I didn’t know about the spoon theory until the last few months of my chronic fatigue syndrome. I’m not quite sure how I missed it. It makes so much sense, doesn’t it? We each have so many spoons a day – a lot less if you have a chronic illness – and we have to share them out amongst what we need to do that day: brushing our teeth, that’s one; calling our least favourite friend, that’s ten; hanging up the washing, that’s five.
It gives us a way to explain our illness – even if nothing can describe the full impact – to, say, an interested friend. Perhaps, more importantly, it helps us to understand and manage our illness better.
Rather than the spoon therapy I used the idea of a battery, an idea I got from the excellent book, Fighting Fatigue. Each day I started with a battery at a certain level of charge, say 60%, and as long as I kept myself from going into the red and flattening my battery, I would be okay. I found this concept very easy to explain to supportive friends and could give my partner a quick explanation such as ‘My battery’s low today’ when I needed to.
It also helped my understanding when the severity of my chronic fatigue syndrome increased and my battery level dropped to a 15 to 20 % charge: it quickly became clear to me how much more careful I would need to be to keep away from the dreaded red danger area.
Whichever idea you decide to use, get as comfortable with the concept as you can because one of the essentials of living well with chronic fatigue syndrome – or any illness where your energy is drained – is to understand your energy levels as well as you able.
If you’re there already – you’ve got the basics clear in your head and in your actions – you can start to play a little with these ideas and learn a little bit more how your body is now working. It’s only you who can feel what your body is like; it’s only you who can be the expert. And if you don’t do it, there’s a much higher chance of awful days and relapses. Here’s some ideas that helped me to manage and understand my energy better:
- What kind of battery are you? Are you like my android phone, warning me when my charge drops below 20%? Or like my iPad, which waits to the battery is below 10% before telling me? Or, perhaps, you’re like my laptop which suddenly in the midst of something important just STOPS. It may have a warning sign but I always miss it.
Which one are you like? What are your signs that you’re heading into the flat battery zone? And how close to your limit do they happen?
- Do you know what drains your battery fast? What drains your battery slowly? Just as streaming can take a tablet battery down quickly before you notice, what activities are draining you so quickly you’re right up against the danger zone before you realise?
Understanding your energy is not just about recognising that you have less, it’s about realising that different activities will drain you at a different rate. Which activities do you need to be cautious about? Which activities can you be more relaxed about? It may feel that everything drains you but over time, by observing carefully, you will be able to identify some of the subtleties.
- Do you know what gives you an extra spoon? What energises you? Sometimes it can feel like everything but everything is an effort when you have chronic fatigue syndrome but amongst all the things you do, there may be slithers of energy, times when after an activity you think ‘Oh, I feel ok, even a little better than before’.
What it is will be highly personal to you, it’ll frequently be what you enjoy, something you delight and love doing. What do you ‘hate’ and need to do in small bursts – or not at all; what do you love and can do for longer?
The severity of your CFS will make a difference to how this feels or how pronounced this is. When my CFS was at its worst, it felt more like even my favourite activities only kept my energy neutral; it was very hard to pick out what energised me. It took some time before I realised that I needed to be now looking more carefully, watching out for a half a spoon or a quarter of a spoon difference. When I was living a 70% kind of life, favourite activities could give me something more like a whole spoon or two.
- How well do you understand your body’s need to recharge once it’s dropped too low? It’s like having a very old iPad that takes ages to recharge – you think overnight is enough to take it from 10% to 100% but, in reality, it needs 48 hours to get back to its maximum charge. What is your recharge time? 24 hours, 48 or more?
I’ve just experienced this myself even though I am now healthy. We’ve just had a long weekend cycle camping in the Cotswolds. Instead of recovering the first evening of cycling as I expected, over twenty four hours later, I could still feel the effects of all the extra weight I’d had on my bike getting to the Cotswolds. I just hadn’t been able to recover overnight. Luckily I’d made sure we’d had a much easier second day – definitely a good idea – and I was able to take drastic action on our third day (Gary, my other half, carried nearly everything 😀) so we could get home. Of course, with chronic fatigue syndrome, it takes a lot less before your body is at its limit and recovery is more complicated.
Want to hear why I can now do such a crazy, energetic hobby? Have a look at my recovery story: I would have paid ten thousand pounds.
If you have two or three busy days, watch out as momentum may carry you through and you won’t realise the extent of how drained you are until an easier day comes. I don’t think I’d ever consciously said to myself ‘Avoid continuous days of extra effort’ when I had CFS but because I understood my energy well, I can now see I automatically did this. Well, that is until everything started to go wrong in the lead up to my major relapse….
- What helps to shift an activity from fast-draining to neutral? My partner – who’s very healthy – ‘doesn’t mind’ washing up but he’s a lot happier – and finds it less tiring – if he listens to a radio play whilst doing the dishes.
Gary – I’m just beginning to realise – has a whole plethora of ways he makes activities less draining and more enjoyable: he takes his time doing jobs – doing the gardening, doing DIY, hanging out the washing; he makes sure there’s no pressure to get the job finished – he just knows he will get there; he follows what he wants to do – if it’s sunny, he gardens; if it’s cold he does inside jobs; often I see him looking closely at whatever needs fixing – he’s mindful about what he does without ever doing a mindfulness course!
What Gary manages to do is still something I struggle to do – oh, that brain of mine – but can you think of anything that helps you to switch something to neutral?
Have a play with the idea of the battery or with having a number of spoons, and see what else you can come up with. Aim to gain one small insight after another until, without thinking about it, you have a whole repertoire of many, many ways you look after yourself. And don’t forget to tell me how you’re getting on or how this post has helped!
It feels like every time I write a post, I think of more I could write, more ideas I can mention so if you want to hear more about this topic, subscribe to email updates and you’ll hear (every two weeks at the most) when I write a new post.
In the meantime, want those five questions again? Here they are:
- What are your signs that you’re about to go flat? And how close to the limit is that?
- What drains your battery fast?
- What energises you?
- What is your recovery time?
- What helps you to change something from fast-draining to neutral?
Understanding and managing your energy is one of the keys to a better chronic fatigue life. It’s an area where you need to delve in, get comfortable and learn. For now, I’m just going back Doing something out of the ordinary? 10 questions to ask yourself. to mention how important it is to not have continuous busy days; what are you going to do?
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