The Sleepy Soldier

Finding an informed and supportive specialist for Narcolepsy has been a long (and expensive) journey.

Having recently had my meds changed from modafinil to dextroamphetamine has been an experience. I cannot wait until Sodium oxybate is available on the PBS in Australia. When are they going to realise the impact it could make on our lives. 🥺

Just because I sleep more, doesn’t mean I love or hurt any less.

I can’t wait until the medical community in Australia takes Narcolepsy seriously. #weneedhelpnow

It goes unnoticed at first. You want more alone time than normal. Your favourite foods are left wanting the flavour you've always craved. The sun isn't as warm on your face as it was last week or even just yesterday. You can't wait to get home every time you step off the Welcome mat. You sleep more. You stop replying to texts and you turn your phone on silent and while you may attend work, your emotions take on the flatline of a life that has passed. You realise you're barren of the goals, desires and connections you once had and you're left scared. Having suffered from depression myself, I know how debilitating it can be. Asking for help is so very important. I just wanted to remind you.. I am right here.

Last night I drove in a Formula 1 race, the night before I lived among the trees. All these experiences are like memories to me.

I passionately love to sleep and I passionately hate to sleep. When it lives as a continuous need, it is hard to differentiate my feelings for it.

I ran out of meds and I forgot how much my life feels like a sequence of dreams bordered by napping.. I’m either waking from rest or waiting to rest.. it can be quite a tiring existence.

When I'm falling asleep and it's an embarrassing situation, I pinch myself. I pinch as hard as I physically can on the inside of my arms. It doesn't keep my eyes from rolling, my ears from filling up with dreams or the severe need to shutdown overriding my systems but it does, keep me. It's a hard knock life.

I don't mean to offend people when I don't remember what they told me. It's not because I don't care about them or what they are saying... The truth is, I cannot even remember the lyrics to my favourite songs.

My racing heart. I feel it vibrate through my deep chest and into my throat. Not at all times but in many. When I am still, it pounds through me. Yes, it has some form of repetition but it's not joyful beating. It seems these days the tune is necessity and you my dear, were the curator of the dull drone. Before, even though the beating was immense, it beat for you. It danced for you. I felt it so many times in its jovial play for your smile or touch... the sweet elation of the heart that beats like new. Like it's never been hurt or tuned or lonely. You conducted my orchestra of vessels and veins to high octaves and now you leave me with low baritones. You leave me with low baritones of hopeless necessity. You piece of shit. You sweet man that made my heart dance and than left.

I've just started dating a new guy and on the first date I was explaining Cataplexy. He had listened attentively and not made any jokes as he asked what he should do if I have a Cataplectic attack. "Shouldn't I put you in the recovery position?" He asked. That's the moment I knew he was a keeper.

I talk about my conditional regularly with anyone that will listen. I’ve never filtered the symptoms. Everyone needs to be educated by those that have the “hands on” experience. If we keep it to ourselves than how will we become more accepting of our invisible diseases? How will they learn?

With my body tired and craving sugar for energy, giving into those urges is my favourite thing. My most unfavourite thing?? The consequences.