A Reminder on Limits
As a care-giver, I feel both happy and fortunate to see my wife responding well to her medication, Rituxan. Over the past six years, Lisa’s Rituxan infusions have brought her RA under control and enabled her to lead an active life. She has the ability to teach her music students and write an abundant amount of patient-advocate material. Physically, she has improved to the point where she can exercise regularly or work several hours outside in the yard. The medication clearly works. Nevertheless, Lisa is still a patient with two chronic illnesses. And sometimes I need a reminder that she still has limits and that I need to be aware of them. Earlier this fall, I received just such a reminder.
Not long ago, Lisa attended a 3-day conference hosted by the Patient Centered Outcomes Research Institute (PCORI), an organization that focuses on patient-driven research to improve patient care and outcomes. Lisa serves on the communications board for one of the PCORI-sponsored initiatives, iConquerMS™, for which she does much of the work remotely. She is pleased with this working arrangement, but was nevertheless excited about the conference as it would give her a chance to learn more about the organization and work face to face with her team.
The conference was local to us, so Lisa commuted to the event site each day. Sessions began at 8 AM each morning, with breakfast often preceding the day’s events. This meant that Lisa was usually up at 5:30 AM getting ready to head into town. By 6:15 AM we were in the car and off to the subway. Meetings typically finished between 4:30 – 5:00 PM, at which time she hopped back on the subway and headed home, or stayed late for an evening event. After a 35-40 minute train ride and a 15 minute car ride, she would arrive home after a 12-14 hour long day. By the end of the conference, Lisa was thoroughly wiped out and spent most of the weekend recovering from the frenetic pace.
There is no question that Lisa thoroughly enjoyed the conference. She was engaged, active and enthusiastic about furthering PCORI’s efforts toward improving patients’ lives. Still, watching her expend so much energy over the course of those three days and then seeing her through a weekend of recovery served as a reminder that patients with chronic illnesses have limits that most other people don’t have. Lisa drove this point home not long after the conference when she remarked to me that the experience reminded her that she likely couldn’t manage a typical 5-day 40+ hour/week work schedule. Even in a perfect work scenario, the various physical and mental demands of the work week would leave her feeling too drained to be able to do anything else.
I confess that my wife’s observation was a real eye-opener to me. Her various responsibilities as teacher, consultant and writer often keep her working far more than 40 hours each week. Consequently, I didn’t really consider that working a similar amount of time in an office setting could be much different. Upon reflection, I began to understand her position. Working from her home office allows her the flexibility to work at times that suit her and keeps her largely free from the hassle of commuting and the hustle and bustle of the workplace. As a patient, such an arrangement saves her from a significant loss of stamina.
More importantly, I realized that perhaps I’d become a little too blasé about Lisa’s good health. Yes, the infusions had brought her (and I) a pronounced improvement in quality of life. And yes, this improvement had brought a certain sense of stability to us both. But as a patient with two chronic illnesses, Lisa still has limits different from others. As her care-giver, I need to be mindful about monitoring her abilities and her limits. With proper diligence I can help her take the right steps to navigate these challenges, even during the busy stretches.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?