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

2020 resolutions I might actually stick to

Last year I shared a bunch of resolutions I intended to utterly fail at – and that felt great. Failure is a part of trying, and dealing with chronic fatigue makes me that much more likely to fail, since my daily health is so unpredictable. Acknowledging that I’d probably fail at most goals I set in 2019 was actually very encouraging.

Then I skulked off and secretly set some actual goals anyway. And those went pretty well, especially as the year wore on. Every few months, I regain a little more of my cognitive and physical capacity. Some people think that chronic fatigue is permanent, but when I was diagnosed, the doctors told me that most people recover. ‘On average it takes 3 to 5 years,’ they said. ‘Though it can take 10.’

I’m in my fourth year.

At the start of 2020, I made a list of goals for the year. I could have shared them on Jan 1, but I decided to test drive them before fully committing. Four weeks into the new decade, I think these are the keepers. David Sedaris book signing
For Reals 2020 Resolutions & Goals

  1. Have a first draft of the new novel by December 31.
    I’m 40,000 words into a zero draft.
  2. Gradually increase my micro swims to tiny swims. #chronicillnessrecovery
  3. Jump in the pool without hesitation. 
    This will save me upwards of 15 minutes each time I swim. (And I’m already nailing this.)
  4. Read more books.
    Because my daily cognitive energy still has a hard limit, I’ve been prioritising writing over reading. This year I want to increase my reading time, and add to my list of great reads.
  5. Develop my active listening skills. 
    Which means focussing on what others are really saying to me in conversations, rather than just waiting for them to finish talking so I can share my thoughts. Sheila Heen discusses this in-depth on the Knowledge Project.
  6. Ask better questions.

Author David Sedaris recommends this in his masterclass. (I took the course, and then had the opportunity to meet him when he came to Sydney in January.) Candice Fox also mentions it in her Better Reading interview, describing herself as nosy. (She also describes how she came to interview a serial killer, so I feel like she’s someone with useful advice.)

Sedaris decided he’s no longer engaging in small talk, and instead starts conversations with questions like ‘Have you ever eaten horse?’ just to see where things go. I’m not willing (ie. not brave enough) to give up small talk entirely, and the introverted part of me would prefer to go through life never having to talk to strangers at all.

But then I realised it doesn’t have to be an all-or-nothing resolution. I decided to try asking two or three ‘better questions’ each week.

I asked the fruit store cashier about the strangest fruit they stock, and she got all excited telling me about lemonades,  a type of lemon that taste exactly like lemonade. (I’m going to follow this up in fall, when they’re in season.)

I asked a hairdresser about other jobs she’s worked, and she told me far more than I ever wanted to know about gum disease, thanks to her previous experience in dental office reception.

I asked a Pet-O cashier about people with strange pets, and she ended up telling me all about her bearded dragon, which she hand-feeds.

I’m excited to see what I’ll discover by asking questions this year, and also how the rest of my resolutions progress.

Wishing you all best for your 2020 goals!
xx

 

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. 

 

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.

 

 

So now you’re an author

When I was seven, my school published a story I’d written in a collection called Young Saskatchewan Writers. (My family lived in Moose Jaw, so I was Saskatchewanian.) It was a one-paragraph story about a wizard who turned some school kids into frogs.

Seeing my name in that book made me think I actually was a writer, or at least would be some day. I started a novel when I was fourteen, and another when I was eighteen. The first was speculative fiction about killer bees from Mars; the second was apocalyptic magical realism. (All I can say is, thank goodness self-publishing was not so widely accessible back then.)

There were a few years in my twenties when I didn’t write anything but journals, mostly because I was living in Peru and Mexico, and spending my time learning Spanish.

I returned to writing seriously in 2010. I applied for an arts grant, and somehow got it. Around that time, I read a book in which the author mentioned that it took 10 years for her project to go from idea to publication. I found this ridiculous. There was no way my book would take that long.

Almost exactly ten years later, my first book came out. I was 35. Author with stacks of books, My Name Is RevengeWhich is to say, this was a major life goal of mine that I worked very hard on for many years, and achieving it felt really good. And lots of great things have happened since my book came out.

Here I am at Sydney Writers’ Festival with essayists Fiona Wright and Luke Carman, whose new collections explore the impacts of chronic illness. It was a bit intimidating to get up on stage with such skilled, established authors. But it went well, I think. IMG_1463.JPGAfter the talk, all three of us went to the signing tables. I’d joked about how, because I was the panel moderator, no one would come to have my book signed – no one ever goes to see the moderator. And I was right! I sat there all alone while people lined up with Fiona and Luke’s books. It felt like a rite of passage.

Since my book has come out, I also had the pleasure of speaking to Claudine Tinellis, who hosts the podcast Talking Aussie Books about writing Revenge and tips for writers.

I made my first book club appearance, with this incredible group of Armenian women. This was delightful, not only because they had all read the book and we had a robust, three-hour discussion about Armenian identity, but also because it was like being with my aunts and cousins.  Armenian Book Club with copies of My Name Is RevengeAnd I was invited to appear at the NSW Dickens Society annual conference with the wonderful Walter Mason. This time, I signed some books!Literary conference panel from NSW Dickens Society
And I have more events coming up, in Sydney, Brisbane and Melbourne.

Chronic fatigue has made all this challenging. My events have gone well, but I usually go straight to bed after, sometimes feeling like my head’s being crushed in a vice. But I’m still grateful I get to do it. I know people with chronic illnesses who aren’t well enough to even attend events, let alone speak at them. And I know lots of writers who have been working on their manuscripts for many years, hoping to see them published.

What I’ve learned is you have no idea what’s going to happen: a random illness, a book publication that you didn’t even write as a book. Anything, apparently.

Hoping good things happen for you,
Ashley x

 

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
x

A new life of mud pits and stink water

I recently discovered Anna Altman, an American author with chronic migraines. Altman  perfectly highlights truths like this: ‘Our culture encourages us to think that, if we push ourselves hard enough, we can overcome whatever ails us.’

As she discovered when her migraines became debilitating, it’s simply not true. But we deeply want it to be true, which is why it’s such a pervasive idea. In an essay about living with chronic illness, Altman describes what felt like her ‘failure to bear up under average hardship’ when she could no longer work full time. Yes, I thought. Exactly.

After trying all kinds of doctors and treatments for years with little success, Altman says, ‘I ended up finding that giving in to my limitations and trying to find a meaningful, happy life within them helped a lot.’ Her mother counselled that in spite of what she had to give up, she could make a new life for herself.

Giving In To Limitations And Forging A New Life was definitely the theme of my recent trip to New Zealand. When I say ‘recent’ I mean two months ago, because this is yet one more way I’ve given into limitations.

Steve and I booked the flights early last year. I suppose we thought I might be significantly better after all those months. We were very optimistic, it turned out.

In the past, planning a trip to New Zealand would have involved researching all the best hiking trails, kayaking spots, and sunrise yoga on the beach. By November though, it was clear I wouldn’t be doing anything physical. We still refer to the mildest incline as my nemesis.

If I couldn’t hike or kayak or swim, if I had to give into those limitations, what could I fill that gap with? What could this new life as a chronically ill person still desperate to travel look like?

Te Ika-a-Maui, New Zealand’s North Island, had a perfect answer: HOT SPRINGS. Living within the limits of chronic illness, traveling to hot springs

This photo from The Lost Spring looks incredibly relaxing, but what isn’t pictured is the chainsaw and wood chipper blasting away on the other side of that wall. It was actually intolerable, since one of my least fun symptoms is noise sensitivity.

But that was okay, because New Zealand has dozens of hot springs, and I’d planned to visit as many of them as possible. Hot springs are definitely within my limitations, as you can see here at Hell’s Gate mud spa, which was blissfully chainsaw free.  Traveling with chronic illness, hot springs in new Zealand

New Zealand is full of options. When you’re done slathering yourself in mud at Hell’s Gate, you can soak in this even smellier sulphur pool. It was super weird and I loved it. Traveling with chronic illness, hot springs in New Zealand, sulpgur

At the right time of day, you can visit Hot Water Beach in Hahei and get your able-bodied husband to dig a sand pit that will fill up with geothermically heated water. It seeps out of the ground at 65 degrees Celsius, so dig the pit carefully to make sure some cool ocean water seeps in also.  Traveling with chronic illness, hot water beach in New Zealand

Or just visit a traditional New Zealand cat cafe, where you can spend an hour sitting quietly, drinking a cup of tea, and feeding kibble to 17 cats. Traveling with chronic illness, cat cafe in New Zealand

I was able to see and do a lot while mostly sitting down and relaxing, which meant I felt especially good in New Zealand. I was still disappointed to miss out on sights like Cathedral Cove in Hahei, which was only accessible via a rather vertical one-hour hike or an expensive boat journey that would have been exhausting for me. I stayed in the shade on the beach and Steve hiked up on his own. Traveling in New Zealand Cathedral Cove

All that resting meant I was able to see some of the flatter sights, however. This was especially exciting in Rotorua, one of the most fascinating places I’ve ever seen. It’s an active geothermal area, which means all sorts of weirdness goes on. This is a park in the city, where there is a variety of steaming lakes and bubbling mud pits. This steam blows right onto one of the major streets. Travelling with chronic illness to Rotorua, New Zealand

I wasn’t kidding about the mud pits.

To see these sights, I had to walk around. This meant planning carefully and rationing my energy. It worked out. The highlight was Wai-O-Tapu. The website describes this ‘Thermal Wonderland’ as ‘a spectacular showcase of New Zealand’s most colourful and unique geothermal elements sculpted by thousands of years of volcanic activity’ and it is not wrong.

This is Champagne Pool, named for its bubbly constitution. Traveling with chronic illness, Champagne Pool, NZ

And this is Devil’s Bath, which Atlas Obscura describes as a ‘neon green pool of stagnant stink water’ and compares to ‘a cartoonish radioactive dump site’.  traveling with chronic illness, Wait-O-Tapu New Zealand

Trust me, I loved every minute of this. Even the minutes where my symptoms flared in the heat and I struggled to breath after battling a mild incline.

I’m very lucky to have been able to travel to New Zealand at all. Many people with chronic fatigue syndrome and other chronic illnesses wouldn’t be able to. Still, part of me insists that if I push myself hard enough, I can overcome my illness. Every time I try, I make myself worse.

So, welcome to 2019: The Year Of Giving In To Limitations And Forging A New Life … Again.

PS. In New Zealand, shopping carts are called TRUNDLERS. Really. Made my day.