With a chronic illness like ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), one of the most important things we need to learn is how to live within our energy envelope. Most of us try not to overextend ourselves because of our experience with unwanted consequences when we do. At the beginning of living with ME/CFS, we might also appreciate the wisdom of the recuperative nature of rest, but as our illness becomes chronic and recovery doesn’t come as quickly as we were hoping for, our focus tends to shift towards getting at least some semblance of a life back. When it comes down to it, pacing and living within our energy envelope is more often motivated by getting as much as we can out of the now, rather than a belief in the possibility of healing.
Living with ME/CFS and Hanging Onto The Edge
When life is so restricted, it’s totally natural to want to do whatever you can to get what little you can out of it, thus most of us play a dangerous game of skirting as close as possible to our energy boundary. The needs of our spirit often seem to be in conflict with what our body needs, and we often find ourselves dancing precariously close to the precipice of a crash, flare or relapse. Even if we get nimble enough to hang on to the edge as we fall, there’s always a risk that one day our fingers will slip.
There is no doubt that rest in itself is not a cure for ME/CFS, but because of this, there is a temptation to undervalue it as our illness becomes chronic. We refocus on doing what we can do to make the most out of the situation we’re in and tend to see rest as something we have to do in order not to feel worse.
This week I had an epiphany. I realized that with all my illness management skills, I’ve gotten really good at giving myself the best life I can with the energy that I have, but I get as close to my energy boundary as I feel I safely can in order to get the most out of life. Although I aim to be careful enough not to risk being pushed past my limits by unexpected events, I’ve been forgetting to save a portion of my energy for healing ME/CFS. My symptoms are very mild, and I have a good life, but I haven’t really been making a great deal of progress.
I do invest energy in healing. I invest it in meditation, tai chi, yoga, and preparing healthy food, but I tend to use all the extra energy I gain from these pursuits to live a bigger life at a sustainable level. But what if I didn’t use all that energy? What if I saved a bit more of it for my body? What if I allowed myself to rest enough not just so that I wouldn’t get worse, but so that I actually had a chance at ME/CFS recovery.
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It’s my belief that hope for recovery of chronic illness shines brightest at the level of giving the body as much support as possible, so that one day it will find the answer itself. I trust that the human body understands the complexities of healing far better than any scientist, and that it is always doing its best to heal. I work on the basis of aiming to offer it as much support as I can in its healing efforts, but then when it comes down to it, I’ve been stealing some of the energy it could use for healing so that I can live a bit more of a life.
My goal now is to remedy that with extra rest, to make sure I keep a slice of my energy for my body to use on getting better.
It is so tempting to live life at the limits of our energy envelope, especially when we’ve been missing out on so much for so long. But we need to balance that against our desire for progress and recognize that a little more rest than we seem to need to get by could play a valuable part in that progress and reducing ME/CFS symptoms.
Do you keep enough distance from your energy boundary?
This article was first published on ProHealth.com on December 5, 2015 and was updated on May 21, 2020.
Julie Holliday is a holistic life coach and writer committed to helping people overcome their challenges and live a great life despite chronic illness. Writing as the ME/CFS Self-Help Guru, Julie shares tips on her weekly blog. You can also follow her on Twitter and Facebook. To find out if Julie’s coaching could help you live a great life despite chronic illness, book your FREE introductory consultation here. (10 available each month).