Implementing Pacing
The Boom and Bust Cycle or Under active-Over active Cycle
The Boom and Bust Cycle or Under Active - Over Active Cycle is where lots of high energy activities are bunched into a few days, which results in a “flare up” of symptoms or "burning out" and means you have to follow it with several days or even weeks of full rest known as a “crash”. Ultimately by doing this repeatedly over time, levels of activity reduce so that less and less gets accomplished each week.
Pacing
The idea of pacing is that you want to adjust your routine to maintain a minimum amount of activity over each day that is consistent, with frequent rest scheduled in between. This approximate minimum amount of activity is the amount of activity that doesn’t trigger symptoms to flare up or a huge wave of fatigue to hit in the next days. This minimum will be unique to each person and may change over the course of an illness. Essentially you are 'pacing activities' and the term has been abbreviated into 'pacing'.
This graphic is a visual representation comparing The Boom and Bust Cycle with Pacing, and what your week would look like when more adequately pacing activities. In order to implement pacing, you want to encourage your week to look most like the Pacing of Activities one. For these graphics I've chosen shades of grey, but physiotherapists often do this with colour e.g. 'a traffic light system'. You can choose which you prefer or even make up your own colour coding key.
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Shades of Grey:
Black - dark grey = high to medium intensity activities
Lighter grey - white = low intensity activities or rest
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Traffic Light System:
Red = high intensity activities
Amber = medium intensity activities
Green = low intensity activities
How to Implement Pacing
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Start by jotting down what your weeks currently look like, hour by hour, day by day.
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Label each task with levels of energy they're likely to take (low, moderate, high) - you can use a traffic light system or different shades of grey.
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It may help to wear a pedometer or the activity counter on your smartphone (if you carry it with you lots) to gauge the amount of activity in your current routine.
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If there are moderate-high intensity activities or tasks that are back-back, evaluate how you can re-schedule your week to space these out with rest on either side. The aim is to make it more balanced and consistent.
EVALUATING YOUR JOB ROLE
Pacing often warrants a job role that allows for flexible working, so that the tasks can be more suitably distributed to avoid a crash. You may want to look into reasonable adjustments with your employer or evaluate your job role and the suitability for helping you manage chronic illness long term, can you explore other fields that will be more accessible for you? I have more guidance on employment with chronic illness on this page
REMEMBER:
The idea of pacing is a rough guide, and even when pacing tasks well, the minimum amount of activity on some days may still need to instead be full rest. The overall aim is avoiding that harsh 'boom and bust' cycle that can be detrimental to daily management and trigger illness flare ups. Some days will be easier to pace than others and sometimes it isn't possible at all - that's not your fault and you're doing everything you can.
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WORKING WITH A PHYSIOTHERAPIST OR OCCUPATIONAL THERAPIST
This guide shouldn't be in place of working with a physiotherapist or occupational therapist. The aim is to educate and inform, but for tailored and more specific support to you, I highly recommend finding ones local to you. For Hypermobile Ehlers Danlos Syndrome, I see a physiotherapist Elaine Byrne at Central Health Physiotherapy in London, that was the recommended clinic from the London Hypermobility Unit, where I was diagnosed with hEDS.
