Celebrating The Benefits Of Exercise With Trikafta
Let’s talk about exercising with cystic fibrosis. (Soft groan from the peanut gallery). Everyone’s aware of how important it is for both your physical and mental health to exercise regularly. It’s been drilled into us since childhood. Almost every outlet possible maintains that exercise is vitally important to cystic fibrosis care. In CF, the benefits of exercise include:1,2
But what happens when moving your body is draining and mostly painful? Think--coughing until you puke, wheezing, lightheadedness, rapid blood sugar changes, replacing calories burned, joint pain, etc. In those circumstances, exercising with cystic fibrosis isn’t always easy or tolerable. It’s an exhausting process when you are already exhausted at a motionless baseline. I truly felt this way until I experienced the life-changing increase in exercise tolerance from the new CFTR modulator, Trikafta.
Building exercise tolerance with cystic fibrosis
Over the last few months, I have watched my exercise tolerance increase to a point I had mostly forgotten about. Finally, I am able to cycle on an indoor bicycle at a rate that challenges me but doesn’t kill me. Using my own body weight to build muscle and increase stamina, I can complete a workout without coughing so much I puke. It’s still incredibly hard, but I can do it--and I want to continue doing it.
Honestly, I haven’t seen miraculous improvements in my physical symptoms from exercising a few times a week--but I know it’s not doing any harm either. However, I have noticed the transformative role exercise has played in how I perceive my body and my cystic fibrosis care.
My body is capable
I can’t breathe. I can’t digest food. I can’t maintain normal blood sugar. The list of "I can’ts” could go on forever with CF. And while realistically those statements are all true, regular exercise has reminded me to celebrate the resounding “I cans”. I can sweat. I can build muscle. I can complete this workout.
I need to give my body a lot more credit than I do, and I can thank regular exercise for that realization. All those beautiful “I cans” continue to open my eyes to how capable my body is even if it is all kinds of wonky.
Active vs. passive treatment
A couple of times a week, I put on my mom leggings, lace up my tennis shoes, and decide to devote a short 30 minutes to myself. Taking care of myself to the best of my ability, It’s an intentional choice I make that day.
I make a similar choice to sit down and complete my airway clearance and swallow my pills each and every day. Once those medications enter my body, I have very little control over their efficacy. They either slow the decline or they don’t. They treat the symptoms or they don’t. They make it better or they don’t. CF treatment is relatively passive a lot of the time. I spend hours of my day yielding to passive forms of treatment. It’s maddening, heartbreaking, and depleting when a passive treatment proves to be meritless despite your dedication.
That’s where exercising is different. It is something I am doing and not something that is being done to me. There’s a significant difference in the experience of those two things--one summons power, while the other deprives. Quite frankly, after my serious decline last year, I’m sick of fighting my disease passively. It’s just not enough to come out on top.
How has exercise changed the way you see yourself and your cystic fibrosis? Share your thoughts with the community!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?