My doctors advised me to manage my chronic fatigue recovery by taking frequent rests throughout the day. This is fine if I’m home, where there’s no people buzzing around, where I can put on my eye mask and if necessary, noise-cancelling headphones. When I’m not home, it’s harder to actually rest. And sometimes it’s not possible to be home every three hours.
One thing I used to find wonderfully restful was getting a massage. Technically I can still get a massage, but it will leave me as exhausted as if I went for a run. (Obvious conclusion: having a massage is a form of exercise.)
So I’ve been looking for restful alternatives. Which is how I discovered the sleep pod.
I found this particular sleep pod at a Brisbane hotel. The hotel was so futuristic, my room didn’t have light switches (light switches are so 20th century). Instead it had a smartphone on which you could set ‘moods’ for your room. Except that when I arrived, the smartphone battery was dead, so the mood of my room was ‘put your makeup on in the dark’.
The sleep pod was in the business lounge. Sure, I could have rested in my actual hotel room, but the pod promised executive-quality power napping. This turns out to mean that you get in, the pod reclines and vibrates mildly, and some blue lights inside the pod bit imply that your nap is futuristic.
I give the sleep pod a D+.
Next I tried a float tank, also called a sensory deprivation tank. Float tanks are filled with salt water, so you can float like you’re at the Dead Sea, except without all the slick mud and tourists taking photos. So maybe it’s more like floating in space, but wet.
You spend an hour in the tank, floating total darkness and blissful quiet, trying not to get salt water in your eyes.
I give the float tank a B+.
Is it more relaxing than napping in a sunbeam on my own couch with an eye mask and noise-cancelling headphones? No. Sunbeam naps at home are a solid A+.
If I’ve become an expert in anything in the past few years, it’s napping, and this is my expert recommendation. Nap at home, in your pyjamas, with the whole world blocked out by eye masks and headphones and layers of blankets, even if it means you’ll spend far more time there than you ever expected or wanted to.
When I was seven, my school published a story I’d written in a collection called Young Saskatchewan Writers. (My family lived in Moose Jaw, so I was Saskatchewanian.) It was a one-paragraph story about a wizard who turned some school kids into frogs.
Seeing my name in that book made me think I actually was a writer, or at least would be some day. I started a novel when I was fourteen, and another when I was eighteen. The first was speculative fiction about killer bees from Mars; the second was apocalyptic magical realism. (All I can say is, thank goodness self-publishing was not so widely accessible back then.)
There were a few years in my twenties when I didn’t write anything but journals, mostly because I was living in Peru and Mexico, and spending my time learning Spanish.
I returned to writing seriously in 2010. I applied for an arts grant, and somehow got it. Around that time, I read a book in which the author mentioned that it took 10 years for her project to go from idea to publication. I found this ridiculous. There was no way my book would take that long.
Almost exactly ten years later, my first book came out. I was 35. Which is to say, this was a major life goal of mine that I worked very hard on for many years, and achieving it felt really good. And lots of great things have happened since my book came out.
Here I am at Sydney Writers’ Festival with essayists Fiona Wright and Luke Carman, whose new collections explore the impacts of chronic illness. It was a bit intimidating to get up on stage with such skilled, established authors. But it went well, I think. After the talk, all three of us went to the signing tables. I’d joked about how, because I was the panel moderator, no one would come to have my book signed – no one ever goes to see the moderator. And I was right! I sat there all alone while people lined up with Fiona and Luke’s books. It felt like a rite of passage.
Since my book has come out, I also had the pleasure of speaking to Claudine Tinellis, who hosts the podcast Talking Aussie Books about writing Revenge and tips for writers.
I made my first book club appearance, with this incredible group of Armenian women. This was delightful, not only because they had all read the book and we had a robust, three-hour discussion about Armenian identity, but also because it was like being with my aunts and cousins. And I was invited to appear at the NSW Dickens Society annual conference with the wonderful Walter Mason. This time, I signed some books!
And I have more events coming up, in Sydney, Brisbane and Melbourne.
Chronic fatigue has made all this challenging. My events have gone well, but I usually go straight to bed after, sometimes feeling like my head’s being crushed in a vice. But I’m still grateful I get to do it. I know people with chronic illnesses who aren’t well enough to even attend events, let alone speak at them. And I know lots of writers who have been working on their manuscripts for many years, hoping to see them published.
Since I started posting charts tracking my chronic fatigue recovery, I know you’ve been desperately waiting for the next update. Every post is like a cliffhanger season finale.
There’s been a lot happening lately. And I was doing well. Check out my step count, especially that excellent stretch from mid-January to mid-March. No crashes at all, fairly consistent daily step totals. Life was good.
Then a few weeks ago I had a very hard crash. At first I wrote it off as a random flare up. But not long after, I started coughing the wet, horsey cough that indicates either a chest cold or a lungful of rotten porridge. It felt like the latter, to be honest.
The chest cold combined with my ‘usual’ chronic fatigue meant that I’ve done nothing for days other than watch Youtube videos of dogs running agility courses. Which is fun for the first 15 hours, then gets a bit repetitive. Still great though.
This return to severe fatigue is terrifying for me. I made commitments based on my February level of wellness. My first ever book launch is on April 10. The following week, I’m giving a talk about the book.
And then, on Friday, May 3, I’m chairing a panel at Sydney Writers’ Festival. You know, the biggest Australian writing event of the year if you’re not paying attention to Melbourne.
The SWF panel was a surprise. I’m not there to talk about my book (although it will be in the festival bookshop, which is a huge win). I’m there to talk to two authors who both write about chronic illness.
I have a strong suspicion that I was asked to chair this panel because I also have a chronic illness. Maybe not, maybe it’s just a coincidence. But if that is the reason I was asked, it’s a weird silver lining to being ill.
If I’d known I could have gotten onto the SWF program by getting a chronic illness, I would have … actually I wouldn’t have done anything differently, it’s still not worth it. But at least it seems like one definitively excellent thing has come out of the experience. I hope everyone experiencing chronic illness can say at least that much.
Wish me luck surviving the next month! And if you’re going to SWF, make sure to grab a copy of My Name Is Revenge at the festival bookshop.
PS. If you’re keen on hearing about more upcoming events that might kill me, plus great reads and book giveaways, sign up for my monthlyish enews.
I don’t know about you, but my 2019 started pretty rough. I can show you exactly how rough, thanks to my daily step count (part of my chronic fatigue recovery process).
You can see that extreme crash on January 7, a day I could barely get upright. And then a few semi-functional days, followed by another extreme crash. If this was a mountain range, it would be impassable.
Now look at this!
It’s less a mountain range than a gentle stroll! Okay, okay, that’s not even a full month, I know. I shouldn’t be getting excited. And I’ll wait to share the thing I’ve been doing differently this year that may or may not be the reason for my stabilising energy levels. But contrasting those two images, it’s quantifiably clear how much better I’ve been feeling the past few weeks.
Put in the context of the past year, this is the best stretch of consistent energy I’ve had since early 2017.
My daily step max is still significantly lower than my previous daily average, so I’ve got a ways to go. (My husband and I refer to Healthy Ashley as if she is a separate person from me; we both like her better than Sick Ashley.) But this is the most optimistic I’ve been feeling in a while.
Which is good, because I’ve got big plans for 2019! I’m looking forward to reading more great books, getting more writing in, and attending more writing events. And I have some exciting news that I’ll be able to share with you soon!
Wishing you day after day of reliable energy.
I recently discovered Anna Altman, an American author with chronic migraines. Altman perfectly highlights truths like this: ‘Our culture encourages us to think that, if we push ourselves hard enough, we can overcome whatever ails us.’
As she discovered when her migraines became debilitating, it’s simply not true. But we deeply want it to be true, which is why it’s such a pervasive idea. In an essay about living with chronic illness, Altman describes what felt like her ‘failure to bear up under average hardship’ when she could no longer work full time. Yes, I thought. Exactly.
After trying all kinds of doctors and treatments for years with little success, Altman says, ‘I ended up finding that giving in to my limitations and trying to find a meaningful, happy life within them helped a lot.’ Her mother counselled that in spite of what she had to give up, she could make a new life for herself.
Giving In To Limitations And Forging A New Life was definitely the theme of my recent trip to New Zealand. When I say ‘recent’ I mean two months ago, because this is yet one more way I’ve given into limitations.
Steve and I booked the flights early last year. I suppose we thought I might be significantly better after all those months. We were very optimistic, it turned out.
In the past, planning a trip to New Zealand would have involved researching all the best hiking trails, kayaking spots, and sunrise yoga on the beach. By November though, it was clear I wouldn’t be doing anything physical. We still refer to the mildest incline as my nemesis.
If I couldn’t hike or kayak or swim, if I had to give into those limitations, what could I fill that gap with? What could this new life as a chronically ill person still desperate to travel look like?
Te Ika-a-Maui, New Zealand’s North Island, had a perfect answer: HOT SPRINGS.
This photo from The Lost Spring looks incredibly relaxing, but what isn’t pictured is the chainsaw and wood chipper blasting away on the other side of that wall. It was actually intolerable, since one of my least fun symptoms is noise sensitivity.
But that was okay, because New Zealand has dozens of hot springs, and I’d planned to visit as many of them as possible. Hot springs are definitely within my limitations, as you can see here at Hell’s Gate mud spa, which was blissfully chainsaw free.
New Zealand is full of options. When you’re done slathering yourself in mud at Hell’s Gate, you can soak in this even smellier sulphur pool. It was super weird and I loved it.
At the right time of day, you can visit Hot Water Beach in Hahei and get your able-bodied husband to dig a sand pit that will fill up with geothermically heated water. It seeps out of the ground at 65 degrees Celsius, so dig the pit carefully to make sure some cool ocean water seeps in also.
Or just visit a traditional New Zealand cat cafe, where you can spend an hour sitting quietly, drinking a cup of tea, and feeding kibble to 17 cats.
I was able to see and do a lot while mostly sitting down and relaxing, which meant I felt especially good in New Zealand. I was still disappointed to miss out on sights like Cathedral Cove in Hahei, which was only accessible via a rather vertical one-hour hike or an expensive boat journey that would have been exhausting for me. I stayed in the shade on the beach and Steve hiked up on his own.
All that resting meant I was able to see some of the flatter sights, however. This was especially exciting in Rotorua, one of the most fascinating places I’ve ever seen. It’s an active geothermal area, which means all sorts of weirdness goes on. This is a park in the city, where there is a variety of steaming lakes and bubbling mud pits. This steam blows right onto one of the major streets.
I wasn’t kidding about the mud pits.
To see these sights, I had to walk around. This meant planning carefully and rationing my energy. It worked out. The highlight was Wai-O-Tapu. The website describes this ‘Thermal Wonderland’ as ‘a spectacular showcase of New Zealand’s most colourful and unique geothermal elements sculpted by thousands of years of volcanic activity’ and it is not wrong.
This is Champagne Pool, named for its bubbly constitution.
And this is Devil’s Bath, which Atlas Obscura describes as a ‘neon green pool of stagnant stink water’ and compares to ‘a cartoonish radioactive dump site’.
Trust me, I loved every minute of this. Even the minutes where my symptoms flared in the heat and I struggled to breath after battling a mild incline.
I’m very lucky to have been able to travel to New Zealand at all. Many people with chronic fatigue syndrome and other chronic illnesses wouldn’t be able to. Still, part of me insists that if I push myself hard enough, I can overcome my illness. Every time I try, I make myself worse.
So, welcome to 2019: The Year Of Giving In To Limitations And Forging A New Life … Again.
PS. In New Zealand, shopping carts are called TRUNDLERS. Really. Made my day.
Those who have been closely following my journey through chronic fatigue will remember my tedious recovery routine, which I described back in March. The routine involves multiple daily rest periods in which I’m allowed to do very little except drink tea and look at trees.
I’m also allowed to pat a pet, but as I wrote at the time, ‘This sounds great, except I don’t have a pet (I am in the market to borrow your pets, if you don’t mind bringing them by five times a day, or just donating them for the duration of my illness).’ Someone suggested I get a cat, but I was pretty certain no cat would permit the strict patting routine my recovery program requires.
I was right.
Still, when I was offered the opportunity to look after two cats over the holidays, I wasn’t going to turn it down. Especially because the cats live in a gorgeous house in Singapore, a house belonging to a friend who is both a talented artist and art collector.
Cat One would occasionally allow me to pat her for part of a break. When she was happy, she’d headbutt me. She also had a tendency to drool huge puddles when I scratched her ears. She was a sleek goddess of a cat with pure silver fur, always slinking off.
Cat Two loved sleeping on keyboards. That was his thing. Here’s his little tail twitching in utter delight because of all those plastic keys under his fur.
They had fancy cat names, but I was too tired to remember them, and they didn’t answer to them anyways. They’re cats. We called them Cat One and Cat Two because that was the order we met them in (Cat Two managed to get himself locked in a bedroom before we arrived, and required first locating, then rescuing, hence his secondariness).
Cat Two almost never allowed me to pat him during my rest breaks, because my breaks didn’t involve a keyboard. But he loved it when I sat down to write, which I managed to do most days for an hour or two. As soon as I sat at the desk, he’d appear in the doorway, jump onto the desk, and flop onto my keyboard and papers. This earned him the nickname Flopsy Mopsy.
He’d lie on the keyboard, purring like a little engine, and stretch out his paws one a time, like he was doing cat yoga. He also liked to rub his jaw on the corner of my laptop screen. When I wasn’t looking, he’d try to drink from my water glass. He did this so often, I eventually I brought him his own water glass.
When he tired of me, he’d leave abruptly and head to the hottest room in the house to spend the day roasting. He’d lie in the sun, and when it had moved past the windows, he’d press himself against the wall to absorb as much heat as possible. I was surprised he didn’t shrivel up like a raisin, though perhaps this is because I followed him around with his own personal water glass.
Results of the study: my hypothesis was correct, cats are not ideally suited to chronic fatigue recovery routines. However, I felt better in Singapore than I have for the past few months. So perhaps patting a pet at any point during the day can have positive health impacts. If anyone has several alpacas or a domesticated fox they would like to lend me, I’d be happy to continue the study.
At the start of 2018, I often struggled to leave my apartment due to the severity of my chronic fatigue. So for the first time in my adult life, I set no resolutions or goals for the year.
It was weird.
Because not only do I normally set resolutions and goals, I am also one of those over-ambitious weirdos who tracks them through the year, periodically reflecting on my progress.
I’m starting off 2019 still sick. I need to be realistic about what I can achieve.
Or do I? If I’m not going to achieve my resolutions anyway, this is a chance to set some truly grandiose resolutions, the type of things I’d definitely attempt if the phrase ‘you can do anything you set your mind to’ was actually true (it’s not, sorry).
Resolutions I Sincerely Plan to Achieve in 2019
Summit Mt Everest in a Pikachu onesie.
Prove the Big Bloop is a giant undersea creature and not just ‘shifting ice plates’ like ‘scientists’ want you to believe.
Learn to speak hieroglyphics.
Train a romp of sea otters to compete in the synchronised swimming competition at the 2020 Olympics. Admit it, you’d watch that.
Construct a building using only pancakes and industrial-strength maple syrup on the border between two nations. Not a house though. Maybe a bank?
Catch a serial killer (this could tidily knock two items off my long-standing bucket list, depending how it plays out).
Grow a third arm.
Successfully petition for sea otters to be eligible to compete in the 2020 Olympics.
Circumnavigate the Earth north-south on a unicycle.
For once, I feel no anxiety about these resolutions. I know they’re doomed to failure. And allowing myself to fail is, under the circumstances, actually a pretty good feeling. 2019 is shaping up to be a stellar year, even if the reality is most of it will pass much like 2018, ie like this:
One of the few positives of putting most of my life on hiatus due to illness is that I’ve actually had more time for reading.
I’ve always loved reading. I used to walk home from school with an open book, looking up only before crossing the street, and even then only if I wasn’t at a really good part.
When my chronic fatigue was at its worst in 2017, I wasn’t able to read. I’d start a sentence, and by the time I finished, I’d forgotten how it began. I’d re-read the same sentence over and over, but my brain was too tired to both decipher the writing and hold onto the meaning.
I still have days where I’m too tired to read, but they’re becoming less frequent. And because I have spent so much time home on the couch, I actually read more this year. Comparing the past six years indicates how much time I spent at home by the number of books I’ve read.
2013: 20 books
2014: 23 books
2015: 26 books
2016: 21 books
2017: 32 books (gradually becoming ill)
2018: 50 books (ill all year)
It turns out the secret to reading a lot is being chronically ill (maybe that is Reading in Winter’s secret? Or maybe she’s one of those healthy people who just don’t sleep, which is basically a superpower).
2018 reading breakdown
64% Australian authors
57% women authors
24% debut authors, of which 22% (11 books) were debut Australian women authors
6% zombie fiction
2018 reading highlights
Vodka & Apple Juice by Jay Martin (NF) Having left a successful career in Canberra, Martin is both excited and nervous to spend three years in Poland accompanying her husband on a diplomatic posting. Her narrative traces her efforts to learn the Polish language and the unwritten rules of Polish life, as well as the challenges of making meaningful friendships and helping her marriage survive the long, grey winters. Her writing is personable, peppered with gentle humour and introspection.*
Traumata by Meera Atkinson (NF)
Traumata is a sense-making project, or rather the summary of Atkinson’s lifelong effort at sense-making. Interspersing research into trauma, memory and psychology with explorations of her personal traumata – the plural of trauma – she presents an incisive case study of trauma’s effects, how it can compound at an individual level, and how it operates in society. (First published in The Australian)
Don’t Sleep There Are Snakes by Daniel Everett (NF)
Everett spent 30 years in the Brazilian jungle, living among the Pirahã tribe. His book recounts his experiences in the jungle, and his efforts to translate the language of this still-isolated tribe. Through his cultural immersion, his life and religious views change dramatically, as does his understanding of foundational concepts of linguistics, and more profoundly, how and if people from diverse cultural contexts can truly understand one another. Inevitably he learns far more from the Pirahãs than they take from him. The prologue frames his experiences by describing the morning an entire village of Pirahãs woke early to observe a visiting spirit on the beach. They insist the spirit is as present before them as Everett is. ‘Over the more than two decades since that summer morning, I have tried to come to grips with the significance of how two cultures, my European-based culture and the Pirahãs’ culture, could see reality so differently,’ Everett writes. ‘I could never have proved to the Pirahãs that the beach was empty. Nor could they have convinced me there was anything, much less a spirit, on it.’*
Always Another Country by Sisonke Msimang (NF)
Msimang grew up in exile from South Africa, the daughter of a freedom fighter and follower of Nelson Mandela. Her eloquent memoir of home, belonging and race politics traces her childhood in Zambia, Kenya and Canada, her university years in America, and her return to a South Africa that is free but not just. (First published in The Big Issue)
Eggshell Skull by Bri Lee (NF)
Lee’s experiences, both professionally and personally, make clear the human fallibility and biases of the justice system, and how it is stacked against women. Women and children are often victims of crime in their own homes, and the perpetrators are people they know. But juries are unlikely to believe any woman who isn’t the ‘perfect victim’, a woman who appears chaste, is not on birth control, and is preferably attacked by a shady-looking stranger in public, not an average-looking bloke she happens to know, even casually. And if a complainant is inconsistent in her reports, if she becomes too emotional, she is less believable, even though these are normal responses to trauma. Read the full review here.
Being Shot by Gail Bell (NF)
Blending memoir with journalism, Bell examines her own experiences, alongside those of a number of other shooting victims, to consider both the physical and psychological aftermath. She also interviews recreational gun owners, war veterans, and police and RSPCA officers who use weapons in their work. In an effort to understand the appeal of guns, she considers their 500-year history and current prevalence in pop culture. Read the full review here.
How I Rescued My Brain by David Roland (NF)
Roland was a psychologist who developed post-traumatic stress after working with violent offenders in the prison system, as well as traumatised patients. This and other stressors, including financial ruin and the breakdown of his marriage, likely played a role in the stroke that reduced his cognitive capabilities. His gentle narrative explores both the devastating effects of his conditions and the steps he took toward wellbeing, including mindfulness meditation. Having suffered frustrating cognitive limitations myself since the onset of my illness, I appreciated Roland’s direct, clear descriptions of his cognitive symptoms. He separates these into three categories: the general confusion of fog brain; rubber brain, the inability to take things in; and sore brain, the physical hurt that cognitive strain would cause, even for a task as simple as making lunch for his children.*
The Friendship Cure by Kate Leaver (NF)
Just as loneliness causes us harm, friendship can dramatically affect our physical health, as new research shows. Having a caring social network of close friends may lower your risk of Alzheimer’s, obesity, heart problems and high blood pressure, and improve your chances of staying fit. Likewise, having a close friend at work can improve attention span, mood and even productivity. And while friendship can’t cure depression, spending time with friends and cultivating strong friendships can be part of good mental healthcare practices, alongside healthy eating and exercise. Combining scientific research, interviews and memoir, The Friendship Cure explores the many benefits of friendship, along with a few of the perils, through pop-culture references and anecdotes of both successful and failed friendships. Read the full review here.
Claiming Noah by Amanda Ortlepp
Under the umbrella of contemporary women’s fiction, this novel is part of the emotional thriller genre. Set in Sydney, it centres around two mothers and the realities of IVF and postpartum psychosis. With a quickly paced plot and blurred lines between protagonists and antagonists, it’s an engaging read.
Having chronic fatigue is like being under house arrest. The more I stay home, the better I feel. It’s whenever I try to go out and live my life (doing wild and crazy things like attending a one-hour book launch) that my symptoms ramp up.
It’s been more than two years since I started getting sick, and a year since the Fatigue Centre doctors advised me to start tracking my daily step count. The concept sounded simple. I’m supposed to figure out how many steps I can do in a day without causing myself to crash (ie. feel too weak to get out of bed/think coherently). Then I’m supposed to do approximately that many steps every day for two to three weeks. If I don’t crash, I’m supposed to raise the figure by 20% and see if I can maintain the new threshold without crashing.
Yes, there’s maths involved in recovery. That’s how dire things are.
Managing my daily step count (along with timing my cognitive tasks, monitoring my symptoms, taking regular breaks, recording all this minutia, etc) takes a surprising amount of effort. Lately, I’ve been finding it difficult to make the effort.
So, instead of going out and getting more steps today like I should be, I decided to chart my daily step record.
On the positive side, you can notice a gradual upward trend. But overall, these results aren’t encouraging.
Notice how at the start of the year, the fluctuations in my step count were minimal? That’s how the entire year should look. Tight and compact, like an inchworm. Not Mt Everest meets the Mariana Trench. (All that walking in Melbourne was worth it though; I stumbled on some real treasures).
I didn’t include the y-axis figures because I know there’s other people out there struggling even more than I am, and I didn’t want to evoke unnecessary comparisons. This chart lets me compare Chronic Fatigue Ashley to Pre-Illness Ashley. A few years ago, I used a step counter for several months – you know, back when I did stuff like that for general fitness. The chart’s red line is my pre-illness daily average.
I guess what I’m saying is – I’m still pretty sick. There are so many events I missed this year, so many times I cancelled on friends because I felt so unwell I could barely move. And it looks like 2019 isn’t going to start off much better.
It’s not all bad though. My novella has received some excellent endorsements, and just this week received a stellar review from Karen Chisholm on Newtown Review of Books. Good news like this will help me get through another long year of house arrest.