This resonated strongly with me and I immediately jumped on the spoonie bandwagon. It was great to have this lexicon to describe my life to others and to help loved ones get that sometimes I just can’t do things because I have to spend my spoons elsewhere that day. As I got deeper into spoonie culture more and more fellow would be spoonies were unhappy with how this definition of living with chronic illness took over and sometimes fell flat.
I spent time looking into this trying to understand or think of yet another way to describe life that would fit these holes and there just is nothing. Looking at able bodied people’s response to spoon theory I realized they weren’t fully getting it, causing them to misuse spoon theory and create gaps in understanding. This is not to say spoon theory fits everyone with chronic illness or that there aren’t some issues, but I wanted to spend some time breaking this down a little better.
Imagine every day you have a finite number of spoons. Every person with chronic illness has a different amount of spoons. It has to do with medication, other treatments, self care, what needs to be done, weather, ect. Some will have five spoons in a day; some 20. Each day can start off with a different amount. Some days I’m down to three, easily, and others I have fifteen or more. There are so many variables I cannot tell you from day to day how many I will have. My ability level changes every single day. I have learned to gauge quickly what I *think* I will be able to do but I’m not always correct. I personally know a person with Fibromyalgia, like me, who gets through their day with 25 on average; and another person, also with Fibromyalgia, who is lucky to get seven spoons on a good day. It is all very individual.
For the purposes of this blog let’s say I average twelve spoons a day barring any weirdness. To help compare, using people in my life as a model, the average able bodied person starts most days with thirty. A younger or very fit person who is active will have more, and an older or unfit person who is not very active will have a little less.
Using myself and the twelve spoons, think about your day. Based, again, on myself and how much energy I expend doing various things, use this table as a guide for how you want to spend your spoons.
Remember you only have 12 spoons to work with and you’re not guaranteed having that many the next day, how are you going to spend them? You can sometimes steal from the next day in emergencies but then however many spoons the universe gives you the next day are down from the get go. You cannot just decide I will do XYZ one day and ABC the next. You are not promised the ability to do that.
Every day I have to think, consciously, what needs to be done, and what is most important and what can I let go if my body doesn’t work. I can’t go to the beach or get a random ingredient for dinner or sew a quick button on a pair of kid pants just because I want to or it needs to be done. Sometimes I will wake up feeling like I have 20 spoons and an hour or so later suddenly have five. I don’t make many plans because I don’t want to have to say I’m sorry, today is a no go after a friend or loved one put in all this work to do something that included me. I miss out on school things with my kids because even though we knew this concert was coming my body doesn’t care about calendars, and I can’t just push through it. When spoons are gone they’re gone. It isn’t about weakness or grinning and bearing it. You can’t magically make a dollar appear when you’re broke. Same thing here.
The hardest part about all of this and where the main problem lies in bridging the understanding gap between persons with chronic illness and able bodied persons, is that there is no formula. Explaining how we make choices about where our energy goes is only one step. The next one, and quite probably not the final one, is understanding that every day changes. I’ve said many times in this post that each day I have a different amount of spoons. One day I might have 15 and the next three in a row, four. I have many well meaning people in my life who love me and just want to help in some way look at my activity level from day to day like we would look at a financial budget and try to audit what I do and then “discuss” with me why I may or may not choose to do this activity they really wanted to do with me. I don’t have a simple answer for them and it gets very hard to explain in a loving way what is going on.
It frustrates me that people feel the need to do that. The belief that I must not be active enough or too active or not doing something right or I just need to push through it takes away my sense of autonomy over my own life and sometimes my own body. Even if I was somehow missing some important thing that would make life better or at least more predictable, no one has the right to judge whether or not I do it. I don’t have the right to judge if you decide a big screen tv is a better investment than new car tires. I’m not in your head. I’m on the outside and you may have a very valid reason I haven’t thought of yet. Able bodied people are by and large given this kind of autonomy.
I have to live in a way that most people can’t even imagine. All I want is to be trusted that I know my body and I know my illness. I am going on 13 years diagnosed, and a strong possibility I’ve had it since I was a teenager. Your friend with fibromyalgia is living life the same way I am but they are making the choices that work for them. Their choices will not necessarily work for me.
I want to say to all the people in my life that do this, and there are many: I love you! I love you so much I don’t have words. I recognize that you love me and want me to be healthy and happy and have a good life. I recognize you feel helpless watching me go through this and are grasping at as many straws as I am to help. Please remember, I know me best. Please remember, when I have to bow out, or just smile and nod as you speak of “all your other friends who are sick say to do this”, I am not angry with you or trying to hurt you. I’m just trying to live my life on my terms the best way I know how.
Feeling helpless is the hardest part of watching someone you love go through this. Here are things that help me. I encourage you to speak to your own loved ones about what helps them. Their answers may be different from mine. Some of these things we expect spouses/partners to do, but sometimes spouses/partners can’t or just need a break from constant caretaking.
- Let me sleep! Sleep, the ability to fall asleep, stay asleep, and wake up is a huge issue for me and makes or breaks my day. Let sleeping Susan’s lie. Also please don’t guilt me that my hours are way weird.
- Make a random meal for my family. That is a big part of what I work my day around. It is so nice when I don’t have to think too hard about it.
- Help me with a random chore or two. Again keeping a clean home is very hard. Sometimes I just can’t vacuum or worry about that toilet that visibly needs a good scrub. Getting food on the table and showered will always be chosen over cleaning. In fact I often clear an entire day to just work through one room. A little help would be great.
- If you want to spend time with me and I can’t go out, come to me. Have a movie night with popcorn and snacks, or just sit and chat. My meds make me chatty much to everyone’s chagrin.
- Help my kids find something to do. A quiet day every once in a while, especially in the summer, really helps me reserve my energy for them when they come home. I’m also an introvert so quiet is gold.
- Help me with an errand. Sometimes I need something, but I just can’t go out and Hubby is either busy or ill (he has chronic illness too).
I usually like to have a clear wrap up, thank middle school English courses for that. Today though I think I will just say: Thank you for reading, I love you, and I hope this helps you understand loved ones with chronic illness, or how to speak to loved ones about your chronic illness.
*Side Note* A friend recently pointed out to me this also translates well into mental illness and those coping with death, abuse, and/or violence. Sometimes we have limited emotional or mental spoons too, and when they’re gone, we’re basically goo.