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 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)

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!

 

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.

 

Congratulations, you’ve won post-infective fatigue syndrome

Congratulations, you've got post-infective fatigue syndromeThank you for playing Why Am I So Sick All The Time? It’s been an exciting several months, but we’re finally ready to announce the outcome. Remember, all of these conditions and more were in the mix:
Lupus
Malaria
Ross river fever
An allergy to cockroaches
Pregnancy
Maybe some kind of cancer?
Multiple sclerosis
Syphilis

After much consideration and approximately 8500 blood tests, we’re delighted to announce that you have chronic fatigue syndrome! But wait, there’s more! Medically unexplained fatigue comes in a variety of colours and styles:
Standard chronic fatigue
Post-cancer fatigue
Post-concussion fatigue
Post-infective fatigue

Since you’re lucky enough to have post-infective fatigue syndrome (or PIFS, for fun), you’re probably wondering what ‘infection’ you had that kicked this all off, right? Well, it could have been anything. A cold, a flu, that one time you sneezed so loud your husband dropped his iPhone in the sink. In fact, the infection could have been subclinical, meaning you never had any symptoms! Imagine that!

Curious how post-infective fatigue differs from standard chronic fatigue? No-one will adequately explain that to you, ever.

With PIFS, you can enjoy a wide range of new and unpredictable symptoms, including but not limited to the following:

Fatigue, obviously
You’re so tired, it feels like you’ve been awake for a week straight. It feels like you just ran an ultra marathon. You’re so tired, the physical act of holding yourself upright in a chair is unbearable.

Wakefulness
Combing nicely with your overwhelming tiredness is a complete inability to fall asleep or even catch a short nap. Ideally, you should be awake as much as possible to contemplate all the things you could be doing if you weren’t so horrifically exhausted. This also gives you ample time to catch up on social media, so you can see how everyone else’s lives have gone on without you. Look at all your friends and family, achieving their goals and living life to the fullest!

Impaired concentration & short-term memory
You know that thing when someone introduces themselves and you forget their name within 8.29 seconds? Now imagine that for every third thing said to you. And you know how sometimes, you walk in a room and you can’t remember what you wanted there? Well, replace sometimes with always. And replace walk in a room with open a cupboard or click on a desktop file. Then you’ll get it. Except you won’t, because by the time you’ve reached the end of a sentence, you’ve forgotten how it started. Something about mangoes?

Pseudo-nausea
Are you nauseous? Or are you just so tired you’re starting to mistake that for nausea? It’s hard to tell!

‘Unrefreshing sleep’
This is the technical term specialists use to describe how even when you do get a decent night’s sleep, you’ll wake up feeling like you’ve been run over by a lawn aerator.

Shortness of breath
Sometimes your lungs feel constricted and you can’t get a full breath. Maybe you’ve got asthma. You never had asthma before, but maybe you’ve coincidentally developed asthma at the exact same time as this other mystery condition. No, seriously, pay $25 to blow into this tube. Blow! Blow! Blow! Well, there’s definitely something wrong with your lungs, and it’s definitely not asthma. That’s all we know.

Thank you for playing Why Am I So Sick All The Time? We hope you enjoy your new life with PIFS!

 

The 7 Wonders of My Sock Drawer

  1. Sausage dog made from plastic cocktail sausages
  2. 7.35 in convertible pesos smuggled out of Cuba
  3. Piece of fool’s silver (balled-up aluminum foil)
  4. Journal with entries for January 1 through 3, 1997, remainder blank
  5. Really old raisins or maybe rat droppings
  6. Bar of soap shaped like a toilet
  7. Three socks without holes (unmatching)

2017’s Hottest Fashion Trends

Ashley Kalagian Blunt hottest fashion trends

  1. Habanero sauce, rubbed everywhere
  2. Skirt made from rings of fire
  3. Miniature Hadron Collider vest, set to 9.9 trillion °F
  4. Actual fireplace strapped to your waist
  5. Paper mâché volcano hat
  6. Suit made of quasars (they’re very hot)
  7. Full-body skin suit of 2017’s Sexiest Man Alive
  8. Gloves that are actually Carolina Reaper peppers
  9. Dwarf star fascinator
  10. The Hope Diamond, after you stole it
  11. Flame-shooting bra
  12. Suit of toast fresh out of the toaster

 

How to be Australian according to your passport

Your passport contains the distilled essence of Australia. Study its images carefully during the interminable minutes in line at Immigration. Each image is a puzzle piece. Fit them together, and you will know what it is to be Australian.

Australian passport
Australian passport images, in order of appearance

  • Parliament, featuring the largest free-standing stainless steel structure in the southern hemisphere
  • A kookaburra who really wants you to know about travel insurance
  • A Tasmanian devil suffering lockjaw
  • Surf lifesaving chicks about to launch floaty things into the water
  • A camel caravan
  • A thorny devil
  • A depressed wombat
  • A water tank, windmill-thing and what might be a station house
  • People sitting on car bonnets observing a horserace
  • An even more depressed platypus
  • A man being cruel to a herd of cattle
  • An open-mouthed saltie
  • Cricket
  • A smarmy koala
  • A noble dingo who definitely hasn’t eaten any babies this week
  • Two scuba divers checking out coral
  • Beachgoers
  • A page translated into French, Australia’s unofficial second language
  • A pointy-nosed chipmunk?
  • A highway leading to distant hills, with trees
  • A love-struck emu
  • An RV hitched to a ute, maybe Uluru in the background?
  • A bearded dragon who’s ready to party
  • A kangaroo whose grandfather was a horse
  • Two ladies in togs holding a rope in knee-deep water staring down a big wave
  • A lone surfer
  • A patriotic eagle, the eternal symbol of Australian freedom
  • Just a regular echidna
  • A rural town hotel that definitely has a pub
  • A semi-truck (the designers must have been getting desperate at this point)
  • A sulphur-crested cockatoo who just came out of the dryer
  • Maybe a bilby?
  • Girls playing rugby in skirts because females play sport too
  • Another lizard-type thing – wait, is that a goanna?
  • Sailboats on a harbour
  • A man in an overcoat and fedora staring off towards some power lines or possibly a fence with a definite serial killer vibe
  • Also a lot of plants. Give me a break, I’m not a botanist.