Life is a balancing act. Everyone has to balance their time, money, energy, relationships, and goals. Everyone’s balance looks different depending on what is important to them. But inherent in the definition of balance is the idea of having a choice of how to balance those resources, meaning that at the end of each day, no matter how one has chosen to spend their resources, there are some left over.
My life with a chronic illness is not a balancing act, it is a puzzle. It is a puzzle, because I have very limited resources and have to figure out how they fit together each day, in order to get to the end of the day. There are often very few combination of pieces to get me to the end of the day. But to make things a little bit harder, the pieces are often damaged.
My energy pieces are all worn and bent from not being able to eat, chronic fatigue and frequent migraines. I hoard these pieces, knowing that there is no way to get more of them. Each day when I look at everything I have to get done, I know that there is absolutely no way that my energy pieces are going to make it to the end of the day. But somehow I make it through each day.
On the weekends, I will sometimes choose to re-arrange my puzzle pieces to try to be normal and have fun with friends. What people don’t often see, is that I come back, hook up my TPN, and sleep 12 hours and then spend the next day in bed doing homework. People see a very limited portion of my puzzle and make assumptions about how my pieces fit together.
To be honest, this is both hurtful and highly frustrating for those of us living with chronic illnesses, because we do our very best to live lives that appear normal, but people sometimes treat us like if we do no spend all day in bed crying and thinking “woa of me” then we aren’t actually that sick.
I don’t always make my pieces fit, but each and every day, is a struggle to make life work. I know that most people, see very little of my puzzle on a daily basis and that is on purpose, so I appear “normal” but if you were to take the time to look deeper, you would realize the struggle of living a not so normal life.