Understanding the Beginning and the Basics of Narcolepsy

It's hard to know where to begin my story, but I guess the best way to start is by providing you with some context on my background first.

And then by beginning our journey into the realm of Narcolepsy, starting with first establishing what exactly is Narcolepsy and the symptoms that are associated with it.

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My story will pass through a few different locations, as I have been back and forth through 3 different countries throughout my life, as you can see below:

> 1989 - Born in Lisbon, Portugal

> 1989 - Luanda, Angola

> 1995 - Lisbon

> 1997 - London, UK

> 2006 - Birmingham, UK

> 2007 - London

> 2009 - Wolverhampton, UK

> 2012 - London > 2013 - Luanda > 2019 - Lisbon

To briefly explain my heritage, I am Portuguese/Angolan but until I was 24 years old, I did not identify with either of these.

For most of my life I was settled in the United Kingdom. I studied there, formed my life-long friendships, experienced the best and worst years of my teenage and young adult life...and naturally, fully embraced the culture I was immersed in, and didn't give much thought to my origins.

Eventually, I will delve deeper into other aspects of my background that will provide further information and context, but that's for later...

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So, in 2017, I was diagnosed with Narcolepsy (Type 1) while living in Angola. However, I was not diagnosed there.

Being that in Angola we did not have the medical tools required for this diagnosis, I was obligated to turn to Portugal (where my mum lives) where there are better medical conditions.

Angola is a country on the Western coast of Southern Africa, still somewhat underdeveloped and taking its first steps into hopefully overcoming many of its problems and traumas of its 30-year Civil War, having only very recently seen its end.

In Angola, I don't believe I know of a single person that has heard of Narcolepsy. It's truly not widely discussed in any way.

To be honest, I had never even heard about it until I began my own research into the symptoms I was feeling. I knew there was something wrong with me, I just didn't know what. And this wasn't a new phenomenon... I had suspected this for years.

But I ignored it.

For a long time, I did believe it was just me, it was a "trait" of mine...but as the years went on, I realized this could not be a simple trait...my body was trying to tell me something but I had never allowed myself to truly acknowledge it.

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So, what is Narcolepsy?

• "Narcolepsy is a chronic neurological disorder that can begin at any age and continues throughout life. It is a sleep disorder, involving irregular patterns in Rapid Eye Movement (REM) sleep, and significant disruptions of the normal sleep/wake cycle."

This definition was provided by the Narcolepsy Network website. They are a non-profit organization that provide patient support in the United States.

There are actually two types of Narcolepsy, Type 1 and Type 2.

Type 1 refers to Narcolepsy with Cataplexy, and Type 2 is just Narcolepsy without Cataplexy (although there is a possibility of this group developing cataplexy in the future).

Contrary to popular belief, Narcolepsy is not about being a "lazy" person or feeling "sleepy".

We do not just drop asleep in the middle of the street. We don't actually sleep more than the average person, our REM sleep just works differently, in such a way that it is actually distributed throughout the day and night.

Aside from the daytime sleepiness, most people don't actually know that there are other, more serious and even scarier, symptoms of this disorder.

What are the symptoms?

1. Excessive Daytime Sleepiness

• An overwhelming urge to sleep at inappropriate time during the day.

• Usually involves "sleep attacks" or "micro-sleeps".

• Sometimes have no memory of falling asleep during these periods.

• Often these moments only last a few seconds, although some can be longer.

• Experts say this urge to sleep would feel comparable to how someone without narcolepsy would feel after staying awake for 48-72 hours.

2. Disrupted Night-time Sleep

• Fall asleep quickly but with various interruptions throughout the night.

• Can sometimes feel wide awake for long periods in the night.

3. Cataplexy

• Muscles suddenly go limp or significantly weaken without warning usually related to feeling a strong emotion or emotional sensation (e.g crying, laughing, feeling angry, or scared).

• Can cause falling over or losing control of facial expressions.

• Can vary from seconds to minutes.

• Although sometimes it may appear the person is sleeping (eyes may be closed), they are very much conscious throughout this attack.

4. Hypnagogic and hypnopompic hallucinations

• Visual, auditory, or tactile hallucinations upon falling asleep or waking up. These can be frightening and confusing.

• Hallucinations when falling asleep.

• Hypnagogic (when falling asleep) and hypnopompic (when waking up).

• These hallucinations almost always feel extremely real and legitimate.

5. Sleep paralysis

• The inability to move for a few seconds or minutes upon falling asleep or waking up. It is often accompanied by hypnagogic or hypnopompic hallucinations.

• Can have distressing feelings as if something was holding them down, or that something/one was in the room with them.

So this is a very basic introduction to Narcolepsy.

It is not a straight-forward disorder, and there is still so much research to be done, so much we still don't know.

To those of you who relate and suffer from these same issues, please reach out if feel the need to or just want someone to talk to about your story.

To those of you, who are hearing about this for the first time, I would ask you to consider taking some time and thinking about the people in your life.

There could be someone you know who may suffer from this same condition...and not even know it.

I know there are countries that are further along and have greater awareness on this issue. But so far, through my research, it's clear that the USA in particular have far greater knowledge and community support for people diagnosed with Narcolepsy.

The majority of countries don't.

I currently live in Portugal, and there is no organization or association for Narcolepsy. It is certainly not common knowledge.

Finally, I honestly and truly hope this blog can provide some kind of contribution in raising awareness for Narcolepsy in any way possible, and maybe be a place where we can support one another in this daily battle.

Feel free to share it with people you know, as there will definitely be more information and personal stories to come from now on.

Thank you so much for taking the time to read this!