The Spirit of Counting Spoons

temp_06d874fe-cf45-4a4f-b779-5585a3d9696fLast night I came across yet another link to spoon theory that misappropriated what spoon theory is about. Spoon theory1 was developed by Christine Miserandino to explain to her best friend what it is like to go through the day with Lupus. She explained that Lupus only gives her a limited amount of energy each day, and to demonstrate this she uses the analogy of spoons. She gives her friend 12 spoons and as her friend describes her day with each step a spoon gets taken away. She has to plan her day to spend her spoons wisely, if she doesn’t she gets sick. Every part of the day from taking a shower, cooking, getting dressed, driving, costs a variable amount of spoons.

Christine explains that depending on how her Lupus is treating her on any given day she gets a different amount of spoons. She ends her analogy by stating she is thankful because she appreciates life more, and now she sees the value in every spoon she spends.

In chronic illness communities spoon theory has become very popular, and I most often see it quoted in the terms of having a lack of spoons.  “Oh I’m in bed today, out of spoons” or “I’m not going to do X, I don’t have enough spoons” These statements totally miss what Spoon Theory is about.

Learning to count your spoons comes with the goal of getting the most out of life, and even learning how to use spoons to maintain or get more spoons. Also, Spoon Theory is about letting go of activities that waste spoons so the important things in life can get done. Spoons are also about gratitude, and valuing our accomplishments in spite of sickness. Also, I look at my life like this: regardless of what my disease is putting me through I still need to do my best to maintain my mind and body.  My illness wins enough battles as it is, I can’t let it take everything, or what will I have?

This is why I am so hellbent on working, and not taking sick days unless I absolutely have to. While I spend a majority of my spoons on work, I also gain spoons. I gain a sense of purpose in my life, and spending time focused on something outside myself reduces my pain. I often find that by the time I arrive at a client’s house my belly is seething, my leg is aching and the distance from the sidewalk to the door feels like miles. My insides are screaming all the way to the door. Though by 5 minutes into the session I am so engaged in the work, and how I am helping someone else that I discover I am in barely any pain at all. Behind my focus I can often still feel the battle my body is engaged in, but I am thankfully engaged with something else. Sometimes I even get to gain back a spoon, or discover an extra one I did not realize I had.

At work I keep my body and mind moving, and while my Endometiosis hates that, my sick body needs it.  Sometimes my job causes me to spend more “spoons” than I want, but it more than makes up for it by allowing me to maintain spoons. If I didn’t have to drive to and from appointments with clients, run around the office, and spend appointments walking around, I would not. I would lay about at home not finding the pain those activities cause worth the pain.  When the secret is that those activities keep my body alive. When we allow ourselves to be sick, we don’t save energy we lose it. Our metabolism slows, and our will to do things that hurt dwindles. Muscle also starts to atrophy, the body starts to need more and more sleep. The result is waking up each day with fewer and fewer spoons.

The days I am off work are dangerous, and I have to be mindful of secondary muscle aches and muscle tension. I spend large portions of my off time laying on my side with my knees bent, in an almost half sleep state. No surprise my knees, hips, and lower back get sore. Often the things we do in an attempt to feel better cost needless spoons. It is extremely important to maintain some level of physical activity and keep the body limber. If we don’t care for our minds and bodies depression will happen, and our pain levels will increase. That is a misfortune of biology.

Pain slows recovery from depression, and depression makes pain more difficult to treat … Worse, both pain and depression feed on themselves, by changing both brain function and behavior. Depression leads to isolation and isolation leads to further depression; pain causes fear of movement, and immobility creates the conditions for further pain. When depression is treated, pain often fades into the background, and when pain goes away, so does much of the suffering that causes depression.

-From Depression and Pain, Harvard Health Publications2

As I discuss with my clients in PTSD therapy: you are not responsible for being down but you ARE responsible for getting back up. We do not choose these illnesses, they choose us, but we MUST choose how to manage them. If we do not choose responsibly, they will manage us.  Recovery is hard work, and unfortunately for many of us with chronic illness we cannot fully recover our bodies, but we can recover our spirits and maintain a healthy quality of life.

Something else that is important to mention, what our bodies feel capable of, and what they can actually do and need to do are very different things. For the past month and half I wake up for work (that is if I got sleep!) with my body screaming.  I am stiff, my abdomen is burning, cramping, spasming, stabbing.  I feel fatigued, I can feel all my bones and joints as I stumble around the house to make coffee, get dressed, and deal with my dreaded bathroom issues. I still feel awful by the time on my way to work, and I’m dragging as I get out of the car and walk to the office.  However, by a few hours into the day it gets better, and I know I need to be there. My body and mind need the nourishment work gives me. Sometimes I need to recognize that just because I am not going to get immediate benefit from spending a spoon, there are reasons for it down the line. One of the difficulties with chronic illness, is that not everything we need (sometimes rarely anything!) feels good.

Often when I am assessing how to spend my time, unless it is going to trigger my pain (lots of time on my feet, lots of bending over, etc) I recognize I’m gonna be in pain anyway. Might as well have fun. Also, I learn ways to adapt my daily activities to conserve spoons. Little choices and changes in how I move my body, and spend my energy while doing different activities, especially out of the house, can go a long way!

Those of us with chronic illness do not have a limitless supply of spoons, which makes our choices in how we spend our spoons incredibly important. I think of it this way If I have $20 to spend at the grocery store I can spend it on veggie burgers, chips, and candy; OR I can spend it on spinach, quinoa, and chick peas. Option one is easy and it tastes better, option two costs more in money and effort to prepare, but it gives me more in the end. When I am hurting and laying down and watching TV I am not only still spending spoons I am WASTING them, true I spend them slower, and there are ways I try to make rest beneficial and find ways to relax when I am flat-out of spoons. Though too much of that is bad for me, even though it “tastes better” than most of my other options.

It’s also important to not focus on the “spoons” we don’t have, but the ones we do. I find that if I want to do something, there is a way to work with what I got to make it happen.  It may mean needing a few extra hours of sleep, getting to spend less time online, or falling asleep every time I try to watch my favorite show, and sadly it often means a day or two of increased pain and symptoms.  Though if it means getting to spend a day with my family at Disneyland, being an anchor for my clients and coworkers, getting a few hours to bond with my brother, making it to the end of the pier at Venice beach where I got to see a pelican dive underwater and catch a fish. Or being able to make my kick ass spaghetti sauce to share at Christmas dinner with my boyfriend’s family, and spend the evening watching an incredibly smart two-year old play the harmonica. All these experiences more than make up for all the dancing and rearranging I need to do with my spoons, in fact often times I’ll end up with extra spoons down the road. At the very least I keep the spoons I have by not falling prey to depression and isolation.

Take good care of your spoons, they are the key to the healthiest life you can have!

Helpful Links, and Sources for this Article

Post Script on Chronic Illness and Employment:  Depending on the illness, and where it is in it’s course employment may or may not be possible.  However, there is a LOT of anecdotal evidence and research that maintaining employment to whatever degree is possible has a lot of health benefits.  It may mean switching careers, reducing hours, or changing jobs.  Regardless whether or not working is possible, maintaining an aspect of life that involves giving, structure, community, and provides a sense of greater self purpose and meaning is VITAL to staying healthy.  I am thankful that I have an understanding employer, tons of saved up sick time, and an illness that while it creates many challenges still allows me to get out the door and to my job more days than not.  I will be following this article with a few on managing chronic illness on the job.

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