To have M.E. is to have a body that is likely no longer able to produce energy at a cellular level properly anymore, amongst countless other things (some known, some still unknown.)
To have M.E. is to be dealt consequences for almost every action you make. You might reach a point where there is a small but wonderful list of things you can do without having to deal with a flare up of symptoms. But the nature of M.E, by definition, is that there is going to be an off-the-scale consequence from doing A Thing.
The triggers for these consequences, or reactions from our bodies, will vary from person to person. But they will also vary day-to-day for a single individual.
For some it will be putting in a shift at work that will see them have to deal with some kind of physical or cognitive consequence. For others it will be making their own sandwich. For others it will be having a bed bath.
To lessen the consequences, we have to really get to know our bodies. I know that a short video call is going to lead to a worsening of my already out-of-focus and blurred vision. I also know that sitting up for too long without my feet elevated is going to be a bit of a disaster! This knowledge allows me to plan my ‘activity’ more carefully, in an attempt to space out the actions that I now know will cause me more suffering.
I have to put on my big girl pants, as the phrase goes, and plan and pace and prioritise things as best as possible around the consequences I am to live with simply because I have M.E. It isn’t fair, but it is what is it.
Knowing these things is a form of acceptance. The knowledge is power; it gives us the ability to lessen some of the suffering we experience.
But of course there are so many days when M.E. cares not for any kind of pattern! It’ll through a paralysis episode at you for no other reason than you have M.E. Fun times!