There are many difficulties with having a chronic illness like ME/CFS, such as pain, fatigue, emotional lability, brain fog, sensitivity to light and sound, the multitude of other symptoms, not knowing what symptoms are going to hit you today, trying to get medical professionals and disability assessors to take your condition seriously, feeling frustrated when you can’t do the things you want to, feeling guilty when your friends and family have to do things for you …
Coping with all of this is not easy. There is no cure yet, although there are medications that may help with some of the symptoms. Often it’s hard enough just getting through each day, and the basic strategy for this is to manage your energy levels. These are much lower than those of healthy people, and the more severe your condition, the lower the energy. There are different extents to which people have ME/CFS, so something that a ‘mild’ sufferer can do may still seem out of reach to someone whose condition is severe; but the same principles apply.
Several books and leaflets suggest thinking of your energy as money, and realising that you don’t have as much to spend as most people. Trying to spend more than you have just takes you into debt, as the excess has to be paid for – with interest. An alternative to money is thinking of having a number of spoons that represent your energy for a particular day, and realising that whatever you do is going to take up one or more of these spoons; hence the term “spoonie” for a sufferer.
It can be hard for healthy people to see the cost of what to them are everyday actions. For an example of this kind of cost, have a look at this blog post by Anna Jones about the steps needed in cooking fish fingers. Think about how it would be if you had to count the cost of each one of those steps instead of taking them for granted, if each of these took up a spoon or two from a limited supply.
So we spoonies manage our energy, or at least try to. Doing so effectively should reduce the pain, fatigue, and other symptoms, and saving a bit of energy each day means we may be able to do a bit more tomorrow. We need to think about everything we do, or want to do, or are asked to do, and decide whether we’ve got the energy to do it. This means, sadly, saying ‘no’ to a lot of things that we would like to do, or that we used to do, or that other people expect us to do.
Sometimes, of course, we don’t manage our energy successfully, usually because we try to do too much, especially on a day when we feel a bit better than usual, when the major symptoms seem to have subsided for a while. That’s when we end up paying for it the next day, and the day after that,and …; when our bodies feel as if we have taken out too many payday loans.
But sometimes we deliberately do more than, strictly speaking, we are capable of, and do so in full knowledge of what it might cost us in the days to come. Sometimes there is something that needs to be done which is so important to us it takes precedence over rest and energy management.
When Jesus saw people putting money into the Temple one day, he praised the poor widow who put in a couple of small coins, even though it was “all she had to live on” (Luke 21:1-4). So what was the widow going to live on for the rest of the week? What sacrifices had she made in order to be able to give this gift? Whatever they were, she obviously felt that they were worth it, that it was important to give that money on that day.
So from time to time we spoonies do the same. The result will be as we expected: overwhelming fatigue, increased pain, brains completely fried. But some things are worth frying your brains for.
Which brings me to the spoonie version of the serenity prayer:
God, give me the stength to do the things I really need to,
the courage to say ‘no’ to the things I don’t,
the wisdom to know the difference,
and the serenity to accept this way of living.