SPOONS: LIVING WITH FATIGUE

by Alice Thomson

Have you ever been tired? Sure you have – but it’s no big deal. You might have a sit down, drink a coffee, maybe take a nap. Now – have you ever been fatigued? I’m not asking you the same question, much as it might seem like it. Fatigued isn’t the same as being tired. Although often considered to be similar, there’s actually a big difference between the two. The dictionary tells us that tired means we need more sleep or rest. Fatigue, on the other hand, is an extreme form of tiredness caused by physical or mental activity, or by illness. I don’t think this definition of fatigue quite does it justice so I’m going to put forth my own interpretation by discussing fatigue as caused by illnesses such as chronic disorders.

If you know someone with a chronic illness you may have heard them talking about spoons. They may even call themselves a ‘Spoonie’. So what on Earth are they on about? The answer is the Spoon Theory, which was developed by Christine Miserandino in 2003 to help explain how fatigue, pain, and disorientation affects someone with a chronic condition on a day-to-day basis. This is particularly true of someone with an invisible illness, where pain or other symptoms may not be obvious. It goes something like this:

Imagine that when you wake up in the morning you have only twelve spoons. No more, no less. Every activity will cost you at least one spoon. How are you going to spend those spoons? Get out of bed – well, getting out of bed can be hard, particularly if you’re in pain and you want to get out of bed safely, so that’s one spoon gone. Are you going to have a shower next? Well, that’ll cost you two spoons – one for the action and one for spending energy on doing it safely. You don’t want to fall over in the shower, especially when you have a chronic illness. Even simple things like washing your hair or drying yourself will cause problems.

Now you’re out of the shower and it’s time to get dressed, so hand over two more spoons. Again, you need to be careful – buttons, zips, and clasps all bring extra challenges. Breakfast is another spoon, and it’s nothing special – we’re talking just plain old cereal and milk.

(via theunchargeables)

All that’s done and you’re ready for work. This one’s going to cost you at least three spoons, thank you. No task will be completed perfectly. Mistakes will be made, and you will feel terrible throughout the day. Not just from the fatigue – your self-esteem will be at an all-time low because you know you can do better. No socialising at lunch, no friendship forming. Eating and resting will be the only activities to get you through the rest of the day.

So at the end of your shift there are maybe two or three spoons left – if you’re lucky. What will you do with these? Go out for drinks after work? I don’t think so, not unless you want to borrow some of tomorrow’s spoons – and where would that leave you?

Imagine talking to your boss and not being able to remember the word ‘assignment’ or ‘deadline’. You’re probably going to leave that conversation hoping your boss isn’t reconsidering your employment.

Let’s not forget that this is a day without incident. You didn’t dislocate your hip getting up from your seat. You didn’t faint making a cup of tea. You didn’t twist your ankle going down a step. Your IBS isn’t playing up, keeping you stuck in the bathroom. All these things rely on your body, so even if your body works you still have to worry about the rest of the world and things like car trouble, arguing with your partner, meeting a jerk stranger, your boss giving you work to do at home, or even something as random as the kids next door kicking a ball into your garden greenhouse.

Let’s get back to talking about what we mean by fatigue. Again, it’s not just being tired. We live with tiredness at some point every day. Fatigue is not just sleepy eyes. Fatigue is in your muscles, in your bones, in your marrow. Your limbs feel weighted with it. Any movement is hard. It affects your cognition. It’s as if someone took a whisk to your brain, leaving you unable to think straight or recall the simplest words or facts. It can be very embarrassing. You feel stupid. Imagine talking to your boss and not being able to remember the word ‘assignment’ or ‘deadline’. You’re probably going to leave that conversation hoping your boss isn’t reconsidering your employment.

The Spoon Theory is a great way of explaining how you’re feeling to your friends, family and loved ones.

A good sleep might seem like a great way to counteract all this, but trying to get a good sleep can be hard. If your health condition means you are in a lot of pain, then sleep is no easy feat. You might be on prescription drugs to help you sleep, but more often than not they will make you feel hungover in the morning – without even the fun of the night before! It’s not a good way to start the day. Other painkillers will have an impact on your cognition. Some people with chronic pain will use Gabapentin or Pregabalin – two drugs that directly affect your brain and can cause a huge amount of cognitive problems. It can make it impossible to drive a car to work, let alone actually be productive during working hours.

The Spoon Theory is a great way of explaining how you’re feeling to your friends, family and loved ones. Often people with chronic illnesses worry they’re complaining too much about their condition, so to be able to say to friends ‘I’ve run out of spoons’ or ‘I’ll try, but I’m really low on spoons’ means that a person in this position can explain how they’re feeling without worrying that they’re moaning.