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.

 

A certified medical ice cream float

Update: I haven’t managed to get Pretzel and Popcorn, my wood-chewing, hay-eating, mould-sprouting chinchillas – yet. In the meantime, I’ve had to find something else to reduce the tedium of the enforced breaks I’m supposed to be taking five times a day, according to the chronic fatigue specialists.

Which led me to purchase this Certified Medical Device:Ashley Kalagian Blunt ice cream float

Yes, that is an inflatable ice cream cone, with scoops of strawberry and vanilla and a cherry pillow on top. No, it didn’t come in chocolate. I guess people don’t want to think about the colour of chocolate when they’re in the pool.

I realise this makes it look like having chronic fatigue is basically a vacation. If you’re the type of person who aspires to a lifetime of napping, watching TV and staying at home, and you don’t mind feeling vaguely ill most of the time (and extremely ill some of the time), chronic fatigue might be a vacation for you. Pretty much everyone I know, however, has goals, aspirations and interests that require significantly more energy than it takes to float around on a plastic ice cream cone.

When I bought the ice cream, I pictured myself calmly lying in the pool, staring up at the sky, enjoying the fragrance of the frangipani flowers and the chittering of the rainbow lorikeets. The ice cream float is more of a barge, however, and it didn’t come supplied with an anchor. This means it never stays in one spot. It drifts and meanders through the pool, ricocheting off the sides.

Which would be fine if I reliably had the pool to myself. I happen to share it with the residents of 800 other apartments, however, several of which are small children.

Unfortunately having the ice cream barge in the pool with small children is not ideal for two specific reasons:

  1. the ice cream is constantly moving but for some reason was not equipped with steering capacity or braking; and
  2. small children are not smart enough to get out of its way when it comes drifting toward them at speeds of up to 7 knots.

This is how I ran over a child in the pool last week. She was fine, but the hassle of making sure I didn’t run her over a second time meant I could hardly lie back and relax.

Which is why these days, I’ve spent my breaks lying on my ice cream float as it stays securely in one spot on the living room floor, while I stare up at the ceiling, listening to traffic. Is this helping me get better? I don’t know, but it’s damn well making me feel like I’m getting $38 worth out of my ice cream purchase, that much is clear.

Heal yourself with chinchillas

Chinchillarama

Lately I’ve been spending a lot of time watching teenage girls on YouTube lecture me about chinchilla ownership, and I have a learned a lot. I’ve learned chinchillas eat hay, specifically Timothy hay, as though they are tiny misshapen horses. I’ve learned chinchilla well-being requires vertical play space. I’ve learned chinchillas need a supply of wooden toys and pumice stones to wear down their constantly growing, freakish teeth.

I have a lot of time to watch chinchilla advisory videos because, since I’ve been sick, I’ve had to stop doing most things. I had to quit stand-up comedy, because I was going to bed at 7pm. I had to quit drinking, because it makes me much sicker. I had to quit exercising, because it also somehow makes me much sicker. I had to quit the speaking club I’d been part of for five years. I had to quit going to all non-essential places, because going places is the worst.

I didn’t have to quit my job, but I work so few hours now that when my pay comes into my account, a bank employee calls to laugh at me.

My life has become an abhorrent vacuum, which I’ve been trying to fill by watching all 426 episodes of Law & Order SVU. But eventually even that will run out. Since the fatigue specialists told me I could incorporate pet-patting into my recovery program, I’ve been angling for a pet.

My husband and I have both wanted a dog for years. But we’re renters. We approached our landlordess about getting a dog, but we forgot that where we live isn’t a home, it’s an investment property. And even though we’ve lived here six years and proved ourselves to be mature, conscientious adults who could reasonably be expected to take good care of a dog in an apartment, no.

A friend suggested I get a cat, because they’re easier to care for than dogs. But I doubt any cat will permit the strict patting routine my recovery program requires. So I began to research the pros and cons of getting several chinchillas.

Pros

  • A single chinchilla can achieve the cuteness of level of approximately eight kittens, scientifically speaking.
  • Possible names: Mustard, Popcorn, Pretzel, Son of Coco.
  • We’re not allowed pets in our apartment, but as chinchillas are closer to animated stuffed toys, this doesn’t apply.
  • Instagram celebrity potential = high, especially if Pretzel acquires a wardrobe of Batman-themed costumes.

Cons

  • Like gremlins, chinchillas shouldn’t get wet. They don’t turn into mauradering monsters named Stripe, but they do go mouldy. Even the oil from your hands can muck up your chinchilla’s delicate fur. To keep dry and clean, your chinchilla needs to roll around in a special plastic container filled with special chinchilla dust, such as the actual product All Living Things Blue Cloud Dust. In the words of Autumn Windish, my favourite YouTube chinchilla expert, “No one wants a mouldy chin.”
  • According to Autumn Windish (I will be very disappointed if that’s not her real name), chinchillas need much more than just a vertical cage, Timothy hay, blue cloud dust, wooden toys and pumice stones. They also need a hay dispenser, water bottles and a litter box. They need a product called a chin-chiller, a granite slab for preventing your thick-furred chinchilla from overheating, which you can purchase in packs of four. They need something called kebabs, which Autumn Windish describes as ‘self-explanatory’. But here I have to disagree with Autumn – it is not at all self-explanatory why chinchillas need kebabs.

The overriding con is that my husband has a strict anti-chinchilla policy. He claims that, contrary to my doctor’s advice, having a chinchilla is not essential to my recovery.

He is not the person home sick and alone all day, however. Nor do I think he is fully aware of just how easy it is these days to order pretty much anything online from a pet supply store and have it delivered straight to your door. Besides, once he sees Pretzel and Popcorn on their respective granite chin-chillers, he’s sure to change his mind.

The new torture

Developing post-infective fatigue syndrome, a condition that’s still largely a mystery to modern medicine, was a stroke of significantly bad luck. But I also had good luck, in that I had access to specialists at the nearby Fatigue Centre.

The Fatigue Centre specialists explained that while there is no cure for post-infective fatigue, there’s a lot I can do to manage my symptoms and, in theory, aid my recovery. Their advice boils down to two main points.

1. Track everything
They mean everything: all activities, sleep, mood, breaks, naps, steps and dog sightings. Well, I added the last one, but the rest are legit.

For two weeks I kept hour-by-hour notes on what I did and how I felt. This let me see how much I’m able to do before I have so little energy left, I can no longer feed myself or even maintain a sitting position.

I also have to track my daily step count. When I was healthy, I averaged 18,000 steps a day. Being active and not owning a car made this easy. My favourite days were when I could go hiking and get up to 35,000 steps.

Now instead of trying to increase my steps, I have to keep them under my new threshold, which started at 6000 steps. Every day I scratch step-count math in notebooks, planning what I might be able to do based on the required steps. A sample of my step tallies:

Steps from the couch to the bathroom, one way: 16
Steps used per load of laundry: 675
Steps used getting to work, one way: 1532
Steps for an average grocery store trip: 2159
Steps from my door to platform 16 at Central Station: 1023

Managing chronic fatigue by resting excessively

2. Rest excessively
When I was healthy, I always tried to do as much as I could, usually two things at once. I’d wash the dishes while talking on Skype. I’d exercise while listening to an audiobook. I’d stretch my calves while brushing my teeth.

Thanks to my chronic fatigue, much of my day is now taken up doing zero things at once. I’m supposed to take a minimum of five breaks each day, which should be 15-20 minutes. Not in total, but 15-20 minutes each. During these breaks, I’m allowed to do any of the following:

  1. Lie down or sit and have a cup of tea. As a bonus, I can look at a tree! (Sometimes I cheat and look at several trees at once.)
  2. Pat a pet: this one 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).
  3. Meditation/mindfulness/breathing exercises: I feel like if I had any aptitude for this quantity of meditation, I would already be a monk. Yes, meditation is highly beneficial, but when given free time, my brain prefers to list all the productive things I could be doing with those 15 minutes if I were well, and then berate me for being sick and useless.
  4. Colouring in: no.

On the breaks, I’m not allowed to eat, look at any kind of screen, chat, read, stretch or walk. I can listen to music, but only if it’s calming.

The breaks drive me insane.

I suspect most people nowadays can’t remember the last time they did nothing for 15 minutes. Nothing. Not a single thing, other than just sitting with their own rampaging thoughts. Oh, and looking at a tree.

Conclusion: 6000 steps a day isn’t enough, and in our driven, goal-oriented, information-saturated society, being forced to take medically advisable breaks is a unique form of torture.

 

Maybe you’re allergic to cockroaches

When I first began to suspect that my intermittent, worsening bouts of illness might be the individual heads of one sinister, hydra-like illness, I came to a horrifying realisation: I’d have to see a doctor. It was May 2017. By then I could trace a clear pattern of symptoms back at least six months. But because the mystery illness had crept up on me so vaguely, I had no accurate idea of when it really began. Perhaps mid-2016, or even earlier.

My previous experiences with doctors hadn’t inspired a lot of faith in the medical community. Luckily by this time I’d found a doctor who wore clean, moderately professional clothes and had not yet laughed at me.

My first visit to the doctor about my mystery condition was in June 2017. My main symptom was random days of extreme fatigue, the kind that prevents you from working or moving or even thinking much. I also had random headaches that may or may not have been related.

I acknowledged my symptoms didn’t give the doctor a lot to work with. Dutifully, she tested me for everything. She sent me for an MRI. She sent me for a full-body CT scan. She sent me for blood tests for every condition it’s possible to test blood for.

When I showed up at the lab with the doctor’s list of requested blood tests, the technician looked over the list and began collecting empty vials. When she had filled a bucket with vials, she held it up to me.

‘We’re going to take this much blood today. Is that okay?’

I blinked. ‘If you think I have that much spare blood, go for it.’

None of these blood tests turned up anything except the need for more blood tests. On paper I looked very healthy, but by that time, the fatigue had transitioned from part-time to full-time. I was struggling through even basic activities, such as chewing and breathing.

Testing for cockroach allergies

One of my referrals was to an immunologist. Suspecting allergies could be contributing to my symptoms, he suggested I spend several hundred dollars to allow a nurse to scratch a pattern of tiny wounds down my arm, and then dab allergic substances into those wounds. These substances were stored in brown bottles. I watched as the nurse unscrewed the cap on each bottle and dripped its contents onto my arm. One of the bottles was labelled cockroach.

‘People can be allergic to cockroaches?’

‘It’s actually pretty common.’

‘But what can you do if you’re allergic to cockroaches?’

She shrugged. ‘Don’t eat them.’

The immunologist visit was a solid reminder of why I do not trust doctors, especially when my scratch wounds revealed I was ‘mildly allergic’ to various grasses and pollens (thankfully I could eat all the cockroaches I wanted). The immunologist recommended I take an antihistamine.

‘What, just, forever?’ I asked.

‘Try it for a month and see if it helps.’

I went to my local chemist and asked the pharmacist on staff what antihistamine she recommended.

‘They’re all basically the same,’ she said in a harried, distant manner, as though asking her about the products in her pharmacy was an inconvenience she was struggling to tolerate. She pointed to a random box. ‘These ones are cheaper.’

I bought a box of antihistamines. Inside the box, the product information was folded into a tiny origami fan. The potential side effects of the antihistamines included fatigue and headaches. Still, who was I to question the advice of an experienced immunologist?

I took the antihistamines. My headaches got worse. I stopped taking the antihistamines.

After six months of tests and specialist appointments and weekly doctor visits, I eventually received a diagnosis by default.