I am exhausted. Not the kind of tired you get after working too hard, fixed by a good holiday. Nor the kind of shattered you get as a parent running round after small children, fixed goodness knows when. Or the kind of fatigue you get after running a race, longing for a chair to collapse into.
It’s more like the kind of exhausted you get after a bad virus, where your limbs are heavy and getting off the sofa feels like exertion. Where you wake up exhausted and go to bed even more so. But even then that only works if you’ve been getting over a virus for the last six years. That in essence what life is like for me living with ME otherwise known as Chronic fatigue syndrome. But this persistent fatigue is likely one we share with our cousins with various chronic illnesses.
And so may I introduce you to ‘spoon theory’. This is a theory used by the chronic illness community to explain what life can be like with chronic conditions. The idea is you only have a set amount of spoons each day, a number which may be less than normal if you’ve slept badly or missed medication. Every activity in your day takes a certain amount of spoons, whether it be getting out of bed, getting dressed, going to the shops, going to work. Once you’ve used up your spoons they are gone, you don’t get any more. The question becomes how do you best use your spoons?
It may sound like silly illustration, it’s hard to care a lot about cutlery. But it’s a metaphor that illustrates the kind of complex calculations you have to do when you’re living with chronic physical or mental illness, and have limited energy and capacity. No decision is straightforward or without repercussions.
This last fortnight I have been in a bad flare of fatigue, I am completely exhausted with less spoons than usual. Whatever the trigger for this particular episode it’s brought into sharper contrast because recently my ME has been relegated to the background by an eating disorder.
Over last year eighteen months or so the eating disorder has been holding all the spoons and lying about how many we’ve got. She was always on hand to assert that we had enough spoons for that long daily walk, no excuses accepted. Day by day becoming less in tune with my body, ignoring what didn’t fit with the narrative. She’s been playing fast and loose with the calculations, running up debts that we can’t afford and she never intended to pay. From the outside it looked like my spoons had multiplied, in reality they were dwindling by the day.
The problem is that despite how destructive an eating disorder is it did allow me to maintain a life closer to my perception of normality. I liked my long daily walks and the freedom they gave me. You have to understand the unrelenting grind of chronic fatigue to see why giving into the eating disorder became so appealing. It’s so all consuming there’s barely time to register you’re tired. And in place of your spoon calculations there is simply a set of non negotiable activities.
The thing is I desperately want some more spoons. There is no cure for ME and most treatment centres around managing the spoons you have. There is no magic spoon fairy to swoop down and give you some more. It’s an illness that is poorly understood or accepted by the medical community. Previously it’s not been the kind of chronic illness anyone cares about. That is until long Covid came on the scene and post viral chronic fatigue started making the headlines. It was cathartic watching the medical community, many of whom have denied the existence of chronic fatigue, have to bow to the overwhelming evidence. But still I doubt that this interest and thirst for research will benefit those of us who have been putting the chronic in chronic fatigue for years.
I feel like all the time I have to say how lucky I am to not have it worse. That I get to get out of bed and hold down a job. I know that’s a privilege many with my illness don’t get. But honestly some days I don’t feel lucky. I just feel done. Done with juggling spoons, those careful calculations. I just want to wake up in the morning with energy. For just a few hours where the first adjective I use to describe myself isn’t ‘tired’.
But there is always much to be grateful for. I am blessed to be able to spend time with family and friends, for those who find fatigue friendly activities we can do together. I am thankful for an understanding workplace that means I can keep doing a job I love. I am grateful to have a safe home filled with lovely things and a sofa to sink into on the days when fatigue is heavy. And for a furry friend who’s a big fan of naps herself.
Life rarely deals us the cards we would like. It’s okay to feel frustrated about that, to grieve for how life could have been. We don’t have to deny our feelings and pretend to be thrilled with whatever difficult situation we’ve been confronted with. But sooner or later we have to dust ourselves off and muster our courage to make the most of the life we have now. Which is why I will go back to managing my spoons, appreciating the things I am able to do. And whilst there may not be a magic spoon fairy there is a God who loves me, who could one day shower me with spoons.