9/27/2012 8:53 AM
By Christy Sillman
I’ll admit it—I’m a control freak. I’m a type-A, people pleasing, perfectionist wacko. I don’t know if it’s from growing up around medical personnel (they’re generally all type-A people) or if it’s genetic, but it’s just who I am. I’m often up late at night reassessing my five-year plan and adjusting as needed. I like to plan—I don’t formulate only plan A and B, I’ve got at least through plan F prepared.
One of the most frustrating parts of living with CHD is not being able to truly plan. With the unpredictability in the nature of our disease—the periods of “normalcy” followed by huge life upheavals when there’s a new procedure or surgery we have to face—it’s sometimes easy to feel out of control or depressed. When I was diagnosed with cardiomyopathy after my pregnancy I was devastated and fell into an angry depression; I was focusing on what I couldn’t control and I felt helpless.
After one blunt and motivating conversation with my cardiologist I began focusing on what I could control:
- Exercise: AS LONG AS YOUR PHYSICIAN APPROVES IT – BE SURE YOU KNOW ALL YOUR RESTRICTIONS! One of the best things we can do for our heart is to strengthen that muscle! I started doing 30-40 minutes of cardio four to five times a week. At first I wanted to vomit and could barely do the lowest setting on my stationary bike, but I always poured my pent up anger/depression into my work out and GRASPED the activity as my control lifeline. It’s made a HUGE difference in my heart health.
- Diet: I started eating healthier. As little sodium as possible, and I also went on a gluten-free diet after I discovered I have gluten intolerance. Fruits, veggies, and all the good stuff my heart needs to keep beating strongly.
- Medications: I take pride in my medication organization. I may feel 80 years old as I place my pills in their AM/PM daily designated spot in my weekly pill pack, but it keeps my medications organized and easy to take. I like the feeling of control and organization I get with it.
- Sleep: I do my best to get a solid 7-8 hours of sleep a night. It’s a process to wind down and shut my brain off, but after years of working night shift and having insomnia, I know that doing my best to get quality sleep is only helping my heart in the long run.
- Support: I surround myself with people who uplift and support me. I don’t have the time to put up with negative or emotionally harmful people. I’ve also met a ton of ACHDers online and in person. I’m so happy to have people who TRULY understand at my disposal.
- Dental health: Did you know one of the best things you can do for your heart is to keep your mouth clean? I used to be a “once a month” kind of a flosser, and now I strive for at least “once a week.” I take my pre-medications as prescribed and make sure to get teeth cleanings every six months.
- Contraception: After the development of the cardiomyopathy, we decided I should never get pregnant again. I struggled through several different forms of birth control, and not tolerating any of them, we decided to make our decision permanent. I’m sad about the decision but ultimately I know this permanent protection will be one of the best things I can do for my heart.
Congenital heart disease is a wild rollercoaster that we have no choice but to ride. We can scream and close our eyes, or we can enjoy the ride to the best of our abilities and lean in with the turns—grasping the little bit of control we have.
I haven’t always been a good CHD patient. I had many years of rebellion where I just didn’t even want to acknowledge my CHD, but now that I’ve seen how my involvement makes such a big difference I feel empowered and motivated to do whatever I can to make my heart as healthy as possible. What sorts of things help you cope with the loss of control we commonly encounter?
Christy Sillman was born with tetralogy of Fallot with pulmonary atresia and now works as a pediatric ICU nurse. She is passionate about working with both children and adults with congenital heart disease. Christy writes a weekly column on her experiences as a nurse, ACHD'er, and new mother, which you can read at iPinion.us by clicking here.
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