sat in a large circle. Each of us in turn stood up and told the rest of the group what our problem was One man was a long distance lorry driver, he had to pull into a layby every half hour in order to have a little doze. Another man didn’t dare to laugh or he’d fall to the ground in helpless heap. He also had Cataplexy.

Most of the people there had already been diagnosed as having Narcolepsy. I went away from that meeting knowing at long last there was definitely a reason why I kept falling asleep. I was encouraged by the group to go and see my doctor as soon as possible.

I had been to my doctor some years earlier, but he said I was probably bored, so that was why I kept falling asleep. I have never been bored in my life.

So a couple of days later, I went to see my doctor. Just by a stroke of luck, my doctor was on holiday, so I saw a locum. This time I didn’t tell him my symptoms and hope he’d work out what was wrong with me, but I asked him, ‘What do you know about Narcolepsy?’

‘Sit down,’ he said. ‘Tell me all about it.’

So two weeks later, I was at the hospital seeing a Neurologist. After various tests, he confirmed that I did have Narcolepsy. This surprised my husband, who had accompanied me to the hospital, because he truly believed that I was just tired, as I was on the go sixteen hours a day. I think ten of those hours were spent in a semi waking condition or maybe a better description would have been like a zombie.

When the Neurologist confirmed that I did have Narcolepsy, he also told me I had it mildly. So he gave me some medication that turned out to be Amphetamines. I remember taking one tablet and soon after, I started feeling sick, so I flushed the rest down the toilet. I have never taken any medication for it since then.

Over the past twenty-five years I have seen people with much more severe symptoms of Narcolepsy than I have. Medication does mean they don’t sleep as much as they would without the medication, but as time passes, the dosage has to be increased regularly.

Thankfully, frustrating as it is to be sleeping my life away, I am no better or worse than I was when I started with Narcolepsy forty-five years ago.

But I consider myself lucky.

Apart From Falling Asleep Frequently, What Else Happens?

Others that have Narcolepsy, besides having the sleeping bouts, called EDS (Excessive Daytime Sleepiness throughout the day, also have Cataplexy. This is brought on by an emotion, could be laughing, crying, joy or sorrow. Their muscles give way, and they will fall to the floor in a helpless heap. Unfortunately, while in this helpless state on the floor, they are fully aware of what is going on, but for the few minutes it lasts for, they are unable to move or speak.

There are more minor things that I do suffer from. One is called Restless Legs, although I do realise that Restless Legs are not just for Narcoleptics.

And the way I can fall asleep any time of the day, you would think I’d have no trouble falling asleep when I do officially get into bed. But that is not the case. Sometimes it can take me up to an hour to drop off to sleep. Then I sleep about two hours and wake up again. This sleep pattern can go on right through the night.

Some Other Problems That Can Go Along With Narcolepsy

· Learning Difficulties and Memory Impairment · Short Attention Span · Eye Fatigue · Binge Eating · Alcohol Sensitivity · Lack of Sexual Interest · Depression · Automatic Behaviour

Is It A Common Problem?

Narcolepsy is a condition that can strike anybody at anytime. Although some people have Narcolepsy as children, other people, myself included first start with the symptoms in their early twenties. There are said to be about 10 000 cases in the United Kingdom, but there are Narcoleptics all over the world. Male or female, rich or poor. From a street cleaner to a Prime Minister. Colour, race or creed, Narcolepsy does not discriminate. Not a proven fact, but it is believed that Winston Churchill had Narcolepsy.

Can Narcolepsy Be Cured?

No Narcolepsy can’t be cured. Once a Narcoleptic always a Narcoleptic. Medication can help the Narcoleptic to live a better quality of life, but I couldn’t say a normal life. Some days are better than others.

It becomes difficult to plan things, because as a Narcoleptic, I never know what I’m going to be like from one day to the next.

So with Narcolepsy being a way of life. I just have to get on with living as best I can.

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