What’s Up With Clare?
Dear Clare, what the fuck is going on with you?
WARNING: Long post is long. Sorry, explaining complicated things took many words. Here’s a picture of two action figures hugging a dog to make up for it. Skip to the end for the summary if you need to.
At the end of 2016, I developed a Mystery Illness.
It is absurd, and it is debilitating.
It’s sleep.
Yep. Just let it all out. This thing is one of the most absurd illnesses in existence.
Everyone has that one friend who complains about Never Being Able to Keep Weight On. You know you have to be supportive to this friend, because they have genuine shit to deal with. But internally you’re like, ‘You. Thin. Motherfucker.’
So, sleep?
I understand; nay, empathise. I love sleep like it’s an adorable, fluffy kitten that also knows how to make and serve a martini. I love it like it discovered how to resolve the climate crisis and also made everyone their own personal unicorn. I love it like the cheese powder on Doritos when it crusts up on your fingers in delicious, salty islands of excess — nay, more. Too much sleep? C’est impossible.
Long sleep = good
…Is what I thought until Christmas Day, 2016 when I lay down and slept. It was an eight-ish hour nap before I got up and went to bed for 12 hours.
The next day I changed things up by travelling to my sister’s and sleeping another eight hours through the family celebrations (note: a great idea and I highly recommend it as a Christmas plan). I slept the two hours home, then crawled into bed and commenced sleeping.
It continued much in this fashion, with a side of exhaustion. In late January 2017, when I couldn’t walk my kid the ten minutes to kindergarten without having to take a couple of rests, I consulted a doctor (see ‘A side note on doctors’, below).
After consulting a range of doctors who were equally baffled and/or unhelpful (thank you, baffled ones who were at least nice enough to say so). I finally landed in the sleep studies department at the Royal Melbourne Hospital.
Sleep study reveals lack of sleep
Guess what? Despite 100% of the evidence, I wasn’t sleeping.
I took a sleep study. I’ll tell you about it sometime.
I woke up feeling fairly refreshed, like I’d had a good night’s sleep. The results showed something different: of the eight hours I thought I’d slept, I’d been wide-eye awake for three. During the other bits, I obtained stage 1 and 2 sleep. Not much stage 3, virtually no stage 4 and zero REM. My doctor said I basically meditated the night through.
My sleep doctor tentatively diagnosed narcolepsy type II, but still isn’t sure and there’s no real treatment.
What the information from the sleep department did tell me is that I can experience what I think is an entire night of sleep and my brain gets none at all.
What does that mean?
Having that sleep study has helped a huge amount. Whereas before I’d stumble around having no idea why my brain wasn’t working or whatever was happening, now I stumble around knowing it’s extreme sleep deprivation. And that is very cool.
Seriously.
Here’s sleep deprivation, as described by an ex-Marine, who took note of how he felt during the many times he had to go without sleep for up to 72 hours:
- 17 hours — most people function like they’ve had two glasses of wine.
- 24 hours — the equivalent of 0.10% blood alcohol. Lack of motor control, impaired memory and an inability to make good judgement calls. Anecdotal evidence from Army vets shows that at this stage you’re already in danger of causing fatal accidents.
- 36 hours — all of the above, plus you begin to lose chunks of time. Also, your body begins to be incapable of processing things properly, leading to hormone fluctuations and things that increase chances of cardiovascular disease.
- 42 hours — add undetectable microsleeps to the above.
- 72 hours — major cognitive impairment and hallucinations. There’s also a distinct chance of a psychotic episode.
TL;DR: watch the infamous hotel room scene in Apocalypse Now (for which Michael Sheen kept himself awake for 48 hours and ended up having a heart attack).
I experienced all of these stages and symptoms apart from the hallucinations and psychosis (or, if you watched the video, the underwear and nakedness) in a series of failed sleeps over four days recently. It coincided with the days I had to tell my lecturers for my Master’s degree about my condition. It was fun.
Why, in the names of all the gods, would you tell people about this?
In short, I am even weirder than most people interpret me to be, and to give my friends a little help I thought I’d answer some questions.
- You know jetlag? That’s me, most days.
- Is there anything entertaining about this at all? Absolutely. Skip the following (boring) section and move to the end.
- What are some of the other ‘fun’ side effects?
*People with chronic sleep deprivation are prone to obesity, so if you see me and think I’ve put on weight, you’re bang on the money. Plus beer.
*I have hyperreal dreams — dreams that are indistinguishable from reality.
*I experience sleep paralysis.
*My brain doesn’t work as well as it used to, even on good days.
*I do not know whether I am about to have a good day or a bad day (see ‘I can’t recognise whether I’ve slept or not’).
- Have you tried…? Yes. Unless what you suggest comes from arcane knowledge recently recovered from an ancient text hidden in a tomb in the Himalayas, I have tried it, been tested for it, or investigated it — but thank you for wanting to help. I do appreciate it and I’m sorry for being rude.
- Seriously, you’re complaining this much about sleep? Yep. I have to be careful crossing the road and walking down stairs because I might hurt myself. The last time I had to do that was around age two. Or drunk.
I am not allowed to drive (I don’t have a license, but it still counts). This condition has seriously impacted my ability to study, has made me completely fail people in things I’ve promised, has all-but destroyed my freelance writing business, lost me all regular income and — worst of all — has made it difficult to learn lines for the first time ever. It’s not leprosy, but it’s a thing.
- Wait — haven’t you told me before you suffer from depression? Yep. In the past I’ve been scared to disclose my mental illness. In recent years I have realised that hiding it facilitates the stigma, so I’m pretty open about it now: I am 14 years into major depression and living with it is about as mundane for me as someone living with diabetes. However, sleep deprivation makes it 1000% worse. It also impacts my ability to metabolise my medication, so I often get withdrawal side-effects even though I take my meds at the same time every day. If you’ve ever been on antidepressants you’ll know how much fun that is.
- But I thought you were tired because [thing I’ve whinged to you about for much too long, with much too much red wine, recently]? Also yep. Shit happens in everyone’s lives, and Shit, in my case, has continued to Happen, sometimes at near-Chekhovian levels. Ageing parents, friends going through awful stuff, revisiting childhood traumas — it happens to all of us. Each time it happens to me at the moment I am not as resilient as I used to be, nor as stoic, so I’ve probably whinged about it to you, and I’m sorry. Thanks for being there for my ranting.
- Surely you need to stay at home and recover? If you have asked this question, please move on to the ‘staying safe’ section.
Staying safe
Here’s what I have to say about staying safe:
I spent 2017 in bed.
I’m really not exaggerating much in that statement. I slept between 16 and 18 hours a day, every day.
Before reading anything else, I encourage you to sit a minute and think about what your life would be like if you had only 6–8 interrupted hours a day. How much would you get done? How many friends would you see? What would your work be like?
In 2018, I came to this conclusion: fuck that. Really. Fuck it in the ear with a massive dog dick. I am 39 years old. I grew up eating off aluminium pots which have now been linked to Alzheimer’s, breathing in passive smoke, with cancer and heart disease genes on both sides, living in the cancer capital of the Southern Hemisphere. Dudes, I am not going to die of old age.
So, when someone recently suggested that it would be safest to stay at home and wait this all out, my response was very nearly violent. You wait it out, motherfucker. [Insert ‘Your mum’ joke here.]
WTF? You want an award or something?
What I have is not a worst-case-scenario by any means. I’m amazed at people I know who are going through much worse things and are able to accomplish so much more than me. It makes me feel like a whinger, and I am very humbled by their strength and courage.
But I did want to let you know what’s going on. This thing is invisible, and most people who know me only know I’ve suddenly slacked off in seeing them. I have, but for Reasons.
And finally… how it’s all terribly amusing
Don’t get me wrong, despite all the whining, this thing has delivered some top-rate Monty Python-esque shit into my life, and I relish them.
- Time travel
Everyone experiences time travel, technically. However, while most people travel forward in time at the rate of one second every second, I have had the rare experience of travelling forward one second for every three. In 2017, spending 2/3 of the year asleep, I experienced time at about 1/3. I told my mum I was calling her within two weeks when it was really six. I thought it was September in December. In essence, I spent the year in an intermittent coma. I think I have a grip on what using the TARDIS is like.
- Hallucinations
The weird sleep brings on sleep paralysis hallucinations. I’ve never experienced any hallucinations before, so I was pretty excited to get my first one.
My hallucination was a tea tray hovering in the middle of my lounge room.
Not a fantastical tea tray, oh no. Just an ordinary, tin tea tray. It hovered there for about ten minutes before disappearing.
It didn’t even have any tea on it.
I find it a little unfair after hearing stories of all my friends’ drug-fuelled adventures fighting goblins and so on that my hallucinations are so fucking mundane.
- Further hallucinations
I also frequently have entire conversations with people that I believe have come to talk to me as I lie in bed. Chances are I’ve had one with you. I now have to check with my partner and daughter that the conversations we’ve had have actually happened. It makes life interesting.
- The abovementioned hyperreal dreams
These come in strangely clear-cut categories: either supremely ordinary or nightmares.
The nightmares have been a genuinely interesting experience. I have felt real pain in the middle of them. I didn’t know that was possible before.
Another one that the nightmares have pulled on me is the Inception trick. My record for waking up in a dream within a dream within a dream is four. I was getting pretty pissed off by the end of that one. All that struggle to wake up shit is tiring.
On the whole I prefer the nightmares because they do not, for example, lead me to believe there is an Officeworks on Johnston Street and go there in real life, rendering me late for class and making me have to explain to the tutor that I had gone to an Officeworks that didn’t exist. Just off the top of my head.
A side note on doctors
I’ve learnt a lot in this experience, and feel good about that. Unfortunately the main thing I’ve learned about doctors is that some doctors nurture a dislike of appearing unknowledgable to the point of actual injury. I know this is not news to a lot of people. As the proud niece of an amazing, trail-blazing GP, I had my expectations a little higher.
There are amazing doctors out there. I’ve had specialists come out and say, ‘Wow, I don’t know what’s wrong. Let’s send you to someone else and see if they can find out.’ But others, the fuckers, seem congenitally incapable of admitting they don’t know something. This would be forgivable if their standard fallback position was not ‘It’s all in your head.’
Can I just say the response of ‘It’s all in your head’ is both a) a fucker of a thing to say and b) also so not a reason to dismiss symptoms, what with mental illness being a scientifically recognised cause of physical, and treatable, illness? As someone who is well-endowed with mental ill-health experiences, this came across as particularly offensive.
’Tis a good thing my brand of crazy doesn’t prevent me from getting a second opinion.
Summary
I got tired.
Don’t know why.
Have tried to find out.
Not all hallucinations are interesting.
Still tired.
