By Valerie Rice | January 17, 2020
I realize now, a little late in the game, that some of you may not be familiar with this term. How egocentric of me. My bad. I will correct that error today! Or, in my favorite terms “You gonna learn today!” Wheeeee! This is also one of those “let me sing you the song of my people” moments because I am a spoonie. Whether you have heard this term or not, sit down and strap in, we are going on a trip down writer’s lane!
This term originated with lupus blogger Christine Miserandino, and now is used to refer to those people with chronic illness. People who have to use this term typically have what we call “invisible disabilities” and need an easy way to describe our current state to outsiders. Using spoons. So two things to open up here: an invisible disability is one that is not immediately apparent such as Lupus, Fibromyalgia, or Ehler-Danlos Syndrome. And the spoons. Most often these illnesses cause fatigue. What do you think of when you hear fatigue? Most people think that someone is tired.. And yeah, that’s a part of it. But in reality FATIGUE is a physiological condition that causes extreme exhaustion from minor things. Think about filling out a form, taking a shower, loading a dishwasher, or any other basic task. For a spoonie, this is a huge effort and requires a rest or nap after completing. Yeah. This is due to an imbalance in one of our chemicals and the exertion our sick bodies have to make to perform a basic task.
ABOUT THOSE SPOONS AGAIN?
Ah yes, the spoons. These represent the energy allotment of someone with chronic illness. (Ahem, dysautonomia, which I have) We get 12 spoons a day and have to ration which activities need to be done in order to use them wisely. Yesterday was my daughter’s birthday, so I did numerous things. I got up, showered, and dressed without help (4) (went shopping (4), Went to and socialized at her party (6), and then I cleaned up (3). That’s 17. You know what happened? I ended up sleeping until noon today and can barely move! I am typing from my bed. I may be able to eat if a kid is kind enough to bring me a piece of food. It will be a few days before I can get back up and shower again, but it was worth it! How many of you can manage that much in a day? Probably most, but I feel pretty damn productive even if I can’t lift my arms over my head or stand without assistance.
BWAHAHAHAHAHAHA! Okay, okay, I’m done. Listen. They always prescribe exercise, counseling, and antidepressants. Isn’t that special? Thaaaaaaat doesn’t work. But we do it anyway and then have even LESS energy than before. Cool, huh? Wanna hear a funny story? I had one doctor tell me my problem was polypharmacy, basically that I was on too many medications, and tried to take me off everything except an antidepressant. I almost died. No amount of therapy is going to fix my heartbeat and blood pressure. Or my brain malfunctioning. Or muscles spasming and ligaments tearing from regular use. Thanks though. See, when people don’t know what to do, and this includes doctors bless their hearts, they turn it around on the patient and it becomes a moral or mental issue. Pain and substance use are put in the same category as are chronic illness and laziness. Unless you have a smart specialist. Until then, you are just going to have to suffer, but what else is new?
Okay, in some ways they are right. Needing a nap after taking a shower sucks as does being mistreated by the medical field and the population at large. Add life long agonizing pain you are being told to suck up and your body’s inability to absorb folic acid and you have the perfect recipe for depression. So yeah, we probably need therapy, but it is a side effect not a cause. Which is why the therapy doesn’t really fix anything because it is impossible to heal while you are still suffering. Anyway. Do you know any spoonies or have a good spoonie story?