Two furry weirdos make your 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 snuggles during chronic fatigue rest break
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.

 

Resolutions I sincerely plan to achieve in 2019

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

  1. Summit Mt Everest in a Pikachu onesie.
  2. Prove the Big Bloop is a giant undersea creature and not just ‘shifting ice plates’ like ‘scientists’ want you to believe.
  3. Learn to speak hieroglyphics.
  4. Train a romp of sea otters to compete in the synchronised swimming competition at the 2020 Olympics. Admit it, you’d watch that.
  5. Construct a building using only pancakes and industrial-strength maple syrup on the border between two nations. Not a house though. Maybe a bank?
  6. Catch a serial killer (this could tidily knock two items off my long-standing bucket list, depending how it plays out).
  7. Grow a third arm.
  8. Successfully petition for sea otters to be eligible to compete in the 2020 Olympics.
  9. Circumnavigate the Earth north-south on a unicycle.
  10. Finally get my pet chinchillas, Pretzel and Popcorn.

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:
Chronic fatigue syndrome

 

2018: The reading year in review

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
50% nonfiction
64% Australian authors
57% women authors
24% debut authors, of which 22% (11 books) were debut Australian women authors
6% zombie fiction

Australian women authors 2018
Debut Australian women authors published in 2018

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.

*These blurbs were first published at On Writing, from Writing NSW

 

House arrest: Year 3

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 instead. Chronic Fatigue Syndrome, step count

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.

 

Serial killers, zombies, cults and genocide: ten podcasts to love

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:

  1. 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.
  2. 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.
  3. 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?’
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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!

 

Faking it

I performed at The Moth Grandslam to an audience of 500. It went all right. I felt the kind of exhaustion where your individual bones are tired. Here is a photo of me on stage, reaching out to hug a ghost, apparently.

Ashley Kalagian Blunt performs at The MothSome days it’s obvious I’m sick, even to look at me. Mostly I look fine though, while experiencing kaleidoscopic variations of symptoms that can change hourly. Your health can be an incomprehensible grab bag of crap, it turns out.

Some days I feel fine. I usually get one of these days every two weeks or so, though it’s never predictable. I can’t say, ‘Well, last Thursday I felt good, so next Thursday should be fine to book tickets for that thing I’m really keen to see.’ Never book tickets is rule #1, because next Thursday is going to be a miserable day. Or not! No-one knows.

Some days I feel so good, I start to think I must be getting better. This is how I felt last week on the Sunshine Coast. I had multiple days in a row where I felt pretty great, which I’d forgotten was possible.

But I can never just enjoy something. My brain is hardwired for imposter syndrome, that fun condition where you doubt your accomplishments and fret about being exposed as a fraud. Sometimes when I feel good, my brain applies imposter syndrome to my illness, and tries to convince me I was never really sick, I was just being lazy and weak. How could I be as sick as I claim, when I feel so good right now? This has heightened since I learned that Munchausen by Internet is a thing. Munchausen syndrome sufferers feign illness for attention, and now they can do that fairly easily online, posting about imaginary symptoms. So maybe I’ve been faking it all along!

That’s what I was thinking while feeling great on vacation. So great, in fact, that I decided to walk up two flights of stairs. The first flight of stairs winded me pretty badly, but for some reason I didn’t take this as a warning sign. The second flight of stairs pretty much destroyed me. My lungs decided they no longer functioned, my whole body started to ache, and I had to stop and put my head on a bannister for a while.

To recap: I’d been feeling fine, walked up approximately 60 stairs, and spent the rest of the day feeling like I’d been trampled by a zebra. It was a relief, frankly, to have such a stark reminder that despite feeling well, I’m actually still stupidly sick.

Of course I felt well on the coast. I wasn’t cooking meals or running errands or doing laundry or chores or catching buses. All I did was walk along the beach and read, and sit in companionable quiet with Steve. Check out how flat this beach is! That’s some smooth walking.

Ashley Kalagian Blunt on Sunshine BeachThe occasional lack of symptoms doesn’t mean I’m well, which is frustrating. If I feel fine for a day, I want to work full time and exercise and return to my actual life. But as soon as I try to do something a healthy mid-30s person would do, like walk up a few stairs, I’m reminded of why I need to spend month after month sitting around, not doing much of anything, letting life pass by.

 

Being sick is like being trapped in a car while your husband goes hiking

“Trapped” might be overstating it, since the car doors were unlocked, though metaphorically you could say I’m trapped by illness, and therefore it’s an accurate interpretation of our trip to the Blue Mountains last week.

I’m still sick, and still taking regular breaks from the whole-lotta-nothing I generally do most days. And it’s still boring and lonely and heartbreaking, and also not nearly as bad as it could be, so I’m trying not to complain, even when I get left in the car by the side of the road to nap in the backseat while Steve and his cousin go hiking in the mountains.

FYI, I love hiking.

Being sick is like being perennially stuck in the car while everyone else does stuff you used to do, but without you. Sure, I can pose with the best of them. Look at me at Echo Point, smiling like a healthy person and convincing everyone I’m having a great time!

Ashley Kalagian Blunt on chronic illness

And I was having a great time, in the sense that I was relieved to have escaped the apartment for a day, and have the mountain scenery to distract me, even though I spent most of the drive feeling like I was being run over by a tractor.

Here’s the thing: if you meet up with me, I’m probably flooded with adrenalin at the excitement of being out of the apartment and interacting with another human creature, to the point where I’m talking 7200-words-per-minute and, if you look closely, vibrating slightly. I don’t look sick.

But after, at home, I’ll go straight to bed because my eyeballs are burning and my muscles are aching and my brain is too muddled to figure out dinner (does hummus go with oranges?), even though all I did was sit and drink three cups of lemongrass tea and converse for 97 minutes in a public setting.

You’re right, I’d probably feel better if I’d just stayed home alone all the time, except I would go insane.

I am getting better, but it’s slow. Slow like an overseas letter posted circa 1824. Slow like a slow cooker you forgot to plug in. Slow like Australian internet.

I assumed my recovery would look something like this highly scientific graph, where the x-axis is time, and the y-axis is healthfulness: Ashley Kalagian Blunt on chronic illness

A much more accurate depiction of my recovery looks like this:
Ashley Kalagian Blunt on chronic illness

(Which is of course stolen from Demetri Martin.)

My point, if I have one, is that I’ve been in that swirly mess stage of recovery lately, and writing all 419 words of this has felt like a punch in the face, so I’m going back to bed now, at 11:23 am. Good night.

 

CSI: Your Life

The post in post-infective fatigue syndrome indicates that an infection was the catalyst for the illness. In effect, I had an infection and my body successfully fought it off, but something went wrong in that process, which led to PIFS.

But there’s no way to what the infection was. For a lot of people it’s glandular fever (aka mono, aka the kissing disease – which is more aliases than some spies have). But I didn’t have glandular fever.

The doctors said the initial infection could have been subclinical, meaning I was never aware of it. (There’s also no way of knowing if the doctors have correctly diagnosed the condition. It seems like I have PIFS, but there’s no test to prove it. They tested me for literally every other testable condition, sometimes twice, then threw up their hands and said, ‘Huh, must be PIFS then.’)

This mysteriousness leaves me constantly wondering what actually caused my illness.

I have no way of actually knowing until medical science can give me some better information. But that doesn’t stop my brain from trying to be helpful by interrogating everything I’ve ever done/encountered as a possible suspect. Hey, my brain constantly interrupts, could it have been –

  • The chestal rash I had in 2014, that appeared randomly and vanished after three days?
  • The grapefruit addiction I developed in 2016?
  • The time I was bitten by either a gigantic spider or a tiny vampire?
  • Any of the other 82,937 mystery bug bites I’ve had since bugs abruptly added me to their directory of high-end cuisine? (My blood is the insect equivalent of Michelin rated.)
  • Voodoo?
  • The brief period I used the basement stairwell in our apartment complex, which smelled horrendously mouldy, resulting in trillions of mould spores holidaying in my lungs?
  • Any other of dozens of mould-based situations? Brief Encounters with Suspicious Mould is a book I might definitely write.
  • Alien abduction that’s been conveniently wiped from my memory?
  • Encountering some bacteria or virus in Bhutan / Uruguay / Morocco / Cambodia / Mexico / Malaysia / Armenia / Portugal / Vietnam / Bolivia / Thailand / France / Japan / Malta / Turkey / Queensland / North Korea / Peru / etc that set in motion a complex series of biological processes resulting in PIFS?
  • That time I ate alligator?

There’s absolutely no evidence for any of these theories in my personal case. Regardless, my brain has lots of extra time these days, so it obsessively spends that time picking through memories, examining them under its ultramicroscope, cataloguing and ranking them.

Here’s what scares me most: because I have no idea how I got PIFS, I never had a chance to prevent myself from getting it. I likewise can’t suggest to anyone else how they might prevent it. Keep your fingers crossed, I guess! And maybe avoid both gigantic spiders and tiny vampires, that’s just solid life advice.

 

As terrible lotteries go

Ashley Kalagian Blunt
I consider myself a healthy person. I’ve always had a regular exercise routine that at various times included running, swimming, pilates and weight training. I drink lots of water. I’ve never smoked, I don’t eat bacon, and I rarely drank excessively. I don’t have a car, so my daily step average was 18,000 steps. Aside from some weekends during my first uni degree, I’ve slept eight hours nightly throughout my life. In short, I’m pretty boring.

Okay, I probably ate too few vegetables and too much sugar. For several years, my go-to breakfast food was chocolate ice cream. But I overhauled my diet in my mid-20s, cut sugar way down and even ate broccoli, like, once a month. Broccoli!

Although I tried to make good choices to give myself the best chances, it was an illusion to think I had much control over my health. Health is a lottery. Not a jackpot powerball lottery, but a terrible lottery. Like Shirley Jackson’s ‘The Lottery’, in which the winner is stoned to death.

Getting post-infective fatigue syndrome was like winning a terrible lottery. It’s especially hard in my mid-thirties; just as I was finally developing career momentum, everything feels derailed.

But! As terrible lotteries go, PIFS isn’t the terriblest, at least in my case. For one thing, I’m not in pain. A common chronic fatigue symptom is joint pain, and I’ve somehow avoided that. Pain is a major factor in many conditions, including related ones like fibromyalgia. Yes, I spend a lot of my days sitting around, watching my life tick uselessly by, but that would be far worse if I was also in chronic pain.

And while it took half a year of appointments to get a diagnosis, once that happened, I was referred to the Fatigue Centre relatively quickly. At that point, my fatigue was getting worse and worse. I was afraid I’d keep getting sicker until I ended up bedridden for months or years. Once I met with the Fatigue Centre specialists and started following their advice, my symptoms stabilised. And since my first appointment, I’ve actually started to improve.

Six months ago, I’d spend entire days in bed and sometimes struggle to brush my teeth. I was so cognitively depleted, I couldn’t even figure out the process to reheat a pot of soup. And it is terrifying to be 34 years old and confused by soup.

Now, I almost always have the energy to take basic care of myself, and usually have two to three hours of normal energy levels a day, if I follow a strict routine (and don’t attempt anything physically demanding, like walking uphill). It’s a long way from being able to live a regular life – working, exercising, socialising, travelling – but it’s promising.

The Fatigue Centre specialists expect my illness to last three to five years. ‘Ten at most’, they added, ‘as a worst-case scenario’.

It’s frightening not knowing what caused my illness. It’s frightening that there’s no medical treatment, because medical science doesn’t even understand the physiology of this illness (you know the pharmaceutical industry would be selling me pills if they could). But after getting gradually worse for more than a year, it’s a relief to feel myself getting gradually better. Yes, I’m bored and sometimes light hurts my eyes and sometimes I struggle to breath and I can barely walk up a mild incline and sometimes I’m so tired it’s unbearable just to sit up.

But I’m not in pain and I’m going to get better.

And just in case, I’m eating broccoli every day.