Holding my Spoons
Reading is something I do a lot. There are so many hours of my week that are spent on reading, that I don’t even know how I could tally them up. In addition to over 111 books every year and the stories, I also read a ton of online articles including a very broad range of topics. Recently, I read about Spoon Theory.
Spoon Theory was written by a woman named Christine Miserandino at www.butyoudontlooksick.com, who has lupus. My reading of Spoon Theory came from my reading of an article, that was essentially a collection of Tumblr posts about people trying to explain chronic illnesses to other people, or rather trying to live with chronic illnesses. One of the links was to Spoon Theory. I read Christine’s theory and I couldn’t agree more. I won’t copy the theory here, because it’s her’s and that wouldn’t be nice. I will summarize it though.
Christine equates having a chronic illness to having a handful of spoons. You always have to keep a hold of the spoons. Various tasks throughout your day cost you a spoon, whereas, other people wouldn’t have to give up a spoon to perform said task. In fact, other people don’t have spoons, or they get a lot more, either way, if you have a chronic illness, you have a limited number of spoons to live your life with.
Christine has lupus, which is an autoimmune disease, that doesn’t really come with any outward markers. You cannot look at a person and tell that they have lupus. Chronic illness could also include mental illness. Usually, you cannot look at a person and tell that they have bipolar disorder.
When Christine first came up with Spoon Theory, she was speaking with a friend who wanted to know what it was like live with a chronic illness, not the doctors appointments or the medications, but the coping. Christine gave her friend a handful of spoons and took one away each time there was a task that was limited because of chronic illness. Once you’re out of spoons for the day, you’re done. People don’t get that you only have so much you can do and only so far you can go; they’re judgemental because they can’t see that you only have two spoons, because, to them, you look normal.
Spoon Theory, has been rather apt to me this week. I’ve been sick. I have at least two autoimmune diseases, officially diagnosed not Googled, that do limit my life. Although, on a side-note, the internet is a wonderful way to find out about symptoms and to try to put a name to something when you know something is wrong, but you don’t know what.
My past several months have been awful health wise. Christine’s idea of taking away spoons for tasks that are made difficult, or impossible, by chronic illness, is brilliant. Someone freaking stole my spoons this week. Like, there was this big silverware robbery at my house, and somebody made away with all my spoons. I am in a spoon deficit. Christine told her friend she could never forget the spoons because she was always going to have lupus. Basically, you cannot live any part of your life without an autoimmune disease, or a mental illness, or any other type of chronic illness, affecting it. You have to make choices, consciously, about how certain things in your life will be affected by your illness. Can you do those things, or are they off limits because of the illness?
There are so many things I’ve missed out on because of my autoimmune diseases. Just this week, I had grand plans of coming home and running every day after work. Yeah, well, it happened a total of one day, then I got painfully sick.
I have to constantly make decision about my life around my illness.
I can’t even buy regular shampoo. Do you know how nice it would be for me to go to the store and buy a regular bottle of shampoo? It would be amazing. As it is now, I have to order expensive shampoo, very expensive shampoo that is probably four to five times as much as your shampoo. It’s made with flowers, and herbs, and sticks, and junk.
I can’t wake up in the morning and make huge plans for things I’m going to do in the morning, because I feel like junk, every single morning.
How I’ve thought of having a chronic illness in the past is that it’s like starting at a deficit. Everyone else who is somewhat normal, starts at zero, then they add upon their zero as the day, week, month, whatever, goes on. Having an autoimmune disease is like starting at negative three-hundred. You have to work and work and work to even get to zero, maybe you even get to five one day, and usually when you get there, something knocks you back down to negative numbers again, maybe even more negative that you were before.
It’s always an uphill battle.
For now, I’m holding onto my darn spoons as hard as I can.