I recently read a Facebook post about a mother’s struggle for her chronically ill daughter. I say struggle because I know no better word for it. Having dealt with chronic illness for almost four years now I understand that the struggle is real.
I have made numerous modifications in my life that keep my illness at bay as much as possible but I am also blessed with a supportive husband, an understanding family and friends that have my back. I can’t imagine going through this as a teenager. A good friend asked me once what it was like. Well I can only explain it like this: when I wake up I do a stretch check to see where the pain may have landed during the night. Sometimes it’s my knees, my elbow, and maybe my fingers. Then I modify my day around that. It can be frustrating to not have a body that will do all the things you want it to do. I feel doors of opportunity closing. It breaks my heart to think of someone young going through that.
If you want to understand chronic pain I’d like you to think of spoons. Pretend you are given an endless number of spoons to get you through your day. One spoon might be getting ready, another spoon for making the bed, one for feeding the dog, making breakfast and so on. At the end of the day count how many spoons you have used to get you through all the tasks of that day. I am guessing a healthy person might have over 200 or more. Chronic illness LIMITS the number of spoons you have. A good day might be 45 spoons, a bad day might only be 10. Now you have to decide and prioritize how you will use your spoons. If I only have 10 I must really limit my day. A nap might buy me another five but once those spoons are gone they are gone. People with chronic illness hit a wall and if you go over your given number of spoons you pay a high price by getting even LESS spoons the next day! That would mean “I can’t get out of bed day.” I didn’t come up with this theory. It came from a Lyme support group.
So please if you know of a neighbor or friend that may “look fine” or “seem healthy” one day but teetering on the edge the next day try offering a Loving spoon of your own. Don’t judge, help. Trust me, no one wants to try living on limited spoons.
“I don’t want to live in the kind of world where we don’t look out for each other. Not just the people that are close to us, but anybody who needs a helping hand. I can’t change the way anybody else thinks, or what they choose to do, but I can do my bit.”
– Charles de Lint
Taste of Home columnist Sandy (Anderson) Holthaus lives on a farm in South Haven, MN with her husband, Michael, and their children Zoe, Jack and Ben. Her heart remains on the North Shore where she grew up with her parents, Art and LaVonne Anderson of Schroeder. She enjoys writing about her childhood and mixes memories with delicious helpings of home-style recipes.
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