Posted on 2 Comments

Pacing – getting started and into the driving seat with ME/CFS

So let’s talk about Pacing and how to get started and regain some sort of control over this thing called ME.

But before that you’re asking – what is Pacing? Well I’m not going to try and define it when others have done so succintly – see below.

“Pacing is a self-management tool. It is a technique to help you take control of the balance of activity and rest, and learn how to communicate to other people about the balance that usually works best for you. “

Action for ME – Pacing for People with ME Feb 2020

This all sounds good and initially you think – finally something I can do to manage my illness/condition. I can re-gain some control! Tell me more and more importantly HOW?

But then – I was handed paper photocopied sheets to record my activity on a daily basis so I could start Pacing.

It felt like being back at school with a compass and protractor. I could almost smell the wooden pencil sharpening shavings and hear the rustling of the tracing paper-grade toilet roll! (And no – that isn’t a symptom of ME/CFS or Covid 19).

I was disheartened, disappointed. Is that it??!

Pencil and Paper Diary
Um – this pencil and paper approach isn’t going to work for me …

However, the idea behind keeping records and a diary is sound

It gives you context and something to review and look back on to see any trends and hopefully see progress.  It gives you data and GP’s like looking at the data – who doesn’t like a bit of data to review, a graph going upwards or downwards or a dashboard?! ( I see you ex-management accountant, ex-COO, ex-retail manager, ex-operations manager , ex-project/programe manager wishing for the dashboard of your dreams!)

It’s just that I’m addicted to my phone (aren’t you?!).  I read the news, I check my social feeds and keep up with happenings in the ME/CFS research world on my phone.  My phone is my main social life these days.  Yes – who doesn’t love a new beautiful notebook to make notes on but I’m not about to carry one around all day and if you’re asking me to keep a diary and to record my activity on a daily basis – you’re going to have to make friends with my phone to make it happen!

Surely there are some wonderful techy people who can make an app?  So yes – there are apps out there.  But you’re at the mercy of the App stores and the developers.  Sometimes apps are there and then withdrawn. And when I last looked- there wasn’t anything out there for what I wanted.  If you’ve found an App that works for you – then let me know or post below!

However I did find a way that doesn’t rely on an App or Developer and is free – so thank you Google!  That’s another post – but first we have to consider the different activities you do on a daily basis.

So to get started – I wrote down my daily regular activities. Waking up, taking a shower, getting dressed, brushing my teeth, walking with the children, walking on my own, feeding the chickens, watching TV, lying in bed wondering when this crushing feeling was going to end, sitting on the sofa, sleep, etc.

Right – over to you. If you want to give Pacing a go – you’ll ned to write down a list of your daily activities. Try it – it’s not that hard. And next time we’ll categorise them into different buckets.

And don’t forget about resting as an activity.

2 thoughts on “Pacing – getting started and into the driving seat with ME/CFS

  1. […] this blog post was actually going to be about Pacing – I was going to talk about Rest and how I used Pacing to help me get […]

  2. […] if you have a list of your activities – then we can start to move into first gear and categorise your activities into buckets. I […]

Leave a Reply

Your email address will not be published. Required fields are marked *