As I begin to learn more and more about the finer details of narcolepsy, I’m coming to realise that there are more symptoms that I wasn’t aware of or thought I had. One of these symptoms is living in auto-pilot mode. I don’t know how long it’s been happening, I don’t know if it actually is happening, but it’s a possibility that my partner pointed out to me recently while I was at the GP.
I’d been feeling unwell – generally more tired than usual and had an ear ache. My GP asked if there’d been any other symptoms, I said “no”, but partner said “yes”. Apparently just days earlier I’d woken up and just as I was getting up declared that I had the sniffles and felt I was coming down with something. Honestly, I have no recollection of this. But given the fact my ear had been hurting and I’ve since felt sniffly…it’s highly likely that I had said that. This was when I first started to think that maybe I was losing parts of my life. Having recently read that people with narcolepsy can often find themselves experiencing “automatic” behaviour alongside the excessive daytime sleepiness (EDS), I began to give it a bit more thought.
My first major experience of this was when I was handed a fine for having not “touched on” my Myki card (Melbourne public transport ticket) – something I have done religiously every single day for 4 years. When I was pulled aside by the “Metro Police” I was adamant that I had touched on. Essentially it resulted in me leaving the train station in tears because for the first time in my life I had no idea what had happened.
There have since been days when I get to the end of the day and have no recollection of what I have done. I often have to read through e-mails and notes, and check the time stamp on documents to piece together my day.
Of all my symptoms, this is the one I fear the most. I can handle the fact that I’m tired and in pain – but when I start to lose pieces of my day and feel that I’m losing my mind…that is when I get scared. Being only 28 years old I obviously think that I’m far too young to be losing my memory.
Thankfully I’m off to see my sleep specialist tomorrow. I can only hope that this is something she can understand or help me with. Whilst I’m coping with it by writing notes throughout the day – conversations are less easy to monitor.
So this is not to say that you can now try and take advantage of my vulnerability – it’s more a plea to bare with me (and others with the illness) while we piece together our lives.