Very rarely do the things I want to do and the things my body will allow me to do correspond, and nowhere is this conflict more evident than in my career. While the competition between the needs of the body and the desires of the spirit is one that has lasted a lifetime, recent events prove I’m not nearly as enlightened or reasonable as I’d thought I’d become.
Let’s rewind things a few years. When I was in college, I took five courses a semester, worked on the campus newspaper 30-40 hours a week, interned another 15 hours a week, and was also pretty social. I was also routinely hospitalized for weeks at a time. Coincidence? Not so much.
In fact, it was a fairly straightforward relationship:
The more time I pushed myself and logged hours that would drag down even the healthiest person, the more time I inevitably spent in the hospital because my respiratory infections and exacerbations were so hard to contain. It was a vicious cycle, this “I’ll take on as much as I can to prove it doesn’t matter that I am sick” game I insisted on playing, and I never, ever won.
At twenty-seven, I should be older, wiser, and much less prone to these control issues. Right? Well, I am…mostly. I am much less intense and stubborn than my college self.
Partly this is because I have matured a bit. It’s also because my diseases have progressed and between that progression and finally getting more accurate respiratory and autoimmune diagnoses, I’ve been forced me to take a hard look at my choices and my baseline health status.
I’ve reigned in the acute hospital crises, and I’ve come to see that I pay a price for living in the extremes of overly committed or completely bedridden that extends far beyond a week in the hospital or an acute flare.
I cannot always control my health, but I can try hard to control the factors that make my health worse. (Say it out loud. Repeat as needed.)
Juggling multiple chronic conditions and the pain, fatigue, and various unpleasant symptoms they entail takes a lot of work. Add to that a job in academia, a freelance writing career, a book that’s coming out in a few months, and spending quality time with my husband, family, and friends, and it seems like I am always negotiating and prioritizing.
Of course my natural inclination is to say “yes” to every opportunity that comes my way because I’m building a career, but if I want to maximize my health, I have to set limits.
I’ve worked to create a schedule with built-in flexibility: I work from home two days a week. My courses are bunched together so I have less commuting back and forth and I can get my daily chest physiotherapy in the morning. I stagger freelance assignments so they are not all due at once.
I rest more often, and if I’m feeling terrible, I snap the laptop shut and pay attention to my body’s signals. Even on a workday. My college self wouldn’t recognize such sanity.
And then I got a respiratory infection a few weeks ago that really knocked me over. I’d already been sick for over a month when this new infection hit, despite lots of medications, plenty of rest, and lots of sacrifices. I was so frustrated that I’d done all that and still got even sicker, and all my time management skills and reason went out the window.
My laptop followed me to the couch and the bed, where I set up camp because I was too weak to sit at my desk, and instead of resting, I typed on the computer that rested on my stomach. As my fever increased and my oxygen decreased, I became increasingly incapable of saying “no.”
Before I knew it my schedule was more packed than ever and I was overwhelmed, anxious, and stressed out. It was a cycle I knew all too well, one I thought I’d escaped. It made my recovery longer, and made accomplishing all those tasks I’d signed on for much harder.
Ah, control. I try to do the right things. I make financial and emotional sacrifices for my health but sometimes I get sick anyway, and I can’t always control that. It’s an occupational hazard of being chronically ill that we all face, and it’s a tough one.
I cannot always control my health, but I can try hard to control the factors that make my health worse. (Say it out loud. Repeat until balance has been restored. Remember how good that feels. )
Laurie Edwards runs A Chronic Dose, an award-winning blog about life with multiple chronic illnesses. In addition, she has written for periodicals including Glamour and Boston Globe Magazine; she is the author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties (Walker and Co., July 2008); and she teaches writing at Northeastern University in Boston, MA.