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.
Ashley
x
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:
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.
It’s been a year since I was diagnosed with post-infective fatigue syndrome, and about two years since the symptoms first began. In that time, I’ve spent a lot of hours on the couch/in bed, feeling frustrated and trying to remind myself that resting is recovering.
Before I was diagnosed, I watched a lot of TV. I’ve watched more TV in the last two years than in the entire previous decade. TV seemed like the thing to do when I was too tired to read. However, my doctors told me TV can be very mentally draining.
To allow myself to actually rest while I’m resting, the doctors recommended I listen to audiobooks or podcasts, an activity I can do with my eyes closed. As a result, I’ve listened to a lot of podcasts this year. Sometimes I listen to an entire series in a day.
One upside of being ill is that I’ve had the opportunity to lean into things I find wildly exciting, including serial killers, zombies, cults and genocide. You know, the usual topics ladies enjoy.
Out of all the podcasts I’ve listened to this year, here are ten I highly recommend:
The Great Crime
I’ve studied the Armenian genocide for nearly a decade, but I’m still learning a lot of interesting details from this podcast narrating the genocide’s history. It’s well delivered, and exactly as its website promises: “open and accessible to everyone, whether you’re familiar with the subject or totally unaware of this often forgotten, misunderstood, and fundamentally tragic saga.” Also, turns out it’s from New Zealand.
Uncover: Escaping Nxivm
“NXIVM calls itself a humanitarian community. Experts call it a cult.” This investigative podcast from Canada’s CBC is a fascinating look into the group’s leader, Keith Raniere, and a member’s struggle to escape.
Everything is Alive
Okay, you might not be into genocide and cults, but I dare you not to be utterly delighted by these imaginative interviews with inanimate objects. The host works in interesting true facts about each object. In my standout favourite episode, Ana the Elevator, we learn about architect Frank Lloyd Wright’s plans for a mile-tall skyscraper with nuclear-powered elevators. But the best moment is when Ana sees a video of ‘outside’ and exclaims, ‘Is there no weight limit outside?’
In the Dark
This crime-focussed investigative podcast has two seasons. The first unravels the disastrous investigation of a boy kidnapped near his home in rural Minnesota, a crime that went unsolved, with no trace of the boy, for 27 years. The second season investigates the circumstances surrounding a Mississippi man tried six times for the same crime over 21 years. He maintains his innocence. Both seasons are fascinating and revelatory.
Happy Face
The Happy Face serial killer was imprisoned in 1995 after the violent murder of at least eight women. What’s particularly interesting about this retrospective is that it’s narrated by his daughter, who was a teenager when he was arrested.
We’re Alive
Don’t confuse We’re Alive with the only other fiction podcast on this list, Everything Is Alive. We’re Alive is four seasons of zombie attacks set in Los Angeles and the southwest United States. Season 1 is interesting, the story moves along. Season 2 starts to build on season 1. Then season 3 pulls together all the narrative threads from the first two seasons and takes the story to a new level.
Criminal
With over 100 episodes, Criminal looks at crime from a wide variety of angles, featuring interviews with culprits, victims and experts. My favourite episodes include: #15 He’s Neutral: a man who solves his neighbour’s crime problems with a Buddha statue. #51 Money Tree: a woman whose mother stole her identity for credit fraud. #85 The Manual: a murder investigation and the manual used by the killer. #101 The Fox: the story of two 1970s plane hijackers who met in prison.
Revisionist History
Malcolm Gladwell is an author and investigative journalist who looks at a wide variety of social and historical issues from surprising and compelling angles. I also recommend all of his books.
Atlanta Monster
A true crime podcast examining the Atlanta Child Murders: “Nearly 40 years after these horrific crimes, many questions still remain.” The narrator, Payne Lindsey, has another podcast called Up and Vanished. I tried to get into it, but I found both seasons very slow.
Bonus: Atlanta Monster also has the best theme song of all the podcasts I’ve listened to.
Story Club A growing collection of true stories from comedic narrators, recorded live in Sydney.
I’m probably going to spend a significant chunk of the coming year in bed again, so I’m pretty desperate for new recommendations. Please send them my way!
Before visiting Melbourne in September, I read Sophie Cunningham’s Melbourne. It’s one of the City Series from NewSouth, ‘travel books where no-one leaves home’. I’ve spent several years working my way around Australia while reading my way through this series. Melbourne has been my favourite yet. There’s a moment in the book where Cunningham is learning letterpress at a workshop downtown while listening to AFL (Aussie-style rugby) on the radio and taking soup breaks to stay warm. ‘I realised,’ she writes, ‘that I felt about as Melbourne as it’s possible to feel. It was a good sensation, one akin to (but colder than) waking up and taking an early morning dip at Bondi Beach and consequently feeling very Sydney.‘
This is my favourite description of both Melbourne and Sydney.The letterpress workshop took place in the Nicholas Building. I was keen to visit it because of Cunningham’s description of the three ‘lift operators’ that work the building’s elevators. ‘Joan has been spending her days in the lift for thirty-five years, and its walls are covered with newspaper clippings and photos of children, grandchildren and animals. Some of the animals are her pets, others belong to building tenants.’
Wouldn’t it be wonderful to ride in a lift like that? It seemed too good to be true, and it was. Melbourne was published in 2011. Sometime since then, the lift operators have vanished. There were no newspaper clippings or photos, and I had to push the lift buttons myself.
Still, I was already inside and decided to wander around the Nicholas Building, which had the vibe of a curious relic. I was immediately rewarded with this sign on a seventh-floor door:
What is the Royal Over-Seas League? I’ve entertained myself by tossing around possibilities for days, and I’ve come to hope they’re the Avengers of the Commonwealth, like the Justice League but British, knighted by the Queen maybe – and I had stumbled on their Australian headquarters!
I was also rewarded when I reached the top floor.
Amid the mess of graffiti, I found a real gem:
So now I know what I’ll carve on my tombstone. I’m even toying with the idea of having my skeleton put on a pole, like one you’d find in a science lab, and positioned beside my tombstone, perhaps holding a sign inviting photos. Could be a real tourism opportunity for whatever lucky city I’m buried in!
Being sick, I wasn’t able to do a lot in Melbourne. In my wanderings through the Nicholas Building, I went through the wrong door, got trapped in the stairwell, and had to walk down several flights to exit on the ground floor. The exertion of walking down stairs made me nauseous. And when stairs make you nauseous, that’s when you know it’s time to return to your hotel and go to bed at 4:17 pm.
Still, it was a treat to wander along different streets, sit in different cafes, and catch up with some the many friends who’ve moved to Melbourne. The theme of this catching up was definitely Let Me Tell You About How My Body Has Turned On Me, but that’s fine. I’d much rather people ask about my crazy illness than pretend everything is normal. And I’m slowly slowly slowly (like a sloth through tar) getting better, so I feel optimistic. I know I’ll eventually visit Brisbane and Adelaide and even Alice Springs, and read those books. Who knows what unexpected wonders I’ll stumble upon. ~
The spookiest thing about chronic fatigue is that science doesn’t understand it. As one of my doctors explained, no branch of medicine ‘owns’ this cluster of illnesses yet. In other words, they don’t know where the problem originates in the body. Maybe it’s caused by inflammation in the brain. Maybe it’s a gut flora issue. Maybe it’s an ancient Aztec curse.
Also spooky is the way chronic fatigue affects the entire body and the brain. One theory has to do with a problem in the way the body creates or uses energy at a cellular level. This means the cells are affected throughout the body – brain cells, muscle cells, lung cells, etc.
Whatever their cause, my random assortment of symptoms would make a strange alphabet book.
A: Alcohol intolerance
Long before I realised I was sick, I’d have one drink and feel parched for hours, even if I drank a litre of water after. It was like I’d had a glass of sand. Then that one drink would wake me up in the middle of the night and keep me up for a couple of hours. I assumed this is just what happened when you hit your mid-thirties.
A, again: Air hunger
Air hunger is a fun term for not being being able to get a full breath. It feels like metal band clamped around your lungs, preventing them from fully expanding. This is why my GP thought I’d also coincidentally developed asthma. Air hunger comes and goes, and can last minutes or hours. I often get it when I’m doing something physical, like walking, but it can also happen when I’m sitting at my desk. Nothing like being winded from typing to remind you how sick you are.
C: Concentration impairment
My brain is affected in all kinds of ways. Like all these symptoms, this one comes and goes. Some days I can’t focus on anything and will wander the apartment, randomly starting things, then abandoning them after five minutes.
E: Energy spikes Occasionally I feel fantastic and have to restrain myself from attempting to answer all the emails/clean all the things/run all the errands/write three books to make up for lost time.
F: Fatigue
Fatigue is more than tiredness. When I’m tired, I can still do things. Fatigue is the body’s determination to stop doing things, and after a time it becomes impossible to override.
H: Headaches
Maybe fatigue related, who knows?
I: Insomnia
I assume this is the brain forgetting how to sleep.
J: Joint pain
At first I thought I’d escaped this symptom. Then my left ankle and right wrist simultaneously developed a peculiar crunchiness that also randomly comes and goes.
L: Light sensitivity
The more tired I am, the more light hurts my eyes.
M: Memory problems
I’ve struggled with both short- and long-term memory since becoming ill. At my worst, I couldn’t read because by the time I got to the end of a sentence, I couldn’t remember how it had started.
More M: Muscle weakness
I’ve heard about many people with chronic fatigue who physically can’t get out of bed. Though I had a few days like that, mine isn’t nearly so bad. Still, most days my hair dryer feels like it’s made of solid concrete.
N: Noise sensitivity My brain became particularly sensitive to noise. It struggles to filter out background noise, and when I get tired, I can’t separate the sound of someone talking to me from background sound. I’ve also realised sound takes a physical toll on the body. In an especially loud room, I can feel sound, like lying on speaker.
O: Orthostatic intolerance
This is my new favourite term. I get so tired that it’s unbearable to be upright, even when sitting. As soon as I lay down, I feel significantly better. I thought I was going crazy until I discovered the term for this exact symptom.
R: Reactive depression
Well, sure.
S: Sore throat
Frequently waking up with a sore throat is one of the reasons I spent a year thinking I was coming down a with a flu and just had to rest a lot to ‘fight it off’.
T: Temperature dysregulation
Prime example: my brain no longer suggests I remove my jacket before I end up with a heat rash.
W: Wakefulness
Being absolutely exhausted but lying awake all day is pretty much the definition of a waking coma, isn’t it?
Z: Zzzzzzzzzzzzz Other days I sleep 16 hours or more.
Since I first began aimlessly wandering my neighbourhood (a side effect of being sick), I’ve collected nearly 150 house names. I’d passed most of these places many times before, and never paid attention to them. When I was healthy, I always had somewhere to be and something on my mind. Now my mind is desperate for distraction. Also, I walk much slower.
I still find the concept of naming your house quirky, because houses in Canada didn’t have names. It’s as odd to me as if people slapped name plates on their furniture. ‘Welcome, this is our couch, Sylvester, and our loveseat, Wooloomooloo.’ Odd, and oddly endearing.
After collecting so many names, I’ve realised there are a few broad categories the house names fall into. These include:
Place names: this seems to be the most common. Some of the names are obvious, like Indiana, Nebraska, Lochinvar, Chippendale and Austin. Others are less obvious, but on researching them, they turn out to be more obscure place names. Clutha is a town in New Zealand, Uralla is in New South Wales, and even Chelveston is a town in England.
Women’s names: Many of the houses also have women’s names, such as Shirley, Evelyn, Elvira, Isabella, Tara, and Edna. Women, like houses, cars and boats, are basically property, right?
Roses, because people like roses, I guess: Eden Rose, Rosebank, Rosebriar,Rosedale
I’ve also discovered a few standout names:
Best Australian film reference: Bonnie-Doon
Worst Bart Simpson reference: Kalamunda
Best language mash-up: Chateau Relaxo
And the award for most inappropriate house name … Pompei! I’m curious about the train of thought that led the owners to name their house after the site of an infamous volcano eruption that killed numerous people. Sure, it happened 2000 years ago, but the violent destruction of a community is still the first thing people will think about when they visit. You may as well name your house World War II.
Here is the complete list of house names I’ve discovered since my original post in April:
The real question is this: what would I name my house, assuming I could ever afford one? When I lived in South Korea, my apartment building was steam heated, and the pipes creaked and groaned through the winter. I referred to my apartment as The Belly of the Iron Dragon, which lacks a certain lyricism, I’ll admit.
I assume in the case of houses with place names, the names refer to where the owners’ families came from. If this is the case, I could name my future house Winnipeg, or The Peg or even Peggers. But since I live Down Under, I could broaden this tradition and name it Up Over. While I’m still waiting for the cost of housing to miraculously drop, maybe I’ll name my sofa.
Hit me up with house names, if your neighbourhood has some good ones. I’m eager for more!
Since I first began aimlessly 
I’m curious about the train of thought that led the owners to name their house after the site of an infamous volcano eruption that killed numerous people. Sure, it happened 2000 years ago, but the violent destruction of a community is still the first thing people will think about when they visit. You may as well name your house World War II.
