My Journey with Pacing

Pacing is such a vast topic within the context of chronic illness and something many people, myself included, can struggle with trying to figure out alone for a long time. I’ve wanted to cover it for a while as I’ve experienced first-hand the difference that can be made when it is properly explained and put into practice in clear, well defined ways. I think I finally figured out how to approach it over the last couple of weeks as I broke it down to cover over on Instagram, but also wanted to put together a long-form version here and include a bit more detail about my personal experience with it.

Photo by Emma Matthews Digital Content Production on Unsplash

I was told from quite a young age that I needed to pace myself but more often than not this tended to be framed within the context of not pushing myself too hard with exercises, being stubborn about using my wheelchair when walking became too painful and ultimately not trying to “run before I could walk”. For a very long time my idea of pacing was to counteract a busy/painful/tiring day with an easy, resting one – precisely the wrong thing! It took until I was in my late teens or early twenties before the concept of a ‘boom and bust’ cycle became part of the pacing vocabulary, and although the idea was talked about theoretically that doing too much led to me doing too little, all that really amounted to was trying to make sure I didn’t fall into the trap of doing absolutely nothing on recovery days. Ideas such as baselines were still not in the picture and I was still clueless about pacing my actual activities. 

In all I probably spent about fifteen years trying to figure out pacing on my own: no small ask!  When I went to the information day for my pain management programme, they talked through lots of the ideas and techniques they would be teaching us, if we were interested in joining up. I distinctly remember they had just been talking about pacing when two women sat next me started saying to each other “I’ve already tried all of this stuff, I can’t see what they can tell me I haven’t already done”. Interesting, I thought. My take was that, yes I had tried pacing, but maybe there was a different way of doing it that I hadn’t yet come across, which they might be able to share. It was one of the deciding moments in putting myself forward for the programme, because I ultimately thought there was no way I could pass up the chance to see if there were methods that might be new to me.

The programme began with looking again at that boom and bust cycle of over- and under-activity, and some of the traps it is easy to fall into. One of the most common things they hear of course being that when people have what they feel to be a ‘good’ day, they try to maximise the opportunity being presented to catch up on housework, exercise, shopping, hobbies, seeing friends … basically doing all the things.

Before jumping straight into what changes we could make and how, we took a step back and looked at what we were already doing – something I found immensely useful. I’ve included here a link to the Activity Sheet I used to assess what my daily routines actually looked like: you can write the activities into the timeframes or, as I preferred, colour code it.

I’m not usually a particularly visual learner but given how much I was experiencing brain fog at the time and struggling to process information due to my chronic fatigue peaking, I found being able to quickly glance over colours and know what level of intensity an activity felt like, rather than what it specifically was, an enormous help. Different activities will feel like a different intensity for different people, of course. Personally, at that time something like having a shower or helping prep a meal was high level, mid level would be doing my pain management stretches and low level would have been having breakfast or brushing my teeth. Resting I took to include watching tv and reading because I was mostly interested in pacing my physical activities, not necessarily those that took it out of me mentally. I also noted my sleep. Over two or three weeks I noticed that I was not letting my body gradually acclimatise to activities: my day would often move from sleep to, say, breakfast and then straight into showering, which was too intense a leap. I started adding my pmp exercises in between breakfast and showering and although the whole process from waking to being showered took a bit longer time-wise, I was achieving what I wanted and needed to each morning and with less of a pain spike afterwards. As my body adjusted to the new routine, the time it took slowly decreased and the physical knock-on effects lessened. Undoubtedly it took effort and a bit of trial and error but I was able to use the tools I’d been armed with to reassess how I could manage my day and move things around until I hit on what worked for me.

I write all this to give you hope that I went from absolutely struggling and barely functioning between 2013-2016 in particular, in constant pain, not listening to my body the way I really needed to and definitely not feeling confident in managing my health on my own, to where I am today. Applying the pacing techniques from my programme, with some existing knowledge of what I knew of my own body, has 100% bought me to a place of confidence, greater ability and resilience in the face of flares that I can now pace myself out of.

The biggest evidence I can give you for how this has worked for me is that in September 2016, shortly before completing my programme, I took part in a 5km charity walk. When I began the programme if you had asked me if I could do that it would have been a flat out No. Over the course of those 15 weeks I could see how I could scale up to that level of challenge and although it was bloody hard, and I had to stop a lot for rest breaks, I did it. It’s still something I’m immensely proud of and I really do have pacing to thank for helping make it possible. 

Me and my best friend ready to take on the Parallel 5km in 2016

Head on over to the toolkit for the full breakdown of what pacing really is, why it is so important (which I hope this post has given some personal insight into), how we can achieve it and when we should be doing it. And let me know how you’re getting on with pacing too!