Living with JHS

You may have heard, seen or read the word “spoonie” come up before and, no doubt, wondered what on earth it means! I know I talk about spoonies and how many “spoons” I’ve got left etc. It’s something that I have talked about previously in Spoonie, or spoonie? but, after explaining it to a close friend of mine who hadn’t previously heard of it, I thought I would feature it again. So, without further ado, here’s what it’s all about!

If you already know what a spoonie is then, the likelihood is, you are one yourself, or you know someone who is. For those of you who don’t, however, it refers to someone who suffers with a chronic illness.

The term comes from The Spoon Theory by Christine Miserandino, where Christine used spoons to try and describe, to her friend, what it was like to live with Lupus. The spoons represent energy and measure our ability to carry out daily activities, even the smallest thing like getting dressed. She explained that we have to consider, very carefully, what activities we complete throughout the day because, unlike most people, we don’t wake up with an endless amount of energy and possibilities. The difficulty we face is not knowing how many spoons we are waking up with, especially after a night of very little sleep. Once our spoons are gone, that’s it, we don’t get anymore and, although we can borrow from the next day’s spoons, that leaves us with less tomorrow.

Many of us have long to-do lists but, unfortunately, they are usually never-ending because we never have enough spoons to clear the list and start afresh. Our level of spoons mean that we have to prioritise which tasks we complete as to which are the most important – if we don’t, then there’s the possibility of it not getting done because there’s no more spoons left.

Since Christine’s post, The Spoon Theory has been adopted by all of us who live with a chronic illness, whether it be Lupus, Chronic Fatigue, Fibromyalgia or, even, Ehlers Danlos Syndrome, to name but a few. Hashtags on Twitter and Instagram, using the term spoonie, become ever more popular each day and are used as a way to find and interact with other chronic illness sufferers. The spoonie community is one of the strongest communities I have ever been a part of. The strength and support that we offer to each other is overwhelming and, every day, it makes me proud to be part of such a loving and supporting group of people!

So you now you know what a spoonie is! If you would like to read Christine’s article on The Spoon Theory then you can find it in the Useful Websites tab. It’s a great read.

Also this week, I have a special post AND a big announcement coming up, so look out for them! Until then, my lovelies.