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.

 

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

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