7 Tips for Mastering Pacing for ME/CFS, Fibromyalgia and Lyme Disease

This is a post I wrote especially for ProHealth’s Inspirational Corner  and first appeared there about 2 months ago.

With energy limiting chronic illnesses like ME/CFS, Fibromyalgia and Lyme disease, a key to being as well as possible is to make sure you don’t use more energy that you readily have available to you. (This is sometimes referred to as the energy envelope.) When we push past our limits our cells have to use a different method to produce energy, and this emergency energy production always leads to a substantial worsening of symptoms. Simply speaking pacing is a way of taking care with how you use your energy so that it doesn’t run out. Although it sounds simple it involves learning may new skills that have never been needed before chronic illness and unlearning old ways of being, that no longer work for us.

Pacing is a word that inspires a mixed reaction in me. It brings feelings of not being able to do what I want and lack of spontaneity. It also brings the irritation of having to be disciplined in or order to pull it off. It involves all the practice and self-denial involved in mastering any kind of complex skill set.  But ultimately, I know I have a much better life because of it and it gives me a very important (if not fragile) sense of control over my well-being.

Another thing I get from pacing, is a sense of achievement. When chronic illness robbed me of the ability to achieve in ways that I did when I was healthy, I decided that I would set my sights on mastering illness management skills. I now get to feel really good about pacing well, because let’s face it, no matter how big the benefits may be, it really doesn’t come naturally; doing it well is a huge achievement!

Here are my tips on seven different aspects involved in mastering pacing.

  1. Know your baseline

The starting point for good pacing is getting a good idea of what you can do on an average day, without going beyond your energy envelope. I found it helpful to record my activities and wellness over a couple of weeks and look for how my wellness changed at different levels of activities and what levels of activities meant that I could keep it stable. I then created a routine around my baseline to keep my energy expenditure safe. If I was doing anything out of the ordinary, I knew I would have to take back the energy from somewhere else I my routine. I also knew that if I was having a worse day than usual, I needed to cut back on what I would do.

  1. Keep everything to short bursts

For me another important principle of pacing is trying to make sure that none of my cells go into emergency energy production. It seems to make a lot of sense to me that if I keep any kind of activity to very short bursts, each set of cells I’m using will have a better chance of the mitochondria recycling my ATP. Keeping in mind my overall energy levels, I chop and change my activities sometimes using a different kind of activity to pace, rather than just rest. For example, I might pace my thinking time with a bit of washing up, as well as with a bit of rest. Using the timer on my phone as well as an ap on my computer has been invaluable to helping me keep each activity to a short burst. Although It took a while to adapt to the lack of flow involved in chopping and changing activities, I found that in the end it was far more productive because it kept my energy safer.

  1. Approach everything with mindful relaxed effortlessness

An absolute key to being able to pace well has been to practice mindfulness. Becoming more mindful has made it possible for me to notice when my body is tiring and take appropriate action. It has also been instrumental in being able to overcome old autopilot habits that get in the way of good pacing. I also found that if I approached everything with an attitude of relaxed effortlessness, I used less energy for each thing I did.

  1. Make certain rest non-negotiable

I know that in order to function as well as possible I need a certain amount of rest at particular times in the day. I make these rests non-negotiable. I know they have to happen in order for me to stay well. If something unusual is happening that means that they can’t happen at the time they normally would with my routine, I do my best to take them early or at least I try to fit them into my day somewhere. If I can’t take them at all, I aim to add them to the day before and the day after to make sure that over a few days I’m not losing the rest I need.

  1. Take stimulation breaks and relax

For me pacing isn’t just about activity, its about using my energy efficiently. I’ve found that if I let my nervous system stimulation levels get high, I tend to rush more and hold more tension in my body, using my energy less effectively. It’s also much harder to notice when you’re tiring if you’ve switched into fight or flight mode. Keeping my stimulation levels down involves taking regular stimulation breaks (a few minutes of quiet time in a low stimulation environment). Its also about noticing when the tension is rising in my body and practising breathing and relaxation techniques to bring my nervous system activity down. Including tai chi, meditation and yoga in my daily routine also helps to keep my stimulation levels lower and my energy use more efficient.

  1. Learn not to rush

In pre-illness day’s being efficient often meant being fast and rushing developed into a kind of habit. When we rush, we are approaching life as though we’re under pressure. This may have been a very productive way of being when energy wasn’t limited, but with chronic illness it just causes harmful tension in our bodies and keeps nervous system stimulation levels high. For me learning not to rush meant consciously choosing to slow down, almost to the point of aiming to do everything in slow motion. I found that going slow meant I could notice the tension in my body and choose to let it go. I would also notice earlier when I was tiring and could choose to stop in good time.

  1. 7 tips for mastering pacing for chronic illness like ME/CFS, Fibromyalgia and Lyme diseaseUnlearn the completion compulsion

One of the most common autopilot behaviours, that is extremely harmful once our energy is limited, is the drive to finish a task once you’ve started. Unlearning this automatic behaviour in order to be able to stop when we need to, is absolutely key to good pacing. First, we have to become aware that we are pushing to complete something, then it helps to remind ourselves that pushing no longer serves us, so that we can choose to stop. Finally, we need to pay attention to the evidence that stopping when we need to, keeps us healthier and is just as productive in the long run.

There is so much involved in learning to pace well, make sure you give it the attention it deserves. You also need to congratulate yourself for what a great achievement it is when you succeed!

A small favour: I’d be very grateful if you could rate this post using the stars below the related posts.  Thank you x

Image courtesy of pixabay.com

5 thoughts on “7 Tips for Mastering Pacing for ME/CFS, Fibromyalgia and Lyme Disease”

  1. Thank you for this. It reaffirms everyday limits of life for me, with fibromyalgia; particularly about rest periods being non negotiable and not rushing to finish something as would have previously. Also mindfulness and relaxation – we all know stress increases pain or tiredness.. I will refer to this article and show it to those who don’t understand the effects of these ‘ hidden diseases

  2. I have been on what I call a “forced wellness journey” for 6 years now. What started as Pregnancy hormonal issues, has lead to Mono, and then chronically active Ebstein Barr virus, HahV-6 that causes zapping skin pains, sinus infections, headaches, sore throats, “flu like symptoms” almost daily, heartburn, 15 food allergies, 12 food intolerances, muscle aches, joint and tissue pain without swelling, insomnia, brain fog brought on by exhaustion, and worst if all FATIGUE!!!!! I have the typical story of every blood test and no answers. The only thing that my doctors can come up with is that my body is chronically inflamed, spurred on by Pregnancy, Digestion issues and EBV. My Functional Medicine Doctor is treating my symptoms like ME/CFS, but In all reality I feel like I am just lost. Your post really spoke to me. I SUCK at pacing. I have gotten better, but it’s almost like living a foreign life. I am a wife, mom of 2, second grade teacher and volleyball coach. I gave up coaching gymnastics 6 years ago, but held onto volleyball until this year. I stepped down as coach and cried for a week. I hate giving up what I love. The past 2 school years were extremely rough for me as I was at my worst, symptoms wise. Sometimes I feel ‘ok!’. In those moment I think I’m not sick, overdo it immediately, and sabotage myself. This summer I experienced 2 flares that really wore me down. School starts next week and to be honest I’m scared. I’m scared that I cannot be the teacher I need to be. I’m scared that I will be too sick. I know that pacing is key, and I know that my body goes into fight or flight mode after about 3 hours lately, but the school work day is 7. I’m afraid that I’ll be horrible at my job and my students will suffer along with me
    Thank you for allowing me to brain dump! It’s such a hard thing to be open and honest about.

    • Hi Elizabeth, Sorry to hear that you’ve been having such a rough time. I totally understand the need to dump in a place where you can be understood. It really does suck to have to give up the things we love. My experience though is that it’s absolutely crucial to let go and grieve them in order to come to an acceptance that life needs to be lived differently for a while. Without it the cycle of boom and bust just keeps going and there’s a real risk of health getting worse and worse. I also totally understand how tempting it is to forget you’re ill on those glimpse days of better health. It takes a lot of discipline to be careful with what you do when you’re feeling better. Good pacing can make a wonderful difference to how much can be achieved in a day, but it’s also really important to accept the reality of your situation. Any chance you could renegotiate your commitments at school and go part time? Wishing you all the best, Julie xx

    • Elizabeth, there’s so much in your post I can relate to and just want to say you’re not alone because the bad days can feel so lonely.
      I too developed all of the same symptoms as you following the birth of my second child. I’m also a teacher and think it’s in our nature to give so much, want to do well, give our children and families the best experiences, see every job through to the end…
      I’m definitely not on top of this but after 4 years am beginning to accept it. Only just have I stopped convincing myself it’s gone every time I feel well and then push too hard again just to have a relapse.
      Being mindful is the best thing I can do as it’s then I realise how tense I am.
      The situation we are all in at the moment with lockdown has caused a lot of tension and I’m waking up feeling like I’ve been beaten up.
      I don’t have a great deal of advice but just wanted to say thank you for your post because there are days when I feel like I’m mad and no one in the world understands how I’m feeling.
      You help reaffirm this is not in my head!


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