I’ve been having a hard time accepting that I am sick and will never get better. After six years of seeing various specialists, my current rheumatologist has determined that I am probably in the early stages of Lupus. I’ve focused so much on finding out “what,” I never really spent much time grieving my old life. Lately, I’ve been really frustrated that it takes all of my energy just to get through a five-hour shift at work, and that it takes about a half hour for me to get out of bed in the morning. While trying to reach my daily word count goals and manage some promotion, I struggle with things like joint pain, fatigue, GI issues, and Lupus fog, for starters.
But, writing is not only what I do—it’s also who I am. I made the decision in October 2011 to be a professional writer: make a living off my fiction, and continue to improve my skills. This means that every day, no matter how I feel, I have to do something to move forward. Luckily, writing is not a fast-paced career like, say, working in retail is. I can take breaks when I need to. It’s not physically hard at all to prop myself up in my chair with pillows. It is, however, mentally draining, especially on days when I’m already at low energy.
Coffee helps, and Emergen-C gives me a boost of B vitamins. The most important thing, though, is knowing when to work and when to rest. It sounds easy, but it isn’t when you have a chronic illness. When you have a cold, you can push yourself because you know in about a week, it’ll be gone anyway. I never know how long a flareup is going to last. Pushing myself one day can cost me dearly for an entire week. I now have to measure my every move.
Sometimes, I’m not sure how I do it. There are nights when simply reading through a manuscript is too exhausting. Trying to juggle my part-time “day job” at the department store, my chronic illness, and my writing career often feels overwhelming, but simultaneously motivates me. I may not be able to change how I feel, but I can control what I make of it. I don’t want to be the sick girl who can’t work. Because writing is something I love and am good at, I’ve turned my illness into a sort of game: become a full-time author so that I don’t have to worry about struggling to keep a regular job. Building my writing career also means improving my quality of life.
To my surprise, Laura Hillenbrand, author of Seabiscuit, suffers from Chronic Fatigue Syndrome. She talks about utilizing her best time of day, the morning, to get her writing done. A documentary about Ida Kolader, a young woman living with Lupus, looks at how life is “twenty percent what happens to you, and eighty percent how you deal with it.” I’ve decided that my writing is my eighty percent.
What’s your eighty percent? Do you have a chronic illness? How do you balance your writing career with your health?
Creating a Writing Lifestyle
Part I: Getting Disciplined
Next Time: How my responsibilities impact my writing career, and how I make it all work.