Wake up to Narcolepsy!

Lost time.

19 October 2007

12:35

The pain is ever present

Sharp, knife-like stabs and a background gnaw.

Where are the nurses?

How long does it take?

Patience is ebbing, as pain is flowing.

Ah! Assistance at last.

Relief floods my mind, momentary warmth.

Then pain. Different pain.

The pain of surprise; complete  disbelief,

mingled with suspicion.

Is this a conspiracy? Am I going  mad?

Pain surges again.

Shock  opens new  wounds and fuddles the brain.

The pain should begin subsiding.

At least I can anticipate a shorter wait.

But the shock lives on, and opens new horizons.

What beast is this that swallows time ?

That devours memory and erases consciousness.

Stealthily preying, un-noticed, unsuspected;

A spectre of a far off world.

Unpredictable, dangerous.

If I can loose time, have no record, no proof.

If I can loose memory, have no inkling or awareness

Of things as I do them, or say them,

What next?

How can I prove innocence, ignorance, absence?

This worry torments me, though I live a good life.

This is a monster who steals sanity too.

But at least I know now…conclusively.

I have been aware, like many, and suspicious

of strange occurrences, but this is the proof.

I am armed with my weapon, my knowledge! 

The bigger more pervasive monster lurks near.

Society’s ignorance, unwillingness to listen,

or learn anything new.

Now that is the real fear.

 ©DF 2007

Written quickly, and in rough form, by no means a good poem, but it illustrates one of the problems narcoleptics face…lost time. Often we misplace things, forget things etc, the same as other folk, but sometimes it can be more serious. The example in the poem is of my experience in hospital, when I was waiting for my meds, in a lot of pain, and when the nurses came, they said they had given me them, ten minutes ago. They were as shocked as me, but they should have read my notes and had an inkling of what had happened.

The point in the poem about danger, is that people have been known to kill whilst asleep, and have no memory of it. I don’t think for one moment that would happen to me, (gosh…I hope not!) but there are plenty of senarios that come to mind…taking meds twice, because you have no memory of the first time, being the obvious one here.

Narcolepsy is a chronic sleep disorder for which there is, as yet, no cure. It commonly manifests itself during adolescence, although it can begin earlier, in childhood, or much later in adulthood. The condition takes the form of a syndrome, with four main components. People with the condition may have all four of these symptoms, or only one or two, and the degrees to which each individual suffers each symptom can vary greatly.

Most people with narcolepsy suffer from Excessive Daytime Sleepiness. This is usually the first symptom that people notice, (but not always), and for many people, it is the most devastating symptom. For some it means feeling drowsy throughout the day, even though they have had ample sleep the previous night. For others, it can mean overwhelming drowsiness, and sleep attacks, forcing the person to take naps. Often it is impossible for them to control the urge to sleep. The feeling is so strong that sometimes people are asleep before they have time to do anything about it. Attacks can be very sudden. In severe cases of excessive day-time sleepiness, people may have trouble keeping a job because of the need to nap frequently or at inappropriate times, for instance during meetings, or whilst driving. It can interfere with every aspect of their life, jobs, family, leisure pursuits etc. To add to their problems, people with narcolepsy often find it difficult to sleep at night, and wake frequently. Read the rest of this entry »

The first of these was The Official Patients Sourcebook on Narcolepsy - a Revised and Updated Directory for the Internet Age.
James N.Parker, MD and Phil;ip.M.Parker, PH.D., Editors.

This describes itself as ‘A Reference Manual for Self-directed Patient Research’. This description grabbed me immediately as usually folk are dissuaded from doing their own research, and discouraged from learning anything that might directly contravene information from their medics. Well, at least until lately. With the advent of the world wide web, this attitude is less common,  now being  challenged an replaced by tentative encouragement to research. There is a certain philosophical resignation that recognises that if people want information, they will get it one way or the other, so better to provide it, and make sure it’s accurate.Having said that, the web itself is a minefield of myth, misrepresentation, or inaccuracies, so the researcher still has to beware. A book such as this, I hoped, would lead me to pastures new - with information that could be trusted.

When the book arrived, I was into it straight away. I was not disappointed. The list of contents is long, and looks to be comprehensive. The first chapter deals with narcolepsy, what it is, who gets it, how it is diagnosed and treated. It also looks at how individuals and their famiies can cope with narcolepsy. At the end of the chapter is the first of several vocabulary builders. These are helpful for lay people who have not come across some of the words and terms used in the previous chapters.
The second chapter is about how to find guidance about the condition; organisation, associations, finding doctors and health services, and how to work with your doctors. There ia another vocabulary builder at the conclusion of this chapter.Chapters three to nine look at possible sources of information, including clinical trials , studies on narcolepsy, research from patients, books, multi-media information, databases for physicians and dissertations on narcolepsy.
At the end of the book there are several appendices, dealing with researching your medications, researching alternative medicines, finding medical libraries and more on problem sleepiness.

I have browsed some of these chapters and found much to interest me, but I have not followed up any of the web site links yet. The editors make the point that most of the links, regardless of origins and age will be updated regularly, so information should not be out-dated, even though the book will age. As is the norm with websites, one link will lead to others and then to others, so hopefully updating will happen automatically.

I am looking forward to using this book and intend to start very soon. I will keep you updated with anything I find along the way.
If you are interested in the book, it is published by Icon Health Publications www.icongrouponline.com/health and is available from online booksellers, www.amazon.com  and www.barnesandnoble.com/ who carry all the titles in the series, including similar books on insomnia, restless legs syndrome and sleep apnea.
I have just had a look at their site. There are, shall we say, lots of books on all kinds of health issues. Happy reading!

I set this blog up a few days ago, and true to form it’s taken me a while to get back. Why? Because I can’t stay awake. The medication I have been given isn’t working and it will be a while before I can do anything about it. However, in the meantime, it’s good to know that what I experience is also experienced by others. It helps me cope, knowing that I am not mad! I belong to a forum which is for folk with narcolepsy. It is run by a site which specialises in sleep disorders called http://www.sleepnet.com/ It is a big site covering all the major sleep disorders, such as Sleep Apnea, Insomnia, Narcolepsy, Restless Legs Syndrome, sleeplesssness in children and infants and sleep deprivation. I had been diagnosed with sleep apnea, and was looking forward to being re-energised after a few nights with a C-PAP machine  (Continuous positive airway pressure). Unfortunately it didn’t help with the sleepiness but it did stop the apneas, so I am still using it, but that left me wondering what else was going on. It was by accident that one day I stumbled across a description of Narcolepsy on the Sleepnet site and investigated further. Suddenly, reading everyone elses’ accounts of their experiences, the jigsaw pieces began to fit. After a while I plucked up the courage and asked to see my consultant again, but although he sent me for another sleep study, he was at pains to tell me that he did not think it was narcolepsy. However, by now I was utterly convinced and I have recently been diagnosed with narcolepsy. Although my current treatment is not working, I am hopeful that by trial and error, I will eventually find something that will relieve this perpetual sleepiness.

For more information on sleep disorders visit http://www.sleepnet.com/.

As a start to the poems catagory,  I give you my own poem about the condition, which was meant to reflect my frustration at being constantly interupted by dreams, whilst awake and trying to write. By the time I had finished, I felt great relief and was able to see some advantages to this ‘problem’, the main one being an unexpected aid to creativity.The poem isn’t great but I hope it will give some insight into one of the aspects of this condition.

Double Vision.

I explore new worlds;
I read and create;
Key-tapping unfurls
ideas innate.

I am engrossed;
And wholly absorbed;
when a fleeting ghost,
colourfully daubed,
floats across my vision.
And then many more!
A bright myriad collision
of shapes, dancing before
my eyes, without permission!
And still they come…
Not one an image of my volition,
and yet powerless, I succumb.

Hold on! My eyes protest
and coming to, I realise
my dreaming state I must arrest.
Gently return uncomfortable eyes
to a position where they can focus,
once again on my concern-
the computer screen - my current locus;
or perhaps I should adjourn?
But I need to continue
my exploration, and so
I begin my study anew;
hoping the visions will go;

But within half a minute,
another sprite has appeared.
A curse I emit…
It is just as I feared.
This dreaming is weird
as I am still wide awake
(or at least it appeared)
‘til my eyes start to ache.
However, I know
It’s a well known paradox
acknowledged long ago.
But my sanity it mocks!

It is part of my narcolepsy,
So I am used to intrusion;
but it could cause apoplexy
or mental delusion,
to those who have never
been asleep whilst awake.
No matter the endeavour
or the precautions you take,
it will arrive when it wants;
Chaos to administer;
Your sentience haunts,
it’s filtering, sinister.

For sometimes it’s difficult
to tell reality from dream.
Confusions result;
And things aren’t what they seem.
However, with time
it becomes less difficult
to control this raw pantomime;
the daily assault.
But it can help with the process
Of fresh creativity
Helping express
One’s positive activity.

I doze a short while,
Giving in to the dreams,
And then start again.
I stick to regimes.

© DF2007

As I have recently been diagnosed with narcolepsy and have thus been researching the subject, it has become apparent that there is very little literature featuring the condition or those who have it in whatever form. I am sure there are many frustrated writers out there who feel that if they could just keep awake for five minutes longer, that book might progress faster, might even get finished. I find writing theraputic. After writing a poem about narcolepsy, which I thought was expressing my frustration with the repeated attempts to write, I found that not only did it make me laugh, but also gave me a more positive outlook. So what if I sometimes dream whilst awake. Those annoying images that creep upon me uninvited can sometimes bring inspiration, and have on more than one occassion led to successful creativity. Rather I should celebrate my inner pictureshow, although I have to confess that it is still a little annoying at times.

My intention with this blog is to encourage other narcoleptics who
write, to join with me and post their work, especially if it helps raise awareness. I would also want to encourage aspiring narcoleptic writers to join me and give their perspective on this condition, and help educate others. Most fiction and films seem to treat narcolepsy in the age old stereotypical way. Person awake; person falls to the ground, asleep. Or person goes into trances etc. This not a true representation of narcolepsy, although obviosly it is near the truth for some who have it. Most of us, however, have narcolepsy in varying degrees with a huge difference in the severity of each symptom. I will shortly put information and links to sites about narcolepsy.