Life: Cancelled

Author Ashley Kalagian Blunt with rainbow bookshelvesI’ve been really sick.

It’s not COVID, just a bad stretch of my normal chronic fatigue.

Usually I try to find the humour in things. I use humour to cope with life. But over the past few years, life seems to be working hard to beat the humour out of me.

I started doing stand-up comedy in 2015, and was doing it regularly in 2016, just figuring it out. When I told people this, they often said, ‘That’s so brave.’ For me it wasn’t brave. It was raw fun. Even when no-one laughed – and there was definitely at least one occasion where I spoke for five minutes to a stone-silent audience – I had a good time.

Then one day I found myself dreading going to stand-up. It felt like too much effort to get myself out in the evening, to memorise a new bit. So I didn’t go. At the time I thought I’d abruptly lost interest in this thing that I had really loved. Looking back, this is when my chronic fatigue symptoms really started to ramp up. Stand-up was the first thing the illness took from me.

A friend texted on Friday. ‘You have been an expert at social distancing for a few years now — any tips to share? How are things down under other than a TP shortage?’

And I tried to think of something funny. But I couldn’t.

‘Look, honestly, the only tip I’ve got is to understand how much grief is part of it,’ I wrote. ‘If it’s just two weeks, maybe not so much. But if you’re forced to stay home and miss things that you’ve looked forward to, miss time with friends who you might not have much time left with, miss events that you may have spent months planning, grief will be part of it. Naming it helps.’

For the past four weeks, I’ve been feeling too unwell to function, falling behind, then getting just well enough to almost catch up before I fall behind again. I’ve slipped back to where I was about a year ago, health-wise.

Meanwhile, the world has become as unpredictable as my health. Everything seems precarious. Is there any point planning future events? On the rare occasion I’m well enough to go out with my friends, it safe to do so? Should I barricade myself behind a metre-thick wall of toilet paper?

I know I’m not the only one who feels this way. For people like my husband, it’s COVID-19. For me, it’s COVID-19 to power of three years of CFS. For you, maybe it’s worse.

I sort of want to give up. Just go to bed, pull my nine-kilogram blanket over my head and stay there until I’m well, until society stabilises. I’m worn out.

Stay well, wonderful people.
xo

 

The Lost Hours Project

This is my fourth year with chronic fatigue syndrome. I’m so much better than I was, and I’m still so far away from reliably good health.

Because CFS is an invisible illness, and because I sometimes post pictures of myself out doing things, it’s understandably hard to reconcile how sick I still am with the public image I create.
Person with invisible illness sleeping
I understand this – it’s hard even for me sometimes. This week I had five very good days in a row, and caught myself thinking, for the ten-millionth time, ‘if I feel this good now, how could I go back to feeling sick? This must be the end of it.’

On Friday I made a list of things I wanted to get done this weekend. It wasn’t an overly ambitious list, just the usual getting priorities organised. It did include a few important things, like working on the copy edit for my new book. I was also hoping to write a fresh interesting post for y’all.

By noon on Saturday, my body was not having any of it. I spent the rest of the weekend curled underneath my weighted blanket. I have no idea how this week will go.

This year I decided to track how many hours I lose each month to illness, as a way of sharing the reality of chronic fatigue syndrome, and also as a way of (hopefully) showing my erratic but gradual improvement between now and December.

I’m doing this now in part because the number of hours will be tolerable to calculate. In the past they would have been too depressing.

In January I lost 89 hours. If you assume the average healthy adult should have 16 waking hours per day, then in January a healthy person should have had 496 waking hours. I lost nearly 20 per cent of the month, and that’s doing really well compared to previous years.

In other words, I lost 1 in every 5 days and I can still call that ‘doing really well’.

The numbers help, because even the photo can’t convey the reality. It doesn’t show the achy, flu-like symptoms, the cognitive struggle, the hours leading up to this moment that I’m still calling ‘productive’ even though I was struggling to hold myself upright, to think straight.

You can follow the lost hours project via Instagram. Whatever else is happening for you, I wish you good health. 

Ashley
xo

Hollywood’s great kookaburra con

Vivid lights on Sydney Harbour Bridge, blurred24 May 2018 [journal excerpts]
In the latest Jurassic Park, in the first establishing shot of the jungle, there’s the sound of a kookaburra call. We’re supposed to think it’s monkeys. I’ve noticed this in other US films as well. So I finally looked it up online and yes, this a Hollywood trope, the kookaburra call used for jungle scene setting. At some point, some Hollywood sound tech decided that kookaburras sounded more like monkeys than monkeys themselves do, and I was part of a generation raised with that lie.

Steve and I were sitting on the balcony discussing this today when a kookaburra flew right past, laughing! I’ve never seen a kookaburra fly that close to our apartment; usually they’re across the valley at least. But also, the timing.     

1 June 2018
Quite confident the bus driver this morning had never driven a bus before. Or any other vehicle. At one point before the last stop, he looked back, as if to check that everyone had gotten off. He gave me a really heavy look, then turned forward and continued with the route, as if my presence had foiled his plan to abscond with the bus.

4 June 2018
I feel down today. Not fatigued, just disengaged. I don’t know why. Self-doubt, maybe. Phoniness. So many useless feelings. Also there were weevils in my breakfast.

20 June 2018
I hate socks. Does anyone like them? Who wants cloth tubes twisting around their feet and crushing their ankles?

26 June 2018
Conversations about chronic fatigue
Me: It’s hard because I used to be very social and active.
Woman at social gathering: And that’s why you’ve got chronic fatigue.
Me: Uh …

At the pool, Steve swimming, me sitting on the edge.
Neighbour: What’s wrong?
Me: I can’t exercise, I’m sick.
Neighbour: Oh, I thought you’d broken your ankle or something.
Me: I wish.

Me: I’m not at the office much these days because I have chronic fatigue.
Man: Are you a vegetarian? Because I was a vegetarian for ten years and then I got chronic fatigue because I wasn’t getting the right balance of amino acids.
Me: Ah, no, my diet’s fine.
Man: So you’re not getting enough sleep?

I feel compelled to tell people I have a chronic illness because I need to justify to myself my dereliction of life. But it leaves me open to conversations like that. I’ve always worn my heart on my sleeve, but now it seems like everything else is pinned there as well. My pancreas, my liver, my endocrine system. Everything. 

 

But have you tried eating mummified flesh?

One of the recovery strategies the doctors gave me for chronic fatigue was tracking my step count as a proxy for the amount of physical activity I can do in a day. “It’s not exact,” one of the doctors said. “You could spend a day on a stool painting a wall, and obviously your steps wouldn’t reflect that.”

I haven’t painted any walls since I got sick. But I have tracked my steps every day since January 2018.
Chronic fatigue syndrome 2019 step count recovery strategy

The first half of the chart shows a clear upward trend. The second half gets messier. There’s a lot more up and down. Some days are great. I broke a new post-illness step count record in September. I just never know when I wake up if it will be a good day or a flu-y, brain-fogged struggle.

I have high and low energy (the ‘boom and bust’ characteristic of chronic fatigue) on a day-to-day level, but I also now seem to have it on a macro level. I’ll have six terrible weeks, and then four pretty good weeks. So depending on when you talk to me, I might say that I’m feeling despondent about how ill I still am, or excited about how much better I’m getting. Both are accurate.

What I am feeling genuinely great about is that I’m alive and ill in Australia in the 2000s, and not in, say, Europe in the 1400s, when the cure-all craze was mummified human flesh.

Medieval Europeans believed that ground up human mummy could be consumed or even applied directly to wounds to cure everything from nausea to epilepsy. It grew so popular that Egypt began to run short of mummies, and entrepreneurs in Europe started taking bodies from cemeteries to create their own mumia.

This completely ineffectual health fad went on for hundreds of years, and I can just imagine, if I’d lived in Europe back then, how many well-intentioned people would have gotten in touch with me to ask if I’d tried treating my chronic fatigue with mumia.

And the thing is, I definitely would have tried it.

 

Thefting by finding

Sedaris Diaries vol 1When I was 14, my aunt gave me a purple journal with Garfield on the cover (the cat, not the president). This indicates how cool I was at 14. Having barely any friends gave me heaps of time to write in my journal. I’ve kept up that habit for more than two decades.

I sometimes wonder what will happen to the diaries when I die. I doubt someone will go back and read them. They’re incredibly boring. When I mentioned this online, author Annabel Smith described her own diaries as ‘right on the boring/excruciating boundary’. I thought that was the perfect description.

I’m a huge fan of American essayist David Sedaris, whose work is hilarious and illuminating. When he came out with Theft by Finding: Diaries Volume One in 2017, however, I thought ‘this feels like too much. Do I really need to read this guy’s diary excerpts?’

I was pretty certain the answer was no. But then I got sick for years and Theft by Finding was released as an audiobook, and I was desperate for entertainment I could consume while lying down with my eyes closed. I was surprised to discover I loved Theft by Finding. It’s become one of my all-time favourite books. Sedaris weaves in his own story, and it’s actually quite interesting (from working odd jobs straight out of high school in his home state of Carolina to art school in Chicago to huge success as an author in New York). But what really makes his diaries is his observations about the world around him. It seemed like a technique worth developing in my own diaries.

To be clear, I think Sedaris’ diary excerpts are brilliant and fascinating and reflect the sociopolitical issues of their times. Whereas mine are mostly things I found entertaining. I started posting a few excerpts. My journals still feature lots of boring/excruciating bits, but thanks to Sedaris, I think there’s a few good bits too.

*

May 14, 2018
Recently I was complaining about houses and dogs having people names like Gerald. Today, a friend mentioned that she’d met someone at work whose name is B’rit. ‘With the apostrophe,’ she said. That’s a bit strange, I replied. ‘My sister went to high school with a girl named Haloumi Sparkles,’ she added. I didn’t get a chance to ask if Sparkles was her middle name or her surname, because someone else cut in.
‘A girl from my high school named her kids Tiger and Sabre.’
A third woman among us topped even that. ‘My dad is a pediatrician and he has a set of twins as patients,’ she said. ‘One is called Bladeinjail, because his dad is in jail for stabbing someone. The other is called Captain Dangles.’

May 29, 2018
There’s a huge billboard advertising a space for lease, near my office. It features an image of a cat with a third eye photoshopped into the centre of its forehead. The cat is giant, the size of a car, and its three eyes stare down at you, as if trying to hypnotise you into leasing the building.  I have been looking for a large commercial and/or office space…

June 1, 2018
Saw a man wearing one red sock and one blue sock. Society is really falling to pieces, with our reliance on fossil fuels, the election of Trump, and now this.

 

Like floating in space, but wet

My doctors advised me to manage my chronic fatigue recovery by taking frequent rests throughout the day. This is fine if I’m home, where there’s no people buzzing around, where I can put on my eye mask and if necessary, noise-cancelling headphones. When I’m not home, it’s harder to actually rest. And sometimes it’s not possible to be home every three hours.

One thing I used to find wonderfully restful was getting a massage. Technically I can still get a massage, but it will leave me as exhausted as if I went for a run. (Obvious conclusion: having a massage is a form of exercise.)

So I’ve been looking for restful alternatives. Which is how I discovered the sleep pod.
Sleep pod in a hotel business loungeI found this particular sleep pod at a Brisbane hotel. The hotel was so futuristic, my room didn’t have light switches (light switches are so 20th century). Instead it had a smartphone on which you could set ‘moods’ for your room. Except that when I arrived, the smartphone battery was dead, so the mood of my room was ‘put your makeup on in the dark’.

The sleep pod was in the business lounge. Sure, I could have rested in my actual hotel room, but the pod promised executive-quality power napping. This turns out to mean that you get in, the pod reclines and vibrates mildly, and some blue lights inside the pod bit imply that your nap is futuristic.

I give the sleep pod a D+.

Next I tried a float tank, also called a sensory deprivation tank. Float tanks are filled with salt water, so you can float like you’re at the Dead Sea, except without all the slick mud and tourists taking photos. So maybe it’s more like floating in space, but wet.
A float tank in a float tank centre
You spend an hour in the tank, floating total darkness and blissful quiet, trying not to get salt water in your eyes.

I give the float tank a B+.

Is it more relaxing than napping in a sunbeam on my own couch with an eye mask and noise-cancelling headphones? No. Sunbeam naps at home are a solid A+.

If I’ve become an expert in anything in the past few years, it’s napping, and this is my expert recommendation. Nap at home, in your pyjamas, with the whole world blocked out by eye masks and headphones and layers of blankets, even if it means you’ll spend far more time there than you ever expected or wanted to.

 

 

Launched!

Author speaks to crowd at My Name Is Revenge book launch
We launched My Name Is Revenge on April 10. The crowd was amazing, and the signing line-up lasted for practically the entire event. My husband Steve was MC, and he introduced the guest of honour, author Emily Maguire.
Emily 2
In Emily’s speech, she described the first time she learned about the Armenian genocide, about ten years ago. Flipping through a library book, she saw Arshile Gorky’s painting, The Artist and His Mother. Gorky was a survivor of the genocide, the caption in the book informed her. She’d never heard of it. That evening she had dinner with a group of artists, and asked them about it. Some had heard of it, but no-one could give her any specifics.

She connected this to Hitler’s infamous 1939 quote, ‘Who, after all, speaks today of the annihilation of the Armenians?’ and she described My Name is Revenge as ‘a gut punch of a book, a necessary and urgent shout back to the silence’.

I wrote this book for people like Emily, who may know little or nothing about the genocide simply because it hasn’t been spoken about nearly enough – in our school textbooks, in our books and films, in our public discourse and private conversations.

After the speeches, we ate cake. Steve had been worried about the cake, because I ordered it off the internet, so how did I know if it tasted any good? I was more concerned with how the cake looked, and it looked pretty darn good.
Cake - better.JPG
It tasted as good as it looked. After it was cut, the restaurant placed it under a heat lamp (by mistake, I assume) and by the end of the evening the last few slices had melted into a lump of warm chocolatey goo.

I felt great at the launch. I was careful to rest a lot in the days leading up to it, and did as little as possible the day of the launch itself. I find evenings especially hard; they’re usually when I’m most worn out. But the night of the launch, my body flooded me with adrenaline. And everyone was so generous and kind, as evidence by the four bouquets of flowers I received. (My apartment has never been so full of flowers!) Author Ashley Kalagian Blunt at book launch with flowersLots of people commented on how great I looked. I tried not to talk about being ill, because I wanted to forget about it for the night. People saw me full of energy, bright and bubbly.

I left feeling like a cement truck had run over me. Every muscle in my body hurt. I spent all of Friday in bed recovering.

In general, my chronic fatigue has improved significantly. Last year I wouldn’t have been able to attend an event like the book launch. But I’m still not recovered, even though I may look and act like it in small bursts. CFS is inconsistent, which makes it complicated to explain.

I’m very grateful I was able to organise and attend the launch for the book that marks ten years of writing on the Armenian genocide. But I also think it’s important to reflect on the complexity of living with invisible illness.

Thanks again to everyone who attended the launch (like crime writer AB Patterson, who wrote this great post about it). And special thanks to all the amazing, brilliant and uncommonly attractive readers who have left reviews on Goodreads and Amazon.

Ashley
xo

A weird silver lining in the chronic illness clouds

Since I started posting charts tracking my chronic fatigue recovery, I know you’ve been desperately waiting for the next update. Every post is like a cliffhanger season finale.

There’s been a lot happening lately. And I was doing well. Check out my step count, especially that excellent stretch from mid-January to mid-March. No crashes at all, fairly consistent daily step totals. Life was good.

Chronic Fatigue Syndrome recovery program daily step count chart

Then a few weeks ago I had a very hard crash. At first I wrote it off as a random flare up. But not long after, I started coughing the wet, horsey cough that indicates either a chest cold or a lungful of rotten porridge. It felt like the latter, to be honest.

The chest cold combined with my ‘usual’ chronic fatigue meant that I’ve done nothing for days other than watch Youtube videos of dogs running agility courses. Which is fun for the first 15 hours, then gets a bit repetitive. Still great though.

This return to severe fatigue is terrifying for me. I made commitments based on my February level of wellness. My first ever book launch is on April 10. The following week, I’m giving a talk about the book.

And then, on Friday, May 3, I’m chairing a panel at Sydney Writers’ Festival. You know, the biggest Australian writing event of the year if you’re not paying attention to Melbourne.

The SWF panel was a surprise. I’m not there to talk about my book (although it will be in the festival bookshop, which is a huge win). I’m there to talk to two authors who both write about chronic illness.

I have a strong suspicion that I was asked to chair this panel because I also have a chronic illness. Maybe not, maybe it’s just a coincidence. But if that is the reason I was asked, it’s a weird silver lining to being ill.

If I’d known I could have gotten onto the SWF program by getting a chronic illness, I would have … actually I wouldn’t have done anything differently, it’s still not worth it. But at least it seems like one definitively excellent thing has come out of the experience. I hope everyone experiencing chronic illness can say at least that much.

Wish me luck surviving the next month! And if you’re going to SWF, make sure to grab a copy of My Name Is Revenge at the festival bookshop.

Ashley
xo

PS. If you’re keen on hearing about more upcoming events that might kill me, plus great reads and book giveaways, sign up for my monthlyish enews.

 

Quantifiable excitement

I don’t know about you, but my 2019 started pretty rough. I  can show you exactly how rough, thanks to my daily step count (part of my chronic fatigue recovery process).
Screen Shot 2019-02-06 at 5.12.49 pm

You can see that extreme crash on January 7, a day I could barely get upright. And then a few semi-functional days, followed by another extreme crash. If this was a mountain range, it would be impassable.

Now look at this!
Step count for chronic fatigue syndrome recovery
It’s less a mountain range than a gentle stroll! Okay, okay, that’s not even a full month, I know. I shouldn’t be getting excited. And I’ll wait to share the thing I’ve been doing differently this year that may or may not be the reason for my stabilising energy levels. But contrasting those two images, it’s quantifiably clear how much better I’ve been feeling the past few weeks.

Put in the context of the past year, this is the best stretch of consistent energy I’ve had since early 2017.
Step count for chronic fatigue syndrome recovery

My daily step max is still significantly lower than my previous daily average, so I’ve got a ways to go. (My husband and I refer to Healthy Ashley as if she is a separate person from me; we both like her better than Sick Ashley.) But this is the most optimistic I’ve been feeling in a while.

Which is good, because I’ve got big plans for 2019! I’m looking forward to reading more great books, getting more writing in, and attending more writing events. And I have some exciting news that I’ll be able to share with you soon!

Wishing you day after day of reliable energy.
Ashley
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