CF Doesn't Take Time Off
Updated: Jun 30
By Sonya Ostensen
Like CF, life can be messy. While my squirrel mind was going in a million directions of commitments and items to tackle on my to-do list, my body felt like a cement block at the bottom of a lake. During the last four months my energy has been at maximum capacity, and I’ve said yes to most everything while also neglecting the delicate balance of self-care, all of which finally caught up to my cellular health. As I laid on the couch unable and unmotivated to move, memories of my sickest days and nights came flooding back to me. That’s when it hit me—I have once again forgotten to prioritize my health over activities. The people and activities I want to invest my heart and energy into need to come first; however, to invest in others you must first take care of and love yourself. How did I forget this? Have I not retained any wisdom from living with this disease? My lungs are gurgling, and I have been building yet another leaning tower of tissues on the floor. Yes, I remember this. I also remember the hardest thing about being sick is feeling left out of moments and time with family and loved ones. During some of my sickest moments, it was easy to slip into a depressed state and unconsciously hold a grudge against my caregivers and supporters. Staying in the moment is hard enough on a good day, let alone doing so while exhausted and in pain.
The people and activities I want to invest my heart and energy into need to come first; however, to invest in others you must first take care of and love yourself. How did I forget this?
Since modulators, I have not experienced the major lung and sinus infections that used to result in hospitalization and IV antibiotics at least one to two times per year. However, I’ve discovered something new to cope with lately. It is very subtle, but I feel like something is off with my psyche. A minimal amount of depression creeps in from time to time. Often this depression is amplified with work stress and anxiety from idiopathic neurological eye issues. I cannot definitively say these symptoms are solely resultant side effects from modulators—other circumstances have coincided. For example, I sometimes experience brain fog, possibly due to long-term COVID-19 ramifications and/or hormonal imbalances while going through perimenopause. Recent stressful life events that have tested my marriage are certainly not helping these moments of downheartedness. There are also the normal parenting trials and tribulations that often cause me to second guess myself. All these factors combined cause me stress, which ultimately leads to physical repercussions.
Circling back to the morning on the couch, where my motionless body had succumbed to an overactive mind, depression and fear began to take up my head space. I couldn’t help but think that I had sabotaged myself and would end up in the hospital on IV antibiotics, which would cause a larger absence from life, or worse. Then anger set in, but I was too exhausted to stay in that state, so I fell into a deep sleep. When I awoke, the overwhelming feeling of doom had subsided and everything seemed manageable again. I kicked into self-care mode which included sinus rinses, aerosol treatments, extra vitamins, eating, supplements, and so forth. With each healthy action, I started to feel better psychologically, which aided my body’s physical recovery. I did not end up in the hospital on IV antibiotics and realistically only missed a minimal amount of the life still happening around me. I suppose over the years I have developed this process of coping with illness and now it is also proving a useful tool to pull myself out of mental black holes. As I have reflected on these events, I’ve wondered if perhaps this time my fear was not about missing out on life, but rather, regressing back to the old, sick me before modulator therapy. I have not discussed any of these observed changes with my CF care team simply because I am not yet ready to discontinue or adjust the dose of Trikafta. However, I am aware of these changes in my body and mental health and will remain vigilant if they happen to worsen.
I leave you with this quote from Eleanor Roosevelt:
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
Sonya Ostensen is 47 years old and has CF. She is the interim Secretary for USACFA. She lives in Melbourne Beach, FL, with her husband, daughter, dog, and three cats. She holds a Bachelor of Science in Environmental Sustainable Resource Management from Ohio State University. After working in environmental health, she retired due to CF complications. Sonya has a passion for wildlife rehabilitation and loves to travel with her family and experience new cultures. Her favorite activities include gardening, baking, walking the beach, volunteering at her daughter's elementary school, and climbing trees with her beautiful daughter. Her contact information is email@example.com