Six weeks ago, before my incredibly patient and understanding friends delivered my damaged, aching body to the hospital in the middle of the night after an otherwise pleasant evening of reconnecting and reminiscing, these friends explained to me the concept of Spoon Theory. They even explained it well enough that when they told me in the ER waiting room that they didn't have enough spoons to stay with me until I was seen, I understood completely and sent them home with my thanks. Three times today, under completely different circumstances, and in freakishly rapid succession, Spoon Theory has popped up into my consciousness. I knew before I got out of bed today that I was dealing with an abnormally low number of spoons for the day... But wait. I'm getting ahead of myself. Let's start with exactly what Spoon Theory is.
Many years ago, a woman named Christine Miserandino was asked by her friend what lupus actually felt like. After struggling with an answer, recognizing that this was important to their relationship, she wisely chose to explain with a solid metaphor rather than blowing off the question with a joke. She grabbed spoons from all around the restaurant where they sat, and handed a bouquet of twelve spoons to her friend. These spoons represented choices of energy allotment that someone with lupus (or other debilitating chronic illness) has to make every single day that healthy people never would. A healthy person has energy, and that energy is easily replenished with food and rest. A person with chronic illness has a limited supply (the spoons), and sleep or food may not always replace each spoon used in equal amounts. Simple tasks cost different numbers of spoons, based on the day and steps in each action. "Getting up and going to work" is not one action. It's getting out of bed when you didn't sleep well. And it's getting yourself into a shower when you don't feel like letting hot water touch your skin. It's debating whether you want to raise your arms to wash your hair and bend to shave your legs all in the same day. It's finding clothes that fit around your body when your abdomen is bloated. It's finding shoes that won't squeeze the balls of your feet or make the bone spurs in your heels hurt too much. That can be six spoons right there, before you even make it to the car to head to work. How will you budget the remaining six in the bouquet? If you borrow against tomorrow's spoons, how will you pay yourself back? By staying in bed all day tomorrow? These are calculations that have to be made every day.
Here is a link to Spoon Theory in Christine's own words:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
This afternoon, in my daily googling of "lupus and (x)," I tried again to find lupus support groups in northern Colorado. So far I haven't found one that meets in physical space, but I found a Facebook group. A recent photo on the site showed a woman hugging a giant sculpture of a spoon, making reference to Spoon Theory. Seconds later, a Facebook friend of mine who suffers from frequent migraine posted a Wikipedia link to Spoon Theory, for her husband to read and comprehend. I knew then that it was time to discuss this at length. The coincidences were just too strong to ignore.
I woke today with about three spoons total available for my use. My head hurt, my body temperature was low (96.8, taken several times over a few hours), but I alternated between feeling flushed and cold. I had a few important tasks to accomplish, but for the most part, I could lie in bed and read backlogged emails of realtor newsletters. I was proud of myself when I made it into a bathrobe and sitting upright in a chair before noon. For the second day in a row, I wasn't able to force myself to eat until evening. This time, it feels like having the flu without having all of the obvious markers of having a bug (no fever, but nausea and body aches in abundance). It's not always like this. Variety is the spice of life, right?
People who are healthy most of the time don't understand what it's like to feel this way frequently. I have not been able to explain myself to the people who needed to know for decades. No doctor was willing to look at the big picture, even when I tried timidly to ask whether some of these things might form a general pattern. My husband assumed for years that I was lazy when I felt awful so often that working, child rearing, or housekeeping was difficult to accomplish on a reliable basis. People who said they were my friends called me a negligent mom or a bitch when I was in the middle of flares, even when I had the classic butterfly rash on my face and brittle lupus hair that they could see, to go with the overwhelming pain and fatigue that they couldn't see. I heard that if only I'd exercise, I wouldn't feel cold. If only I'd lose weight, my feet wouldn't hurt. I must be lying about what I eat or how I feel. I must be bored when I was between jobs and didn't have the energy to look for a new one after we'd moved to yet another new state. I must not love my family because I didn't want to go play outside with them in the sun. When the disease first bloomed in a months-long unbearable flare after pregnancy and birth complications, twenty-three or -four years ago, "friends" told my husband that I was such a sponge staying home with the preschool-aged kids (after I'd lost my 50+ hours a week job) and asked why was he supporting me? Through every flare since, he looked at me lying on the couch like he was still pondering that question, wishing he had dumped me years ago. Until this February, I had no vocabulary to explain what was going on inside me. I didn't know what lupus actually was until I got my blood results online and googled what "anti-Smith antibodies" were. I have been fighting every moment of every day to pretend that I was normal, and there were even times that I believed my own lies. Unfortunately now I am a victim of my own PR. If I had known what to tell people, I might have experienced more compassion along the way rather than contempt. People I loved more than life gave up on me years ago. I don't know that I will ever get a second chance with the ones I never wanted to lose. Maybe if I had known what was happening, I could have kept some of them.
The literature all tells you that lupus hurts. It doesn't fully warn you how much it hurts to lose the understanding and respect of friends, family, and peers along the way. It doesn't tell you how much it hurts losing control of your own spoons.
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