Waking up with the first signs of a cold is no fun for anyone. My first thoughts might be “do I call out of work, or do I ride it out and mask the symptoms with medicine?” Unfortunately, waking up with cold symptoms when you have cystic fibrosis tends to be more complicated. The course of action may not be as simple as calling out of work for one or two days; and riding it out is not usually the best option. What if things get worse? With the many battles I have faced against CF, I have learned that being in tune with my body and addressing what I need to take the best care of myself is vital when living with chronic illness.
With changing seasons and environmental factors at home or while traveling, I often find it difficult to pinpoint the cause of symptoms. Why do I feel like I'm breathing out of a straw this week? Why am I beyond exhausted today? I consider the elusive answers to these questions my nemeses. As I've taken more control of my health in recent years, instead of trying to make sense of the minutiae, I've found that I'm better suited focusing on what I know are the best decisions for me. If I have more congestion than normal, I work extra airway clearance into my schedule. For me, sometimes the solution is as simple as finding time in the day to just breathe.
Unfortunately, these more straightforward tasks don't always cut it, and it is my responsibility to recognize this and act accordingly. In the past year, I have sensed something brewing several times but was unsure of the cause. It is natural for my mind to automatically fear infection, intravenous (IV) antibiotics and hospitalization. I had a long and tedious cycle of this for almost two years, and I will do whatever it takes to try to avoid that downward spiral again. My first action is to contact my doctor and explain my symptoms in detail. Often, going in for a visit is best. Recently I experienced inflammation very soon after a three-week course of IV antibiotics, which caused other uncomfortable side effects, not to mention frustration. My doctor changed my medication regimen, and things quickly turned around. I trusted my body was telling me that something was wrong, so I chose to be proactive, rather than let the situation get worse.
I have also learned that living with CF is not usually about doing what's easiest. It's 9 p.m., I've had a long day, I have not washed the dinner dishes and the last thing I want to do is an hour of airway clearance. But the reality is that every treatment keeps me at my healthiest. If I miss a treatment (I'm only human, after all), I can almost always feel the repercussions. My body is used to being taken care of, and like a newborn baby, it will cry for help if I don't nurture it.
Sometimes the decisions we face are tougher than “to vest or not to vest.” The decision to go on IVs or be admitted to the hospital can feel like a relentless struggle with my own mind. The sacrifices I often make for my health can seem never-ending, and in turn, discouraging, upsetting and even depressing. I have come to terms with making my health my number one priority, because in the end, the consequences will outweigh the disappointments. And believe me, I have had my fair share of disappointments -- I've missed vacations, parties, birthday dinners, concerts, weddings, my senior year spring break trip during college and, most recently, a bachelorette party.
I don't recount this for sympathy. I do it to drive home the point that no matter what, I stand by listening to my body and what it needs, no matter the personal cost to me. When I chose to skip out on a bachelorette party back in May, I did it so I could go on a thorough course of IVs and leave a few weeks later -- feeling good -- for a Memorial Day vacation with my boyfriend. People with CF are individuals in every sense of the word. What works for me may not work for another, but life is about choices. Make the choices that you will most benefit from. When it comes to CF, I choose to do things not usually because I want to, but because I have to.
July 2017 -- We were deeply saddened to learn of Amanda’s passing. Amanda opened her home to us for a photography shoot in 2016, and her heart to the CF community through our blog. She will be missed by many.