Symptomatology A-Z

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 a metal band is 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)

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, EvelynElvira, Isabella, Tara, and Edna. Women, like houses, cars and boats, are basically property, right?

Roses, because people like roses, I guess: Eden RoseRosebank, 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

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

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

“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.

 

Greetings from the nursing home

Ever since visiting my great grandmother in a nursing home when I was a kid, I’ve dreaded the physical decline, mental deterioration and lack of mobility that are, for most people, part of old age. Occasionally I’d imagine myself as elderly, and start to panic. To calm down, I’d have to remind myself that people don’t just ‘get old’. It happens over a lifetime, and I had many, many years to go before I needed to worry about it.

Then, abruptly, at age 34, I became elderly.

Sure, I don’t have excessive wrinkles, and aside from one skunk streak, my hair isn’t grey. But since I got sick, I’ve experienced all the aspects of being elderly I’ve always been afraid of. Consider my life now:

  • I spend long stretches of time sitting quietly, staring into the middle distance
  • I tire very easily and extremely
  • I’ve lost all my muscle tone and am probably losing bone density too; some days even the hairdryer is too heavy for me
  • I sometimes needs help walking
  • People suggest I get a wheelchair
  • My main occupation is going to doctor appointments
  • I eat a lot of oatmeal (to be honest, I always ate a lot of oatmeal)
  • I can’t remember conversations I had two minutes ago
  • There’s a guy whose entire job seems to be wandering around outside my windows with a leafblower, and he is my nemesis
  • I tell long, rambling stories, and get confused in the middle of them
  • I have falls

The first time I fell was outside the infectious disease specialist’s office. I’d gone to sit on a bench because I was exhausted, as usual. When I tried to stand up, my brain noted that my feet were stuck under the bench. Then it noted that I was off balance, and heading quickly toward the ground.

My brain shuffled through the process it needed to execute to right itself. Clearly, something had to happen with my feet, but my brain was baffled as to which foot to move first, and how. It was still sorting through options – right foot forward? Left knee bent? – as my hip and forearm smashed into the concrete.

I suppose if I were truly elderly, my hip would have broken. Still, this was little consolation as I lay on the ground, confused about what had happened. A crowd of concerned onlookers rushed over to ask if I was okay and help me up, and I wished so, so much that on that particular Tuesday at noon, I could just be at my job like a normal, healthy 34-year-old.

I did go to work after that, despite the abundant evidence that I did not have the mental or physical capacity for productivity. My boss watched as I sat at my desk, putting bandaids on my scraped elbow, and then she sent me home, where I sat quietly, staring into the middle distance, and wondering if I would have any visitors that week.

 

My neighbourhood is a poem

Lately I’ve been collecting the names of houses in my neighbourhood. Where I grew up, houses didn’t have names. They were just houses. Everything else had names, including apartment buildings, but not houses, and that didn’t seem strange.

When I moved to Australia, I was surprised by how many houses had names, and announced those names via name plates as if they were attendees at a networking event. But I didn’t pay a lot of attention to the house names because I was a busy person with places to be and things on my mind. My neighbourhood is a poem, Ashley Kalagian BluntNow that I’m sick, I don’t have places to be, or much on my mind. When I can walk, I drift along like a fatigued tortoise, trying to reach a precise step count.

Interestingly, this seems to have cleared up some mental capacity for noticiting details, such as all the strange, poetic house names I’ve passed for years but never noticed. Consider these actual local house names:

Orana
Nebraska
Lochinvar
Norwich
Flinders
Hurlstone
Millbrow
Allerton
The Lily
Elton
Divo
Mea Mai
Banyak Pintu
Austin
Hartford
Sedainota
Shangri-La
Edna
Orielton
Karuah
Monteith
Rosedale
Samian House
Darley
Ventura
Boro
Cornucopia House
Durham
Enom Roo
Grosby
Abna
Pleasant Cottage
Huon
Derwent
Lymington
Elk
Toorack
Moss-side
Clareville
Minora
Rosstrevor
El Nido

Even though Edna and Elton are on different streets, I picture them as a friendly elderly couple. I also picture Elton with a purple glitter finish, maybe some rhinestones (the actual house isn’t living up to its name’s potential). I also quite like Rosstrevor. I assume it was a gay couple who argued for ages about the house name, and finally agreed to mash their first names together.

Shangri-La is a terrible choice. If I came home daily to a place called Shangri-La (or in my case, rarely left) and it was dusty and someone had left clipped nail shards across the bathroom counter and there were burned out lightbulbs that only an electrician could replace because that is not at all inconvenient, I’d feel pretty disenchanted with life.

I mentioned my house name curiosity to my colleagues recently, and one of them told me about a man she knows who migrated to Australia and decided at some point to name his house. He had a tasteful nameplate made with the image of a rosella and a fancy font spelling out “Bella Bosta”.

“It’s Brazilian slang for beautiful shit,” she said.

Which is just about the best metaphor for life I’ve ever heard.