Have A Chronic Disease? You're A Spoonie

What Are spoonies? No, they dont have anything to do with Moonies. Actually, they dont have a lot to do with spoons, either.

A spoonie is someone living with a chronic, tiring, and most likely painful illness. People who suffer every day from this kind of endless fatigue and lack of energy with or without other symptoms call themselves spoonies.

Why spoons, you ask?

Back in 2003 I suffered from terrible migraines as well as from Cushings Disease, and I was exhausted all the time. Occasionally I would get myself together and go out to lunch with a couple of friends, but I would have to time my medications just right to make it through the meal, and afterward I would have to go home and go to bed immediately. During lunch, however, I made an effort to appear normal. No one ever saw me sticking Imitrex injections in my leg (for the migraines), or lying on the couch in the living room, too tired to get up for a glass of water. I had explained to my friends that I was sick, but they had no idea how bad things really were. To them I didnt look sick, I just looked fat (a symptom of Cushings).

Around that time, I came across the Spoon Theory on a website called But You Dont Look Sick.Over the years the Spoon Theory has become the basis for a network of individuals who all have a chronic, debilitating illness of some kind, including lupus, arthritis, fibromyalgia, chronic fatigue syndrome (now called ME for Myalgic Encephalomyelitis). Many spoonies have never met, but they have developed close friendships through e-mail, Twitter, and personal blogs. (Go on Twitter and search for #spoonies.)

The Spoon Theory was born when Christine Miserandino who has lupus was in a diner with her college roommate, trying to explain what it felt like to have a chronic illness. Suddenly she grabbed all the spoons from their table and neighboring tables.Christine explained to her friend that the difference between being sick and being healthy is having to consciously make choices about how much it is possible to do in any given hour. She used the diner spoons to convey her point. She wanted her friend to actually hold something that she would then take away, to illustrate the way illness takes away your energy and makes you feel the loss of the life you once knew. If I was in control of taking away the spoons, said Christine, then she would know what it feels like to have someone or something else, in this case lupus, being in control.Christine then took her friend through a routine day, but each activity had the energy cost of one spoon. Getting up and making breakfast took one spoon, because she couldnt just grab some coffee and run; she had to prepare a full breakfast to protect her stomach from all the medications she took every morning. Taking a shower is very tiring, so that took another spoon. Getting dressed also took one spoon because she couldnt just throw on some clothes; she had to think about what she was capable of putting on by herself. When she came home at the end of the day, she had one spoon left. Dinner or laundry? Decisions, decisions.
The flip side of being a spoonie, however, is you dont waste your spoons! You live your life always pursuing your first priority. Sometimes things fall by the wayside and dont get done. It is difficult when that happens, especially if you are a perfectionist, but as a spoonie you keep your focus on the activities that serve you best.While Im not as sick as I used to be, Im still a spoonie for a number of reasons. One of the reasons Im a freelance writer is that I would never survive in any office, but this way I can control my spoons and work when Im at my best.Ive discovered that I can make a lot of spoonie friends online. If you have a disorder that makes you constantly tired, I highly encourage you to check out the blogs by other spoonies, including Christine Miserandino. Some are very funny, and spoonies in general dont whine because whining is a waste of time.(You can download a PDF version of The Spoon Theory at www.butyoudontlooksick.com.)Nellie Sabin is a writer and editor who has published ten nonfiction books on a variety of subjects. She can be reached at http://www.nelliesabin.tumblr.com.
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