DAY-TO-DAY LIVING

Lindsay Morales and her son, Jacob, relax outdoors -- read their story in JourneysLife with pulmonary hypertension is an ongoing lesson in flexibility. You may need to let go of some of the daily details that seemed important before you were diagnosed to make room for some of your new responsibilities. Household tasks that exacerbate PH symptoms may require thoughtful work-arounds.

Read on for tips from other PH patients who want you to know that life goes on, even when you're low on energy. While PH can make it more challenging to do the things that need to get done, it is possible to implement lifestyle modifications to ease your daily routine.

Conserving Energy

Many people living with PH find that they can't keep up with the active lifestyle they were accustomed to before they became sick. In some cases, a task that once took an hour may take several days or more. This is a normal part of life with PH, and not a reason to feel guilty or ashamed. Pace yourself, and make a point of finding ways to feel good about what you can do.

  • Prioritize your activities. Make a list of what you want to do and rank the activities in the order of importance. Ask yourself if you really need to hold on to the items at the bottom of the list. Prioritizing allows you to hold on to the things that are most important to you and let go of the things that are less important.
  • Set realistic goals. Make a list of tasks and how long they actually take you to complete with PH. Once you have a realistic record of how much time you need to complete your chores and activities (not how long you think you should need), sit down and make a schedule. Break projects down into small tasks that you can do in one sitting. One PHer recommends setting just one main priority per day, and adjusting that list as necessary based on your energy level. Every day is different, so try to find a routine that's flexible to accommodate periods of high and low energy.
  • Make household improvements. Many patients find that bending over frequently exacerbates symptoms. Keep your go-to products in the kitchen, bathroom, bedroom and laundry at eye-level to avoid becoming breathless mid-task. Have a handy person use cinderblocks to raise your dryer four to six inches so you can avoid having to bend over to change loads. If you can, raise your commode or install a handicapped model in your bathroom. Some patients use self-installed seats that add about six inches to a regular commode.
  • Let your groceries and errands come to you. Order household products, groceries and gifts online or by phone when you can. You may also be able to find local dry cleaners, laundries, and pharmacies that pick-up and deliver.
  • Turn to friends and family for help. You can't do it alone, and you shouldn't have to. Talk to your family about pitching in around the house if they don't already. One patient says, “Even preschoolers can help. They can sort the wash, empty the dryer, and fold the clothes. They can carry the folded clothes to their rooms. Older children may be able to make dinner once a week. A basic weekly dinner menu can save a lot of effort and waste. For example, Sunday is pizza and salad; Monday is grilled chicken, rice, and carrots; etc. It makes it easier if everyone in the family learns to prepare a dinner or two.”
  • Take advantage of wheel chairs and handicapped parking. Avoid long walks when you can. Use wheel chairs or electric carts when they're available to you, or consider getting your own if you need it. Apply for a handicapped parking pass. One patient reminds, "We don’t get brownie points for suffering.”

Staying Active

As PH patient Melitta tells people who are newly diagnosed, "You have the disease...the disease doesn't have you!" It's important to pursue activities that are unrelated to your illness. Having things to plan for and look forward to makes life meaningful and fun. If you've put your hobbies aside to make room in your schedule for medical appointments or because you haven't had enough energy, find ways to slowly reintroduce them, or try less physically demanding alternatives in line with your interests.

  • Don't fall into the "all or nothing" trap. Just because you don't have the energy to keep up with your work, volunteer projects or hobbies the way you were doing them before you were diagnosed doesn't mean you should give them up entirely. If you like to garden but you can't tend to the large garden you're accustomed to, scale back. Plant a smaller garden, or install window boxes.
  • Start a project. If leaving the house for most of the day isn't realistic at the moment, think of ways you can pursue your interests from the comfort of home. Consider starting a blog about something you're passionate about, be it politics, photography or pop culture. One patient suggest a few more options: "Things that can be done at your own pace and own place include arts and crafts, organizing photo albums, doing genealogical research on your family, or just sorting through papers. Make a list of the books you’ve always meant to read, then actually read them.”
  • Get involved with your favorite charity. Many PHers find that helping others actually helps them feel better. One patient advises, "Many PH patients can do work that isn’t too strenuous, such as reading to children in day care, visiting the elderly in nursing homes, helping out at a local historical landmark or museum, or making phone calls for the local blood bank." Learn about  volunteer opportunities at PHA

Videos, Webinars and Tips  

Medical review by Traci Stewart, RN, MSN, CHFN, Cardiomyopathy Treatment Program, University of Iowa.

To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed: February 2012

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.