Every morning and night, I do what I call a "treatment." A treatment consists of inhaled medications – a short-acting bronchilator, a long-acting bronchodilator, a steroid for my sinuses, a mucolytic, a mucus thinner, an antibiotic – during chest physiotherapy, or the vest, that inflates and vibrates to help clear the thick mucus in my lungs. On top of this, I take a series of oral medications: vitamins, enzymes, a drug that helps liver function, an anti-inflammatory, a maintenance antibiotic, enzymes that break down food, and a CFTR modulator. I also have to exercise daily, ensure that I get enough sleep to help maintain my body's constant fight against infection, and be cognizant of my hydration levels, electrolyte levels, and even my glucose levels because I'm borderline diabetic (there's a form of CF-related diabetes).
I've been wanting to write about daily life about CF for a while, but admittedly, I wanted to do it in an educational way. Not this way. I've become so immersed in this daily regimen that it's been a long while since I realized how cumbersome and stressful it is.I'm not writing this to solicit pity or sympathy, but because writing is my catharsis and I'm sick and tired of this shit.
In my life, compliance isn't an option. Doing these treatments and exercising consistently are quite literally keeping me alive. If I were to succumb to the laziness that I so dearly want to succumb to and take a weekend or week or month to just relax and forgo my treatments, I would most certainly end up in the hospital. It is not hyperbolic to say that a short respite from my treatments could put me in the hospital with a severe infection.
This reality is terrifying. It's true that life is fragile for everybody, but the reality of how fragile life is is an intimately known truth in my world. In my experience, the fragility of life isn't something most 23-year-olds think about. But living with CF and being a sibling of somebody whose been through end-stage CF and two double lung transplants has forced me to consider that fragility deeply. It's forced me to think deeply about the people whom I love and the goals I want to accomplish in my life. It's made me an existential person who is somehow simultaneously petrified of death and comforted by the idea that I just might know what could be the end of my life.
I wrote a poem last week that wasn't supposed to be a poem but ended up as one. I'll post it below, but it was about how living with CF is a complex paradox of hope and fear.
It was originally going to be a post like this one, but I started fidgeting with the formatting and I found some meaning in it, so it became a sort of poem about balancing hope and fear. When I started writing it, I was terrified of my future. By the end of it, I felt extremely hopeful. I hoped that that hope would stay longer than it did. Unfortunately, it didn't.
If I had it my way right now, I would cease all my treatments for a bit, just to see what life would be like as somebody without CF. I often joke about life with CF. I often discuss and write about how, without CF, I'm not sure I'm the emotionally complex and passionate person I am today. But I guess that's a facade; I would do anything and everything to annihilate this awful disease from myself, my sister, and everybody else who has the misfortunate of dealing with it.
Since I am in good health and relatively educated on nearly everything in regards to CF, I feel responsible to be the anchor of hope for everybody around me. I suppose this is a responsibility I've bestowed upon myself, but nonetheless, it's something that is a core part of my life and my character. At this moment, I can't find the fortitude to be that anchor.
I'm so sick and tired of this of this godforsaken disease. It's stolen so much precious happiness and time from me and my loved ones that I'll never get back.
When I write these posts, I usually try to find some bigger meaning or motivation for hope to inspire the reader and ultimately myself. But right now, life just feels like too much to bear.