Disability,  Ehlers Danlos Syndrome

Not the spoon theory

</p> <h4>A Spoon Theory Alternative</h4> <p>
Have you heard about the Spoon Theory? When my illness first started to take hold of my life, I already had this analogy to hand. I had seen it shared on social media by friends living with chronic pain. I have used it many times, sending people links to this explanation on the internet to save myself from having to explain an already well covered topic. Certainly these days, as my energy reserves are a limited resource, I have very little desire to reinvent the wheel.

However, a few times now I have come across people to whom the Spoon Theory does not make sense. Just like zebras all having different stripes, not everybody’s brain works in the same way. Those on the autistic spectrum, the more literal thinkers among us and others, can find the Spoon Theory a little too abstract to be a helpful tool in explaining life with a chronic illness. Why are we using spoons? Why does showering use one spoon on Monday and perhaps four spoons on Tuesday? To this end, I developed a slightly more simplistic analogy with a basis in real world experience.

So let’s talk of money.

Every activity that you wish to undertake today will cost you money. We’re not talking £3.15 for a teeny tiny pumpkin spice latte… You actually have to pay to leave your house to get to Starbucks in the first place. I’m not even talking about a bus fare – it now costs you money just to put one foot in front of the other. But we are getting a little ahead of ourselves. Days when you might have enough money for a social occasion are often few and far between. You do get paid interest every day though (and at a higher rate if you are resting or sleeping), but the less there is in your account the less interest you earn.

You wake up check your bank balance; you have £10 and you smile to yourself because that’s pretty good going. In fact you think this morning you might just treat yourself to a shower. It’s been a few days and although showering is expensive, it has its benefits too. You have your shower and check your balance again. Oops, you’re down to £4.90. How on earth did that cost so much? A shower is never just a shower, it’s:

  • Walking to the bathroom
  • Climbing into the bath
  • Washing your body
  • Washing your hair
  • Climbing out of the bath
  • Drying off
  • Getting dressed

And that’s assuming you didn’t do anything daft like forget to grab a towel. Everything has an impact on your finances. Oh, and did I forget to mention the exchange rate? It can fluctuate wildly day to day. Some days, walking might only be 1p a metre. The very next day it might be 99p, and there’s no reliable way of predicting it.

It’s evident that today’s exchange rate is pretty harsh.

We need to stop and consider the things you wanted to do today. Take a parcel to the post office, collect your prescription and clean the bathroom. It’s a Tuesday so you don’t have work today – which means you have the whole day to get these three small things done. Should be easy right? Sadly two of these activities involve leaving the house. From past experience it’s a very bad idea to leave the house having already spent half of your daily budget. Even if you don’t completely run out of money and become stranded, travelling home with only a few pennies left is pretty dangerous. However you do really need your prescription, having had to put off doing this task several days in a row. Speaking of which, you need to take some medication – but you can’t do so on an empty stomach.

Food preparation costs money (surprise surprise!) and on a day like today it’s probably best to grab a packet of crisps or something else that’s instant. That way it will only cost you money for travelling to the kitchen and reaching in the cupboard etc, instead of peeling, chopping, mixing, stirring or anything else. You really do have to watch every penny if you’re going to make it to the end of the day.

Food and medication sorted, it’s time to prioritise.

You’re on £4.50 which isn’t enough to venture into the great wide world, but you do need that prescription. Sending that parcel and cleaning the bathroom will have to take a back seat for now. Going for a nap will top up your funds, which is definitely the best plan of attack. You sleep for an hour which gets you an extra £1, and drive to the pharmacy. When you get there, both the disabled spaces outside the entrance are taken. You could park in the main car park and walk, but it would be more sensible to sit in your car and wait for a space. It would be nice to eat something proper later instead of more crisps, and maybe you could manage to clean just one part of the bathroom. Walking across the car park is frivolous expenditure, so you wait it out…

By the time you’re back home, you’re on £0.30. Yikes! You’re hungry, but you desperately need another nap first. When you have less than £1.00, things increase in price dramatically. You’re tired, in pain, it’s hard to concentrate – so everything you do costs even more. Go have a lie down and we’ll worry about food in a few hours, when you can afford to.

But do you know what?

I don’t have enough money left in my bank account to continue this analogy. I’m sure I’ve demonstrated my point well enough, but it was my intention to do a whole day. Before I go to bed I can continue writing a little longer, or sweep the floor so the house looks a little nicer. When you live your life like this, you are constantly choosing between activities. Go to the bank or post a parcel. Wash your face or brush your teeth. Eat or sleep. A lot of the time, you just can’t have both – and even when you can it’s only because something else has had to give.

So I guess that’s the end of my Spoon Theory Alternative. Does it make sense to you? Let me know in the comments below.

2 Comments

  • Scoliosismama

    This makes total sense. Sometimes the spoon theory doesn’t quite cut it when trying to explain to family and friends. I wish I could start my day with at least £10 but it’s more like £5.50 on a good day and most of that has been spent before midday! And let’s not forget about the days where you start your day in the minus (unarranged overdraft) and no matter how much napping, resting and literally doing nothing you do for a week straight it is hard to get the funds back up to a positive and healthy number. Constantly fluctuating like the exchange rate! I actually prefer your analogy to the spoon theory, it makes more sense and I’m sure most people can relate to it whether they live with chronic illness/pain or not. Another great blog post! Keep up the good work!

Leave a Reply

Your email address will not be published. Required fields are marked *