November marks National Family Caregiver’s Month. This month’s theme is “Take Care to Give Care.” For some caregivers, this theme has a deeper meaning, because in addition to being caregivers, they also are RA patients. In the first of a special two-part post, Christy Washington shares her experience in being both caregiver and patient at the same time.
I am a wife, a mother and a full-time teacher. My life is full, and my caregiving responsibilities center around my three children who are 16, 10 and 6 years old. Until three years ago, I didn’t know that I had rheumatoid arthritis. That was the worst time for me. I didn’t feel like doing anything I normally did with my kids. My kids would say, “Mom, you always decorated for this holiday!” but I didn’t have the energy for it. I felt so guilty. After I found out I had RA, I wasn’t as hard on myself.
Managing three kids and a full-time job is hard. In the past, I taught kindergarten. But this year, I began a new role. I teach third and fifth-grade math classes. It’s a new curriculum for me. Even my classroom management has changed. I need an entirely different skill set with 5thgraders compared to kindergarteners! I also provide reading and math interventions to small groups of students.
Having RA is a lifelong challenge. As with any chronic disease, there are times I feel good and times I feel terrible. The Vectra test has been useful for me in confirming how my body is feeling. Before I had my first Vectra blood test, I was having a big range of symptoms. The Vectra test score showed a high level of disease activity. It’s odd to say, but I felt relieved that the score showed what my body had been feeling. Since then, my doctor and I have used the Vectra score to inform therapy decisions. After my last Vectra, we decided not to make any changes.
Being a caregiver, my challenges are similar to those of any mom, trying to balance work, family and personal time. As a person with RA, my biggest challenge is the drastic change it has caused in my life. My energy levels are different. I gained weight after going on medicine. I just don’t feel like myself anymore.
As a caregiver with RA, it can be tiring. RA patients know those mornings can be hard. So getting myself and my kids to school by 7:05, when our school day starts, can be tough. When the day is over, I’m exhausted. I just want to go home! But I have after-school meetings, and two of my kids play soccer. I don’t get to come home and rest. My challenge is trying to get everything done when I don’t really feel like it.
I’ve learned to cope in a few ways:
In the past, I didn’t let my kids play sports, but this year I’m letting them play. During practice, I rest in the car while they walk to the field by themselves.
I’ve started doing yoga. I like having that time to sit and calm myself, to stretch and be mindful.
I also try to eat healthfully, which can also be a challenge. After working all day, I just want something that’s quick and easy. So I try to cook on Sundays for the week.
I don’t have any friends with RA in my local area, but I talk with a friend who has neuropathy from having chemotherapy. We both understand when you get to that point in the day where you’re at your limit. My mom lives nearby and helps.
I encourage anyone who has RA and gives care to others to make time for yourself. It’s really hard to do. Make some time, even if it’s just 10 minutes, to sit in your car and have a quiet time to relax, not thinking about the RA. You need just a little time where you don’t worry about anything. Take a little break.
…Check back next week for another perspective on life as an RA patient with caregiving responsibilities.
For more information about National Family Caregiver’s Month and tips for caregivers, please visit this link: http://caregiveraction.org/national-family-caregivers-month.