The spoon theory helps to explain my ankylosing spondylitis fatigue
The often-invisible symptom can be difficult for others to understand
When I was pregnant before I was diagnosed with ankylosing spondylitis (AS), I was pretty tired. Particularly at the end of my pregnancy, when I could hardly take a breath, my organs were all squished, and my body was expending its resources on growing another human being, I needed to sit down and rest a lot.
Living with AS results in a similar type of fatigue some days — except I haven’t completed some huge, draining project, and I’m certainly not pregnant. Sometimes I just wake up feeling numb with exhaustion before I’m even out of bed.
This morning, after taking the kids to school and getting ready to go food shopping, I slumped over at the dining table and stared vacantly at the wall for a while.
“Are you OK, Jemma?” my husband, Dave, asked in concern. “What do you need? You look tired.”
“I’ve run out of spoons,” I replied. And luckily, he knew exactly what I was talking about.
No, I’m not crazy, and my kitchen drawer has plenty of shiny spoons. I was referring to the spoon theory, an analogy that explains how daily tasks can take a toll on your energy levels when you have a chronic disease like AS.
Rationing your energy (or your spoons)
Blogger and writer Christine Miserandino invented the spoon theory while explaining to a friend what it’s like to live with lupus, an autoimmune disease that can cause joint pain and organ damage. To describe the difficulty of living with a chronic disease and explain how she has to ration her physical and mental energy, Miserandino handed her friend 12 spoons. The spoons represent the total daily energy she has available, and each activity costs a spoon — or more.
In Miserandino’s story, the friend quickly uses up half of her hypothetical spoons as she describes getting out of bed, showering, taking medication, and getting dressed.
“I then explained to her that she needed to choose the rest of her day wisely, since when your ‘spoons’ are gone, they are gone,” Miserandino writes on her website, ButYouDontLookSick.com.
Improving understanding of invisible diseases
Many people with autoimmune diseases appear healthy, so this exercise is a clever way to help others better understand hidden difficulties like fatigue. Daily tasks can cost a person with chronic illness much of their precious energy, or spoons. Healthy people often have a deeper reserve of energy, and many take that energy for granted.
Sometimes it seems like our bodies are so busy fighting inflammation, recovering from a terrible sleep, or dealing with pain that we don’t have energy left to complete daily tasks. If I’m having an AS flare, normal activities like food shopping or giving the kids a bath can feel impossibly exhausting.
Reducing the daily load
I’ve heard of many people in the AS community taking drastic measures to reduce their daily load so that they can better cope with this disease. Changing jobs to take on a role that’s less physically demanding seems to be common, as is downsizing a house to cut down on cleaning and maintenance responsibilities.
I know of one brave lady with AS who sold her house and moved into a tiny home on wheels because it only took 30 minutes to clean from top to bottom. I bet that freed up a lot of her spoons!
Those of us living with chronic diseases need to choose our daily tasks carefully and learn to prioritize. Once I’ve used up my energy, pushing through can take an enormous mental and physical toll, and potentially send me into a flare. I think the spoon theory is a beautifully simple way to understand how fatigue can affect people living with ankylosing spondylitis.
Luckily, some days and weeks are easier than others, and though I’m grateful to have extra energy on those days, I never take it for granted.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
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