The Narcoleptic Teacher

The Narcoleptic Teacher

A couple of years ago I decided to do an article for a newspaper company about teaching with narcolepsy.  Needless to say the newspaper fabricated certain information, I assume to sell papers!  I have decided to post this blog explaining what it is and how I manage this debilitating condition.  You may be surprised to know that you could be teaching somebody with this condition.

What is Narcolepsy?

For those of you who are unaware, Narcolepsy is an autoimmune disorder.  For some reason, still unknown, my immune system decided to destroy a certain receptor call orexin.  This controls the sleep/wake mechanism in the brain.   How common is this?  It may surprise you that this is as common as Multiple sclerosis or Parkinson’s.

There are several symptoms and I suffer from all of them, but I have never let this hold me back.   This symptoms include: EDS, excessive daytime sleepiness.  This means I am constantly fighting to stay awake, which in itself is tiring to say the least.  I do not nod off whilst eating my food, I do not fall to the ground when teaching and I do not fall asleep whilst walking down the street.  If I did I wouldn’t be fit to teach.   What does happen is a need for me to have some sleep during the day.  Yes, of course in my PPA time I do nod off, marking isn’t the most exciting or stimulating activity.

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Cataplexy:  This is a paralysis of muscles and ranges from a drooping head to fully collapsing.  I have the more extreme version, which is triggered by emotion.  If I laugh, cry or I am shocked my body collapses within a split second.  I am fully aware of everything that is happening around me but I have no reflex responses, I cannot speak, see or move and my chest muscles collapse.  However, at work I fight my emotions and have learnt to make sure that I direct all my energy into thinking of something else when these situations arise so that I do not collapse.  This is again tiring and at home, behind closed doors, I do not care.  I let my emotions take over and within a split second I am on the floor.  I have to allow myself to do this.  Can you imagine never feeling emotions?  No probably not.

Hallucinations and sleep paralysis:  When falling asleep and waking up I often see, hear, smell and feel things that are not there.  I often have frightening vivid dreams.  I can be awake but paralysed and this is often accompanied with horrific dreams.

Disturbed night-time sleep:  It isn’t true that a narcoleptic sleeps 24/7.  We all often have disturbed sleep at night.  I sleep for a couple of hours and then dream and wake.  I wake up as often as 20 to 30 times a night.  So this leads to more day-time sleepiness.

I was diagnosed at a fairly young age.  I was 18 and at university.  Narcolepsy was not heard of much in the 1990’s and so people didn’t understand it and still people have a warped view of the condition.  I put this down to the incorrect attention and publications from the media.

I struggled to get through education and teacher training but I made it in the end.  I have never let this condition stop me from achieving my own goals in life.  Yes, my life is different and I adapt my lifestyle so that I can work.  It isn’t an easy ride, I work most of the time and have little family time, but I need to work, I enjoy what I do.

I often get asked how I manage to stay awake all day when teaching, the answer is that I don’t really know.  I have medication which will ease the symptoms but it does not stop them. I know I can only stay awake if I am active and I suppose teaching a practical subject does help.  I rarely sit down and I talk a lot, maybe a little too much.

Do my students know?  No.  Most of them have no idea.  The only time I have ever told a class was when I was pregnant and I had to be signed off.  I have a lovely year 11 group and so I told them.  They were shocked about it and had no idea, I obviously hid it well.

Why am I telling you all of this?

Well one, you can achieve whatever you wish to achieve as long as you never give up.  Life is tough sometimes and you can get stuck in a rut.  I have been there I have come through that stage and I have no regrets.  Two, due to the H1N1 swine flu vaccine, a few years ago, a number of children developed narcolepsy.  Not just one or two, but several children.  Those children will be in your primary school class.  They will be on their way to high school soon.  I decided to form a help group for parents who have children with narcolepsy.  I was shocked by the amount of children and teenagers out there who have this condition.  Narcolepsy normally appears in the teenage years but takes many years to diagnose. Each person is different.  Just because I can do something doesn’t mean someone else can do the same thing, this is an important fact to remember.

As professionals I ask two things of you. One is to think twice before you label a child as lazy, before you make that comment ‘go to bed early’, before you complain about them falling asleep in your lesson.  That could have been my sat in front of you at 15, too scared to tell anyone that I couldn’t sleep properly at night, too scared to say that my muscles went floppy when I laughed.  I am not saying all ‘tired’ children have narcolepsy, but you never know!

The other, some of you already have narcoleptic children in your school.  You know because you have been told.  Do not assume that they are not working at every spare second that they have.  They have no life as a child.  They come to school, work, fall asleep, go home and sleep again.  They spend most of their time feeling exhausted and trying to stay awake.  They have little time to socialise.  They struggle to do homework, as they are so tired.  These are not excuses, this is reality.  Image if that was your child.  Image seeing them have fun, but every time they do they collapse so at a young age they learn to suppress their emotions.  Image seeing them tell their friends that they can’t go out after school or at the weekend as they as too tired to move.  The youngest child I have met was 4 years old.  He spent his nights crying in a corner because he could see the witches in his bedroom.  He is too young to understand his condition.

I have had parents contact me because the school that their child is in has not educated staff about this condition.  Students have been told off for falling asleep, not completing homework and not arriving at school on time.  Can you imagine how that feels as a parent or that child?  No IEP in place, not support, no alterations in place for exams.  One student was given a lower chair in science in case they fell asleep and fell off their stool, and that was it!  However, some school have put many procedures in place and these students strive.  I would like to think that this is the norm.

My last point is a narcoleptic working at their optimum is equivalent to somebody who does not have narcolepsy staying awake for 72 hours and then working.  Could you do that day in day out?

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Thank you for reading.

  • Posted by Jane Barlow
  • on May 27, 2014
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