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The Chronic Illness ‘Color System’ I Use Instead of Spoon Theory

As a person living with many chronic illnesses, there are many symptoms and side effects I deal with on a daily basis. Perhaps the most consistent ones are nausea, vomiting, fatigue, heart palpitations, swelling, episodes of tachycardia, migraine or a headache in general, weakness and of course pain. And as I have worked on adjusting to this life, I have of course learned to manage these things but within that same breath I also judge what I am going to accomplish or just my overall feeling for the day based on how active things are or how many symptoms are kicking up.

Now, many chronic illness warriors use the spoon theory, which uses spoons as a measurement of energy and the more energy something takes, then the more spoons you take away from your day’s “supply.” At first I didn’t get it, but then spoons and forks started disappearing from the kitchen and it all clicked. I used to think there was a thief in the dishwasher stealing my silverware , and while I still don’t know where all my silverware went, I have to make do with what’s left because I refuse to go to the store and buy another set of flatware at this point in time. And that’s when the spoon theory made sense to me. I get a set amount of “spoons” daily and once they are all gone, that’s it. Some days, I use most of my spoons just getting out of bed and then the rest get used bathing or brushing my teeth. And some days I may get up and feel pretty good and then as the day goes on, I just use it all up and I have borrowed from the next day and now I am at a deficit. So the whole point is this: we only get a certain amount of spoons each day and we should carefully think about what activities we do daily.

Which leads me to the system that I use most over the spoon theory. Meteorologist use colors and scales with colors to explain pollen levels or gauge risks for severe weather. I have somewhat adapted this level to measure what type of day I am having. For example:

Green: This means it’s a good day. I am feeling pretty OK and I can complete tasks with ease. I am moving pretty well and need minimal assistance.

Yellow: This means I am moving a bit slower. It may take me longer to complete some tasks and I need to rest frequently. After I complete some tasks, if I nap I may have some more strength and energy to go do something else very low key later on.

Orange: This means “warning.” On these days, I really need to watch what I do because if I do too much I will be in a dangerous place and it may take me much longer to recover than if I just sit and rest. These days normally come after a long work week or if I have been doing more than I should be. The days where I wake up at an orange are the hardest because it takes so much to just bathe and get dressed. Sadly, there are many of these days that I still have to go to work or complete some tasks like the laundry or go to the store because it is just me in my household, and I have to keep things going. Once those tasks are finished, I do make sure to come home and rest afterwards. However, there are some orange days where I am able to just rest, which is great because that is exactly what I need to be doing.

Red: This means “not today” — don’t ask me to move or do a thing. These are my super bad days; I mostly stay in the bed all day. I only get up to get fluids and to use the bathroom. On these days, my number one priority is myself and making sure I am actually resting my body. I tend not to even touch my phone or computer because it makes everything worse. These days are especially dangerous for me because I have ran all of my reserves down. There is literally nothing left in me and that is not good at all. I try to avoid getting here as much as possible, but sometimes it is unavoidable because of the chaos at work or the juggling of appointments and familial drama just drains it all out of you. And if I get to a red day, it usually takes me about a week to recover.

It is also important to understand that I may start my day off at a green and because I feel so good, I overdo it and then boom, I am at an orange or a red. It has happened more times than I can count. But this is why we need to listen to our bodies and when the warning alarms begin to go off, it is important to listen to avoid further complications down the road. I can remember one particular time when I kept pushing my body day after day after day, and not only did I end up with an infection, I lost my voice for a month and had the flare of a lifetime. I then fell down the stairs and things continued to be compounded after that. And even after that, I did not rest or listen and it took almost four months to heal completely. I still firmly believe that much of this was caused because I was not taking the cues from my body and let things progressively stack on top of each other. It took me from green to red with no stops in between.

Another place where this system comes in handy is when communicating with family and friends about how you feel or how things are going. When folks ask me how I am doing, I mostly say “I am OK” or “I’m fine” because it is way harder to explain how I feel. And many people see my discussing my state of chronic illness as negative or that I am complaining, and that is not the case. But the truth is this is my reality — I will be ill for the rest of my life. I am in some sort of dysfunction every day — the level of that dysfunction just varies day to day. That is what life is like with chronic illness. For me, though, I just never know what, when and how bad illnesses are going to act up. It is a game of Russian roulette. However, I have been called out for my response always being “I am OK” or “I am fine” because it is generic and emotionless. I know there are some people I can be honest with and disclose precisely how I feel, and they take it in a way that is caring and helpful. Then, there are others who don’t know how to handle it and run away from once they get that answer.

So, I have found it easier for folks to understand the color system because it isn’t me talking about my symptoms or what is flaring up, but me talking about my ability for that day or moment. Many can relate to “today is red day so I am not able to go out” or “I am at a yellow, I am moving a bit slower” versus “my lupus is flaring up today, I can’t go” or “ I feel like my insides are falling out while someone is shoving razor blades up my vagina.” It is amazing how wording can make a world of difference in getting folks to understand.

I would challenge each of you to find a way to communicate how you feel in a way that is clear for you, but also remember it is not your fault you are ill. Others may not get what you go through and why you respond the way you do about how you feel and your ability to do things. But, that is not for you to deal with. I use this system more for myself so I can gauge what I am able to do and pause when needed in order take care of myself. It is just an added bonus that folks relate and can have insight into my chronic illness journey. Remember, this journey is yours and at the end of the day, you have to care for you and do what works for you, not anyone else.

Rock on, my warriors!

Photo by Autumn Goodman on Unsplash