Strategies that make exercise with pulmonary fibrosis easier for me

Exercise is important for people with chronic illness. But as someone living with idiopathic pulmonary fibrosis (IPF), a disease characterized by progressive scarring of the lungs and difficulty breathing, I know working out is easier said than done. I’ve also found some strategies that make it easier for me.

Last August, I underwent surgery to repair my left knee. I knew it would involve an extensive recovery, but I never thought I’d still be struggling to walk nearly five months later. I’ve been doing physical therapy weekly, but I recently met with my surgeon, who recommended another approach.

My surgeon acknowledged that my recovery seemed slower than normal and suspected that combining an exercise program with my physical therapy goals could expedite the process. I’ll now be working out in a gym under the supervision of a physiotherapist and a kinesiologist to hopefully mobilize my knee faster. While I’m excited about the possibility of being able to walk sooner, I’m also anxious about starting a gym-based rehab program.

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While exercise is beneficial for those of us with IPF, it’s also challenging. After my diagnosis in 2016, I wanted to keep playing sports as long as I could, thinking my lung disease would progress slowly. To ensure my safety, I had to take many precautions, and eventually I grew tired of explaining to others why staying active, despite my lung disease, was important.

When I reflect on that experience in anticipation of starting a new rehab program, I remember the following strategies made exercise easier in the early days of my IPF journey:

Transparency: Back in 2016, I didn’t require supplemental oxygen while playing sports or working out at the gym, so most people didn’t realize I was living with a progressive lung disease. One of the challenges of IPF is that it can be invisible, so I took it upon myself to be transparent about my disease with my teammates, coaches, and program staff — especially the lifeguards supervising me in the pool. While it was uncomfortable disclosing my medical condition, I found that my transparency made everyone feel a little better. I never regretted my choice to share how others could help me remain safe.

Provide education: This went hand-in-hand with transparency; I always educated others about IPF, especially when they told me that I looked too healthy to be living with a lung disease. Although I quickly grew tired of constantly explaining my condition, it was important, because coaches and gym staff were then able to modify my exercises accordingly. These fitness professionals had a hugely positive impact on my physical and mental health in the early days of living with IPF.

Consistency is key for progress: As I embark on this new rehab program, I’m trying to remember the importance of consistency. As IPF patients, our bodies are already battling numerous symptoms, including hypoxia, shortness of breath, coughing, and joint or muscle pain. Given these issues, it’s easy to be inconsistent with fitness habits. While exercising regularly is important, I must also remember to show myself compassion.

Set realistic goals: This one is hard for me because I don’t want to accept that I can no longer keep up with my peers, even though that’s my reality. I recently had to reevaluate my goals for this rehab program because what I wanted to achieve in a month’s time wasn’t actually doable. This doesn’t mean I wouldn’t make progress, but my physiotherapist gently reminded me that setting an unattainable goal would result in me being hard on myself. My physical health will be taxed enough by exercise; I need to preserve my mental and emotional health by setting realistic goals.

Do you have any additional tips for exercising with a chronic illness like IPF? I’d love to hear from you in the comments!

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.