When Illness is a Full Time Job: How to Organize Your Life

To say I’ve been a little stressed about work would be a bit of an understatement these days. Lately I’ve found myself writing non-stop for five or six hours at a time, only looking up to snap a few pictures of Happy.

And I’ve actually been thinking about my work schedule a lot. Right now my plate is pretty full, I’ve even had to turn down clients. Real clients—with money in their pockets and everything. I keep thinking: Okay. I’m working part-time with this client, and that client–and those two other clients—but there’s something else. Why was I always short on time and energy? What was I doing all day that was keeping me so busy and distracted?



Oh–yeah. That.

I forget sometimes: but my disease is a full time job.

There’s Cardiac Rehab three times a week, and then the IV on Tuesday, and the doctor’s appointment on Thursday—and any little gaps in that calendar
during the day? You’ll find me facedown on my desk trying to figure out how to squeeze in a nap between press releases.

The consequences are just as real as a job. If I don’t work I won’t get paid and I can’t pay for my rent or my car insurance or my groceries.

And if I don’t take care of my disease by going to cardiac rehab and getting my IV’s on schedule or taking my medicine–I’ll get sick, be hospitalized, and lose all the freedoms and privelages of my normal life.

In high school and college you might be able to get your classes and teachers to work with you–but the real world has no 504 plan and you’ve got to learn to maximize your energy to earn money, sustain relationships, and organize your life.

I find myself in enough hospital rooms and  unintentional napping scenarios that I wouldn’t rush to call myself an expert on a perfect life with chronic illness–but I’ve got a few tricks up my sleeve I can share:

My Tips for Fitting a Crippling Chronic Illness In to Your Busy Work Schedule

  1. Work from home, otherwise you’re fucked! Yeah, there would be just no way. Telecommuting is the way to go. This is what they invented Skype for.
  2. Learn that prevention of flares is less time-consuming than actually having them constantly. Cardiac rehab? Check. Weekly SCHEDULED IV? Check. Nap when I need it? Check. (Mostly.)
  3. Don’t take it too seriously. You miss something? You’re too tired or too whatever to do something? Don’t beat yourself up over it. There’s always another day. There’s always tomorrow. You fail a class? Whatever. You have to withdraw? Whatever. School ain’t going anywhere.  (Tip Courtesy of R.J)
  4. Have a few irons in the fire. At some point, we all fall down. And when we do–it’s great not to have been relying on a single project, job, or paycheck. Working from home gives you the opportunity to manage multiple opportunities. Find a way to manage them.
  5. Keep an agenda. If I don’t write down an appointment in my calendar–it’s dissapears, never to be thought of again. I’ve completely blacked out important events when I forgot to write them down. Chronic illness has a way of compromising plans (and I tend to try and fit in a nap/relaxation/intense down time whenever there’s a gap in my calendar. The worst is waking up from a nap to realize you forgot a conference call.
  6. Save for a monsoon. Forget a rainy day, with a chronic illness you never know when you’re going to be down for the count. Start putting away half of every paycheck into savings. Live beneath your means, and try to always have an emergency fund for those crappy weeks when you just can’t do it.

What’s your advice for living a less chronically interrupted life?