The relationship I have with sleep is complicated. Yes, I’m one of the many of us that are tired every day. I could do three rounds of Lidl with the bags I’m carrying under my eyes. But for me, this isn’t just your normal tired. This is Marks & Spencer level tired.
I have Narcolepsy. For those of you who don’t know what that is, a quick google will fill you in on the broad definitions. For those of you too lazy to google, I’ll break it down in simple terms. You know on the TV, where people laugh their heads off at the person who zonks out asleep mid-sentence, usually into a plate of food? Yeah, that’s narcolepsy. Or at least one component of it. Corden’s mam had it on Gavin and Stacey. Hilarious, but canny inaccurate.
Narcolepsy is a rare neurological condition that affects the brain’s ability to regulate the sleep-wake cycle. It’s most commonly understood as a sleep disorder. There are two typical forms. The first is narcolepsy with cataplexy, which is the involuntary loss of muscle control which leads to sudden bouts of sleep, wherever you might be. The second is narcolepsy without cataplexy. The sypmtoms and effects of narcolepsy include disturbed (very fucking disturbed in my case) night-time sleep, excessive daytime sleepiness (EDS) and other neurological issues that occur as a knock-on effect of the condition. Imagine having a sleep-deprivation hangover every day and you’re halfway there.
In a nutshell, it sucks.
I feel fortunate that my form of narcolepsy is the latter, the one without cataplexy. That’s not to say that because I don’t conk out involuntarily, that I’ve got away lightly. Far from it.
Some context. I wasn’t diagnosed with narcolepsy until the age of 27. The previous 20 odd years had been spent in a recurring cycle of hallucinatory nightmares, inability to stay awake in lessons at school, college and university (my year 11 French teacher was so convinced I was on drugs that she would send me out of the class to walk around the block to wake up), and a general feeling of exhaustion. This peaked about two years into my first job, when I suddenly just hit the wall mentally and physically. I couldn’t get up. I could barely string a coherent sentence together without bursting into tears.
I started seeing things. Not just anything either. Horrific, nightmarish visions of the girl from The Exorcist wrapping her deformed hand around my doorway when I approached it. Sometimes, she would stand behind me in the shower. Then came the masked man standing in my yard, staring through the kitchen window. Of course, there was nothing there. I began to think I was losing my mind, whilst trying to hold it together in my daily job, being responsible for classes of children.
I began to lose myself. At one point, I felt so detached and numb from the world that I tried to burn myself with hot metal spoons to see if I was truly awake. That was the worst that it got for me, and that’s when I realised I needed to talk to someone. Opening that door up took me down a much more frightening path though, and although I know now what was happening, it forever tainted my view of the medical profession.
I’ve only ever told this story to a few people. How wise it is to share it here, I don’t know. There’s a strong possibility I will delete this a couple of hours after I write it, but for now, I feel like it needs to come out.
The doctors I spoke to inevitably thought I was having a mental breakdown. Hallucinations? Check. Mood on it’s arse? Check. Tiny bit of self-harm? Check. “Basically Ar, you’ve cracked. Let’s get you on some drugs purely based off this little questionnaire we’ve just done with you, and then off you fuck, ok hun?”
They didn’t use those exact words, but that’s what happened. Off the back of one conversation, I was given a diagnosis of bipolar disorder and started on some pretty fucking heavy duty medication. My life went west. I went on the sick for about a year. I didn’t know what I was doing. I had a nurse ‘assigned’ to me – although all we basically did was go for brews in a cafe and talk about the square root of fuck all. She was nice. And fortunately for me, she listened. She listened to me when I told her, quite categorically, that I did not have bipolar disorder. She also listened when I told her that I knew someone with bipolar disorder would probably say that they didn’t have bipolar disorder, but I knew it in my gut that that wasn’t what was going on with me. She understood me when I told her I didn’t want to take the medication that’d make my hair fall out and make my skin itch. I am grateful for her, because she believed in me enough to take me back with her to those doctors and demand, with me, that they send me for a brain scan.
“I want to know, for certain, that this isn’t a kind of epilepsy or something, or a brain condition – that there’s nothing physically up there that’s making me feel like this. I need to rule it out. Then I will accept this fully. Only then.”
The doctors agreed, and arranged for me to go and have an EEG scan at a nearby hospital. It was then that I met the man who changed my life. A neurologist who looked at the scan, sat me down and said the words that I knew were true:
“We need to get you discharged from the psychiatrists, ASAP. There is nothing psychologically wrong with you at all. We found some abnormalities in your brain, and I know exactly what the problem is. You have a sleep disorder, not a psychiatric one, and I know how we can help sort it out.”
I knew it. I fucking knew it. Six months of my life I’d been walking around thinking I had bipolar, when I didn’t. Six months that included a fuckton of medications that I didn’t need to take. Six months in which I’d had to tell my boss that I had bipolar disorder, when I actually didn’t have it at all. I will never forget the look on the psychiatrist’s face when I told him quite squarely that perhaps ruling out neurological issues should be the first port of call before diagnosing someone with a mental health condition off the back of a questionnaire.
Not long after that, I returned to the hospital neurologist and he talked to me about narcolepsy. Finally, it all started to make sense. He arranged for me to have further tests, which I’ll probably talk about in another post (because this one’s gone on a bit), and made sure that I was discharged fully and completely from the mental health teams. I still dread to think where I’d be now if I hadn’t pushed for that scan.
Narcolepsy is something I’ve had since I was a child – I know that now. It’s something that’s estimated to affect about 1 person in 2,500. That means that in the UK there are approximately 30,000 people who have narcolepsy, though it is believed that the majority have not been diagnosed. All those people, probably a lot of them just like me – who maybe haven’t the correct level of investigation into their conditions.
I’m going to save what happened next for another post, but if you’ve found what happened to me interesting or surprising, please let me know in the comments or over on Twitter, because I bet there are lots of people who are completely in the dark about this condition, and may be unkowingly suffering with too. just it like I did.