Pacing with chronic illness seems to be something that we should all do, but is often tricky, complicated and let's face it, a bit annoying at times too. I definitely put my hands up to say that I am not the best at pacing, and am in awe of those who do it so well.
Yet a big migraine flare and general uptick in symptoms the past month due to stress and all kinds of 'life' things has made me re-evaluate how I spend my time and energy. So far, using pacing techniques more effectively has been very helpful!
This post is written as part of the chronic illness linkup party hosted by the lovely Sheryl of A Chronic Voice with the writing prompts of pushing, stretching, discipling, preserving, thanking. Go check out the other entries too!
This post is for informational purposes only and does not constitute medical or health advice in any way.
What is pacing?
Pacing is planning your day so that you do not do too much and deplete your energy. It helps you spread your tasks over the course of the day and week. It also makes sure to include rest time. The 'aims of activity pacing include to reduce overactivity–underactivity cycling (fluctuating between high and low levels of activity) in order to improve overall function and reduce the likelihood of exacerbating symptoms' (Antcliff et al. 2018)*.
Many of us within the chronic illness community are advised to practice pacing, including those with fibromyalgia, M.E/CFS, EDS, chronic migraine and other conditions. It helps to move beyond the 'boom and bust' cycle of doing too much when we have more energy, and then 'crashing' when we overexert ourselves.
There are many aspects to pacing, and seeing a professional is best, but these are the ones that I find most helpful:
Planning tasks - not trying to do everything on one day, or a couple of days a week! Instead, 'look at the activities you normally do on a daily and weekly basis, and develop a plan for how you can spread these activities out' (Royal College of Occupational Therapists).
Prioritising tasks - this means asking questions for me. What tasks can I drop? What can be done by somebody else (especially if it wasn't really my role to do it anyway!). What is the most important thing I need to do each day? And which can be done when I have more time or energy?
Pacing tasks - I always think about making the bed with new linen on this one. Does it need to be done in one go? No, of course not. So I will put the sheet on, then later the duvet cover, then later still the pillowcase. The task still gets done, but without draining me of energy all at once.
Cooking is another example of a task that can be draining, and so pacing can be so beneficial. My post on cooking with chronic illness conditions has lots of helpful tips for the kitchen! And the same is definitely true of blogging with chronic illness too!
The Royal College of Occupational Therapists has a useful checklist of tips on pacing tasks:*
- Break activities up into smaller tasks and spread them throughout the day.
- Build rests into your activities, it’s key to recharging your energy.
- Plan 30–40 minutes of rest breaks between activities.
- Sit and rest wherever possible.
How I am 'spending' my energy - a patient perspective
Knowing the 'guidance' around pacing is helpful, but I often find that reading about how others approach aspects of chronic illness life to be very valuable. It can help to understand how others think, put things into practice, and yes, mess up too! So here are some of my thoughts:
Well I was definitely pushing it in terms of all the things I wanted to do the past month. Too much work, blogging, cooking, medical appointments (including a minor surgery!), as well as life throwing a huge and worrying curve ball at my family. Of course, my body was none too happy with all this and definitely let me know.
A big part of pacing is very much NOT pushing your body (or mind) to its limits. Sounds simple doesn't it? Just stop before you get tired, rather than waiting for the crash to set in.
This moment of stopping (and resting, rather than pushing more) has been the biggest lesson for me, and something I still grapple with a bit. But I still have the words of 'not pushing' from my occupational therapist ringing in my ears. Do I fail sometimes? Of course. Many times actually. I am not going to pretend that I am perfect at pacing, but simply being aware of the process is so beneficial and helps me think things through more than I used to.
One aspect of pacing that I think gets overlooked, but is so important in re-framing the process for me at least is that it allows you to actively CHOOSE how to spend your energy rather than it being 'frittered away' so to speak. Using that way of looking at it means pulling back on tasks that you don't really like to do (or have to do) in order that you can spend your energy on those you enjoy!
Years ago I thought about how I wanted to 'spend' my energy, and I would definitely encourage others to do this. Each of us is different in terms of how much energy (or spoons to use the spoons metaphor) we have available to us. So it will look different in terms of tasks and activities.
A big love of mine is running. It took me years to work up to being able to run again, but it is something I enjoy and now find beneficial for my health. Pacing means I have to figure out how to balance my energy expenditure over the day and week in order to do this. Other activities have to be dropped. It also means, for me at least, being more attentive to my body in order to be able to run. Eating well, stretching my stiff fibromyalgia muscles and resting afterwards is so important.
Often times then, taking part in an activity means a bit of planning, often resting, and being attentive to what your mind and body needs.
Perhaps you are like me and thought pacing was a rather boring way of life to begin with. It just seemed a bit 'meh' to me when my occupational therapist explained it, and all I could think about was restriction and then being a failure if I messed up and did everything I wanted to do anyway.
I think refraining from disciplining yourself is a major factor in being able to pace well. Berating yourself when things go awry isn't helpful. And let's face it, life throws things at us we weren't anticipating, such as a medical appointment we hadn't planned on for example, which then throws pacing off.
Being hard on yourself for falling off the pacing wagon is the opposite of productive! As the NHS says, 'If you try pacing but fall back into old activity patterns don’t worry – this is a normal part of learning a new skill. You can simply start again'.
If we think of pacing as being a positive way of being able to do things we enjoy, then we can also think of it as, hopefully, preserving some well-loved activities and past times. We often lose a lot to chronic illness, but maybe we can keep many things if we pace!
Using energy on activities we don't enjoy means there may not be any left for those we love. I love to cook, but standing in the kitchen chopping vegetable, stirring a pan and plating up is a tax on my energy. I've learnt to stop doing unnecessary activities I don't enjoy, so I can do the one I love!
Pacing with chronic illness isn't the easiest. Our energy levels tend to ebb and flow, and it can be confusing to figure it all out when pain and fatigue are doing the rollercoaster thing they like to do with health issues.
Seeing an occupational therapist wasn't something I thought would be helpful, but I am so glad I did. I am still thanking her in my head years later! The way she explained pacing was so helpful. She got me to do an activity diary for a week to assess my energy output (her verdict? I do WAY too much), and we talked through how to change things up.
If it possible for you do so then I would highly recommend seeing an occupational therapist (or some psychotherapists can help you with pacing too) so that you get a more individual assessment and advice for your circumstances. It may make a big difference to your day-to-day life and enable you to do more fun things with your time!
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*these tips are written specifically in relation to conserving energy for people during and after having Covid 19, but I would suggest they are useful for those with chronic illness also.
**Antcliff, D et al. (2018) 'Activity pacing: moving beyond taking breaks and slowing down', Quality of Life Research, 27(7): 1933–1935.
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Carrie Kellenberger says
Pacing is so very important for us and it's also such a hard lesson to learn because we're used to pushing and we like to be people pleasers. Learning how to pace properly is probably my biggest tip for living well with chronic pain and chronic illness.
You mention that you've been pushing things lately and I always find that I do the same thing, especially in May! It's such a huge month for awareness! I'm ready for June to come so I can take my foot of the gas pedal and rest a bit!
I definately found this a challenge when I first got lyme, as I was doing pretty intense workouts and suddenly went to not being able to do much at all.
I definately found it helpful to start a practice of qigong each morning, which helped me to start the day with relaxation and also build some energy over time.
I had to mostly learn to pace myself on my own, it's really confronting emotionally to suddenly be really fatigued and have crazy symptoms. The thing I found that helped the most was doing different emotional healing methods to help deal with all the strong emotions like frustration, anger, hopelessness, hating the world that come with having all of this going on.
I've heard a lot of people find qigong helpful! Definitely can relate to a sudden decline in health, mine was the same scenario - literally overnight - and the affects on mental health. It's such a big shock and emotionally so tough isn't it.
Sheryl Chan says
Thanks for joining us again this month Claire, and helping to keep the writing prompts running, engaged and interesting! I really enjoyed this post - so many useful tips! You have a talent for transforming the prompts into such useful evergreen posts!
Thanks for hosting the linkup Sheryl! Always fun to try and decide what to write about each month, and hope it's helpful too 🙂
I think spending many years of not pacing myself was probably conducive to my downfall and my body attacking itself. It's such an important lesson that we should all be wary of.
It is so easy to overdo it isn't it, especially when we want to do so much that our bodies aren't too happy about.
Chronic Mom says
I've always wanted to try an occupational therapist (I used to want to be one). I'm so glad yours focused on pacing, as I know many people, even medical professionals, don't get it.
I was very lucky with my OT, and she was very knowledgeable. Kind of made me interested in doing it too!
Katie Clark says
The big difference for me is having to think to rest and very my activities. I was always the person who would start a job and not finish until I was through: grading papers, weeding a garden, laundry, everything. Now, I know that isn't going to work. If I don't break it up and rest, my body will make me rest but for a day, week, or even more due to a flare.
This post spells things out and is very helpful. Thank you, Claire. 💜
I try and do the same. My OT suggested alternating activities between 'thinking' and physical ones, which I find helpful as well.
Glad the post is helpful! Claire