Over the last year, our Writeability Goes Regional project has included a remit to uncover and showcase the work of some of Victoria’s regional writers with disability.
Here Susan Mackenzie challenges the perception that ‘Young People Don’t Get Sick’.
Right? They’re young and invincible and the world is their crustaceous slimy pearl-home. Wrong. Turns out we do get sick. Turns out your perfectly planned out world can be picked up and shaken like a snow globe.
I am one of those young people; I became sick with chronic fatigue syndrome in 2013 at age 26 and for once in my life could no longer push through and just get on with things. Chronic fatigue syndrome (also known as ME/CFS) smacked me in the face and I went from being a healthy, fit and active person to someone who could barely get out of bed. And wow was it scary. I had to move home to my parents’ farm to be looked after (thank you Mum and Dad!) and live away from my friends and the life that I’d built in Melbourne. What made this even harder was the scepticism surrounding this illness, from doctors and from friends who thought I was “just tired” or “needed to push through”, from the people who said “they got tired too” and the people who thought I wanted an excuse to be in bed all day; that, young person or not, I actually wanted to be sick.
Up until I got ME/CFS I took my health for granted and admittedly treated my body like crap; I drank too much, ate badly, subsisted on coffee and exercised not for the health benefits but to combat stress or last night’s greasy snack on the way home from the pub. I over-exercised in fact, because exercise is always good for you, right? Wrong, not when you never sleep properly due to anxiety. It’s not that I blame myself for getting sick – so little is known about ME/CFS, let alone why it affects some people and not others that no one can say why they became ill – but I’m sure being stressed and run down wasn’t good for me, and the contrast with how I treat my body now as compared to the haphazard approach I had then is quite telling. I now fight each day to not go above my body’s energy baseline, eschew caffeine and need at least two naps daily. I also make a conscious effort to eat well and actually address my anxiety – rather than lacing up my runners to chase it around the park.
I first knew something was wrong with my body when I fell up the steps of the number 57 tram, heading to what turned out to be my last morning at work. When I didn’t recover over the next three months, and in fact deteriorated to the point I could barely take a shower, I knew I was sick, really sick. At month three my financial planner father asked me if I’d filled in those income protection forms he’d arranged for me through my superannuation. I had not. I remember him reminding me the month before I got sick when I was packing for an overseas trip, yeah, yeah Dad, I’ll do it, but I’m busy planning what to pack, I don’t have time to fill out all these forms. Wow do I regret that now! When Dad asked me about this later I was embarrassed and lambasted my past self for being so cavalier. Instead of receiving 80% of my salary I was living off Centrelink’s meagre support. Why had I been so stupid? Why hadn’t I filled out those forms? Then I asked my friends if any of them had income protection insurance. Not one friend my age had it either! We were all existing in a world where young people didn’t get sick, so why would we need something so mundane and serious like income protection insurance?
Before I got sick I absolutely took for granted my quick brain and agile body. Only once I was sick and dealing with terrifying brain fog that had me forgetting how to spell my own surname did I see what I had lost. When I, the grade three times tables champion of Ceres Primary School, tried to split a bill for $24 between two people and had no idea what the answer was I wondered what on earth was happening to me. I once forgot the word “furniture” trying to describe a collection of chairs and tables. Me, the wordplay and scrabble lover, couldn’t think of such a simple word. I worried something was inside my head eating its way out. While my brain seemed to atrophy my body no longer worked the way it had either. I went from being a runner and lacrosse player and yoga lover to some weak and uncoordinated person who burnt herself trying to pour a cup of tea, a person who wasn’t strong enough to carry a backpack anymore and who swayed towards the wall when they had to stand for too long. Where had that athlete gone? Where had my mind gone? I felt like I’d aged about 60 years.
In amongst the mental and physical deterioration I was also losing my sense of self. I’d always been a contradiction, a sporty chatty bookworm, but once ME/CFS took control of my body I was none of these; I could no longer read books due to headaches and nausea and I was so horribly fatigued that I practically stopped talking, speaking only when necessary, gone was the ebullient girl whose brothers used to beg her to be quiet. And as for sport? Hah, moving from my bedroom to the living room felt like a record-breaking feat each day that I managed it. For those first 12 months three quintessential parts of my personality were gone and I couldn’t even write about how awful it was; for the first time in probably 15 years I didn’t fill a journal with my thoughts – thinking and writing were too taxing for me.
Attending social functions was also an ordeal for me in the early stages of my illness: my noise sensitivity meant a crowded room would end in a hideous headache, if the event involved standing up my muscles would quickly fatigue and trying to interact with so many people at once drained my brain. I remember stubbornly attending a friend’s wedding about six months after I first got sick, adamant that I would be ok, that ME/CFS wouldn’t beat me. If you’d gone looking for me at 9pm that night you’d have found me not on the dance floor like everyone else but in the bathroom curled up in pain in my floor-length dress, desperate to lie down, a toilet paper roll working as a pillow for my head – not the image I had in mind for a black tie wedding. I somehow survived that night, running on adrenaline and red bull, but the awful crash on the other side meant that I said no to most social functions after that. So of course people stopped asking me as it was assumed I wouldn’t come. I felt more and more isolated as everyone got on with their own lives while I was stranded on the couch with chronic fatigue. I am so thankful for the few friends who came over and sat on that couch with me and watched TV, or sipped a cup of tea with me for ten minutes before I had to go back to bed, or took me out of the house for a drive or simply sent funny memes to my phone; knowing they were still there meant so much to me – I was still worth being friends with in spite of my illness.
When I improved enough to begin to write again and blog about this illness it wasn’t in that type-until-you-collapse style of getting all the words out or you’ll burst, it was in measured 10 minute intervals, my alarm going off on my phone to make sure I rested. I’ve written the first draft of this in one big go. In 45 minutes I’ve scattered thoughts onto the screen and my cup of peppermint tea has gone cold as I sit too engrossed in what I am writing to drink it. I can’t tell you how good it feels to write like this again!
When you have such limited energy reserves you learn to spend your time wisely and it struck me that if I still wanted to write and interact with other writers then writing must be pretty important to me, not just something I’d always done, but a passion. I started my blog, A Snoozie Life, as a way to explain to my friends and family what was going on inside my body, because on the outside I looked fine. It helped more than I could have imagined. It gave me a sense of purpose too, and showed me how much I value creativity. I just wanted to write, and create and think and feel alive again. I would set the timer on my phone and tap out my tale, thrilled to feel my brain working again, if only for a short interval.
So, it turns out that young people actually do get sick, and while I am improving and hope to fully recover from this illness in time I will never take my health for granted again, and I’ll forever value the friends and family who have stuck with me. And to my fellow ME/CFS warriors, I salute you, this illness is a wily beast with which to battle.
About Susan MacKenzie
Susan Mackenzie is a 29-year-old writer, reader and perfectionist baker from rural Victoria. She is also a besotted aunt and a big fan of curly coated retrievers. She blogs about her experience with CFS at www.asnoozielife.com and is determined to fully recover and reclaim her life.
Writers Victoria acknowledges the generous support of Perpetual Trustees for the Writeability Goes Regional program and these commissions.
© Susan MacKenzie 2016