When I first met up with Monica Michelle via Zoom and asked how she was, she replied “A relative shape of a human.”
I recognised the feeling.
Monica hosts Explicitly Sick, one of the podcasts from the Invisible Not Broken network. She lives with Ehlers Danlos Type 3, fibromyalgia and POTS, and after having to give up a career in photography, she now interviews writers, creators and artists with chronic illness.
Ehlers Danlos syndrome is one of many conditions I hadn’t heard of before I struck by chronic illness myself and discovered a community of millions of people living with a wide range of conditions that prevent them from fully participating in their own lives. Ehlers Danlos is actually a group of related connective tissue disorders that result in pain and fatigue, among a complex variety of other issues.
She started her podcast in part to “help others be kinder and more gentle with each other.”
Even while she’s coping with physical pain, Monica is a delight to speak to. In this conversation, we discuss: – chronic fatigue syndrome and my experience with insidious onset – the impact of illness on personal relationships – marriage counselling – the challenge of asking for help – writing about illness – Fiona Wright’s The World Was Whole – what progress means when you’re sick – the secret to fighting project inertia in creative projects
If 2020 taught us anything, it’s that there’s no point making plans. I planned all kinds of things last year, including that I would be in Canada over this holiday season to finally visit my family after four years of CFS making the journey impossible.
Instead I’ve spent three damp and soggy holiday weeks in New South Wales, mostly squelching around my neighbourhood, much like I did all year.
I planned to increase my micro swims to tiny swims, and to jump in the pool without hesitation. I was doing great at this in January, but then in February my CFS got much worse, and I wasn’t able to swim. I kept trying to get back to it, but then covid closed the pools, and I got sicker.
Another resolution was to read more, which I’d assumed I’d be able to do as my health continued to improve. But it really didn’t. My CFS recovery tanked in February and March, and again in August and September, and I felt like I spent the rest of the year trying to recover from those months, just to get to where I’d been in January.
I also wanted to develop my listening skills and ask better questions, but between CFS shutting me down and covid shutting everything else down, I gave up on this. If anything, I’m less inclined to ask any questions when I go out these days.
There was one resolution I managed, however: to have a first draft of my new novel by 31 December. I’m happy to tell you I’m already into draft 2, and I’m very excited about it.
Also in 2020 I completed the Lost Hours Project. Every day, I recorded how much time I lost to illness, ie how much time I spent in bed during the day rather than up living my life. I was very optimistic at the start of the year, so I thought it would be an encouraging exercise. I thought the numbers would gradually improve.
I lost 1024 hours last year. If you assume 16-hour waking days, that’s 64 days – more than two months.
But I also realised that this project wasn’t working. I’d wanted to quantify the experience of illness, to find a metric to compare days and months. This isn’t it. In September I lost 89 hours to chronic fatigue and in October I lost 85. But those two months were wildly different experiences. In September (and August) I felt like I was drowning almost every waking minute. In October I was quite functional when I wasn’t in bed, and I was able to do cognitive work without fighting through an ocean of misery.
It turns out it’s not so much the lost hours that matter (though of course they do), but the quality of the hours that are not lost. And that’s much harder to quantify.
I know what you’re thinking – yeah, but look at December. You must be feeling a lot better! Not quite. I was just on holidays. My office closed for the holidays on 16 December, and when I can spend 15 hours a week relaxing instead of doing intense cognitive work, my symptoms become much milder.
So I decided not to continue the Lost Hours Project in 2021. I’m not convinced the data is very useful, and it’s a bit depressing.
Some good news: today I jumped in the pool without hesitation and did a micro swim. If I don’t end up collapsing for several hours in the next two days, I might even do that again.
Still, I refuse to make plans or goals this January. I’m sick of it. I’m going to write a new draft of this book as fast or slow as suits me on any given day.
Actually I do have one resolution I’m very keen on, and that is to use the word absquatulate as much as possible.
Say that out loud and tell me it isn’t the most fun you’ve ever had.
It means to leave abruptly, which is something that can be worked into most conversations, even if I have to do more than my share of absquatulating to ensure I can bring it up.
Art therapy is a creative form of counselling, as Karin describes. Her work focuses on military and emergency service personnel who live with PTSD as an after-effect of trauma incidents during their service.
In this episode, we discuss how Karin got into art therapy, why it can be so successful at treating trauma symptoms, and its potential for use in the management of chronic health issues.
Karin’s therapy program is part of The Road Home, an affiliate of The Hospital Research Foundation in South Australia, and part of the Australian Centre of Excellence for Post Traumatic Stress.
According to InDaily, “90 per cent of The Road Home’s art therapy participants report positive changes in their quality of life, relationships, general psychology, and overall symptoms related to PTSD.”
Since getting diagnosed with chronic fatigue syndrome in 2017, one of the most helpful things has been learning specific terms that describe aspects of the illness.
I think this is partly because the existence of a given term is proof I’m not imagining what I’m experiencing. It’s real, and other people have experienced it – so much so that there’s an established name for that experience. A few examples are orthostatic fatigue, temperature dysregulation, and alcohol intolerance.
Recently I learned a new term that describes an aspect of my experience of illness perfectly. Disturbingly, I learned it while reading not about CFS, but about covid-19.
Despite the impression my social media accounts might give, I’m still really struggling with the fatigue. In January, I started the Lost Hours Project to try to quantify how much the fatigue still affects me. I track each hour I lose to fatigue – in other words, any daytime hour that I’m too sick to function.
Keep in mind these don’t include time that I am functioning, but at a slower (more frustrating) speed than I would when I’m well. Often things take me twice as long as they normally would because of physical or cognitive fatigue, or both. But there’s no clear cut way to track this.
The 110 hours I lost in February are nearly 25 per cent of an average adult’s waking hours. In other words, I spent an entire week of that month in bed. (You might be thinking, gosh, I’d love a week in bed! Until you realise that I spent that week feeling like I’d been run over by a cement truck, and still had my usual work and personal commitments piling up.)
Chronic fatigue syndrome isn’t just feeling tired or run down. It’s exhaustion combined with a roulette wheel of symptoms including body aches and joint pain. I wouldn’t wish it on anyone.
Which is why I’ve been so unsettled reading about the covid-19 ‘long haulers’.
More and more articles are coming out about people suffering a long tail version of covid-19. They’ll feel fine for a few days, and then suddenly be too exhausted to work or function, with returned symptoms like shortness of breath and a hoarse throat. For others, the fatigue has settled in and not left.
“Before this, I was a fit, healthy 32-year-old,” a woman interviewed for the Atlantic said. “Now I’ve been reduced to not being able to stand up in the shower without feeling fatigued. I’ve tried going to the supermarket and I’m in bed for days afterwards. It’s like nothing I’ve ever experienced before.”
Ugh, I know how this woman feels. I’ve been there.
“This virus has ruined my life,” she continued. “Even reading a book is challenging and exhausting. What small joys other people are experiencing in lockdown—yoga, bread baking—are beyond the realms of possibility for me.”
An article from SBS describes a man in New York who will feel fine for a few days, then suddenly become overwhelmingly tired and short of breath.
I wasn’t surprised when the article quoted his physician saying the man’s “ongoing fatigue is similar to what has been documented in other illnesses that cause chronic fatigue syndrome.”
“Scientists aren’t quite sure why this happens, but … it might relate to an injury to a part of our cells called mitochondria, which are responsible for generating energy.”
The physician “emphasised it was important for people experiencing these ongoing symptoms not to succumb to ‘medical gaslighting‘ where other people or the patients themselves attribute the illness to anxiety.”
“This is not in people’s heads. This is what people live every day.”
From extensive experience, it’s very difficult not to medically gaslight yourself. It’s useful to have a term for this, since I still tend to have this sort of thought distortion. I don’t necessarily attribute the illness to anxiety, but I often tend to deny how sick I actually am. Particularly if I have a few good days in a row, I start to think I can’t possibly be as sick as I’ve made out. I must be exaggerating.
But I’m not. And the covid-19 long haulers aren’t, even if they’re trying to convince themself that it must be anxiety, or even their imagination – because that would be far less frightening that the reality of having chronic fatigue.
The Atlantic reports that thousands of people are now experiencing long tail covid-19, with early surveys estimating that 60 per cent of them are aged 30 to 49.
Take care, stay safe! And if you’re sick, try not to gaslight yourself.
James and Ashley are staying at home. Partly because there’s a pandemic, partly because they’re writers, and partly because of their health. Through discussions and interviews with other writers and creatives, they’ll explore how staying at home has its benefits.James and Ashley Stay at Home is a joint venture with my wonderful co-host, James McKenzie Watson, winner of the 2021 Penguin Literary Prize. Learn more about James and the podcast below, or find the first seven episodes here.
We’ll be discussing the challenges of our efforts to write brilliant manuscripts while coping with chronic health issues, and also interviewing other writers and creatives who’ve faced similar challenges.
This is what the player for the first episode would look like, if I could embed each episode.
Instead, you can listen to episode 1 here. It introduces our major themes, writing, creativity and health. We speak about both topics through our personal experience: in addition to my chronic fatigue syndrome, James was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) in 2016. Like me, he also suffers from serious fatigue, among a myriad of other symptoms.
James is a very talented writer of short and novel-length fiction. He’s been recognised in competitions including the International InkTears Flash Fiction Contest, the Newcastle Short Story Award and the Grieve Writing Competition, and featured in publications such as Baby Teeth Journal and Brave Voices Magazine. In 2017 he was shortlisted in the Kingdom of Ironfest prize for his novel Denizen. He works as a nurse in regional NSW. Find him on Twitter or visit his website.
James is a member of my Writing NSW writers’ group, pictured here at the 2019 launch of My Name Is Revenge: Jonathon Shannon, James, me, Simon Veksner, Amanda Ortlepp and Andrea Tomaz.Episode 2 is a special episode, which features me reading the first chapter of my new memoir, How to Be Australian.
In episode 3, we launch into our interviews with Australian authors starting with Lee Kofman, author of Imperfect.
In episode 4, James grills me about writing my new memoir, How to Be Australian. (It turns out the secret to getting asked all the questions you really want to answer is to be a guest on your own podcast.)
Episode 5 features debut author Anna Downes discussing her international hit The Safe Place, as well as her experiences with postpartum anxiety.
In episode 6, James and I share the stories of how we came to be writers and share some of our favourite writing tips.
Episode 7 features British-Japanese author Katherine Tamiko Arguile discussing her debut novel The Things She Owned and the health crises that drove her to pursue a writing career.
In episode 8, we interview author Kate Leaver about her new book, Good Dog, and learn about just how excellent dogs are for our wellbeing.
Episode 9 features art therapist Karin Foxwell discussing the profoundly therapeutic power of art, as she’s observed in her work with military and emergency services personnel who’ve sustained PTSD in the course of their service
Episode 10 gets personal: James and I explain our health conditions, discuss how these affect day to day life, and explore how illness has impacted our senses of self.
In episode 11, we discuss anxiety with comedian Anthony Jeannot.
Episode 12 features bestselling author Petronella McGovern discussing her new novel, The Good Teacher, and the allures and dangers of fringe healthcare.
In episode 13, we chat with the legend herself, author Kate Mildenhall, about the craft of novel writing, the challenges of penning a second book, and the creative anxieties that plague writers.
Episode 14 features Elizabeth Tan, author of Smart Ovens for Lonely People, discussing the public health crisis of loneliness, the personal experiences that inspired some of these stories, and an unusual but highly effective writing prompt.
In episode 15, James and Ashley share their motivations for writing, writing tips, and more.
Episode 16 features Ada Palmer, historian, composer and author, and how she’s managed to achieve so much while managing a number of invisible illnesses.
Episode 17, the last episode of 2020, highlights some of the best writing tips from the year, and is a great resource for any writer.
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.
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.
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.
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. For Reals 2020 Resolutions & Goals
Have a first draft of the new novel by December 31.
I’m 40,000 words into a zero draft.
Gradually increase my micro swims to tiny swims. #chronicillnessrecovery
Jump in the pool without hesitation.
This will save me upwards of 15 minutes each time I swim. (And I’m already nailing this.)
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.
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.
I started last year with a pack of lies.
I told you that, because of my chronic fatigue, I wasn’t going to set any genuine new year’s resolutions. Instead, I made a list of absurd resolutions that I intended to fail at –climbing Mt Everest in a Pikachu onesie, catching a serial killer, and growing a third arm.
That last part was true – I didn’t achieve any of those resolutions. I don’t even own a Pikachu onesie.
The insincere part was that, after the first few weeks of having no ‘real’ resolutions, my poor goal-oriented brain got desperate. It loves setting challenges and tracking progress, hence why I can break down my annual reading stats, why I have a list of every book I’ve read in the past 19 years, and why I can show you exactly how many steps I’ve walked since 2018. Tracking my steps is part of my chronic fatigue recovery process; graphing them is not. (But it helps!)
So in mid-January, I quietly skulked off and made a secret three-point plan for the year. It looked like this:
Write the first draft of a new novel, 70-80,000 words
Over the year, I steadily chipped away at all three goals as my fatigue allowed. Some months I could barely do anything, and I let myself be okay with that because I had told everyone that I was planning to fail at my resolutions.
But when I was well enough, I tried to make the most of my energy and work only on those goals. The first two went really well. (And boy do I have the spreadsheets to prove it!)
I made it 50% of the way through goal number 3, meaning I have 40,000 words of a new novel draft. They are 40,000 terrible words, but the machinations of a plot are tangled up inside them.
Normally I’d be disappointed that I didn’t complete all three goals. In fact, I was on track to complete goal number 3 by the end of the year, but something interrupted me. And for once, it wasn’t illness.
But for that news, and the 2020 resolutions that go with it, you’re going to have to wait.