One of the biggest internal struggles that I face on a daily basis is: how do I live my life to its fullest, and maintain my health and energy so that I don’t make myself sick?
Because of the trauma my body has incurred and the medications that suppress my immune system, my energy can be consumed much more quickly from simple tasks. And because there have been many times when the ability to pursue my dreams was taken away from me, I feel like I have to take advantage of every wakeful moment so I can experience as much as I can. Often these things come in direct opposition to each other.
In my early twenties I perceived myself as being a boring person because the thought of going to see my friends was daunting after attending a full day of class or doing a full day of homework. I would often bail on my friends and tell them that I was sick, when really I didn’t feel like I had the energy to get dressed, leave my house and interact with people. The lack of energy was really because of my underlying illness, but not having enough energy to do something easy like hanging out with friends rarely seems like a valid reason not to do something. So I felt like I had to make ‘excuses’. At the time, I also didn’t know how to manage my energy, and since I was a lot sicker my energy would drain way more quickly than it does now.
About two years ago, I discovered the Spoon Theory. The Spoon Theory is a short (true) story that helps explain what it is like to deal with illness on a daily basis. It describes how people with chronic illness only have a certain amount of energy to use up every day, which makes it difficult to accomplish all of our priorities and more. If you have used too much energy during the day, by the time it is evening, making dinner may be a difficult task. And if you push your energy too hard that day, you will probably have less energy to use during the following days. Our energy is not simply reset by one good night’s sleep – and that is if you can get that proper sleep.
Discovering the Spoon Theory helped me actually articulate that sometimes I don’t have the energy to do something. It helped me learn how to manage my energy so that I can actually feel good more often and not have to sacrifice the experiences that I want to enjoy. Once I read the Spoon Theory, I came to understand why some days were more difficult than others. I learned how to schedule my time and energy properly when I knew what my upcoming schedule looked like.
The most frustrating part of figuring this out, and becoming a ‘responsible adult’, is that sometimes I have to say no to chasing some amazing experiences. I started a new job last week, and the weekend before I started, a bunch of my friends went on a weekend road trip. Reluctantly, I had to decline going, because I knew that I wouldn’t be able to start my job with all of my energy.
Although I did experience the ever-hated FOMO (fear of missing out), I am also grateful to this part of my experience because it has really helped me decide who I want to spend my time with. I have learned how to choose friends who don’t take too much energy from me when I am with them, who don’t get mad at me when I need to go home early or cannot always hang out, and who still support me when things are rough.
I have also learned how to choose friends that will still dance with me into the early hours of the morning. Because sometimes it is worth it to sacrifice tomorrow’s energy.
Maya Stern is a 26 year old long-term cancer survivor. She graduated with a Masters of Public Health, and a Bachelors of Environmental Studies. She practices yoga, and enjoys reading and writing. She is in the process of writing a book detailing her experiences with chronic illness. Maya works as a Youth and Family Program Coordinator for Shoresh Jewish Environmental Education, running educational programs and managing their organic garden.