a cunning plan

I sleep and lie about. Some days I get dressed. I’m sore and exhausted. My brain works intermittently at best. I worry about doing too much so I do nothing. Then, I do too much. I really am not good at this pacing thing. There are events to plan, meetings to go to, a new network to embrace. All the fun things.

For the last few years there has been a fair bit of talk in the ME world about heart rate monitoring. Some people benefit greatly from attempting to keep their heart rate below a certain level- stopping the boom before it happens, thereby preventing the bust.

That’s always seemed complicated, and a little beyond my comprehension. But recently I’ve begun to wonder. Sally, a local ME blogger and activist, is a natural teacher. She explains things in a way that make sense to those of us with cognitive issues. And she’s been monitoring her heart rate for some time.

At Christmas time, Spurs Fan came into a Fitbit, a wee strappy gadget for his wrist that monitors steps, sleep and much more. He loves it. It’s easy to use. It’s unobtrusive and convenient.

I don’t need all that technology.

I pondered, read Sally’s heart rate post again, and searched for heart rate monitors. They’re mostly expensive, ugly things. (Other opinions are available.) Really, I just wanted something like the Fitbit, but with a heart rate display. And, lo! Such a thing exists. It’s designed for active people, and gym use, but it displays heart rate and sends all the info to the phone for review. Of course, it also does steps, calories, sleep and other things I may never use. I’m hoping I can learn to up my physical activity safely, and to cease and desist in a timely manner. The device is hardly lovely, but was cheaper and less bulky than alternatives. (I could have paid a lot extra for a different colour.)

admittedly, not stylish
admittedly, not stylish
My numbers
Maximum heart rate: 220-50= 170
Safe limit for ME people, 60% of max: 170 x 0.6= 102


The fancy tech is charging now. Soon I will be knowledgeable and able to discuss numbers with the best of you. I’m going to do it properly this time.

Until I don’t.


me, at an academic conference

I’ve been to a conference, feeling worthy, at the local university, on epatients, blogging and social media. It was about story telling and connection and sharing and learning and power imbalances. I spent days with amazing people, a peer amongst academics, and still got to sleep in my own bed and hug my little people.


I’d always intended to attend the event, but I was thrown by being asked to speak a week before. (I’d written a proposal months ago, and not considered it at all when it wasn’t accepted then.) Cue panic of research, sleep, more research, writing, sleep. I produced something and stopped writing when I got bored. I used some of my own story; I would use more the next time.

I often tell people about how all the stories matter, but appear to be reluctant to keep talking about my own. Do I think that ‘me as patient’ is too mundane to have any impact? Do I think ‘me as carer’ is out of date and the lessons have all been learnt? Oliver Burkeman’s article Why don’t we take our own advice? resonated with me. I’d encouraged one of the other speakers to apply, to tell her story, to share her experience, and yet I was freaking out when I had the chance to do so myself.

Marie on the power of stories in health, at a different event

Sally’s story from Saturday

My head is still buzzing. I have much to learn and relearn. I have ordered many books referenced at the conference. Fingers crossed my brain has the energy to read them.

How can we use stories to improve the system?

Work in progress…

not without my father


Our bloggy buddy Andra Watkins did something remarkable to promote her first book, and in the process she challenged her relationship with Roy, her dad. Not Without My Father is a result.

Andra walked the length of the Natchez Trace, as had her characters in ‘To Live Forever: An Afterlife Journey of Meriwether Lewis‘. She did the walking, took the pictures, wrote the blog posts, made the videos, dealt with painful feet and painful truths. Roy did the talking, selling of the books, and the farting. Not Without My Father tells their tales, wonderfully. There’s even a soundtrack- Elvis, Johnny Cash, Everything but the Girl, The Bangles… All the senses are engaged by this memoir. I loved it.

Both my parents are dead; this book made me pause many times to think of them, to reflect on differences, to miss them. I miss being annoyed by them, I miss the anxiety they cause. I miss just being able to hug them, and stop time.

This is not a sweetness and light memoir. Roy is maddening. Andra is suffering physically and wondering what in god’s name she’s doing, and why. (It’s so frustrating when the only person you can blame for a goofy idea is yourself.)

The story is told by Andra, and by her versions of Roy’s stories. She tells us about Roy beautifully, with love and empathy and understanding, all the while being mad at him. Because that’s what families do.

There are many characters in the memoir, supporting, selling, watching from a distance, travelling to be with her. Andra discovers unexpected community, as well as the complexities, difficulties and delights of the Trace itself.

As a journey of discovery along the Trace, looking for a father and finding adventure, ‘Not Without My Father’ is a companion piece to ‘To Live Forever’, but can be enjoyed without having read the novel in advance. But you’ll want to read the novel next…


I read an Advance Reading Copy of Not Without My Father.; I’ve also bought a kindle version, because this book is worthy of rereading. I’ve commented on To Live Forever & Andra’s journey here. Andra is the real deal. Don’t miss out.