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.
Symptom-Contingent Pacing Tips
Stop or rest when your symptoms increase during an activity.
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
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
There are 3 phases to ME which require different approaches. 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 small steps).
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:
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)
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
Things that may aid your activity management:
Pedometer (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 should become less frequent, avoiding boom-and-bust 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)
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.