How do you describe what it’s like to live with myasthenia gravis? I’m trying to give people a sense of this with 365 Days of Myasthenia, however wouldn’t it be fantastic if there was an easy anecdote you could share whenever someone asks you that very question rather than having to explain how it affects each part of your life? That’s what the spoon theory attempts to do.
A few weeks ago I was confused about a hashtag people with myasthenia, particularly in America, were using to tweet – #spoonie.
‘What does #spoonie mean?’
I asked the global audience on Twitter and I was sent a link to this website.
To summarise, a girl is asked by her friend what it is like to live with a chronic illness. They’ve been friends for a long time and she’s baffled by the fact that her friend hasn’t grasped it. To demonstrate what it feels like, she gives her friend eight spoons. For any activity that she does, from brushing her teeth to walking for the bus, from phoning a family member to making food for dinner, she has to give up a spoon. The aim is to try to spread out the spoons throughout the day so that she is able to do what she needs – from getting up in the morning to going to bed at night. However, her friend quickly realises when describing her typical day, that she would be running low on spoons very quickly. The friend with the chronic illness physically removes each lost spoon from her friend so that she really feels the depleting pile and when the stock runs really low, grasping what all this really means, she gets upset.
Spoons are obviously a metaphor for energy – it takes a lot out of someone with a condition like myasthenia to do simple tasks and we have a finite resource to spread out across each day. The website is called ‘But you don’t look sick’ and that is part of the problem for many conditions – because you don’t look sick people can’t understand that you have less to give sometimes. We sometimes don’t help ourselves by trying to hide that we are tired or low on energy. We try to push ourselves to do more than we should. However, as the spoons theory describes, we are then borrowing from the next day’s supply.
While the version of this anecdote on the website is a bit longwinded, I think the metaphor works well. I find that the amount of energy I have fluctuates, but there are days where my legs feel too heavy to move, I can’t stop yawning even though I’ve had eight+ hours of sleep and I need to take regular rests. Everyday life becomes a challenge and my energy supplies are limited. People struggle to believe this because I force myself to do exercise, but there are plenty of occasions that my legs are like lead. On these days, I’ve learned that forcing myself to do more than I can leaves me with little in the bank for the next day.
As mentioned yesterday, I’ve had my mum down to stay this weekend and it’s been lovely. However, as we’ve been busy sightseeing and chatting over good wine and food, I know I now need a couple of early nights to give my spoon pile a boost. I’m pictured above leaving the office this evening -looking and feeling drained – and it’ll be an early one for me.