"Why aren’t you getting up, Mummy?"
It’s an unfortunately common refrain in my house.
Since 2016, I’ve been beset by an illness that makes it hard for me to stay awake, hard for me to engage in physical activity, and hard for me to look after my daughter. Even though she is now eight, she finds it difficult to understand.
"You’re not going for a nap again are you?"
This is the question asked every time I go to walk upstairs. The answer is usually yes. It’s a hard thing for her to cope with: a mother that is only partly present, only sometimes there.
In December 2016, Christmas Day in fact, I lay down and could not get up again. I was exhausted, more than I have ever been in my life.
It came out of nowhere. It lasted across the holiday celebrations, through January and beyond. In February, I had to sit down part-way on walks to kinder with my daughter.
"Come on, Mummy!"
I was familiar with sleep. While coping with post-natal depression, sleeping with my baby was a way to bond – and escape my feelings. During ongoing depression, sleep remained an easy way to escape.
This was different. I wasn’t making a choice to sleep – I had to sleep: if I didn’t, my motor control went out the window, my brain fogged, I had trouble putting sentences together. It was like being drunk.
Treatment was impossible with no clear diagnosis.
My first doctor suggested it was all in my mind. My second sent me for a brain scan. Finally, a sleep doctor suggested something that was difficult to diagnose but fit my symptoms – narcolepsy.
My symptoms suggested I had type II, where irresistible compulsion to sleep during the daytime heavily impacts one’s life.
By this time it was 2018, I had lost two years to sleepiness, lost actual time because of sleeping 18 hours a day.
I had gone from being a mum who hosted crafting parties for her toddler to one who could barely hold her hand on the first day of school.
The guilt gnawed at me – as it still gnaws at me – that I could not participate in my daughter’s life the way other parents do.
During her kinder years, I had regularly turned up for story sessions, leading the kids in singing and dancing. I put my hand up to volunteer every chance I could.