BI Blog: Expanding on Spoon Theory

Spoon theory is here

When I first read the Spoons description of being ill, I thought That’s it exactly, surely every healthy person will understand now!  But I still read people dismissing it as whinging and not getting what is being described. And of course, it didn’t explain how to deal with that situation of limited energy. So this blog takes a few tentative steps to solving those two problems.

The Crux of the Problem

When somebody you know is ill or struggling, it’s easy to think ‘toughen up’, ‘make an effort’, ‘you’re giving up before you even try’. You may actually be sort of, sometimes right, but you also may not be right at all. By simply looking at someone, you can’t know how hard they are trying and what they’re capable of.

Just to complicate things further, if you are the chronically ill person, you probably also don’t know what you are capable of, because it changes day by day.

My Experience

When I first got sick I didn’t believe it. Having a brain injury, I was living in a half-haze most of the time anyway, so I just slid my attention away from the reality of illness. This meant I could avoid completely giving up hope, but it also meant that I kept doing ridiculous things. For example I’d go out to meet friends in town and get so exhausted that I couldn’t find my way home again. I couldn’t remember the route, couldn’t read train timetables, couldn’t understand bus routes.

Pushing myself in this way was harmful, but after a lifetime of living at normal speed I didn’t appreciate that I just needed to slow right down and rest. And while there were supportive people in my life telling me to slow down, there were also many people telling me to push myself, stop being lazy. To them I didn’t look ill, because they only saw me when I was well enough to leave the house, and I tried to hide symptoms until I was on my own.

Energy for the Sick and the Healthy

Eventually, I worked out it was like this. There are different types of energy:

  1. Easy, healthy energy
  2. Energy that you have to push for
  3. Harmful, desperate energy

Energy

  1. Easy healthy energy

This is the energy that you use up freely with no ill effects.

When you are healthy, you mostly operate with this kind of energy – you use it to go to work, hang out with people you like and look after your basic needs. It sometimes feels to a healthy person that these things are hard work, but once you push yourself to doing something, you don’t suffer any bad effects afterwards, and probably feel better for having achieved something.

In chronically sick people, this energy can be brief or non-existent. It might be used up getting out of bed and getting dressed. And that’s it.

  1. Energy you have to push for.

This is the energy that gets used when you make an effort, but has few ill effects. It’s a good energy to use, the one that enables you to do new things, take on new challenges.

For a healthy person it can take determination to go to a party where you don’t know anyone, or to go for a run early in the morning on a cold day, or to mow the lawn. A few side effects might be aches and pains or some awkwardness. Once it’s over, you feel fine, perhaps better for having accomplished something.

In a sick person, this energy is also brief, you might use it to read the paper or make yourself dinner, and then it’s finished.

  1. Harmful desperate energy

Using this energy causes physical damage that lasts for days/weeks. You should only really use this in exceptional circumstances.

Healthy people will rarely ever use it. If you talk to someone who has run a marathon, this is the energy they use. It involves pushing yourself beyond the exhaustion barrier, time and again. Afterwards, you are not just tired, you are destroyed, and your body is suffering for some time as it recovers.

A chronically sick person uses this energy a lot, it may be all they have. Because they are only doing simple tasks that should be easy, they don’t think at the time they are using harmful desperate energy, and often there won’t be the immediate physical symptoms that a person gets while running a marathon. It may only be when the activity is over and their body is in pain, leaden with exhaustion and they can’t think, that they realise they have overdone it.

Using the Right Energy

It took a long time to work this out, but slowly, and with many mistakes, I stopped using the harmful energy. I put restrictions on myself, on seeing people, on how many things I could do in a day.  I started using mostly the healthy energy, occasionally the push energy. It was the right thing to do, because it gave my body the rest it needed to heal. And I was lucky enough that it did heal.

But then, over the next few years, that belief that I shouldn’t do things became my disability. I wasn’t lazy, I hadn’t given up, I was just trying desperately to look after myself, to treat my body with kindness. Out of fear, I stopped using the push energy at all and my health stopped improving.

Once I realised that, I began to head in the opposite direction once again, to push myself, to take risks, to take on tasks I felt I was incapable of. Because by this point I had much better health, it was possible to actually achieve some of those things without ever using the harmful energy. And in doing those things, I gained in strength, optimism and my health improved.

 So to sum up

  • When you are very ill you need to learn how to slow down and stop forcing yourself to carry out activity way beyond your abilities.
  • As your health improves you need to start gently pushing yourself and finding out what your boundaries are.
  • There is no clear way of knowing when that change occurs, and it is not smooth or a clear point. Nobody else can tell you when that point is, but you will also struggle to recognise it.

How to Figure Out What You’re Capable of:

For a sick person:

Experiment – the only method that worked for me was to experiment gently, slowly increasing activity and doing so without stress or pressure – avoiding stress is especially important with BI, frustrating though it is, you need to be gentle with yourself.

Mistakes are ok – accept that you will sometimes get it wrong, and that’s ok.

Vary activity – for times when you aren’t feeling motivated or inspired, have a list of hobbies ready (see previous post on this: https://inkbiotic.com/2016/04/15/brain-injury-refinding-purpose/)

Listen to your body – one of the most useful strategies was learning to recognise the messages my body was giving me.  Mindfulness and meditation help with this a lot. Time spent just paying attention to pain and anxiety will help you learn to listen to your body and brain.

Other people – listen to what people you trust are saying, ignore completely what other people  are saying (they may well mean well, so no need to be nasty about it, just smile and ignore them).

For a healthy person:

Looking back to my life before I got the BI, it fills me with shock how much I didn’t do because I thought I couldn’t. I put up imaginary boundaries all the time: not taking jobs I thought were beyond me, giving up on learning new skills because I seemed so crap at them, being creative to the point where I got praise and then trying no harder.

When I was trying to recover, everything was so insanely difficult that I discovered just how much effort is possible. Not that I was a lazy or undetermined person before, but compared to the effort of learning to read again (for example) it was nothing. No effort at all.

Talent and intelligence are useful, but they are nothing compared with effort. Speaking as someone who has less intelligence now; I am way more able, have achieved things I never thought were impossible before the accident, just because I try so much harder.

I suppose what I’m trying to say, is when you get the urge to say to a sick person ‘try harder’, say it to yourself instead, because you are the one that definitely needs to hear it and they probably aren’t.

TL;DR If you aren’t the one with illness, you don’t have a clue what the sick person is capable of. If you are the one with the illness, you have only slightly more of  clue.

21 thoughts on “BI Blog: Expanding on Spoon Theory

  1. While not your main focus it is not the first time that the drug-crazed and the diseased have been ‘used’ as living bio-weapons.

    Contextually I think the most generic worthy part is the overcoming of false values our society lets us believe to overcome real obstacles!

    Nice essay, thanks for sharing!

    Like

    1. That’s definitely taking this to a new level! I agree with overcoming false values – it is difficult to decide and then stick to our own value system, but important in order to stay healthy and happy.
      Thank you for responding, glad you enjoyed the blog. 🙂

      Liked by 1 person

      1. Sure, but you did choose very good words for it, easy to understand and without distractions.

        Sadly so many younger ones have problems with understanding the real meaning before life gives the less genteel awakening kiss of sorts…

        Liked by 1 person

  2. I’m still trying to learn my limits. With fibromyalgia, it’s hard because the amounts of energy I have varies from day to day. Sometimes by a LOT. I usually push when I shouldn’t. It’s easy to try too hard because of all the people around who don’t understand what’s going on with me.

    I’m glad you’re doing better. Keep up the good work. 🙂

    Liked by 1 person

    1. Thank you. I wish we could have a force field we put up to protect from the ignorant comments people can make. Please look after yourself. Wishing you strength and peace.

      Like

  3. Despite being chronically unwell now for years I find it difficult to estimate my energy levels. People around me, mostly annoy me with telling me to exercise, get up earlier in the morning, think positively, oh exercise even more… Very frustratring. Good read. Thanks.

    Liked by 1 person

  4. What an amazing and necessary post. I loved the relative simplicity of the Spoons Theory, but I can relate to it on a smaller scale. I’m dealing with an unknown energy drain and in the midst of seeing doctors to figure out what’s what, but as of current date, I just deal with it. While I can’t claim to be as sick as the OP of the Spoon’s Theory (I believe she was dealing with lupus), I definitely have to make the choice between exercising, going to the mall, and/or getting writing/blogging done. It’s frustrating and doubly more so when friends/family don’t understand. Add anxiety and depression to the pile (which is more than likely another energy suck) and it’s a recipe for a disastrous mess. I love how this post breaks down the Spoon Theory even further and hopefully those who don’t have this energy deficit will understand.

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    1. Thank you very much for responding. I’m sorry you’re going through health problems, I hope the doctors figure it out soon and it’s something nice and simple. Wishing you a day of joy. 🙂

      Liked by 1 person

  5. Pushing myself in this way was harmful, but after a lifetime of living at normal speed I didn’t appreciate that I just needed to slow right down and rest.

    Finding the balance – it’s so hard – even after so much time passes, because somewhere, at least for me, there is still the “fight” – the disbelief, the shock and the denial – “this can’t be my life now!” – indignation. And this, of course, doesn’t help at all. And so, slowly, you take a few tentative steps forward, then rush ahead, then fall flat on your arse. Until recovery. And sometimes, life throws a few new curve balls into the picture just to remind.

    Right – firstly, thanks for the link to the article – it is a really great way of explaining – or trying to get people to understand just what the hell is going on, especially if, like me, you look completely “normal” – mostly.

    And wow! Your expansion of the energy idea? It’s really brilliant. It really is.

    You’ve completely nailed it – understood how “energy” is normally used, the “push” energy and then, the harmful or over the edge energy. Simple and straightforward – you have a great gift for explaining this stuff. Really. you should consider yourself a voice and advocate for those who have suffered or experienced similar events and circumstances.

    As for your own personal journey? I’m glad to hear that you have been able, over time, to really work through so much of the really hard stuff. And come through – and have been, as such, to reclaim a life – maybe new, and different, but at the very least, it sounds rewarding and positive. (Not that I’m suggesting that you don’t have bad days, or that the energy factor isn’t there – it is. And it can be tough.) But honestly, my friend, you really are remarkable. And I can’t help but feel a bit better and cheered when I read your posts 🙂

    hope your weekend was wonderful and the week starts and continues in great fashion 🙂

    Liked by 1 person

    1. Oh! What a lovely comment! It means a lot that you understand what I’m trying to say – it always seems so clear in my head, but I worry that it doesn’t make sense outside of my head (IYSWIM)
      I am very lucky these days, and it helps to remember it. I hope you are getting the help you need. It can be difficult if you don’t look ill, to convince people to help you.
      Have a wonderful day too, and look after yourself 🙂

      Liked by 1 person

      1. thanks 🙂 truth be told, I mostly have to just fend for myself. I really don’t have a support network, but I manage – and maybe, sooner than later, I’ll be able to get things kicked into a better place – but nonetheless, a day that I’m vertical – even if I feel like a troll, is still a “good” day – and I’ll “work” with that as best I can. 🙂

        Have a wonderful start to your week – hope it is brilliant and that you too are well and in a good place/space 🙂

        Liked by 1 person

      2. I’m sorry you’re not getting the help you need. I wish I could help, but if you ever feel the need to vent, I can send you my email – probably not that much use, but sometimes knowing someone is around to listen is useful… Wishing you a bright and easy day 🙂

        Liked by 1 person

      3. Thanks 🙂

        Well, it’s not an easy thing, sometimes, but although it sounds “awful” to say, “I’m used to it” – it doesn’t mean that I’ve given up. And so it’s all good. But thank you 🙂

        Liked by 1 person

  6. This is awesome. And explains it perfectly.
    I had a hard time understanding why on some days I felt “fine.” On others, I could barely make it out of the house.

    Coworkers would notice the good days and many think I could always be there.

    After I retired, I still see them when I go to the VA. “You look great. Why did you retire?”

    Liked by 1 person

    1. Thank you for replying, and yes, that’s exactly the problem! I hope you’re doing better now you can take it a bit easier. Wishing you a lovely day 🙂

      Like

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