What 5 Open Heart Surgeries Taught Me About Exercise

Living with a chronic illness has its fair share of challenges, and exercise always seem to be at the top of my list of challenges. For me, managing complex congenital heart disease has meant undergoing five open heart surgeries. Through these experiences, I’ve had to learn how to incorporate exercise into my life in a way that supports my health without overwhelming my body. Here's how I discovered my rhythm with exercise and the valuable lessons I’ve learned along the way.

My Early Experiences with Exercise

By the time I hit primary school, I'd already had one open heart surgery. And during primary school, I underwent two more. I recently revisited my old school reports and noticed a pattern: year after year, in the physical education (PE) section, it consistently said, "did not participate." My memories confirm this—I wasn’t involved in exercise much, and I certainly wasn’t very good at it. Every Wednesday afternoon, while my classmates participated in PE, I often sat out, doing something else.

Early Attempts and Frustrations

While I didn’t do PE at school, I did start some team sports outside of school. I joined physical culture and little athletics, among other activities. Despite my efforts, I was terrible at all of them. I distinctly remember the one time I didn’t come dead last in a race at little athletics—I came second last. To celebrate this small victory, my mum took me to McDonald’s. That was how low the bar was set. The cold weather and the discomfort of physical activity led me to dislike exercise intensely. It was never something I enjoyed.

Struggles in My Teens and Twenties

In my teens and twenties, I didn’t really do any dedicated exercise. I didn’t know how my body worked. I tried going for walks and even signed up for gyms, but I was absolutely wrecked after one or two sessions and quickly gave up. Exercise was just not something I did. After my fourth open heart surgery at 21, there was no substantial rehabilitation to help me understand my limits, what my body was capable of, or how to exercise and enjoy it. I just lived life as best I could, staying busy with jobs and running around, but without any dedicated exercise.

A Different Kind of Fitness in Cambodia

When I was 25, I lived in Cambodia for 18 months. Surprisingly, that was probably the fittest I’d ever been to that point, even though I didn’t do any regular exercise. I was just really active. I rode a motorbike, which required a lot of core stability. I was always out and about, seeing friends and enjoying good energy levels. I loved going dancing and clubbing to my favourite Pitbull songs (still a favourite, don’t judge me!). Despite not doing any consistent, dedicated exercise, I was fit and toned and really enjoyed that about my body. The challenge was that I didn’t know how to maintain it once my lifestyle changed.

Rehabilitation and Realisation in My Thirties

It wasn’t until my fifth open heart surgery when I was 33 that I finally understood what my body was capable of. This time, I had access to dedicated physiotherapy and rehabilitation. I spent three months in rehab at the hospital (as an outpatient) and then moved on to work with a fully trained exercise physiologist. This experience was a game-changer. For the first time, I learned how to exercise in a way that was both safe and effective for my condition. I finally started to do the things I’d always seen others do but had never been able to do myself. The lessons from that time have stayed with me, and years later, I continue to incorporate exercise that works for me into my routine.

Trial and Error

There’s no one-size-fits-all when it comes to exercise, especially for those of us with chronic illnesses. I experimented with various forms of exercise to see what felt best. Pilates turned out to be a great fit, offering strength and conditioning. Yes, I now officially classify myself a Pilates Princess! Cycling with an electric bike has also become a fav. I can go as hard or gentle as I need for the session and not stress over whether I’m going to make it home or run out of steam. I’m still terrible on a regular bike, but give me an electric bike and I’ll give you a run for your money!

The Importance of Rest

One of the hardest but most crucial lessons I’ve learned is the importance of listening to my body. Pushing through pain or fatigue often led to setbacks. Rest became an integral part of my routine. I learned to recognise the signs that I needed to take a break and not to view rest as a failure, but as a necessary component of my health regime. I’m still trying to read my body’s signals, and still stuff it up sometimes.

Small Wins Matter

With chronic illness, progress can be slow and sometimes hard to see. Celebrating small wins, like an extra km on the bike or an additional Pilates pose, keep me motivated. Keeping a journal of these achievements helped me see the progress I was making, even when it felt like I was moving at a snail’s pace. I also track my exercise in apps like Stava, and often wear a chest heart monitor, which help keep track more precisely.

Community Matters

Exercising alone can be isolating, but finding a community or support system can make a huge difference. I connected with local support groups and online communities where I could share my experiences and learn from others. Having people who understand my struggles and celebrate my successes has been incredibly encouraging.

Key Takeaways for You

1. Find an expert: Paying the premium for a university-trained expert can mean all the difference. They are rigorously trained to understand chronic illness and the body, and can tailor things to you!
2. Start Small and Build Up: Begin with gentle activities and stay at that level for as long as you need (months if need be). Don’t be shy in just doing a tiny bit, and certainly don’t beat yourself up for not being able to do as much as so and so on social media.
3. Find What Works for You: Experiment with different types of exercise to see what feels best for your body. Your expert can help you with this.
4. Listen to Your Body: Pay attention to how your body responds to exercise. Don’t be afraid to rest when you need to; rest is a crucial part of maintaining health.
5. Track Your Progress: Keep a journal or use apps to note your achievements and progress. This can be a powerful motivator and a reminder of how far you’ve come.
6. Build a Support Network: Engage with communities or support groups that understand your challenges. Sharing your journey with others can provide encouragement and valuable insights.

Remember, exercise isn’t a race (ok, unless you’re doing a race). It’s about finding a balance that works for you and celebrating every step forward, no matter how small. By listening to your body, starting slowly, and building a supportive community, you can find a rhythm that enhances your well-being and helps you adult well, despite the challenges of chronic illness.

P.S.

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