Pulmonary hypertension (PH) can significantly affect your quality of life, mental health, and overall sense of well-being. This is especially true if you feel like it’s limiting your participation in activities you enjoy or preventing you from spending time with loved ones.
However, you can take care of yourself even if you are living with PH. Here’s what you need to know to take the best care of yourself.
Self-care means doing the things that make you feel your very best. This can involve any type of activity, incuding:
Self-care can be even more important for people living with PH than it is for the rest of the population because PH can affect nearly every aspect of your life. Researchers are finding that people with PH who are involved in their own care and who take control of their self-care may see more improvement, in both the condition and how they feel about the condition, than those who do not. Thus, you are one of the keys to your well-being.
While self-care and self-management of your condition may not make your PH go away or give you perfect acceptance of your situation, it can help with several areas. For instance, you may be able to address fatigue and experience fewer, shorter episodes where you feel like you can’t breathe. Just because self-care doesn’t cure you doesn’t mean it’s not helping.
If you’re not sure where to start, consider the following ideas. These strategies have worked for others with PH and might work for you, too. You can also talk to your cardiologist, pulmonologist, or other health care provider to get ideas that might help.
Although being diagnosed with PH may seem like a reason to avoid exercise, you may feel better if you exercise with some precautions in place. Exercising can enhance lung function, strengthen heart muscle, and boost mental health. Talk to your cardiology team or other health care professionals for some ideas about how to make these lifestyle changes safely.
You can start by exercising or increasing your physical activity for just a few minutes a day. Walking is great because you can build up strength and can take oxygen with you if you need it. There are also online options designed for people with PH. One myPHteam member found these useful. They said, “There are specific exercises for people with PH on YouTube, safer than climbing stairs, and you can use your oxygen while you exercise.”
You can also participate in a pulmonary rehabilitation program, where you are given exercises and monitored while doing them. Some myPHteam members have had good experiences with this kind of exercise. One said, “This week, I started at my local hospital for pulmonary exercise. After each of the four exercises, they take my blood pressure and check my oxygen level. All looked good, and I even slept well that night.”
Another explained, “My pulmonologist recommended it. You walk and do cardio exercises. You have a monitor on while you are there, check your blood pressure, and you work at your own pace.”
If the thought of physical activity worries you or if you feel short of breath or have chest pains while exercising, talk to a health care provider.
Members of myPHteam also recommend meditation to help with relaxing and staying positive — both on good PH days and bad. One member said, “I meditate and pray every morning.”
Another added, “I do breathing exercises like pursed lip breathing, read the Bible, pray and meditate. It helps me relax.”
Yet another explained, “I do transcendental meditation for stress.”
There are many forms of meditation out there. You can find one that will fit any religious affiliations you do have, or you can find some that are not related to religion at all. YouTube offers some great video options to get you started. There are also smartphone apps that can lead you through guided meditations. You can meditate for as long or as short as you’d like.
Members of myPHteam emphasize the importance of getting enough rest. You may not be able to continue going at the same pace as you did before being diagnosed with PH. This can be a transition, but embracing it can improve your quality of life. One myPHteam member put it this way: “I’m just enjoying some rest and TV now. It is OK to get away and enjoy things, just remember to rest and take care of yourself.”
You don’t have to give up everything you love after a PH diagnosis. Instead, you can alternate doing things and resting. As one member explained, “I have to rest when I’ve pushed myself. I work in my garden every day and can generally do one hour before getting real short of breath and needing to rest.”
If adding rest to your schedule doesn’t work for you, either because of the demands on your life or because of your personality, consider pacing yourself. Moving slower throughout your day can preserve your energy so you can get things done.
Members of myPHteam say that this suggestion has worked for them. One explained, “I have found moving slowly and pacing yourself is something that I have become accustomed to with PH. It keeps me from getting excited because then my pulse goes up and sometimes, it’s hard to breathe … so, pace yourself. It truly helps.”
Again, this can be a hard transition when you are not used to having to slow down. One member experienced this, saying, “I know I have to pace myself on everything. Sometimes, it is such a pain, but I have to remind myself of it.”
Save energy for the things you want to focus on by making it easier for you to live in and move about your home. Sit down when you can, especially when you’re working on a task. Keep the things you might need, like a phone, a book, and a beverage, close by, so you don’t have to keep getting up to get them. Buy electric appliances and tools when you can so you aren’t wasting your body’s energy doing things that technology can do for you.
Self-care is an essential part of managing PH. By working closely with health care professionals, following recommended treatments, and maintaining a balanced lifestyle, you can improve your quality of life and overall well-being. Remember, you are not alone in this journey, and with a proactive approach to self-care, you can better manage living with PH.
On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 51,000 members come together to ask questions, give advice, and share their stories with others who understand life with pulmonary hypertension.
Are you wondering how to care for yourself while living with PH? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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Plenty of rest? That would mean, that I wouldn´t leave the bed. At all. Exercise? Impossible. Pace yourself? That would mean, that I would fall asleep. Anywhere.
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