The New Year is often a time for making resolutions that lead to a better quality of life. With that idea in mind, we asked our Pulmonary Hypertension Association (PHA) support group leaders to share some of their best tips for living well with pulmonary hypertension (PH). We hope that each one of you will find one or two tips that help you in your own life’s joys and challenges. Happy New Year from all of us at PHA!
- Plan to have fun while you feel good. Also plan to recover. Find times when you can rest and take naps if you have to.
- Live every day to the fullest…tomorrow is not promised…
- Learn how to say “no.”
- I can probably give a lot of clichés, but I won’t because everyone is different. Find a passion and volunteer in it, whether it be animals, politics or in a hospital one day a week. Everyone needs purpose, but most of all be brave.
- Make up your mind that you will be all right.
- Find a group of people who will support that narrative. PH support groups are a good place to start. Visit PHAssociation.org and find events that are taking place in your area. If you put yourself out there, you will find the PH community.
- I don’t identify myself as disabled, I’m just less-abled. At this point, I can do all the things I could do before, but I can just do a bit less — hence less-abled. It’s this kind of mentality that keeps me pushing myself to accomplish more. Your “new normal” doesn’t have to be much different from your “old normal” if you give yourself and your body the patience required to get there.
- Follow a low-fat, low-sodium diet, which means looking at labels more closely and seeing the dietician again.
- Continue with a support group and private therapist for help when depressed.
- Rest when needed; those who understand will wait!
- Stay on top of weighing every day, checking for fluid retention and always being honest with your doctor.
- Do something for yourself every day, no matter how insignificant you think it might be.
- Find something you enjoy and stay as active doing it as you can. Listen to your doctor and your body.
- Get out. Go places. Engage in the world around you as much as possible.
- Okay, some days are way more energy than others, but do not wait till you can’t do it! Just make sure you are fully prepared for all the events!
- Get out and do what you can while you can. Isolating and staying home/inactive will only make things worse.
- Talk with your doctor about a good balance of still being active/having fun while not overdoing things for your body.
- Don’t be afraid to ask for help. It’s not a sign of weakness, it’s a sign of strength.
- Be involved in your care – be a partner with your medical team.
- It’s ok to prioritize rest and self-care. In fact, it’s absolutely necessary. It’s ok if the dishes/laundry/etc., wait so you can nap, have fun or watch tv. Prioritize yourself.