Last month I was lucky enough to go on a fabulous Rest, Recover and Repair retreat, run by my very wonderful friend, Suzy Bolt. As an early sufferer, Suzy set up a programme to support those with long covid in their recovery – through gentle yoga, mindfulness and so much more.
And so I found myself sitting in the faded elegance of the library at the stunning Oxon Hoath country estate with 24 women living with long covid. To be clear – I don’t have long covid. However, despite some consequent early nerves about being an ‘interloper’ at the retreat, it took only a few conversations to realise that there are many things that those going through cancer treatment have in common with those with long covid. Not least, we need time and space to rest, recover and repair the damage done to our bodies – and minds.
Damage which causes, amongst other things, chronic fatigue.
For those experiencing long covid, as for those on a cancer treatment journey, fatigue can ebb and flow. Recovery is not necessarily linear. This can be deeply frustrating for us to come to terms with and challenging for those around us. From the outside, it’s hard to understand how one day we might seem almost normal again but the next have to cancel all plans and take to the sofa. How do we structure our lives around that reality and also, importantly, communicate it in a way that others can understand and appreciate?
That question was answered for me when several of the wonderful women on the retreat introduced me to the ‘spoons theory’.
Imagine that each day you wake up, and on your bedside table are some spoons. For a fit, healthy, young person there might be a tumbling pile of shiny spoons - too many to count.. In contrast, someone with a chronic health condition might wake to a scattering of only eight dull and dented spoons.
Imagine too that we have to ‘pay’ for each of our routine daily activities by handing over spoons. For example, taking a shower might have a ‘cost’ of one spoon. Walking the dog, two spoons. Making a meal, one spoon (…skipping a meal, one spoon). Chatting to a friend for half an hour, one spoon. Meeting a friend for coffee, two spoons.
To make it more complex, neither the number of daily spoons or the 'costs' are necessarily fixed.
For example, the exchange rate can be liable to unanticipated inflation. Going to the shop might usually be a two spoon activity. But make the mistake of going when it is really busy, when you can’t park close by, and you have to stand for five minutes in the queue to pay might turn it into a three or four spoon outing. A flat dog walk might usually be a one spoon activity, but throw in a couple of hills and it can take two or more.
Similarly, in my experience, the exchange rate might fluctuate from day to day. One day, routine daily tasks might cause me little problem, but the next, I might come off a call mid morning to find that my pocket is suddenly empty of spoons, and I am good for nothing much for the rest of the day.
And some days I might wake up with 15 spoons, and the next have only six. At the start of last week I had energy. At the start of this week, I have very little.
When you are healthy – you don’t need to count your spoons. The luxury of health is the freedom to reasonably assume that you have as many spoons as you need in any one day to do all that you want to do, without thinking about it. There are no daily choices about what to spend your energy on.
But when you know you have a limited number of spoons for the entire day, how do you prioritise between activities? Once spoons are gone they are gone. While we might be able to ‘borrow’ from tomorrow’s spoons, we then need to be aware that we will likely wake tomorrow with fewer spoons on our bedside table. As a result, the chronically ill and the energetically challenged have to think ahead, deciding what to spend their spoons on each day – deciding what they can and can’t afford to do.
And so we look for coping mechanisms. How can I streamline my spoon-robbing activities? Supermarket deliveries, asking for help, getting the kids to cook from time to time all have their place. But I can’t outsource my whole life.
I also do what I can to try to improve my energy by following a lifestyle medicine approach - ensuring my diet is good, taking appropriate exercise, trying to get a good night's sleep. These activities may not necessarily serve to increase the number of spoons by my bedside on any one day – rather to polish up those that I have a little, potentially improving the activity to spoon exchange rate.
One of the hardest things for me since diagnosis has been having to learn to slow down, to say no, to adapt to reduced energy levels. I have not mastered it. Far from it. Obviously for big chunks of this year, I have not had a choice - treatment has laid me flat out and my spoon stock has been seriously depleted. But at other times, my treatment regime has been less comprehensively toxic, and my spoon pile has grown a little. This is where I am now, and this is my danger zone.
My dear mum engrained in me that resting in the day was in some way unforgiveable. I hate feeling like I am missing out. I hate feeling that I might be wasting my precious life sitting on the sofa. I hate feeling like I am letting friends down by not committing to or cancelling arrangements. And I hate thinking that, if the worst comes to the worst, the kids will remember me as someone who doesn’t do very much and always seems tired. It grieves me to think that this might be the case.
And so, too often my tendency has been to ignore the number of spoons on my bedside and to try to do too much. And that leaves me feeling broken.
But I know that the sustainable way through this is not to just 'push through' as can be my inclination. That will just prolong my recovery period. Instead I am having to learn to recognise that every time I choose to do something (even the good stuff!) I 'spend' a little part of myself. I am having to learn to embrace being someone who (for now at least) regularly goes to bed before 10pm, who doesn’t drink, who says no to activities and people and who sometimes lies on the sofa during the day. There is a bit of me that still judges myself for being not much fun - but hell, I'm very much alive, and so it's worth it.
Counting spoons is a really good way to self regulate, to plan out my day and to explain to others why, although I might look a lot better on the outside, I still need to protect my energy levels and make active, daily choices about what I can and can't do.
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