Hello, friends!
On a brilliantly sunny Saturday not long after arriving in Pittsburgh, Peter and I were up for a little local exploration. Still slightly drained from an active week, I woke up with just enough energy for one activity. We took a picturesque fifteen minute drive to Sewickley, the closest local equivalent of a New England village. Bookstore visit, village stroll, and lunch were completed by one of Peter's favorite pastimes, sporty car window-shopping. Total time expenditure: 2.5 hours. Total energy expenditure:100%. The five minute walk from the car to our apartment was misery. Peter eventually snaked my oxygen tubing out our front door and down the hall to connect me with a higher dose of oxygen for the last few steps. Three hours after being tucked into bed, I had just enough energy to prop myself on the couch for the rest of the evening. I had used all my spoons.
Christine Miserandino (www.butyoudontlooksick.com) is a lupus advocate and blogger who created the Spoon Theory to explain the daily experience of lupus to a friend. She wanted to illustrate the necessity of making conscious choices about every energy expenditure every day for individuals living with a chronic illness. She gave her friend a dozen spoons, her energy quotient for the day and her constant reminder that she had a chronic illness. Christine took them away one by one as her friend weighed clothing choices (zipper vs buttons), transportation options (driving vs subway), and food selection (utensils vs hand held), the activities of a typical day. In theory, the subway requires fewer spoons than driving, but not while standing in the middle of a jostling, constantly shifting rush hour crowd. Cutting up food with a lupus-inflamed elbow is no fun, but neither is only finishing half your sandwich due to jaw pain from chewy bread. And not enough fuel means another spoon gets docked.
I complete a spoon count every morning. Lupus and related lung disease have made it essential. A good or bad day yesterday means more or fewer spoons today, and they have to last all day. Using all my spoons usually means my day is finished. A nap might replenish a few; a long nap might even provide an afternoon second wind, with the caveat that it will now take less activity to use up the remaining spoons. Peter often helps with my morning ablutions, not because I'm incapable of bathing independently, but because doing so usually means that after shower, clothing, and breakfast comes preferred activity, not nap. Excitement-induced distraction from "spoon management" on a less energetic day could result in that Sewickley Saturday's problem: lots of day left but no more spoons. For a really worthwhile and special activity, a friend's wedding, an evening at the symphony, I might push myself, borrowing against the next day's spoons. Such debts must always be repaid with interest, though; the next day might not bring me beyond my front door.
In some ways, the worsening severity of my illness has made coping a bit easier. With an oxygen tank in tow, at least there's conspicuous external evidence, requiring slightly fewer explanations. Even with the extra effort it takes to get to pulmonary rehabilitation sessions, the physical conditioning has gradually increased my spoon supply, not in entire spoons but a quarter-spoon here, a third there. I'm grateful for the bonus spurts of energy. I'm hopeful they'll be sufficient to tide me over until a transplant resolves the effects of advanced respiratory disease.
As always, a good day is in the framing. A good day is one when I'm still breathing, energetic enough to fuss about never having enough spoons. Every morning, I wake up knowing that I'm not alone, that love surrounds me, flowing from heaven, from friends and family, from kind strangers, from the compassion I try to grant myself. As Roethke says in "The Waking," I learn by going where I have to go. This may not be the path I would have chosen, and I certainly would have stockpiled a few more spoons, but I can't deny a tinge of elation that I'm still moving forward.
Christine Miserandino (www.butyoudontlooksick.com) is a lupus advocate and blogger who created the Spoon Theory to explain the daily experience of lupus to a friend. She wanted to illustrate the necessity of making conscious choices about every energy expenditure every day for individuals living with a chronic illness. She gave her friend a dozen spoons, her energy quotient for the day and her constant reminder that she had a chronic illness. Christine took them away one by one as her friend weighed clothing choices (zipper vs buttons), transportation options (driving vs subway), and food selection (utensils vs hand held), the activities of a typical day. In theory, the subway requires fewer spoons than driving, but not while standing in the middle of a jostling, constantly shifting rush hour crowd. Cutting up food with a lupus-inflamed elbow is no fun, but neither is only finishing half your sandwich due to jaw pain from chewy bread. And not enough fuel means another spoon gets docked.
I complete a spoon count every morning. Lupus and related lung disease have made it essential. A good or bad day yesterday means more or fewer spoons today, and they have to last all day. Using all my spoons usually means my day is finished. A nap might replenish a few; a long nap might even provide an afternoon second wind, with the caveat that it will now take less activity to use up the remaining spoons. Peter often helps with my morning ablutions, not because I'm incapable of bathing independently, but because doing so usually means that after shower, clothing, and breakfast comes preferred activity, not nap. Excitement-induced distraction from "spoon management" on a less energetic day could result in that Sewickley Saturday's problem: lots of day left but no more spoons. For a really worthwhile and special activity, a friend's wedding, an evening at the symphony, I might push myself, borrowing against the next day's spoons. Such debts must always be repaid with interest, though; the next day might not bring me beyond my front door.
In some ways, the worsening severity of my illness has made coping a bit easier. With an oxygen tank in tow, at least there's conspicuous external evidence, requiring slightly fewer explanations. Even with the extra effort it takes to get to pulmonary rehabilitation sessions, the physical conditioning has gradually increased my spoon supply, not in entire spoons but a quarter-spoon here, a third there. I'm grateful for the bonus spurts of energy. I'm hopeful they'll be sufficient to tide me over until a transplant resolves the effects of advanced respiratory disease.
As always, a good day is in the framing. A good day is one when I'm still breathing, energetic enough to fuss about never having enough spoons. Every morning, I wake up knowing that I'm not alone, that love surrounds me, flowing from heaven, from friends and family, from kind strangers, from the compassion I try to grant myself. As Roethke says in "The Waking," I learn by going where I have to go. This may not be the path I would have chosen, and I certainly would have stockpiled a few more spoons, but I can't deny a tinge of elation that I'm still moving forward.
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| Waiting for snow |
Edwina, you write so beautifully. You continue to be an inspiration to all you touch.
ReplyDeleteThank you, Miriam! They have internet in midwife protection? ;D
Deletei Heart you.
ReplyDeleteHeart you back, sister.
DeleteEdwina-I think this is your "game face". ;)
DeleteSnow is always serious business! :D
Delete