Today, I am all out of spoons. And it is only 1:30pm.
Christine Miserandino, a woman living with Lupus, came up with The Spoon Theory. In an effort to explain to a friend of hers what it is like to live with a chronic and invisible illness, she used a handful of spoons to represent all the units of energy she has to use each day. She gives her friend a handful of spoons and explains that a typical healthy person wakes up with unlimited spoons for the day to do all the daily activities he or she pleases. A healthy person doesn’t have to think about his/her spoons. A person who suffers from chronic illness? They do not wake up with unlimited spoons.
So she has her friend start to tell her all the little things she does from the time she wakes up in the morning (opening your eyes, turning an alarm off, getting up out of bed, going to the bathroom), and as her friend explains each step, she takes away one of her spoons. Soon, her friend is left with only a couple spoons, and she had barely gotten through a simple morning routine! You see, those with chronic illness wake up with only so many spoons, and they need to be careful not to use all their spoons up too quickly, because once you are out of spoons, you don’t have any left.
In many ways, I think most everyone can relate to The Spoon Theory once in a while. Think about when you have the flu. And you have to pee, AND you are hungry. And you lay there thinking, “If I get up to pee, will I have the energy to make myself a sandwich?”
But for those with chronic illness, they wake up with limited spoons EVERY DAY, not just when they have the flu. Many of my fellow Juvenile Arthritis Mamas share this Spoon Theory with others to explain how life can be for our kids. Yes, they LOOK FINE, but they aren’t. They wake up with less spoons than their peers. They have to think before they use a spoon sometimes so they can be sure they have enough spoons later for something else they want to do.
My daughter E has been pretty lucky in her Juvenile Arthritis. Her case is on the mild side, and we have been able to control it quickly. Most days, she wakes up with plenty of spoons. We are always told, “She looks so great! You would never know!” In which I respond with “Yes, but that is because of the strong medications she is on.”
However, these strong medications that we are so thankful for…they rob her of spoons in the days following her injections. We give her a once a week injection of a medication called Methotrexate. It is a chemotherapy medication that is used in JA and RA to suppress the overactive immune system. In the 1-3 days following her injection, she sometimes wakes up in the morning with many less spoons than normal. These days, E has a hard time. She is whiny. She is argumentative. She can’t make decisions. She needs more sleep. She needs more hugs. She needs more love. She needs my patience.
Here is the thing about the spoon theory. It doesn’t mention the people who take care of the people with chronic illness. Though most of the time I wake up with an abundance of spoons, once in a while I feel my daughter’s illness has robbed me of my spoons too. Today, I felt like I was down to my last spoon at about 10:30am. I was on the verge of tears after E spent what felt like hours whining and complaining as we tried to get dressed to go to the park. Yes, getting ready for the park must have cost us each several spoons today. And I don’t think I woke up with too many more than that. So now that the kids are down for naps, I am sitting here, barely awake and holding onto my last couple spoons for the day.
Thank GOD for naps.
All this said, I am very aware that we are “lucky” in the terms of my daughter’s illness, and that other families have it so much worse. As a speech pathologist, I sit back and think of the families of the children I have worked with who have significant delays and how some weeks they must use SO many spoons that by the weekend they may wake with only a few. I get that now.
So now me and my spoons are going to go and try to relax. May you all wake every morning with an abundance of spoons.