Pacing: what to do when you’re worn out

I’ve intended to write about pacing for months, now that it’s come to it I don’t quite know where I’m pitching it. I’ve just finished putting together a pacing protocol for Low Intensity Therapists (LITS, also known as PWPs) in my team who can use it as a stand-alone piece of work, or to support other Low Intensity Pscyhological Interventions. So it’s partly a how-to manual for LITs.

I’m writing this in the context of the Covid 19 pandemic too. I’m recovering from some nasty virus that might have been the infection we all dread, or might not; I’m feeling severe fatigue, my activity is restricted and I’m having to put this into practice urgently. So it’s partly me processing what I need to do to look after myself.

The other thing is that my social media timelines are full of people who have been unwell with an acute infection that may or may not have been Covid 19 and they’re all reporting fatigue and I’m lying here thinking ‘it would be really helpful if they knew how to pace, we all probably need to know how to pace right now’. So partly it’s designed as a self-help guide for exhausted people who might find this helpful, however temporarily.

Be safe

Changes in your health can often lead to changes in your mood. Many people feel low or more anxious when they are poorly. Sometimes people who are fatigued or in pain for a long time can be bothered by thoughts of suicide or self harm. If you experience that please don’t ignore it. Tell a friend and your doctor, or call your local helpline; tell someone how you’re feeling and use any help that is available. If you’re in immediate danger of death then use emergency services. Please remind yourself that although symptoms like fatigue can be truly awful they don’t stay the same forever, there is always hope that things will improve.

Basically it’s going to be all over the shop and I’ll just see how it goes. The good news is that there is something you can do while you’re wiped out. The bad news is, it’s pacing. I’ve written three other posts about long term health problems that are relevant to pacing, but this post should be OK to read on it’s own. People who’ve suddenly got less energy than they’re used to having, and Low Intensity Therapists and other professionals who support people who are tired a lot of the time, might find something useful in here, I hope.  

even when you can’t do as much as usual it’s important to find a balance between doing what you can while getting the rest that you need

This post is a very general beginners guide to pacing, it covers some of the key ideas and principles and isn’t trying to be comprehensive. If you want to use pacing to manage a specific health condition like chronic fatigue, chronic pain or COPD then the general principles in this post might be helpful but it’s worth talking to people who specialise in your condition because there are ways that pacing will be done differently depending on what symptoms you’re trying to manage.

TLDR

Pacing is about finding the balance between activity and rest so that you are never so exhausted that you can’t do anything. Pacing can help you to recover from illness and manage long-term, especially when your body isn’t 100% healthy. It’s difficult to do, I’ve never met anyone who paces perfectly. The most important thing I can recommend is find someone who has lived well with a long term health condition for a few years, you know, that friend who maybe has to cancel plans a lot but still gets the important stuff done. Ask them how they manage their energy, how do they keep doing what they need to and still appear OK? I guarantee it wont be as easy as they make it look and they will have something helpful they can share. Of course you will have been endlessly patient and understanding when they had to cancel and re arrange plans with you, or were only rarely available, and they’ll be happy to share their wisdom with you.

How to pace

  1. Be curious instead of demanding
  2. Never do as much as you can
  3. Have a way to measure your energy
  4. Stop often
  5. Rest regularly
  6. Use what you’ve got
  7. Plan and prioritise what you do
This feels like a very important message at the moment and fits with the theme!

Curiosity instead of demands

So the first thing is about attitude; to pace well you have to be curious instead of demanding. It’s rare to meet someone who doesn’t have expectations of themselves. We walk around with (usually) unconscious ideas that a person of whatever age, gender, weight/appearance/health status and circumstance we are in should or ought to be capable of doing a certain amount and type of activity. These expectations sometimes come from what we’ve been able to do in the past, from rules that we learned as children, sometimes from comparing ourselves to other people, sometimes they’re just 100% self-inflicted random rules. Quite often other people have these expectations of us too and we find it very difficult not to try to live up to these.

Pacing is deeply frustrating but very effective.

The first rule of pacing is to make like Elsa and Let. It. Go.  Instead of demanding and expecting certain things from yourself you can practice being curious about your body. Give yourself a complete blank slate and ask what’s doable instead of assuming things are.

Another attitude that pacing needs is a willingness to do things differently, do things that you haven’t done before, and possibly stop doing things that you’ve always done. This isn’t comfortable or easy and making these changes can be frustrating and feel like a real loss. Pacing can be hard to do on your own so if you’re going to try it you could consider getting someone to support you.  

Never do as much as you can

Think about your phone. Your phone has got a battery and it will work as long as there is some energy in the battery. When the battery is empty and has no power the phone stops working. You can limp it along with power saving, dim the screen and switch off bluetooth but eventually you’re going to have to plug it in. We’re the same, if we use up everything we’ve got then we will be forced to stop. One of the fundamental principles of pacing is that you never want to get to the point where you are forced to stop, you want to always have some power in the battery.

When someone repeatedly uses up all of their ability to do things until they are forced to stop we call that ‘Boom and Bust’. Boom and bust is an activity cycle you see a lot, not just when people have got long term health problems. Activity tends to give us things that we want: a sense of achievement or pleasure, feeling normal, the comfort of living up to all of those expecations from ourselves and others; activity is a way to express your identity. Doing less than you can, and deliberately doing less than you want to, is deeply frustrating so we tend to do as much as we can until we’re forced to stop.

Jeff Goldblum in Jurassic Park summing up the most important rule of pacing
Image from https://jennburke.com/2015/10/16/just-because-you-can-doesnt-mean-you-should/

The ‘boom’ part of the boom and bust cycle are those periods of activity – you use the energy that you’ve got to do things because you get all of those rewards, and out of habit. Depending on your current physical ability boom might last a few minutes or a few years, it’s very individual. The ‘bust’ is when you’ve flattened the battery and you’re forced to stop, your body becomes a cage that wont move, or pain flares up and incapacitates you; you can’t do the things that you want to do. I call ‘bust’ the shit bucket because when we draw this out on a graph ‘bust’ is usually represented as a low point on a graph that looks like a bucket and I ask people ‘What does this bit of the cycle feel like?’ and they all say ‘shit’. If you get to the point of your body being unable to do activity you’re likely to feel low, frustrated, guilt and shame, loss…

So the idea is that yes, you are always going to have good days and bad days, days when you can do more than others. But if you do a bit less on the days when you could do more then you won’t empty your battery, which will protect you from being stuck in ‘bust’, which isn’t a fun place to be.

Measure your energy

Most people who’ve been ill for a long time have heard of spoon theory. Spoon theory is the brainchild of writer Christine Miserandino and is explained well in this article in Possability Magazine . The idea is that you have something that represents your energy. In spoon theory that’s…spoons. Our local chronic fatigue service use a marble metaphor, I’ve always imagined my energy as water; sometimes I’ve got a bucket, sometimes a reservoir. It doesn’t really matter what image you use, the important thing is to do your curiosity thing – how much energy or ability to do stuff have I got today/right now – and have a mental picture of what that energy looks like. When you’ve done that it becomes easier to plan how you want to spend your energy and what activity you need to prioritise. It also reminds you to figure out what gives you more energy because the dwindling image prompts you to refresh yourself.

How I imagine my pool of energy on a good day!

Once you’ve got an image of how much energy you are working with it’s a good idea to keep track of how much energy different things use up. Low Intensity Therapies are CBT based after all, we love a diary.

One way that you could record how much energy different activities use

Physical activity uses up energy, that’s obvious. Doing 20 minutes of interval training will use up more spoons than a slow 20 minute walk for most people. Chopping fresh veg will take more spoons than putting a microwave meal on the table. So you can think of the physical things that you do regularly and give them an energy value: 5 spoons for a shower, 2 for a bath, for example.

Mental activity uses energy as well. Reading 50 shades of grey might take fewer spoons than a journal or text book (it’s a different type of mental energy anyway!). Planning meals for a day might take fewer spoons than planning a family Zoom meeting. Noticing the things that you have to think about and concentrate on and giving them a rough energy value helps you to spread them out across the week when you’re planning.

The other type of activity that can take up an unexpected amount of energy is emotional activity. Emotions happen in the body as much as anywhere else and can have a big effect on how much energy you’ve got. It’s worth keeping track of the things that bring up the big feelings, that are stressful, worrying or joyful, for example. Try to get into the habit of noticing how things affect how much energy you’ve got so that you can spread the more demanding things out a bit.     

A completed example

Stop often

Think about why you stop doing something. Usually it’s because you have to go and do something else, because you’ve finished what you were doing, or your body becomes unable to keep doing it for some reason; like if fatigue, breathlessness or pain get too bad and you have to stop. There are reasons why we don’t stop once we’ve started. We tend to get absorbed in the things that we do; there was probably a good reason why you started doing something, it felt like it needed to be done. We worry that something bad will happen if we don’t finish what we’re doing.

The good news is that there is something you can do while you’re wiped out. The bad news is, it’s pacing.

Pacing involves stopping before you have to, ideally you do this by the clock, not by how much of the activity you’ve done. So instead of sitting down to write this post in a day, like I usually would, I’ve worn a timer and have stopped writing every 15 minutes while I’ve written this one. Stopping forces me to check in with my body. When my mind is absorbed in a task I don’t pay attention to physical signals like fatigue, or even pain sometimes. If I complete tasks without frequent breaks I end up in the ‘bust’ part of the boom and bust cycle. I wrote Ring Ring in a few hours, and it took me nearly two weeks to get some normal energy back (the virus might have contributed to that but the activity was a factor!). I’ve been writing this post for nearly a week, it isn’t finished yet and wont be for a few days. It’s frustrating to work so slowly but my energy has gradually improved this week. That’s because I break frequently, check in with how much energy I’ve got, and stop writing if I need to.

Have a timer. work out how frequently you need to check in with yourself. 15 minutes works for me but you might need to stop more often, or less often, just be sensible about it. When your timer goes off try to give yourself a few minutes to be curious about your body and how it’s feeling. Maybe get a drink or something to eat, do diaphragmatic breathing or mindfulness for a few minutes, or stretch. Then decide if you can carry on with the task or if you need to rest properly or do something else for a while.

Rest regularly

Pacing isn’t just about how you spend your spoons, it’s about how you get more. Learn how to rest. Learn how to get into a state where your body is free from tension and your mind is free from worry at the same time (relaxation, that’s a definition of relaxation). Give yourself permission to do nothing a few times a day so that you can recharge the battery before it empties. What recharges your battery will be individual, it comes down to paying attention and learning what works for you.

Pro tip: leisure isn’t the same as rest. I’m a gamer, I play computer games for fun. Nothing wipes me out faster than half an hour on the play station when energy is low. I’ve had to learn how to meditate for rest so that I can play games for fun!

Try to find your peace with stopping when other people are able to carry on. There have been times when I have had to lay down under my desk at work, it felt like laziness and unfair to my colleagues who could keep working all day, but by doing that I was able to get my work done without pushing myself into a long period of enforced rest where I wouldn’t have been able to work at all. Pacing is deeply frustrating but very effective.

Nothing more restful than a hammock

Use what you’ve got

There’s a common misconception that doing nothing will lead to healing. It comes from when we had acute infections as children; you stop your usual routines for a few days, your body heals, you get better. Many health conditions can improve with good management but when we’re in the realm of long term changes to health (more than a couple of weeks) complete rest tends to be unhelpful instead of healing. Always follow the advice of your healthcare providers of course, I’m talking in very general terms here. Our bodies tend to give us a use it or loose it option. If we don’t use the strength and fitness that we’ve got then we lose it, so even when you can’t do as much as usual it’s important to find a balance between doing what you can while getting the rest that you need.

It’s normal to feel afraid of activity when you have prolonged fatigue, pain, breathlessness or other symptoms that can flare up with too much activity. That fear can be paralysing and get in the way of doing things that you are physically capable of. That’s where coming back to that attitude of gentle curiosity and willingness to experiment can help. You won’t get the balance perfectly right but if you can get the rest that you need while staying a bit active then you’re doing a lot to help yourself.

The Take it Easy Trap is an illustration of what too little activity can do

Using what you’ve got doesn’t mean being yanked around by what you’re body is capable of day to day. You can use your diaries and what you learn about yourself to prioritise what you need to get done with what you’ve got available. Then plan; spread things out over the next week or two, write down when you’ll have breaks and how you’ll rest as well as how you’ll spend your energy.

A pacing protocol for low intensity work

So dead quickly I’ll write up a proposed pacing protocol that you could use in low intensity work. Obviously check this with your local clinical lead but our local LITs/PWPs find it useful.

  1. Education on the Boom and Bust Cycle and The Take it Easy Trap, try to make time to acknowledge the emotional impact of these behaviour cycles.
  2. An outline of the core principles of pacing: that’s hopefully been covered in this blog
  3. Diary keeping; tracking the link between activity and physical symptoms for a week or two
  4. Review the diary and work out if any unhelpful patterns are present
  5. Plan a well paced week, use problem solving if needed
  6. Review
  7. Have a plan for how to react if there is a flare up of physical symptoms (initially reduce activity to accommodate the change but then gradually increase activity again)

Wrapping up

So that’s a super fast whistlestop tour of pacing. I hope there’s something useful in there. People have written whole books about this but I’ve tried to get the basics in less than 3,000 words (I failed!). It looks like the strange times that we’re in will carry on for a while. Everyone is going through a process of trying to find their feet in a new normal and that wont happen quickly. Some of us will also be physically unwell which will make it’s own demands. Maybe this post can just be an invitation or permission to prioritise good rest amongst the strangeness? Anyway, please take good care.

The next planned post is going to be a guest post by the amazing Saiqa Naz. We’re hoping to have it ready in a week so watch this space 😁.

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