Since my Guillain-Barre Syndrome diagnosis, one of the the things I’ve noticed is that people often don’t consider me to be ‘sick’ or disabled if visually there is nothing wrong with me. Huge assumptions are made based on how I look. I don’t have a wheelchair or walking aid so it’s assumed I don’t have any difficulty getting around. I can walk down the street seemingly ok, so therefore I must be able to walk normally all day without any problem. What people fail to consider is that whilst I’m walking around I’m also in pain and becoming increasingly fatigued. Its like I have a timer above my head that only I can see, and for every second I’m walking it’s counting down the time I have left before I need to stop and rest. If you’re fit and healthy you don’t have a timer because you have more than sufficient energy and strength to continue through the entire day without having to stop abruptly or needing to nap.
I struggled to explain to friends or work colleagues why I couldn’t go to that party at the weekend because I’ve been working the day before or why I can’t just stay an extra hour at work to help them out when they need it. So when I stumbled across an explanation called “Spoon Theory” I was relieved I finally had a way of explaining it in a way that was easy for others to understand.
Imagine as a healthy person you have an unlimited amount of spoons you can use during the day. Every task you complete costs you a spoon, but that’s ok, no need to worry because you have unlimited spoons. Life is marvellous.
Now imagine you get sick. You can no longer function as a ‘normal’ healthy person would. Your energy levels have become seriously depleted. Your unlimited spoon supply is no longer unlimited. You only have TWELVE spoons to get you through the day. Now you have to start thinking about what tasks you need or want to do today. Want to go meet a friend for coffee? Great, lets do that. That’ll cost you three spoons. WHAT?! Oh and that’s not including the tasks you’ll need to do before you get that coffee. I hope you don’t need a shower before you meet your friend because that’ll cost you another spoon. Need to get dressed or will you go in your pyjamas? That’ll cost you another spoon……now do you see how this works?
Suddenly everything you do needs to be carefully considered and pre-planned. That coffee with a friend will cost you a serious amount of spoons. So plan it wisely. How can you save some spoons? Could your friend give you a lift to the coffee shop to avoid you walking? She might think you’re just being lazy so you’ll need to explain how spoon theory works. Could you schedule it for a day when you don’t have many other tasks to do? Could someone make your lunch for you before you go? That’ll save you cooking which by the way, also costs a few spoons.
By now you should be starting to grasp the concept of spoon theory and the HUGE impact your lack of spoons is having on your day. Some tasks are unavoidable so you’ve no choice but to spend a spoon. I live alone so I do my own laundry, cooking and housework. I can’t afford a cleaner because I’m only able to work part time. If I want to eat, that involves cooking, eating and cleaning the dishes afterwards. All these tasks cost spoons. Then just when I think I’ve mastered the art of spoon saving I end up catching a cold or I forget to take my medications or vitamins, or I might not have been able to get a good nights sleep. Any of those things will take away some of my spoons. So instead of starting the day with twelve spoons I now only have 8 or 10. Sure, I could borrow one or two spoons from tomorrow but that only makes tomorrow even harder.
So if you’re like me and find yourself struggling to explain how your illness affects your day to day life then use the spoon theory with your friends. If you’re a friend of someone with a chronic health condition that might seem to look fine to you then think again. Life is very different when your spoons are in short supply. A little help goes a long way.