On the road to recovery Part 3 - Pace Yourself
One of the key things about ME/CFS is that you have to practice pacing. When I became ill, I knew I was struggling to do the tasks that I would normally be able to do, hence having to leave work. Managing life became a matter of choosing which things, off the to-do list, I could manage and which ones would have to wait. For most CFS patients, it’s not that you are always unable to do activities; you may be able to walk for 5 minutes, do the shopping, or help with the kids. The problem is that your body suffers for it afterwards.
We use the analogy of having ‘spoons
of energy’ to use sparingly. Since the invention of the smartwatch, there is now
a device for CFS patients called a ‘Visible’ armband and app. It tracks your heart
rate and other metrics, allocating you a number of ‘pace points’ for your day
according to data that it’s gathered over time. It then monitors your
activities and tells you when you are doing too much (see the pictures for some of the data I could see on the app). It’s all very clever. I
bought one of these arm bands and it really helped me understand more about
what my body was capable of each day and how overdoing it affects the days and
weeks to come. However, Dr Perrin (The Perrin TechniqueTM) takes it one step further. He advises the use of the ‘half-rule’ or 50% pacing:
“Whatever the activity,
whether walking, having a conversation or watching TV, always do half of what
you feel capable of. In other words, when you do any physical or mental
activity, always ask yourself, ‘Can I do double without any problems afterwards?’
If the answer is no or maybe, then you are doing
too much. The answer to that question always has to be an unequivocal YES. Pacing
[like this] reduces the strain on your sympathetic nervous system, which is
paramount for the improvement in your health. Without pacing [like this] there
won’t be any long-term benefit from any treatment of ME/CFS…”
Dr Raymond Perrin[1]
It took me a long time to realise what ‘half’ (or 50%) looked like. The Visible app was showing me what my 100% was/ how not to burn out. Doing 50% was a whole other board game. I found it hard to purposefully say no to doing a task that ‘needed doing’, especially if that meant that someone else would have to do it (eg. cleaning or cooking). For the first few months of my treatment, I was using my Visible armband. To friends and family, my capacity had been so drastically reduced that it looked like I was pacing well, and I thought I was. But in fact, I had a lot to learn.
So what did life look like? My weeks followed a
pattern. I knew that routine would be key, having learnt this lesson during
lockdown back in the day. Without routine, it was likely my mental health would
suffer, especially living on my own. Practically, though, some days I couldn’t
get out of bed. The bone-deep tiredness just saturates through to every part of
you. Being the creative type, I had made myself a self-care scrapbook early on,
to try and keep myself on track with medication, home treatments, diet, pacing,
and self-care.
I want to use this moment, before I carry on my
story, to say a thank you to a few more people who were helping me at this
time:
Thank you to my mum, who trekked across Preston on
public transport to come and help clean my flat when I simply didn’t have the
energy to do it.
Thank you to my good friends Laura, Debbie, Hannah
and Cheryl, along with others who provided meals for me, because even cooking
was becoming exhausting.
Thank you too to Hannah and Cheryl, who let me
chill at their houses sometimes, when they were at work, to simply give me a
change of scenery from the walls of my flat.
Outside of the flat, the general opinion was that,
because I lived alone, I should make sure I tried to meet up with people. So
I'd go to a friend's house for tea, once a week, and try to get to church or
bible study home group each week. Sounds simple enough. The problem was, it
didn’t take much for things to snowball, and my pacing to go right out the
window. Simple tasks like a health appointment were taking the whole day's
worth of energy. Having a shower or putting the washing out, that's it, you're
done for the day. But I had disability support applications to complete,
friends whom I hadn't seen in ages wanting to meet up, and food shopping
needing to be done (just to name a few). Before I knew it, I was pushing myself
to keep up. Making sure I got out to see people became harder and harder. For
months, Mark Singleton, my long-suffering local Perrin Practitioner, would
ask me, “How’s pacing going?” and my answer would always be ‘hit and miss’.
Bless him, he did his best not to roll his eyes.
My body knew it wasn’t going to be able to keep
this up, but I was clueless. My Visible arm band was telling me when I used up
my pace points, but I wasn’t doing ‘the half rule’. There were two people, my
good friends Holly and Annie, who knew better than I did how much I was still
pushing myself. It would take me months to understand what they knew.
Holly's consistent gentle suggestions to sit down and questioning looks, when I
was attempting to do whatever task she knew I shouldn’t be doing. Annies text
messages reminding me that it was ok to say no when someone asked something of
me or if I just didn’t feel up to going to church. They were the little quiet
nudges of love that got me thinking. I began to realise that I might need help
of a different kind and so began the process of searching for a counsellor I
could talk to.
In his book, Dr Raymond Perrin explains that when a
patient has treatment, they often find that the symptoms get worse before they
get better. My case was a bad one, scoring 2/3 out of 10 on the Perrin Scale[2]. It was going to take a long time before
I started seeing results. I went for a reassessment in January 2025 to see how
it was progressing, and it was as we suspected. My lymphatic drainage system
was still clogged up good and proper, especially around my head. Dr Perrin
reassured me that I’m not the only one to find pacing hard, especially using
‘the half-rule’. This world is so geared up to be busy and productive, it’s so
counterintuitive to give yourself permission to step back to the extent that I needed.
It’s a difficult task to say no to people you care
about, to say that you can't go for coffee with them like you used to, or hang
out with them or even be at church regularly, because you simply have to put
your recovery first. Do it for a week or two and people don’t say much, but when
it takes weeks or months before you feel able to go for that drink with a
friend or before many people see you out and about, that’s when it gets hard. Many
CFS patients have broken relationships because of this; some tell their stories
in Dr Perrin's book[3]. I am thankful that my friends
understood, though it was challenging. It's not easy for them to see a friend
go from an active lifestyle, to being bed-bound. It’s even harder when their
instincts say pushing yourself so that you get to see people isn’t such a bad
thing, especially if you live alone.
Dr Perrin reassured me, in January ‘25, that the treatment would turn a corner, that it wasn’t far off, but that I was, at that point, at the ‘rock bottom’ stage of the proceedings. He was right. With the help of my psychotherapist, I started to practice the ‘half-rule’ pacing properly. The illness did turn the corner. By my reassessment in April ’25, my score had improved to 5 out of 10 on the Perrin Scale. That was a day to remember.
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Resources (click to access):
Mark
Singleton: Perrin Practitioner
Dr
Raymond Perrin: The Perrin Technique
The ACC: Christian Counselling Register
References
[1] ‘The Concise Perrin Technique: A handbook for patients’, Dr
Raymond Perrin, Hammersmith Health Books, London, 2021, page 60.
[2] 'The
Concise Perrin Technique: A handbook for patients’, Dr Raymond Perrin,
Hammersmith Health Books, London, 2021, pages 46-47
[3] ‘The
Perrin Technique’, Dr Raymond Perrin, Hammersmith Health Books, London,
2021
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