I used up my spoons early today. I may have used some of today's spoons last evening by actually escaping the house for a couple hours to attend my godson's preschool graduation. I had to go.
My friend Meredith introduced me to "The Spoon Theory" by Christine Miserandino a couple months ago around the time I started my Benlysta adventure. Even though I was diagnosed with lupus in 1990, I'd had limited contact with other lupus sufferers and I am just now starting to learn the lingo. Some lupus patients call themselves "lupies" or "spoonies" and their doctors, the rheumatologists are "rheumies." Finding these things out was like learning the secret handshake to a club I didn't know existed.
At the end of one of our first Facebook chats, Meredith wished me "Love, Hugs and Spoons!" Spoons? I was embarrassed to ask, but really wanted to know. Meredith sent me this link...
It's a long essay and worth the read, but if you don't have time, I will try a to condense it for you. The author, Christine, is a lupus patient. In her essay she tells the story of how she was finally able to describe what it feels like to have lupus to her college roommate. While sitting in dining hall of their dorm, Christine gathered spoons and handed them to her roommate and basically said "Here. You have lupus." She told her that as a lupus sufferer she started every day with a limited number of spoons (energy) and it was up to her to choose how to spend them. Christine talked her roommate through a normal day and took a spoon from her for each significant imagined expenditure of energy. The roommate had been up for the game, played along but was disconcerted to find that she'd run out of spoons well before the end of the "day." Finally, the roommate began to understand.
I had tried to explain what having active lupus feels like by using the analogy of starting the day with a full pitcher of water. Depending on what needed to be done, I would have to pour out water in accordance to the weight of the task. The trick was always how to get to the end of the day with some water left in the pitcher. High stress situations, work, holidays - anything out of the norm would cause me to pour the water out more quickly. I thought this was a fairly clever way to describe lupus, but honestly, I like the spoon theory much better. Somehow it has a better visual.
So I thank Christine for coming up with and writing "The Spoon Theory" and I thank my friend Meredith for passing it along to me. I pass it along to you so that you understand when I tell you that I have only two spoons left to get to the end of the day, that's pretty serious. I find that at times, I can "borrow" tomorrow's spoons when I have to, but it just makes it harder to get by the next day.
I still have hope that Benlysta will lead me to full pitchers of water and unlimited bouquets of spoons. It's just a matter of getting through this adjustment period and onto my next remission. I hope have the patience and strength to get there.
