Pacing

‘Remember to pace yourself’ is phrase that most of us will have heard at some point and it is relevant to all of us. The people without any health problems will not really think about it, as after a good nights sleep, they are raring to go again! However, those with a chronic illness such as ME/CFS often do not feel refreshed after sleep as their energy battery has not been recharged, or if it has, it has only recharged to 30%, and that 30% of energy has to last us all day (remember the spoons theory from a previous blog post? Access it here https://www.webmd.com/multiple-sclerosis/features/spoon-theory )Therefore pacing is an essential tool to utilize if we need to get tasks prioritized and finished.

We could approach pacing by getting plenty of rest in order to attend a major event but then have a bad flare up of symptoms due to over-exertion that requires plenty of rest afterwards. This is known as Boom and Bust Cycle (more information about this can be accessed here https://www.versusarthritis.org/news/2021/august/the-boom-and-bust-cycle-and-fatigue-your-questions-answered/) I have found that using up all my energy on one thing can often leave me even more exhausted than before and more unable to carry out activities. Essentially using up all your spoons one go.

The article below provides more detail on pacing from an OT perspective.

https://jboccupationaltherapy.co.uk/pacing/

I have found that I have establishing a baseline of activity for the average day has helped me enormously. On a daily basis, I can generally, get dressed, do the washing up and put a load of washing in the machine with plenty of rest scheduled in during the day. Having worked up to this gradually, I find that I can achieve this on the majority of days however severe my symptoms are. For me, it is rare that I have a flare up that can stop me doing the above things. However, I am aware that not everyone’s experience of pacing with ME/CFS is the same and with symptoms fluctuating wildly (sometimes on an hourly basis), the above pacing scenario can seem like an impossible task because you don’t have the energy to implement it!

I’ll be the first to admit, that despite the pacing measures I use and have outlined above, I’m not really that great at pacing. I’m only human after all! Sometimes I really want to do something that rationally, I know that I am not capable of. In short I have FOMO (fear of missing out) and I want to live my life to the full. Also, when you are on a roll, it is very easy to continue until you are absolutely exhausted and with ME/CFS, you have no idea how long that exhaustion will last. This is the quandary those with ME/CFS face on a daily basis and there is no quick fix.

Luckily for those with ME/CFS, new guidelines from NICE (The National Institute for Health and Care Excellence) have been published in October 2021 . The recommendations on pacing and energy management can be accessed here (https://www.nice.org.uk/guidance/ng206/chapter/recommendations#energy-management )

The above guidelines take into account ME/CFS patient experiences on pacing and energy management, alongside peer-reviewed evidence from medical professionals, that together provide a much more patient-led experience. In my opinion, This is a really positive step in the right direction for people with ME/CFS to work alongside healthcare professionals to achieve positive results regarding pacing their daily activities and implementing a change in attitudes towards pacing and fatigue management.