Narcolepsy and me

Have you ever laughed so much that you can’t lift your head up?

Or have you ever been to a theatre performance so powerful that you were literally unable to stand for the standing ovation at the end?

What about going on a date with your husband and not being able to keep your eyes open, no matter how hard you fight the urge to sleep (and coffee has no effect!)?

I’ve done all of these and more – I have Narcolepsy and Cataplexy.
I am one of the lucky rare disease lottery winners. I am one of the 0.05% of the population who has this. Our family is especially “lucky” because 2 of my daughters also have narcolepsy (and purely coincidentally, one of their best friends has it too!)

The 22nd of September was the first World Narcolepsy Day. I was planning to have this written and published on Sunday…. But you know, narcolepsy had other ideas.

For most people, when I tell them I have narcolepsy, they reply “oh like the narcoleptic Argentinian in Moulin Rouge!”

Moulin Rouge, directed by Baz Luhrmann, 2001

The other common (really annoying and condescending) response is “Oh yeah, I know how you feel! I’m always exhausted too!”
This is perpetuated by so many memes on the internet about how tiring normal life can be. The sleep attacks in narcolepsy are often described to non-narcoleptic people as trying to function after staying awake for more than 78 hours straight.

How does narcolepsy affect me?

For me, I find that most days, I am pretty normal (as normal as I get anyway!). I take medications every day to help stay awake and to minimise the cataplexy symptoms. This means I can drive, work, and do all the housework and mum things, as long as I look after myself.

My symptoms probably started in my 30’s but as I was a young mum who was working rotating shifts as a nurse, I just thought everyone felt the same. I wasn’t diagnosed until my mid-40’s when I’d stopped nursing, my girls were more or less self-caring, I was eating well, was physically active and still I was exhausted.

By that stage my eldest daughter had been diagnosed with narcolepsy and I asked her specialist if he thought that I may have the same disorder. He had only seen one other family with multiple members but said it was possible. So, he sent me off for testing. Now this is an adventure which has just got to be experienced to be believed. I will try to describe it for you…

First you need to come off all stimulants including coffee, coke, tea, chocolate and all the other good things in life, for 2 weeks prior to the test. Then you head into a hospital or clinic in the evening where the clinician proceeds to attach wires to just about every part of your face and body:

“So just sleep like you normally would”
This is my daughter wired for sleep

In addition to the things stuck over your face and into your hair, there are also wires attached to your legs and arms and a tight strap around your chest to measure your breathing. They set up a microphone to record you snoring or sleep talking and also a camera to record you all night while you sleep….

Then they tell you to lie down and sleep as you normally would!

And that’s just the first part of the test! The second part occurs the next day when they will tell you to lie down for a sleep every 2 hours and wake you up again after half an hour. This torture is repeated 5 times and you have to stay upright and alert in between!

Most people won’t fall asleep at all in under 10 minutes and take around 40 minutes before they move into REM (rapid eye movement sleep or dream state). I averaged 8 minutes to fall asleep, the fastest time being less than a minute and went straight into REM sleep for most of the naps. This was positive diagnosis for narcolepsy.

And now the panic….

Most people are pleased to finally be acknowledged and know there is a perfectly logical and treatable reason for feeling the way they feel. I just panicked!

I had always had an amazing ability to dream – I connected to Spirit there, I could leave my body and fly, I travelled into the future and watched things happening from above (and then could remember when they did happen and would always look up to where my dream-self had been). I dreamt whole texts that will become children’s books and I’ve been dreaming the chapters of a novel of which I still don’t know the ending. I even met the Souls of my children before they were born, and my youngest daughter, she actually walked into my dream and told me we were going to adopt her. I have often met with the Souls of people I have loved and who have passed over, including my son whom we lost mid-pregnancy and in my dreamstate, I’ve watched him grow into a beautiful young man.

So, can you understand my panic? Was narcolepsy the reason that I could connect so strongly in my dreams? What if it wasn’t me but all because of a stupid chemical that I didn’t have in my brain?

I started medication because I had to. Now that I’d been diagnosed with a sleep disorder, I legally had to take the medication to be able to drive. Much to my relief, my dreams still happened and my daytime Spiritual connection was still there.

Demonic dreams

I still haven’t told anyone about this next thing – It was years before I even knew narcolepsy was a thing. I was in bed by myself. My husband in the lounge room next door (this was BC “Before Children”). Just as I was dropping off to sleep, I realised I couldn’t move my body at all. I became aware of a man in the room. He was a ghost and radiated a sense of hate and evil. He came around to my side of the bed, pinned me down and raped me. All this time I was alert but totally paralysed. I couldn’t even scream. When this ended, I was shaking and crying. It had felt so real. I called out to my husband to come to bed but couldn’t tell him what had just happened. I didn’t have the words or understanding to explain it.

It was only after googling EVERYTHING I could when my daughter was diagnosed, that the lightbulb went on. That had been sleep paralysis with a hypnagogic hallucination. This is where you cannot move when you’re either dropping off to sleep or waking up. It’s often accompanied by vivid and very real hallucinations. Fortunately, these extremely scary ones are rare for me. Mostly they are just everyday situations where I dream someone tells me something or there’s a cat sleeping on my bed, and I wake to find that I am alone. But while this has taken me several days to write, narcolepsy needs to prove that the scary ones still can occur. Last night, while I was paralysed and couldn’t even scream at him to stop, my husband picked up a HUGE wolf spider and was threatening to put it on my face. Anyone who knows anything about me at all, would know how terrified I was. The difference now is that I know that I have narcolepsy and can reason with myself in this state – reassuring myself that it’s just a dream, concentrating on breathing in and out, and slowly I will come out of it.

mind awake but body asleep

Over the next couple of years, I found I was having more diverse symptoms. This often occurs as more and more of the brain neurons get destroyed, lowering the orexin/hypocretin levels until there aren’t any left. I now began having episodes of cataplexy. This is where the body experiences a sudden loss of muscle function while fully conscious. Most people have paralysis while they are dreaming (in REM sleep) so that they don’t act out their dreams. Cataplexy is when the body decides to do this while you’re fully awake. It can be a total collapse or just weakness in the knees, hands or face muscles. It may last from a few seconds to a few minutes. Our friend has actually been in this state for nearly an hour, but she is a rare and “special” case! Cataplexy can be triggered by emotions such as laughter, anger or fear. It’s made worse when I’ve been burning the candle at both ends, or when I have alcohol. I’ve found that it’s usually followed by a sleep attack, where no matter how hard I try, I cannot stay awake.

For me, cataplexy happened when:
• I’m upset when my girls are arguing – the arguments get bigger as the grow up!
• I’m in a lot of pain (I’ve had major spinal surgery so put up with pain most of the time)
• I’ve had a couple of drinks with family and friends and we have a night of playing Cards Against Humanity. If you’ve never played this, it’s a VERY politically incorrect, rude and just plain wrong card game. Don’t get it if you’re easily offended but if you’re like me and grew up on dark humour, I totally recommend it! These nights, I usually get laughed at and told how drunk I am because my head slumps, my hand is unable to hold my cards or my glass and my words slur. I may only have had one drink, but cataplexy makes it look like I’m really really really drunk.
• I have really enjoyed a movie, music or theatre performance. It means I can’t stand up to give a standing ovation and often need a walking stick to be able to walk out of the theatre.
• I’m grieving – last time was when my beautiful 19 year old Patchy-cat died. I was on holidays with my husband in Vietnam. That night, while having dinner in a beautiful resort restaurant, I dropped my cutlery and couldn’t hold my head up. Luckily, he realised what was going on, and quietly helped me back to our room where I could sleep it off.

What Narcolepsy has taught me

I’ve learned that narcolepsy and cataplexy is just part of who I am. It reminds me that some days I need to honour my body and take a day off when I need to. I have shared this with a few of my clients and sewing families and have been overwhelmed by their responses. They have supported me in my decision to cancel a lesson or appointment and also been curious to find out more about a really rare disorder and my lived experience of it.

I know that sugar and alcohol make the symptoms break through the medication, so have decreased both and when I do indulge, I do so safely at home with people I trust.

I love spending time in nature. It grounds me and stills my mind. Watching the sunset over the sea, looking at the moon, watching the seasons change, seeing the little things, listening to birdsong or wandering through a forest; these are all medicine for my Soul.

I no longer feel guilty for scheduling in a day off during my week, a day where I allow myself to do whatever it is my body needs. Sitting in front of the fire, with a novel, a couple of cats and an endless cup of tea can make anything better. If that what my body desires, then that’s what I do! Housework, dishes, clients and emails will still be there tomorrow, and very occasionally the fairies (or maybe my family) come in to help out.

Since I was diagnosed with narcolepsy and cataplexy, 3 years ago, I’ve also not let it (or my spinal injury) define me or hold me back – I treasured being able to travel with my husband to Vietnam and Nepal and we’ve also had many road-trip family holidays too. I’ve also started a business doing work that I absolutely love.
Narcolepsy and cataplexy, as well as my spinal injury have been my teachers – a catalyst to grow into where my Soul was calling me.