Listening to my body to better prioritize health and joy with PH

We can be tempted to push ourselves when we’re feeling OK and having a not-so-bad day with pulmonary hypertension (PH). Plans with family, weekends packed with activities, or even the excitement of feeling better than usual can make us want to do it all. But those of us with PH also know how quickly this condition can remind us of our limits.

Living with PH is all about balance. Overdoing it may leave us feeling drained. Missing out can sometimes feel just as hard. Finding a middle ground is key to staying healthy while making space for joy.

One of the most essential tips I can offer us is to listen to our bodies. They have an incredible ability to communicate our needs, often surpassing any detailed plan or checklist we might rely on. Yet it’s too common to overlook those subtle hints, ignoring the signals they send. Believe me, I’ve fallen into this trap too many times to count.

When I notice an increased shortness of breath, heart palpitations, fatigue, lightheadedness, or other symptoms, I realize I may have pushed my body beyond its limits. These heightened sensations are crucial reminders to pause or take a break. If we ignore these warning signs, we may face more setbacks. I’ve been there many times in the past two decades.

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Tips for tuning into your body

Understand your limits, which can shift daily when managing PH. Recognize how much you can comfortably handle on a good day. It’s acceptable to say no or adjust plans if they become overwhelming. Pace yourself, especially if you have multiple activities lined up; consider breaking them into manageable periods. I’ve found that taking shorter breaks between tasks and resting before significant plans helps tremendously. But again, it’s not always as cut and dried.

Remember to include recovery time in your schedule. When I know I’ll engage in more active or social activities than usual, I’ll try building in recovery time afterward. The time needed can vary; I might bounce back quickly after some activities, but find myself slower and more fatigued after others. After a busy weekend recently, I noticed that I struggled more than usual to regain my energy for the next three to four days.

With PH, energy becomes a precious gem, making it essential to focus on what truly matters to you. Ask yourself: “What will bring me the most joy?” My therapist recommends tracking my “spoons”  (a metaphor for energy levels), using medication alarms that already sound five times daily.

I’ve discovered that checking in with my midday and afternoon alarms works best for me. I stop and ask myself, “How many spoons do I have left?” Being mindful can help you allocate your energy wisely, dedicating less to mundane tasks and more to what brings you joy.

One of the toughest challenges in managing PH can be the fear of letting others down. However, open communication with family and friends can make a significant difference. Share your experiences and express why pacing yourself is crucial. Suggest alternate ways to connect, such as a video call instead of an outing, or a cozy Netflix evening in place of an all-day adventure. Your loved ones genuinely care about your well-being and will likely want to support you.

Try to limit yourself to two main activities each day. For instance, I consider having a nap after having lunch with friends, which often works best for me. If walking long distances is difficult, consider using a wheelchair for outings. I initially resisted this idea, but it’s allowed me to participate without draining my energy. When I’m equipped with my wheelchair and portable oxygen concentrator, I feel better prepared.

PH demands constant adaptability. Some days may allow you to do more, while others urge complete rest — and that’s perfectly all right. Managing your energy is not about laziness or missing out; it’s about prioritizing your health and maximizing your enjoyment of life.

Note: Pulmonary Hypertension 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 Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.