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

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

House arrest: Year 3

Having chronic fatigue is like being under house arrest. The more I stay home, the better I feel. It’s whenever I try to go out and live my life (doing wild and crazy things like attending a one-hour book launch) that my symptoms ramp up.

It’s been more than two years since I started getting sick, and a year since the Fatigue Centre doctors advised me to start tracking my daily step count. The concept sounded simple. I’m supposed to figure out how many steps I can do in a day without causing myself to crash (ie. feel too weak to get out of bed/think coherently). Then I’m supposed to do approximately that many steps every day for two to three weeks. If I don’t crash, I’m supposed to raise the figure by 20% and see if I can maintain the new threshold without crashing.

Yes, there’s maths involved in recovery. That’s how dire things are.

Managing my daily step count (along with timing my cognitive tasks, monitoring my symptoms, taking regular breaks, recording all this minutia, etc) takes a surprising amount of effort. Lately, I’ve been finding it difficult to make the effort.

So, instead of going out and getting more steps today like I should be, I decided to chart my daily step record.
Chronic Fatigue Syndrome, step count

On the positive side, you can notice a gradual upward trend. But overall, these results aren’t encouraging.

Notice how at the start of the year, the fluctuations in my step count were minimal? That’s how the entire year should look. Tight and compact, like an inchworm. Not Mt Everest meets the Mariana Trench. (All that walking in Melbourne was worth it though; I stumbled on some real treasures).

I didn’t include the y-axis figures because I know there’s other people out there struggling even more than I am, and I didn’t want to evoke unnecessary comparisons. This chart lets me compare Chronic Fatigue Ashley to Pre-Illness Ashley. A few years ago, I used a step counter for several months – you know, back when I did stuff like that for general fitness. The chart’s red line is my pre-illness daily average.

I guess what I’m saying is – I’m still pretty sick. There are so many events I missed this year, so many times I cancelled on friends because I felt so unwell I could barely move. And it looks like 2019 isn’t going to start off much better.

It’s not all bad though. My novella has received some excellent endorsements, and just this week received a stellar review from Karen Chisholm on Newtown Review of Books. Good news like this will help me get through another long year of house arrest.