Chronic fatigue

House arrest: Year 3

| Ashley Kalagian Blunt

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. 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

| Ashley Kalagian Blunt

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!

 

Pose with my grave and skeleton

| Ashley Kalagian Blunt

NewSouth City Series travel books

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.

Melbourne travel book in Melbourne Laneway
Look how almost perfectly I lined up this shot, thanks to the help of a very patient tour guide.

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.

Travel to the Nicholas Building Melbourne AustraliaThe 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: The Royal Over-Seas League in Melbourne, Australia

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. Travelling in Melbourne Australia, discovering graffiti

Amid the mess of graffiti, I found a real gem: Graffiti in Melbourne Australia

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. ~

PS. The tour guide who helped me out was Local Guide to Melbourne. Highly recommended!

 

Symptomatology A-Z

| Ashley Kalagian Blunt

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.

spirit animal chronic fatigue sufferers
Current spirit animal

 

 

Chateau Relaxo (and other houses I’ve known)

| Ashley Kalagian Blunt

Comedy post chronic illness house namesSince 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!
Comedy post chronic illness house namesI’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:
house names chronic illness comedy

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!

 

Faking it

| Ashley Kalagian Blunt

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.

 

Good news, for a change

| Ashley Kalagian Blunt

I know I’ve been whinging about being sick for a while now (and there’s more where that came from!) but I do have some good news.

Screen Shot 2018-07-25 at 9.22.16 pm

My novella, A Flicker of Justice, No More, was shortlisted for the Carmel Bird Digital Literary Award. This means you lucky ducks can read an excerpt on the State Library Victoria Tablo page. This novella is a crime thriller based on true events, including a terrorist attack in Sydney in 1980.

Screen Shot 2018-07-25 at 9.19.36 pm

Also, I’ve had one of my favourite short stories accepted for publication in Verandah issue 33. It’s called ‘Pre-Morbid Status’ and it’s as dark as it sounds! That’ll come out in September, so hold your breath!

Also also, back in 2016 I was the winner at one of The Moth’s StorySLAM events. Which means I’ll be competing in the GrandSLAM at Sydney’s Metro Theatre on Tuesday 7 August. This will probably be your only chance to see me perform live this year (and I know you’ve been lying awake in bed at night, wringing your hands, sweating about when you’ll be able to see me on stage again).

The Moth is a competitive storytelling event that takes place around the world, and you better believe I’m sticking to my oeuvre: a story that involves me almost dying, and also my husband in the role of himself.

Is it a good idea to perform while I’m sick? No, probably not. Am I going to do it anyway? Yes. Yes I am. I personally will only be on stage for five minutes and IT WILL GIVE ME A REASON TO LIVE. At least until 7 August. After that, all bets are off.

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

| Ashley Kalagian Blunt

“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

| Ashley Kalagian Blunt

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.