Day to Day Living with PH

Day to Day Living with PH

Life 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."

"LIVING WITH PH"

She asked, ‘You women go through all of this every day?’ and we said, ‘Yes, we do. We do and we have no choice because we want to live.’” PH patient Diane Ramirez, on former U.S. Senator Elizabeth Dole’s reaction to medicating for PH

While it can be difficult to imagine in the days and months following diagnosis, many patients develop strategies to cope with the physical and emotional aspects of living with PH and lead happy, fulfilling lives. With a bit of patience, planning, and flexibility, many people affected by PH find ways to work, travel, exercise, and do the things they loved before they were diagnosed.

Today, people diagnosed with PH can benefit from the experience of thousands of other patients who have learned to effectively manage this illness. Explore this section to find tips, tools and resources to help you adapt to life with PH.

Empowered Patient Online Toolkit Download PH-specific templates and checklists to create your own personalized medical binder.
Day-to-Day Living Simplify your daily routine with these tips from long term survivors.
Coping with PH Identify strategies for coping with the emotional and social aspects of PH.
Health and Medication Management Manage your medications and coordinate your healthcare.
Emergency Situations Take the time to prepare for emergencies before they happen.
Give your Caregiver a Shout-out
The "Caregiver Shout-Out" honors family members and friends in the PH community who provide patients with daily encouragement and support.
Working with PHMake and keep a place for yourself in the workforce by listening to your body and knowing your rights.
Diet and NutritionKeep your diet on track with advice from PH experts.
Exercise and PHGet active without overexerting your body.
Traveling with PHPlan ahead for safe and comfortable travel with PH by car, plane or train.
Climate and PHPrepare for changes in weather and altitude.

The PHight or Flight Project
(click to go to blog)

6 Tips for Facing Retirement as a Young Adult

  In December of 2013 I was diagnosed with Idiopathic Pulmonary Hypertension. Although my symptoms came on quite quickly, I was only diagnosed once I was in severe right-sided heart failure and required supplementary oxygen 24/7 a day. Months prior to my diagnosis I had finally started my first adult job after years of pushing tea and cupcakes. This was not as fun as it sounds, and finding a job with a Fine Arts degree in a tech city is no easy feat.   

I went back to work about 6 months after my diagnosis, which in hindsight, was way too soon to return to work. I was eager to return back to the job I loved, interact with people, and feeling like I was contributing to society again. More than that, I wanted a distraction from what was going on in my life. I managed to work part-time a few months short of a year, but realized I was in no condition to work. Unfortunately, it became clear that the stress and physical demands of working was too much for me and I had to give up my newly found career.

As such, at the age of 27 I had to retire, and I have been retired now for nearly a year.   I wanted to share what I have learned in the past year about being retired in my 20’s. Retiring as an early adult is uncommon. Therefore, very little support and information is available for this kind of transition.

So aloha- welcome to the island. Grab your beverage of choice and your favourite Hawaiian print shirt. (If you don't have one yet, now is the time to invest in one!).

1) Netflix and Nap  

Chances are if you have a chronic illness or a condition that is preventing you from working, you will need some down days. Don’t feel guilty for needing some time to take it easy on your body; this is part of the reason why you are no longer working. If your body is telling you that you need a down day, reach out and take it. Take naps as needed. I know my body needs extra TLC compared to most people my age because it works so much harder just to do simple tasks (like breathe.)   It is okay to find a good show on Netflix and slowly marathon your way through. Just be sure that watching iZOMBiE isn’t the only thing you do for a month straight. Although majority of your family and friends will be at work or at school during the day, it is still important to use and limit your TV time wisely.

I really do have a bunch of 'island time' themed outfits.

2) Stay Sharp  

According to a study found here 42% of college graduates never read another book after university. After I stopped working for a bit I noticed that I no longer felt as mentally 'sharp.' In order to try and maintain my brain I read several books a month and write.

 Books have been a great source of entertainment for me. Fictional books can allow you escape reality (if only for a moment.) Inspiring and self-help books can help you cope, and find hope. Trashy memoirs are usually an easy read and thoroughly enjoyable.

  If you want to continue to learn on an educational level, you can always find books in your area of interest. iTunes also offers “The Open University” which has free lectures and content on various subjects. If you are really ambitious in continuing learning, you can try and create your own lesson plans which is a great way to still set goals and deadlines for yourself. (Some of us A type personalities really miss having that kind of structure.)

Books and lectures aren't the only way to stay sharp. You always find activities that incorporate working out that brain muscle in a way that feels more like play. Puzzles, word searches and logical/spacial thinking work books are all a great way to keep that hamster in your brain on the wheel.

Documentaries also available on Netflix and YouTube for those days where you want to learn from the comfort of your couch and sweat pants.

 3) Creative Outlet

Creative outlets are important to both develop and hold onto during your transition to retirement. Hobbies and interests are often things that we naturally enjoy doing. Sometimes our illnesses might take away our ability to do certain activities that you previously enjoyed doing. As such, you may find yourself on the hunt for new interests and hobbies.

It is really important to maintain a creative outlet. Being creative and having hobbies will still provide you with a sense of being able to accomplish a goal. I know that when I stopped working I felt a sense of loss. How could I accomplish anything if I didn't have deadlines and the demands of an office to meet? I learned to set my own goals, and to create my own accomplishments. Sometimes my goal might be to do one small drawing in a day, or to work on writing an article.

Having a creative outlet can also have many beneficial side effects. It may help reduce stress and anxiety.

Drawing and writing aren't the only ways to have a creative outlet or hobby. Hobbies can range from crafts, scrap booking, sewing and playing music to volunteering, playing cards and cooking!

 4) Keep Moving

It is very important to keep as active as possible. Unfortunately, some chronic illnesses can make it difficult to stay active. Pulmonary Hypertension, for example can cause disability as it leaves people breathless. It also has the potential to cause dangerously low oxygen saturations. As such, it is recommended that you speak to your doctor to discuss the best way for you to stay active.

I am disabled due to having Pulmonary Hypertension, but try to stay as active as possible. I will try to walk at least a mile each day. Walking on flat land is easier for me, so if the weather sucks or I am having a bad symptom day, I will walk around the house until I reach the mile mark. I also try to get up to walk for 5 or 10 minutes if I have been sitting for an hour.

If walking without a destination sounds boring to you, you can always go to the mall or to a museum. Both provide climate controlled environments with flat land (and elevators if you are unable to do stairs.)

In addition to walking, I try to stay active by doing a 20 minute session of yoga or Pilates from the comfort of my own home. There are great and affordable apps for yoga and Pilates, and there are also free videos on YouTube as well. Depending on your abilities, you may be able to adapt these works out by doing chair yoga.

 5) Treat Yo Self

Ah, the catch phrase that might ruin this generation (and my bank account.) It is very important to take care of yourself. Try to get enough sleep. Eat as healthy as possible, but also know when it is okay to cheat. Bottom line, you should be able to feel like you can enjoy your retirement. We shouldn't be punished for not being physically capable of working.

Make plans for whatever adventures you are able to do. This can range from trying a new cafe, going to a new museum or trying a weekend get away. Find ways to make yourself smile. It can be as simple as putting a bird feeder outside of a window.

6) Find Yourself

It can be very difficult to retire during what should be the prime of someone’s life. Even older people have a difficult time adapting to the transition of retirement because of how heavily careers and professions are weighed in with our perception of ourselves. In order to get to know someone, we often ask “what do you do?”

While many of us are or were very passionate about our careers, I have learned that jobs are usually on the more superficial layer in terms of defining someone. For example, if someone heard what my former title was, they might assume that I studied business. I never took a business course in my life. (It was all learned through pushing cupcakes, baby!) My real passion has always been being creative. I went to university for fine art (drawing, painting and sculpture) but now I use freelance writing as a form of being creative. So my former career did not really define me, and my current retired status doesn’t really define me either. I have always been a very hard worker, and very career driven (hence why I started a blog a few months after facing a heavy diagnosis.)

Facing retirement so young can certainly be challenging. I still have my days where I question my self worth because I can no longer contribute in the ways I used to, or desire. However, I am proud of myself for having such a big obstacle and still accomplishing everything that I have through freelance writing. My diagnosis, as cheesy as it sounds, has taught me a lot about myself, and even other people in my life. It has also pushed me to continue to try and find myself and be the person I want to be despite everything.