Everyone knows a cystic fibrosis exacerbation will knock you out physically, but it’s the emotional experience that can prove to be all consuming.
For me, it inevitably starts with denial. So what if I’m a little extra tired? What parent of a four year old isn’t tired? That’s weird I got out of breath reading a book to my daughter. My cough sounds bad but it’s probably just allergies.
As the reality sets in, the anxiety turns up. What if it’s really bad? What if it’s all in my head? It’s late on a Friday, should I really try to reach clinic now? What if they want me to go to the ER? What if I have to be in the hospital? What will my daughter do? She can’t be without me. I won’t allow it. She needs me. Can she tell I’m sick? How much does she understand? How could I be so selfish in subjecting her to this scary, horrendous disease?
I call my doctor and anxiously wait for her return call. I go to a Christmas program at church. My daughter is an angel. I smile and make small talk while my head is pounding, body aching, and mind swirling.
I get an appointment first thing Monday morning. My mom comes to be with my daughter. Another woman hiding her fear and grief— to protect her granddaughter, to protect her daughter, to protect herself. I go out into the cold, drive to the hospital, and wait to do pulmonary function tests. My FEV1 is down. I’ve lost 7 pounds since September. I feel scared and also a bit relieved. The beast has been named. We make a plan to do IV antibiotics at home.
The schedule of IV’s will be intense and overwhelming. The first night I have to wake up four times to start/stop meds because I am at the mercy of the timing of the home care company as my regimen begins. A nurse comes out to access my port and complains about having to accommodate my schedule. I am rude to her and feel resentful and embarrassed the next two hours as she observes my first infusion.
I don’t sleep well. The needle sticking out of my chest gets in the way, and I feel nauseous and full of meds. I’m afraid my alarm won’t wake me to dose through the night.
My people show up. As they always do. A friend takes my daughter to school and brings me flowers. My sister-in-law goes out of her way to help and love on my daughter. Another friend drops off dinner. My mom brings my favorite snacks and washes my hair. My husband’s parents call to offer help.
We send my daughter to spend a few days with my in-laws so I can rest. It feels like I’m forever abandoning her. It’s so hard to say goodbye. I settle into the couch in a haze of exhaustion, guilt, and Netflix. I am too sick to be comfortable but feel the first flutter of hope that things will turn around.
I’m finding my routine with the meds. Structure is my salvation. I give my daughter lots of extra hugs and remind myself that emotional pain holds meaning and growth— even for a four year old. I lose my patience with her too. I apologize and try not to let myself steep in the guilt. I am so tired. My husband is extra gracious and works extra hard to keep all the pieces moving.
Life starts to feel a little lighter. I am still a slave to the antibiotics but am able to laugh without coughing. My daughter and I read book after book because I don’t get short of breath anymore.
The cloud of uncertainty lingers. Am I getting better? Am I better enough? What if the antibiotics don’t work this time? What if I’m building too much resistance? Everyone around me has a cold. How long until I get it? Will I need another round of IV antibiotics? Will this be the infection that forever changes my quality of life? I feel alone in all the questions and chronic fear.
I think I cannot possibly go another day without being able to take a full shower. I feel grimy and desperate to cleanse myself of the last week.
I see light. In my body’s ability to heal, in my daughter’s bright eyes, in my husband’s steadfastness, in my mom’s genuine understanding, in my in-laws’ unwavering support, in my own discipline.
I continue with the grueling IV schedule. I measure my days by the timing of doses and assure myself I can at least get through the next one. I am so thankful I’m not in the hospital.
On Christmas Eve I open a letter from my insurance company saying that they will no longer cover six medications I take daily. The medication I need to survive. It all feels futile and hopeless. How can I keep fighting all the layers of this disease? I try to conceal my disappointment as my family and I make gingerbread cookies and talk about Santa.
I reach the end of the antibiotics. I finally get to sleep through the night and take a real shower! My husband treats me as if I just won Olympic gold.
Anxiety pierces the excitement as I remember the upcoming drug coverage battle with the new year. I know the relentless disease remains, but in this moment, I choose gratitude. I look into the next room and see my husband and daughter. I give myself permission to ease up on the fight, sink into the present, and fully absorb the joy that surrounds me.
Laura Jay-Ballinger is a 33 year old with cystic fibrosis. She lives in Indiana with her husband and daughter and is a psychotherapist. She is also a CFLF Recreation Grant recipient. You can contact her at jay.laura.ann@gmail.com.
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