There is nothing new in this statement. There is even specific ME/CFS terminology for it: staying within our ‘energy envelope’! But the fact is that it’s extraordinarily difficult to achieve. However I believe that if we were only to focus on one illness management goal, this would have to be the one. The more we can keep within our energy envelope the better chance we have of improving our health.
So what’s involved in this apparently simple goal?
- Reaching an acceptance of the illness so that we can focus on the reality of our situation.
- Learning to recognise daily energy level and how it changes often unexpectedly form day to day.
- Learning to recognise our baseline of sustainable activity and tying that to our day’s energy level to get an idea of what we can do each day.
- Staying constantly aware of any changes to energy levels and paying particular attention to when things become an effort.
- Recognising any unusual demands on our energy (stress/ excitement/ hormone changes/ infection) and taking them into account.
- Being aware of how our emotions can fool us into not listening to our body, e.g. the day after having a really good day you often don’t notice how tired you are because you’re still buzzing on how much you were able to do!
- Being able to stand up to those around you who don’t understand you’re illness and are expecting too much from you. Learning how to say: ‘No, sorry, I need to put my health first or I’ll be even less able to contribute in the future’.
- Letting go of the need to feel useful; reaching an understanding that we are innately worthy no matter how little we may be able to contribute right now.
- Finding new ways of being happy that are possible with the limited energy that we have.
- Being kind to yourself.
Not that simple is it? I hope some of my links are helpful. Let me know if there’s something you are struggling with that I haven’t mentioned.
