Welcome to this PEP Talk from the Alliance for Pulmonary Hypertension about managing your energy. My name is Louise Bauman, and 18 years ago I was diagnosed with severe pulmonary arterial hypertension, or PAH. I was in functional class IV and immediately had to start intravenous epoprostenol. At that time, I had a newborn and a toddler who was almost two years old. My days were constantly busy with my children. They were always setting the pace. Luckily, my mother and my husband helped a lot, especially in the period just after my diagnosis. Sleep came only when the children slept.
Managing my own energy has been a long and challenging learning process. Today, I want to share what I have learned: the long learning curve, the mistakes, and how I created space for myself, my dreams and my spirit. At first, I pushed myself constantly. I made mistakes because I overestimated my energy, and often I only felt the consequences the day after I had done too much.
Learning to live with PAH and an IV pump already took a great deal of my energy. On top of that, I also had to take care of my children. I felt like life was running ahead of me and I was just trying to keep up. I was in survival mode. I had to learn that PAH does not pause for life’s demands, but I could learn to work with it.
Learning to manage energy with PAH is a long journey. You will stumble, you will fall, but you will also stand up again. I learned the hard way, after having many bad days because I had crossed my boundaries. Learning what your boundaries are and accepting them is not giving up. It is survival, and it is freedom. It is not something you figure out in a short period of time. That is not realistic. Be patient with yourself and do not be too hard on yourself, because you are allowed to make mistakes and keep moving forward.
It may seem unexpected, but sitting all day can make fatigue worse. Even small movements, such as walking a few steps or stretching, can be very powerful. If you do not do anything, you can lose motivation, not only physically but also mentally. Find something you like doing, such as walking, yoga, chair yoga or dancing, and do it at your own pace. You do not have to make big movements. Just move. Your body and your mind respond when you move. Movement takes energy, but it can also give energy.
In those first years, I was constantly busy with my children. They set the pace: feeding, changing, soothing, playing and cleaning. Two little boys were always moving, always discovering the world, and I followed in the best way I could. But here is something important: it was a very conscious choice. When I was diagnosed, I did not know what my future would look like. I was told that if the medication did not work, I might only have three to five years.
I did not know whether I would see my children grow up, so I made a really important decision for myself. I would focus fully on them. I wanted to enjoy every single moment with them. I knew that would cost a lot of energy, but I was willing to give it 100%. Sleep came when they slept. My energy felt like a currency I was constantly spending, but I was choosing where to invest it.
In that period, I also learned something difficult. Not all friends turned out to be real friends. I had to say goodbye to some relationships. I realised I could not afford to spend energy on people who drained it. That was one of the hardest but most important lessons I learned about spending energy. I became very intentional about who I allowed into my life: less contact with energy drainers and more space for what truly mattered.
At the same time, I learned practical strategies: ordering groceries online instead of going to the store, hiring someone to help with household chores, letting my husband take care of the evening bathing routine so I could recharge, cooking healthy meals for two days instead of one, and eating half while freezing the other portion for a bad day.
These strategies did not make life perfect, not at all, but they really saved energy. They created small pockets of breathing space, and that was crucial, not just for surviving, but also for learning how to thrive. After a couple of years, I reached a turning point. I had accepted that my life would never become exactly what it had been before. When my children started school, I began to create space in my day just to think, to breathe and to dream.
That shift allowed me to start envisioning a future beyond the illness. Setting new goals, even small ones, kept my spirit alive. At some point, something bigger started to grow. I have a background in healthcare and marketing, and as I moved further into acceptance, I began to think: what can I do with this knowledge now? I realised that I did not just want to live with PAH. I wanted to give something back to the PH community, because I felt very lucky that the medication had worked for me.
My healthcare background helped me understand the disease. My marketing background helped me understand communication. My lived experience gave it meaning. That is how my new dream was born. I decided to step into the role of patient advocate and to use my voice, my knowledge and my experience to support other people living with PH.
Energy management is not just about surviving. It is about creating space so your spirit can burn again. We have physical energy and mental energy. At least, that is what I call it. Maybe it is energy in your soul. When one runs low, you can sometimes lean on the other. At least that is how it works for me. For example, last year I went to a festival and danced and stood on my feet all afternoon. The wonderful atmosphere and music gave me so much mental energy that it carried my body through the day, and I was not even that tired the next day. When you find a purpose that aligns with who you are, your energy suddenly has direction.
Some practical strategies that help me are to prioritise, pace and plan. Know what truly needs your energy and where, or with whom, you want to spend it. Time your important tasks for the moments when your energy is highest. For me, mornings are best. That is when I have the most energy, so that is when I do the most important things.
Move, and try to improve gradually. I started, I think, with about 20 metres of walking. Now, after 18 years, I am able to walk three kilometres with my dog without even being out of breath afterwards. That is not something that happens in a week. It takes years of practice. But if you keep trying to improve yourself, your body can improve too. Small steps will get you ahead.
Rest intentionally. Take naps, meditate, breathe, read, watch a series or do whatever helps you rest. Take time to let your body recover. The most important strategy, and probably the most difficult one, is accepting help. It is not weakness. It is a strategy. I know it can be very difficult to accept, but you may need to do it for yourself.
It is not magic. It is awareness and planning. I made many mistakes: pushing too hard and crossing boundaries. But every mistake taught me where my limits were. Boundaries became visible because of the mistakes, and that knowledge became power. That does not mean I never make mistakes anymore. It still happens. Sometimes it is unintentional, but sometimes I know in advance that I will cross my boundaries. Sometimes it is worth it, because it allows you to do meaningful or enjoyable things. It is also about accepting that you may have a bad day afterwards.
When you live with PAH, energy becomes your most valuable currency. You learn very quickly that it is not unlimited. You cannot waste it, and you cannot ignore it. But what I also learned is this: even if your energy is limited, your impact does not have to be.
I chose to invest my energy in my children. I chose to let go of people who drained it. I chose, at least sometimes, to ask for help. I chose to create space for new dreams, and eventually I chose to use my energy to advocate. Managing your energy is not about shrinking your life. It is about deciding what truly deserves it.
Yes, PAH forces you to move differently. Yes, you will make mistakes. Yes, you will cross boundaries. But keep moving, not running, just moving. Rest when you need it. Protect your energy. Create space for purpose. Because when your energy has direction, your spirit burns again, and that changes everything. Thank you, and I hope this helps you a little bit.