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
Yumiko Kadota was a junior doctor and working hard towards her goal of becoming a plastic surgeon in NSW. But the demands of her workplace became increasingly extreme, and she found herself dealing with bullying, sexism and racism, as well as unreasonable hours. If anyone should know how important sleep is for the body, it should be health care professionals (and the people who manage their rosters). Right?
Instead of sleeping, Yumiko was working longer and longer hours, and was constantly on call. Her health started to deteriorate.
By the time she left her job, she was so unwell that she ended up back in hospital – as a patient.
She recounts her journey from ambitious student to junior doctor to patient suffering burnout and depression in her new memoir, Emotional Female.
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, they’ll try to build fellowship and entertain, or at the very least, explore how staying at home has its benefits.James and Ashley Stay at Home is a new podcast, a joint venture with my wonderful co-host, James McKenzie Watson. 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 who have done the same.
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 the podcast and our major themes, writing 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.
Conversations with Friends showed up as a surprise in the post. A friend sent it to me.
Sally Rooney has won multiple literary awards. I’d read her second book, Normal People, earlier in the year, when everyone was talking about it. And while I recognised the writing as brilliant (and so crisp and well wrought, Rooney doesn’t even bother with quotation marks), I didn’t enjoy the book. I don’t enjoy stories about relationships, about love and affairs and divorce and grief. My favourite books generally have at least one murder in them, and no-one gets murdered in Conversations with Friends. Not to spoil it too much, but no-one even contemplates hiring an assassin.
The whole time I was reading it, I wondered what had made my friend choose this book, from the millions of books out there. Even though this book was very much not my kind of book, at the same time it was so well-written it was hard not to find things to appreciate on every page, turns of phrase and insights into the human condition. The main character has embarked on a writing career, and later on is diagnosed with a chronic illness. Many of Rooney’s observations rang true for me. I’ve listed some of my favourites here.
“I had started reading long interviews with famous writers and noticing how unlike them I was.” (Does every aspiring writer do this?)
“I feel like shit lately, she said … You think you’re the kind of person who can deal with something and then it happens and you realise you can’t.”
“Everyone’s always going through something, aren’t they? That’s life, basically. It’s just more and more things to go through.” (This seems especially true this year.)
“After that I put some cold water on my face and dried it, the same face I have always had, the one I would have until I died.”
“I wanted things for myself because I thought they existed.”
“I felt as if I’d glimpsed the possibility of an alternative life, the possibility of accumulating income just by writing and talking and taking an interest in things. By the time my story was accepted for publication, I even felt like I’d entered that world myself, like I’d folded my old life up behind me and put it away. I was ashamed at the idea that Bobbi might come into the sandwich shop and see for herself how deluded I had been.”
“I had the sense that something in my life had ended, my image of myself as a whole or normal person maybe. I realized my life would be full of mundane physical suffering, and that there was nothing special about it. Suffering wouldn’t make me special, and pretending not to suffer wouldn’t make me special. Talking about it, or even writing about it, would not transform the suffering into something useful. Nothing would.”
“Gradually the waiting began to feel less like waiting and more like simply what life was: the distracting tasks undertaken while the thing you are waiting for continues not to happen.”
Those last two quotes seem to sit inside me. Nothing makes my suffering useful, and often my life feels like filling time until I get well. I talk all the time about the things I will do when I’m well – running and hiking and dancing, working a normal eight-hour day. Sometimes I see people out for a run and I become so sad and resentful.
I hope the things you are waiting for happen for you. And in the meantime, I hope your friends post you books.
As you know, giant sea monsters have attacked our cities. While it’s not clear how many people they’re eating, it is clear that the safest thing to do is stay inside. While you’re inside for the foreseeable future, you might as well listen to some high quality podcasts.
Lately I’ve been trying lots of new podcasts, and finding it harder and harder to get hooked into something. So you know if I’m recommending these, they must be excellent – assuming, of course, that you share my preference for true crime, comedy, and the bizarre.
Women & Crime
My latest favourite, this ongoing series hosted by the criminologists behind Direct Appeal (which I shared in my previous podcast round up). Each episode is a standalone story focussed on women “who have been victims of crime, those who have committed crimes, and those who are involved in the criminal justice system through their work.” One episode traces the story of Juliet Hulme and Pauline Parker, two teenages from New Zealand who committed a murder; one of the killers went on to become the bestselling crime novelist Anne Perry.
Free to a Good Home
There are so many great podcasts that offer incredible learning opportunities. Unfortunately a lot of the time, my brain isn’t well enough to learn, either because of my chronic fatigue (poor concentration is one of my cognitive symptoms) or, more recently, because of the world falling apart. So instead I listen to sheer nonsense. High quality nonsense can be calming, and there’s no higher quality nonsense than Free to a Good Home. Sydney comedians Ben Jenkins and Michael Hing, along with a revolving door of guests, read bizarre classified ads and speculate about the circumstances that led to their posting. A sample of one of my favourite ads: “Get paid to kick a guy in the balls!” Like I said, the best kind of nonsense.
How Did This Get Made?
American actors Paul Scheer, Jason Mantzoukas and June Diane Raphael discuss some of the worst movies ever made, from so-bad-they’re-good movies, like Space Jam and Chopping Mall, to the purely unwatchable. You don’t need to know the movies, though watching the trailer enriches the listening experience. Once again, this is pure meaningless nonsense, which means I can put it on, relax, tune out, and fall asleep. I particularly enjoy the show’s sense of ritual, from the way the live shows open, to the reading of five-star Amazon reviews for each film at the end.
More nonsense: a Dungeons & Dragon comedy podcast. I have no interest in D&D, and heard about this podcast and the Sydney-based live show for years without trying it. But after I listened to all 108 episodes of Free to a Good Home, I thought, ‘You know what would make my life better? More Ben Jenkins and Michael Hing.’ Who happen to be on the cast of Dragon Friends. The story is continuous from season one, with the first and fifth seasons being my favourites. In an alternate reality, where I’m healthy and able to apply my brain more productively, I’m not sure I would have ever listened to this. But as a distraction from the current reality, it’s perfect.
This Is Actually Happening
While the episodes can be hit and miss, the concept and format of this show is fascinating. With no introduction or commentary from a host, the anonymous guest of each episode describes a personal experience, such as surviving a murder attempt, or having a friend die on a hiking trip, or having a mental breakdown.
This six-part series traces the investigation of organised child abuse on the dark web, and how law enforcement agencies from around the world are meeting the challenges of tracking criminals without borders.
The Knowledge Project
When I am well enough to learn, absorb and reflect on new ideas, I enjoy the Knowledge’s Projects longform interviews with experts in a variety of areas of human knowledge. “Through conversations, we are able to learn from others, reflect on ourselves, and better navigate a conscious life.”
This miniseries centres on the lone female detective on Anaheim’s homicide squad, Julia Trapp, and one of her biggest cases: “When a young woman’s body is found at a trash-sorting plant, Trapp learns the murder may be linked to the disappearance of three other women in nearby Santa Ana.” Trapp is well-deserving of this in-depth profile of her life and work.
And if you miss me, you can always listen to this recent episode of The Bookshelf, in which I chat about American author Kiley Ried’s new novel Such a Fun Age.
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.