Pacing & Chronic Illness | What I've Learnt

This piece is part of a series of paid commissioned opinion and personal essay pieces by Disabled writers. Disabled people are constantly asked to work for free, to give their opinion for free and to educate people for free, and so I have created this space to not only give Disabled writers the opportunity to write and speak, but to gain income as well. You can expect to hear from a variety of Disabled, Deaf and hard of hearing people, Neurodivergent people and those living with chronic and mental illness. This is entirely fundraised for. 

Pacing & Chronic Illness | What I've Learnt

by Natasha Lipman

Like many people living with chronic illness, I have a bit of a complex relationship with pacing.

Having been told to "do it" for most of my life, but never taught what "it" actually was, I spent many years believing that pacing was:

  • Do a thing
  • Crash
  • Recover
  • Do another thing
  • Repeat
Turns out, that's a pretty normal experience for people living with long-term health issues. It even has a name: booming and busting. 

It makes sense, really. When you feel terrible, it can seem impossible to do anything except the bare minimum (and sometimes not even that). But, when you start to feel more able to do things, you really want to DO THINGS, and take advantage as much as possible.

The problem is, we often tend to overdo it, and end up back in bed, waiting out yet another flare up.

Over the years, I got intrinsically better at pacing the "big things". I knew that if I had to go out, I'd have to plan around it - blocking out time before and after to prepare and recover. I cut out a lot of things from my life to try and save as much energy as possible. And, whilst this did help. It also... didn't? Because I was still living a very boom and bust life - I just didn't realise that's what I was doing.

So, on Boxing Day 2019, I made an appointment with Jo Southall, an Occupational Therapist who also lives with chronic illnesses, for her Pacing Masterclass workshop. 

Over the space of an hour, she completely blew my mind and changed my perspective about what pacing is and how to incorporate it into my life. It felt, for want of a better word, empowering?

Jo describes pacing as "the art of breaking your life into small, manageable micro-tasks... taking short regular breaks to avoid symptoms, as opposed to one very long break to recover from them".

The three biggest takeaways for me were that:
  • Pacing doesn't have to be blocks of activity followed by blocks of full cognitive rest. This is something that I always struggled to do - and was pretty much the extent to which pacing had been explained to me in the past. So when she said this, I sighed an existential sigh of relief. I think about different energy "buckets" - physical energy, mental energy, and restful energy. I can switch between them.
  • Pacing shouldn't be a thing that makes us feel as though we're able to do less, having to restrict our lives. Of course it can be a real challenge, but the aim of it is to enable us to do more things in a more sustainable way over time.
  • Pacing needs to be proactive not reactive. That it's better to take a short break before you need to, not after you already start to feel totally rubbish and need to take a substantially longer break to recover.

You can read in-depth posts about pacing on my blog review of Jo's pacing masterclass, as well as a Q&A we did answering common questions about pacing for chronic illness.

I took some time to think and reflect afterwards, and started slowly experimenting with new ways of managing my energy throughout the day. If I'm being honest, in many ways the pandemic helped - taking away many of the big-energy expenditures in my life, and for the first time ever removing my not-going-out-FOMO.

And things were going fantastically! My life felt more stable and sustainable. There weren't such extreme highs and lows.

I found that I had to be quite strict with myself, because of my natural boom/bust tendencies - and if I'm being honest, there were often times where I used pacing to facilitate this. But I was excited and motivated to continue learning how to "optimise" as well as I could. 

But, as with everything, sometimes our health has other plans. It's easy to pace when you feel up to it. It's easy to feel more in control when you're coping better. Whenever my health would flare, or stress would get on top of me, pacing was always the first thing that went out the window.

I didn't have the mental or physical energy to think about looking after myself, so I reverted back to some of my old habits. Partially out of exhaustion, partially because we don't always have the level of control over our lives that we would like.

As I write this I'm in the middle of the worst flare-up I've had in a while. There are many reasons for this - health issues exacerbated due to the pandemic, a huge amount of stressful things in my life, and now opioid withdrawal - it's very hard to want to do anything other than fester in bed.

And because of that, I've been reflecting on my relationship with pacing.

Because, as much of an impact pacing has had on my life, and we can talk about the positives, it's important to remember that pacing is not the cure for chronic illness. Pacing doesn't stop life from happening.

What pacing can do is help us to handle the ups and downs of our lives in a better way.

There are some things I know I will always find hard to pace, writing is one of them.

But, I'm learning that pacing doesn't always need to look like my totally planned colour coded calendar, with rest alarms plugged into my phone.

I've tried so many things that I know help me, and there are smaller versions of these things that I can implement even on my most challenging days. It's not big, or fancy, or deserving of an Instagram post. But it's a tiny thing I know helps me cope when times are tough.

So, as I wait for my body to readjust to being without opioids for the first time in 5 years, I'm going back to basics. With just one tiny step at at time. 

Natasha Lipman is a journalist, chronic illness blogger, and host of the Rest Room podcast. You can find her on social media @natashalipman and at natashalipman.com

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