From InterAction 122
What do you find hard about pacing?
Katherine Langford shares her thoughts – and would value yours too.
Speed read: Pacing isn’t easy, and different people find that different things helpful. In best practice guidelines for psychologists supporting people with the impact of ME, we want to include key information on pacing and how people can be supported to do it in a way that works for them.
Recently, I’ve been thinking a lot about pacing. We conducted a survey as part of work by professionals and patients, supported by Action for ME and the ME Association, to develop British Psychological Society good-practice guidelines. Some people said that they know what pacing is, but find it hard to put into practice.
I sympathise, as I’m acutely aware that I should pace my own ME better.
The challenge of pacing
Some things that make pacing difficult, which people talked about in the survey, are feeling guilty about not doing more. They also don’t like to rely on other people doing things for them (and some people don’t have someone else to do necessary chores for them). Resting properly can be difficult when you feel guilty, like you should be doing something else or you find it boring.
Sometimes people have difficulty realising when they’re overdoing it because of the nature of post-exertional malaise. They feel okay in the moment and only realise later that they’ve overdone it when it’s too late.
Another factor that some people raised in the survey is that pacing can sometimes give people the belief that they can in some way control their illness – and that if they are not getting better that must mean that they are at fault, because they must be doing it wrong. It’s important to emphasise that someone with ME can do everything right, but still find their symptoms get worse through no fault of their own.
What helps
Helpful things that people talked about were making practical adaptations (such as using mobility aids), learning to prioritise what is important to themselves rather than worrying about society’s expectations, learning to recognise the early warning signs when they’re overdoing it, developing coping strategies and finding the small joys in life.
A lot of people in the survey mentioned the Visible app and armband, so I’ve been giving that a go. Despite some technical difficulties, it’s helped me realise that the same activity can use up a different amount of energy on different days depending on how well I’m feeling. On a bad day, the same task will take more energy than on a good day.
When I was first ill, I kept an ME diary. I wrote down a score out of 10 for how I was feeling and then what ‘physical’, ‘cognitive’, ‘social’ and ‘other’ activity I had done that day. I absolutely hated keeping it, as I had such limited energy and that’s not what I wanted to spend it on, but it did mean that I started to recognise some patterns. For example, I was always ill the day after I washed my hair. It helped me learn that some activities took more energy than I thought.
How you can help
In the best practice guidelines we are developing to support psychologists working with people with ME, I want to include some of the difficulties that people face when pacing, as well as some practical advice on overcoming those difficulties.
ME is a physical condition with biological causes, so psychologists can’t cure ME, but they can sometimes help people manage its impact and support them with learning how to pace properly.
I’d like to ask you:
If you’d like to share your thoughts with me for potential inclusion in the guidelines, please email interaction@actionforme.org.uk (please note we need your written consent for your words to be included in the guidelines and potentially a future issue of InterAction – so please confirm this in your email).
Taken from InterAction, our Supporting Members’ magazine, issue 122. Find out more about how to become a member here,
