This is part of a series of blog posts around Pacing which is mainly aimed at people who have ME but may also be relevant for other Spoonies such as those with Fibromyalgia or PoTS. Some of this post is from a previous post on Pacing, but I felt that I was trying to fit too much into one post, so I took the ‘tips’ out of that post and added more here.
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What follows are some quick tips from different approaches to Pacing. It probably doesn’t work as a mix ‘n’ match, but may give you some different ideas if you feel stuck-in-a-rut with your current approach.
Edit 2020: I’ve added some additional evaluative comments in italics as post Covid folk may not know the contexts of the various approaches.
Symptom-Contingent Pacing Tips
Stop or rest when your symptoms increase during an activity.
The difficulty with this idea is that symptom increase tends to be delayed by at least a day in ME, this is probably a good idea for other Energy Limiting Chronic Illness conditions though.
Rate fatigue every day on a 100 point scale where 0 means ‘no fatigue’ and 100 means ‘extreme fatigue’.
Rate perceived energy from 0 representing ‘no energy at all’ to 100 denoting ‘energy similar to that when well’.
Assess expended (used) energy, where 0 means ‘no energy expended’ and 100 means ‘all energy used up’
Monitor the difference between expended and perceived energy and adjust appropriately
This is a subjective approach though possibly most similar to what those of us who have had ME a long time do most often. We don’t tend to use the objective measures long term, but my instinct is it’s better to start with an objective method such as heart rate monitoring or keeping steps per day even.
Read more: Goudsmit et al (2012) eg p8
[Further discussion of Symptom Contingent Pacing to follow in an upcoming post in the Pacing series.]
Bouncing the Boundaries Tips
This approach believes there are 3 phases to ME which require different techniques. The first phase requires rest, the second phase involves calming down an overstimulated system (eg better sleep, meditation), and the third phase involves reintegration into normal life (more emphasis on pacing).
If you feel like you want to do it, and that you realistically can do it, give it a go (in very small steps).
This approach comes from the Optimum Health Clinic, something I wouldn’t wholeheartedly recommend. It’s a clinic run by people with ME who have returned to normal life, encouraging others to do what they think helped them. I don’t agree with all of the Psychology side of their clinic, it can be a bit too woo hoo for me and attributing too much control to how we think about activity and health. ME fluctuates so much from anecdotal evidence it can be easy to misattribute what helped.
But their approach to Pacing is most similar to what I intuitively developed for myself and I have previously been able to return to normal levels of activity. I also found their nutritional appointments helpful, in 2012 moving from bedbound to housebound level seemed to be a result of this, but costs mount up quickly and it might not lead to much improvement.
Read more: Bouncing the Boundaries
Adaptive Pacing tips:
Don’t use more than 70% of your available energy
P152 Questions to ask yourself:
1. What needs to be done (necessary to lifestyle)?
2. What do I like to do?
3. What do others expect me to do?
4. How much energy do these different activities use up?
5. What can I eliminate?
6. What can I delegate?
Don’t forget to bank and budget for energy
Read more: Adaptive Pacing Manual (see resources at the end) such as this:
This isn’t so popular as a method of Pacing. It is the method used in the infamous PACE trial and many patients say Adaptive Pacing isn’t quite what they mean by Pacing, it’s too operationalised and typically Pacing can become quite intuitive.
People with ME disagree about whether terms like Boom and Bust and baseline are meaningful. In my lived experience I’d say they are but it’s worth being aware that professionals who use these terms might be influenced by unhelpful wider ideas from the biopsychosocial model eg see the paper In the Expectation of Recovery.
Pacing and Switching
Do an activity
Stop at a convenient break or at the first sign of increased symptoms
Switch to an activity using a different muscle group or type of energy (such as reading)
I found this particularly good when I was mild and I was working, though in my case my ME might have gone into complete remission, meaning this approach helped me manage not yet diagnosed POTS (which makes more sense). Sometimes I felt like I was too ill to continue but if I switched to different types of activity through the day I was ok for a while. I don’t think this is a complete approach to ME Pacing though and resting is a safer reaction to ME symptoms.
Again ME symptoms are usually delayed so the time at which symptoms increase you’re likely responding to doing too much 24 hours earlier, not the current activity. Though as a side note I’ve also heard advice that if you’ve pushed activity the day before it’s particularly bad to also be pushing activity 24 hours later. For example, if you’re inviting guests over in the Christmas holidays, don’t invite one lot of people one afternoon and the next lot for the following afternoon.
Heart Rate Monitoring Tips
Wear a sports heart rate monitor
Calculate your estimated Anaerobic Threshold = (220-age) x 0.6 this is the beats per minute to avoid during activity
Average your Morning Resting Heart Rate for 10 days, if your MRHR is higher than this by 8% then cut back on activity that day.
Read more: Anti-Exercise Fitness Regime
See more: Exercise Group
In my case I was never able to do this properly but it was how I discovered I had POTS. I was then given drugs to reduce my heart rate for that and I wasn’t able to use heart rate to monitor ME in the same way.
I do still sometimes wear a heart rate monitor if I feel like the tachycardia isn’t well controlled. I notice an interaction between ME, POTS and heart rate. If I go into ME PEM it often also provokes tachycardia. If I don’t limit time spent in tachycardia, eg standing for under a minute at a time in bad POTS flares, then it will provoke ME PEM.
Things that may aid your activity management:
Pedometer to keep steps per day even (gives more objective sense of actual activity)
Heart rate monitor
Diary (record activity, food, emotions, symptoms) for delayed reactions
Kitchen timer to limit activity (including mental tasks)
Exercise apps designed for interval training (adjust timing to activity and rest cycles)
Supportive pillows or backrests to use fewer muscles in rest or semi-rest activities
Fitbit or similar wifi equipment to record activity
Avoid Post Exertional Malaise
Whatever technique you prefer, if it’s right for you then post-exertional malaise (PEM) should become less frequent, avoiding yo-yoing.
NB if you find the sound quality annoying, it does improve as the presentation continues and there’s useful info discussed such as to avoid double and triple threat activities
eg showering involves 1) standing 2) heat and 3) raised heart rate so manage by eliminating heat (cold shower) or standing (bath or chair in shower).
Read more: Solve CFS
In my opinion, you need to endure a bit of boredom in order to get well. Too much boredom is unbearable though so:
Limit pre-emptive rest to 30 minute chunks
Build in something fun after a worthy rest break (eg watch a comedy programme, eat a treat)
- Apply Pacing techniques to your TV viewing too, I wrote a post about it here
When it comes to activity management in ME, this fake Buddha quote still pops into my mind:
“Believe nothing, no matter where you read it, or who said it, no matter if I have said it, unless it agrees with your own reason and your own common sense.”
Goudsmit et Al (2012) for a more academic overview
- Accepting Sceptic comments on this site can be alternative explanations or queries based on critical thinking. They are often comments which are accepting that an approach is of benefit to Spoonies but sceptical because it may be for reasons other than the official sales patter.