Christine Miserandino’s Spoon Theory is the best explanation of living with chronic illness that I’ve seen, and I implement it often when trying to explain what it’s like for me to live with Narcolepsy. To somewhat personalise the theory and in the constantly connected, fast paced, interactive, beep beep, ring ring world I inhabit, here’s a few examples of my own activities that result in “lost spoons”:
•Opening Facebook and scrolling my news feed – 1 spoon.
•Replying to a comment or message – 1 spoon.
•On a bad day answering my phone can cost 1 spoon.
I’ve had to start learning how to say things like “Hey (friend), I apologise but currently I am unable to handle myself right now, can I get back to you tomorrow/at a later date?”. Maybe one day I’ll even learn how to do that without feeling a nauseating knot of guilt in my stomach.
Sometimes I’ve lost many spoons before I even get to work because on top of my “leaving the house” spoons and “catching public transport” spoons I’ve also had spoons stolen by Chuggers who don’t know how to take a polite “no thank you” or “sorry, I’m in a hurry” as a sign to let me be. One guy pursued me so relentlessly at a set of traffic lights that I became a stuttering mess, my head began to spin, and I felt so trapped and wild-eyed that I ended up begging him to “Please, stop, please please stop” which was mortifying for both of us as I walked away in tears. Two spoons for you, Chugger dude.
I guess what I’m trying to say is that, at twenty-six, there is much careful planning that goes into getting me through the four days of work I’m currently capable of. If I have an event after work I have to carefully time medication, think very carefully about what I eat (no heavy carbs for me), and work out how much caffeine I’ll need to get me through (I am naughty).
Surprises are unwelcome.
I’m still getting a feel of what I’m capable of, it changes from day to day and I have a history of being overly ambitious. I’m also naturally an unorganised disaster case, so this planning thing is actually really hard. “Use your phone calendar” people say. This would be totally sound advice if I didn’t have all the short-term memory problems that come with being horribly sleep deprived. I can look at something in my calendar, and the moment I navigate elsewhere on my screen, what I’ve just read has disappeared into fat air.
“Sleep deprived?” You ask, “But I thought Narcolepsy meant you were the sleepy nap Queen of being asleep?” 10 points to Gryffindor! But also people with Narcolepsy (PWN) experience different sleep cycles to People Without Narcolepsy, the team at Falling Asleep have made these handy dandy graphs.
Here’s a PWN’s sleep cycle:
And here’s a normal person’s sleep cycle:
PWN often enter REM immediately upon falling asleep and don’t do a whole lot of non-REM sleeping. Upon checking out the results of my Multiple Sleep Latency Test my doctor swore out loud, as apparently I could compete in the Narcolepsy Olympics (I like to think they’d be called the Narcolympics) with my times for a) falling asleep and b) entering REM.
I fall asleep and enter REM faster than Usain Bolt can run 100 metres.
The pros of having so much REM Sleep are that I have crazy vivid dreams. If you saw Unfolding Wonder at Sydney Fringe in 2013 you would have seen a bit of one of them in the imaginary Lola (played by yours truly) appearing inside the wall to help the character of Evelyn (played by the talented and charming Elizabeth Nicholls) get out of bed and face life by throwing her a rope and pulling her through the wall into an imaginary world. Another pro is that you can have entirely weird conversation with me while I’m asleep and dreaming. My darling Boyfriend records these and we laugh at them later, and he tried not to feel bad for apparently ruining my dreams of being an Olympic trampolinist?
The cons include sleeping for 12 hours and not feeling at all rested, rushes of crazy adrenaline upon being woken that result in angry abuse hurling that I cannot remember, missing my stop on trains and busses, the general over emotional out pouring that comes with being “sleep deprived”, anxiety, weight gain, short term memory problems, concentration and focus issues, crazy vivid nightmares, daytime hallucinations (when I start dreaming while very much awake, these can be both visual or audio), and so on and so forth.
When I was around 16/17 the nightmares were so bad I was afraid to sleep when it was dark, and instead stayed awake all night chain smoking and drinking coffee until the sun came up and I felt safe enough to sleep. The plus side of that was the birth of my obsession with horror films, which I poured over relentlessly in order to better deconstruct my nightmares into SFX makeup and CGI effects. I’m no longer nocturnal and I can sleep with the light off, gold star for me. For the most part I try to focus on the pros.
We estimate, based on a presentation of what we now know were Narcolepsy symptoms, that I have suffered from the condition since I was thirteen. In that time it’s gotten better and worse periodically. Upon being diagnosed early this year my Mum mentioned feeling terrible because she felt that getting me diagnosed even ten years ago would have meant my life would have been very different. I gently assured her that research is progressing in leaps and bounds, and ten years ago a lot less people knew about Narcolepsy as a whole, and it wasn’t diagnosed a whole heap.
But my mind had wandered into the realm of “what if” also, and it was a pretty surreal place. I’m not going to bore you with the sad stories of the things I have lost due to living with an undiagnosed chronic illness as I’m not really keen on sitting pretty in the BooHoo Poor Me Kiddy Pool of Sadness. But I will tell you that despite it I’ve done a lot of stuff!
Here’s the part where I toot my own horn:
I completed my hairdressing apprenticeship, crazy coloured Sydney’s most vibrant weirdos at Furr, managed a salon smack-bang in the middle of The Cross on Darlinghurst Road, completed three years of full time Acting training at Sydney Theatre School, performed in three Fringe Festivals (Sydney, Adelaide, and Edinburgh, yup, Edinburgh Scotland, and I played a Duchess BOOM), shot/choreographed/lit/edited/directed a movement video with the wonderful Kristen Irwin, and played two of my favourite fictional characters Alan in Equus and George in Who’s Afraid of Virginia Woolf (alongside Jenae O’Connor, who’s Martha is something everyone everywhere should see as a treat for being good) as part of my first year showcase at STS.
“But how can one go through literally half their life suffering a chronic illness and not know?” You ask. I knew something was wrong every now and then, but a combination of not wanting to cause a fuss, assuming everyone else felt as cruddy as I did, and finding excuses for my symptoms meant I didn’t really know what to do. I was also misdiagnosed a lot. Glandular fever (despite no presence of it on a blood test), depression, laziness, low iron (once again disproven by bloods), and I’ve lost count of how many times I’ve been told I’ve probably “just got a virus coming on”. After being sent for a second sleep apnea test (lul wat?) I just happened to break down crying in the right waiting room in front of the right doctor, who was kind enough to refer me to a sleep specialist.
So that’s how I found out I have Narcolepsy with Cataplexy.
“Wait,” you say “What is Cataplexy?”. You can read more about Cataplexy over here. Although I’ve only lost complete muscle function once (in the shower, buu-urns) I’ve had some minor attacks. Slurred speech is something I experience a ridiculous amount when I’m pushing myself beyond my capabilities. More recently I’ve had episodes in which I haven’t been able to move my arms because Nine Inch Nails and David Bowie singing Hurt together moved me to tears, or my knees have gotten very weak and jelly-like on a crowded train station.
On bad days I’m what we call “noodle bodied” and, after sleeping on and off well into the day, my boyfriend lifts me out of bed, helps me get dressed, and we have a super chill day and I craft things so I don’t feel completely useless. These days upset me, I’ve always been an extremely independent person (at four years old I told my mother it was okay for her to leave once I was in the gate on my first day of school), so needing him like that feels a bit crap. I’m lucky, because he loves me in a way I’ve never been loved before, but it’s hard to accept that kind of love sometimes. He tells me I’m silly when I tell him I feel guilty. He kisses my forehead. We work around my bad days. He’s a bit wonderful (and a total babe).
Medication is a bit of trial and error. I’ve taken Modafinil and more recently Nuvigil, Modafinil seems to work a little better for me in conjunction with lifestyle changes. Unfortunately medication only masks the symptoms, and the only treatment is sleep. I am still coming to terms with that, in that I never feel like there’s enough hours in the day to do all the things I want to do. I’m learning slowly how to stop over committing myself and stop beating myself up when I’m only capable of achieving one task on a long list tasks I’ve written for the day.
And now I’ve created myself a little nook on the interwebs to talk about this stuff in an honest and open way, because sometimes I’m not so great at articulating without getting overwhelmingly emotional.
How am I today? I’m exhausted. I got my nails did, picked up some groceries, did some washing, vacuumed the dining room, and my Uber driver tried to involve me in some sort of pyramid scheme. I’ve had a bigger day than normal and at 6pm I’m ready for a good long nap! Luckily Boyfriend is at band practice and left me pizza in the fridge, so I can nibble leftovers and cat-nap for a good bit.
I guess I’ll write something cool and maybe useful next time?
Til next time then…
This feature image for this post is of Setsu-Chan, who is my spirit animal.