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What do spoons have to do with my chronic illness?

Updated: Jan 9, 2021

When you have chronic illness you might have to live with a different level of energy compared to healthy people. You will have to adapt to this situation and doctors might tell you to start "pacing". But what's that? And what do spoons have to do with it?

People who suffer from ME/CFS have a limited amount of energy available. Compared to healthy people, we need to be much more careful with how we use our energy, because we don't have so much of it and we simply can't afford to use it for "unimportant" things. Of course, what is important and what's not is very individual.

The main reason why pacing is so important is the fact that with overexertion our symptoms get worse. If we exhaust ourselves too much, may that be physically or mentally, this will make us feel very bad afterwards. Depending on how much we went over the line, we might end up unable to get out of bed for a couple of days, while we experience terrible pain and an overall feeling of malaise. Some people call this a "crash". And a crash needs to be avoided for a few reasons:

1- It is horrible to experience. Nobody likes to lie in bed for days, being in tremendous pain, unable to enjoy things as simple as watching TV or reading a book. It's not only very painful physically, but also hard to endure on a psychological level. With one word: it's depressing.

2- It can keep us from maintaining our general condition

When my doctor told me about pacing he told me this:

It is important to get at least a minimal level of activity every day, whatever the minimum is for you. It might be a few minutes of moving your legs, a little bit of mental activity or a little walk outside, whatever your body allows you. But if we use all of our energy that we have for a week in one day, we won't be able to do anything for the rest of the week and we might end up lying in bed for days. But lying down for long periods of time can make other symptoms worse like low blood-pressure or muscle pain, so minimal activity- on whatever level is possible- every day is necessary to keep our body (like our cardiovascular system) from getting even worse.

3- It may lead to a long-term aggravation

If you constantly go over your individual line and use too much energy for a long time, it might at some point worsen your condition long-term. If you don't listen to your body and repeatedly force yourself to activity, even if every cell of your body tells you to rest, you might experience very bad consequences at some point. There might be a crash someday, that you can't get out of anymore. I know this, because it happened to me.

You might think: "How is it possible to keep that balance between activity and resting? Isn't that very difficult to find?"

Oh, absolutely. Getting enough activity but at the same time needing to avoid doing too much- that's honestly the most difficult thing about this illness for me personally.

The hardest thing for me to learn (and I'm still in a learning process every single day) is to ration my energy.

So what is pacing and how do we learn it?

If you have to ration your energy in order to protect yourself from getting worse, this is called pacing. If you are new to this whole world, pacing can be a very abstract concept and difficult to organize. How can you learn to pace yourself, when there are so many things to do? It is nothing one can learn within a few days, it can take months to really figure out the appropriate level for you. But thankfully, there are strategies to help you out with that- like the spoon theory!

When you have to start pacing, in the beginning it might be helpful to start a journal to keep track of your activities and calculate around your energy as if it were a currency.

When you suffer from chronic illness your energy becomes the most valuable currency that you have. So in order to organize your life around that, someone came up with a model, a symbol for this currency, a unit if you will. So imagine: one unit of energy = a spoon!

You can start calculating with it as if it were a real currency.

How do you calculate with this currency?

First of all, you need to find out, how many spoons you have in total. Say, for one day you have 10 spoons.

Then you want to find out how much spoons every activity requires.

Checking your Messages and E-Mails: 1 spoon. Getting a shower: 2 spoons. Cooking: 4 spoons. Going shopping: 5 spoons, and so on. With this example you can see that you already need more spoons than you have for a day- you have to go shopping on another day.

This model can help you visualize how much energy you have and how many things you need to get done. It can help you distribute your activities for your week.

This calculations are very individual of course, and different for everybody. One person might feel that taking a shower costs only one spoon, while for another it might cost three. Others might think they have 15 spoons or 30- you are the one who knows your body best, so you determine the numbers.

The model is so well-known and easy to understand, that people with chronic illness often refer to themselves as spoonies! :)

If you want more informations and examples, check out the article on ME-Pedia:

This model can be very helpful in the beginning of journaling and keeping a protocol of your life. You can add as many things to your journal as you like, and collect any data you want with it. You can use it to observe your sleep, your diet, your medication, your mood and much more. If you use a smart watch you can even track your heart-rate, sleep data and your daily step count. All of these things can show you, how much activity is good for you and how much is too much. It might help you find correlations between certain activities and worsening of symptoms and ultimately understand your own body better.

To find out, which model of tracking your symptoms and which amount is good for you, you kinda have to play around with it for a while, try out a few things here and there to find out a level that you are comfortable with and that you can keep up.

Just be open to experiment a little and don't be too hard on yourself if you can't figure it out right away. This might take a while to get used to and that's ok!

Remember: you don't have to make this perfect for anyone, the only person you are really doing this for, is you.

So anyways- now you know why people suffering from chronic illness call themselves spoonies!

Are you a spoonie? What things helped you in the process of pacing? Feel free to share in the comments or contact me per E-Mail!


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