Self-care


No, not the Instagram “self-care” of floofy slippers and a glass of wine, or an excuse to indulge in chocolate. No, I’m talking about the gritty self-care that all of us humans need to do, only some of us need to it more regularly or we’ll experience Consequences.

Self-care for people living with pain is no luxury, and it does (occasionally) mean walking away from something enjoyable, setting boundaries on demands for time and energy, AND it means many other things too.

I’ll talk about my own self-care needs because I can’t talk authentically about anyone else. Most of you will know I live with fibromyalgia, and that I’m pretty happy with my lifestyle and dealing with pain. Mostly it’s just a nuisance that I live alongside, and make room for. Sometimes it’s a PITA, and over the last year it’s been more of that and less of the “just a nuisance”.

My fibromyalgia involves widespread body pain (currently neck/shoulder but randomly goes to other places – maybe for a holiday? Who would know!). I also experience fatigue. In fact, the pain is nothing to bother me because I know it’s not a sign I’ve harmed myself – it’s the fatigue that is a killer. Probably the most difficult thing to deal with.

So when I went to a conference, and had a few late nights it didn’t surprise me to feel exhausted. I’m lucky in that I can take a couple of days off for some downtime, and I slept and now I’m pretty much back to normal. Except that it’s a short week with Easter coming up, and I have a whole day out because of a procedure – and I’m teaching Thursday night while also having some other deadlines coming up.

Lurching from frantically catching up to crashing is called “boom and bust” in our persistent pain language. According to conventional pain management wisdom (based on books like Manage Your Pain by Prof Michael Nicholas) pacing is The Way to Go. And there’s some merit in the idea of being consistent in what to expect from yourself, building up from a baseline to what works for you in your life context, to reduce the number of times you have to apologise for not being able to do something because you’ve either flared or you’re fatigued.

The problem with pacing is that we still have little agreement on what we mean by the word (is it gradually increasing activity levels? is it stopping before we flare up? is it planning each moment of the day, breaking each task into 10 – 20 minutes with a break in between? is it about using time instead of pain/fatigue as the guide for what you do?). There’s even less evidence to support pacing as a strategy – few randomised trials of pacing and studies have shown associations between pacing and avoidance. Yet it remains one of the more popular and widely-endorsed strategies for living well with persistent pain.

Coming back to self-care, one of the issues for me is to understand how I get into the situation where my fatigue and pain begins to interfere with my plans. Is it my planning that’s awry? Should I say no more often? Should I ask for help more often? Am I bad for pushing myself? Am I over-reaching myself, spreading myself too thin?

And even as I ask these questions of myself, I feel my mind judging me. After all, I should know better! I’ve been living with pain most of my life. I teach people about pain. I’ve worked clinically. Seriously I ought not to do this to myself. I should be perfect!!

Well, as anyone who knows me is perfectly aware: I am not perfect. And I mess up. I did last week when I completely forgot an appointment with someone because my mind was fried.

Here’s the thing though. This amount of self-analysis, of questioning, of planning, of organising around something that I never asked for, is what anyone with persistent pain goes through. And the often-glib “go exercise” or “just pace” or “let’s ignore pain and pretend it’s not a thing” often fails to touch the constant demands that living with a chronic/ongoing health problem poses. The negative and critical mind is prone to sniping at the “who” I am, while onlookers, clinicians in particular, might not even be aware of just how brutal and energy-sapping this process is. Every. Single. Day.

I do not have a glib answer to how best to live well with pain, and as you can tell I’m still learning even 35 years down the track! I do know I’m determined, and that drawing on values and being flexible about how I do what matters in my life has meant I’ve stayed working (even in a demanding job), kept on playing (creative pursuits are like oil on dry skin), learned to keep my eyes on the prize and not sweat the small stuff…

This post is a plea to health professionals working with people who are in the early stages of living with persisting pain: don’t add things to a person’s life without thinking about the constant juggle the person will need to do often for the rest of their life. Don’t make up another list of exercises, or make suggestions about another technique to add in to their already busy daily life without asking yourself “Could I do this every day? In the presence of ongoing pain?” Ask yourself, too, whether you’re implying that this person is “doing it wrong.” Think hard about all the things each person needs and wants to do in their life – if you’re going to suggest adding yet another thing into their day, consider what this person might need to abandon to fit it in, think about when and where and how this person can do what you’re suggesting.

When we’re clinicians, we can be prone to suggesting that people with pain “aren’t motivated.” I reject this – motivation isn’t a trait, or a quantity we’re given or not given. Motivation is about importance, and confidence. And for so many people with pain, confidence is very very low. Saying no to things requires confidence. And sometimes saying no is the hardest thing.

Self-care. It’s a life-long commitment to being vigilant about the choices I make every day, because the consequences of not caring for myself can be tough to swallow. And yet it’s also OK to mess up and to be with that flare or fatigue, and remember what matters in life.

7 comments

  1. Love this post Bonnie. It resonates greatly! Pacing has been another very challenging element of living with persistent neck pain for me. And I’m slowly learning how to set boundaries. May I share to my Facebook page? 🙂

    1. Absolutely Emma! Pacing is something I think we need to hold lightly. Sometimes it’s a good thing, and other times it’s not. And it’s OK to have days where you just feel like throwing all your toys out of the cot!

  2. Well said, Bronnie and lots to think about. After having advised many clients about pacing, their wise feedback to me teaches me that Life Is Messy and and rarely fits neatly into 20 minute blocks. Not that I don’t think we could all do with a dose of applying pacing to our (mostly) hectic lives, to slow it down a bit and think about what is most important to us at any one time. And that its a work in progress.

  3. I love this post, thank you. I also live with persistent pain and was pretty content with my capacity and resources to live well with it, then last March I contracted Covid…. Everything changed, my relationship with pain changed, my experience and understanding of fatigue and pacing drastically changed. This has been a blessing and curse, a blessing in that me as an OT will never assume that pacing is a an easy strategy to simply apply to one’s living!! Oh no!!! The curse because in my experience of Covid it sent my nervous system into haywire and I’m still figuring out ways of finding balance again….

  4. Love this Bronnie, it’s no different with living a weight loss journey. Being tired, leads to all the unhelpful behaviours I’ve been trying to tame. (You weren’t the only one fried after that conference!) I certainly keep this idea of what are we loading on our clients very much at the front of my work now. You can see them sigh with relief when they realise there’s not more for the to do list.

  5. thank you
    as a physio who also lives with fibromyalgia who teaches about pain there is so much we dont know.
    It is only through hearing lived experiences, raising and rising awareness and learning the very human responses to often difficult and undefined experiences that we can make sense of what is happening, in the gaps of knowledge.
    thank you for sharing

  6. Love this post, Bronnie! Thank you for sharing your lived experience. As an OT who has lived with Fibromyalgia and ME/CFS for many years, I can relate to much of what you shared! It has often been difficult (and still is!) for me to implement pacing, self care, exercise and all the other things I know help me – and sometimes you can do all the right things and still get a flare!

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