Seven Life Hacks for Living with Pulmonary Hypertension
Living with pulmonary hypertension can require some adjustments in your routines. Once I was diagnosed, it became clear that my daily routine would have to be adjusted. Suddenly little things I never thought twice about became a challenge, and even an obstacle sometimes.
But there are shortcuts, or life hacks, that I have added to my routine to make life a little easier, and to save more of my energy. Here are a few:
Hack 1. Bird Baths
Am I the only one who finds showers really exhausting? Sometimes a full shower isn’t necessary. Instead of having a full shower I will have what I refer to as a “bird bath,” where I quick hop in the shower with a shower cap on, or fill the tub with a bit of water to freshen up. If you find your hair gets greasy in-between showers, a dry shampoo might be a good investment. You may want to purchase an organic dry shampoo that is free of talc, or a waterless foam shampoo to use just at the roots. I have bangs, which is the only thing that looks a little questionable on second-day hair. Bangs absorb natural oils from your forehead and moisturizer, so they can look a little piecey or curly on day two. No problem! I quick-wet my bangs and blow dry as usual, but leave the rest of my hair the way it is. A beach spray helps reactivate my curls and I go in with a wand to fix any misbehaving pieces. (Sleeping in a “pineapple” also helps preserve your curls if you have curly hair.)
Hack 2. Save your Steps
Do you live in a home with lots of stairs? Do you try to avoid them at all costs? I do, and sometimes it can be challenging to go upstairs just to brush my teeth, or grab a sweater or lipstick, before going out. To avoid having to go up the stairs for a single item, I try to bring down with me what items I may need during the day. It also is a good idea to invest in some items that you can keep on the main floor to avoid that extra trip upstairs, such as a spare mouthwash.
Hack 3. Prep your Meals
When you are not feeling well, chopping vegetables and cooking probably is one of the last things you want to do. If you are able, set aside sometime on a a day when you feel well enough to plan your meals. Use ingredients that can work in several other meals and save them for leftovers, or freeze them for another day. There are restaurants near me that make low-sodium, fresh vegetarian. My lovely parents go out and get some of their delicious specials for me to freeze and eat whenever needed. It is a better option than typical “frozen dinners,” or canned foods that are packed full of sodium and preservatives.
Hack 4. Make your World Accessible
Unfortunately, the world isn’t fully accessible to everyone’s special needs. I’ve gone to many places, from a tea shop to a concert venue, that simply aren’t designed with accessibility needs in mind. Sometimes accommodations can be made; sometimes they cannot. If you are unsure if a place will be accessible, call ahead, let them know your needs, and see if they are able to work with you to create a solution. Don’t be afraid to make changes around your living space to make your direct world more accessible, as well. When I was first diagnosed I had a stool in the shower to help make it a little easier. I also changed my wall shower head to a hose shower head, which made it easier to rinse my hair.
Hack 5. Ask for Help
Don’t be afraid to ask for help from your support system. There may be some tasks that are challenging for you, but they could do almost effortlessly. Chances the people in your support system won’t mind helping you. I still live at home, and vacuuming is a chore that is no longer an option for me. However, I am able house a Swifter on the hard floors in the house. I also empty the top rack of the dishwasher. I leave the bottom rack for my parents because they are able to bend easier than me. It is a small task, and when we divide by ability it makes the job easier for everyone.
I’ve also interviewed a woman named Elsa for my blog. Elsa has lived with PH for several decades and has a difficult time cleaning the house and running her own businesses as a hairdresser. Her solution? She hired a maid. I know that hiring a maid may not be financially feasible for everyone, but if it is an option for you, it could be a great way to save your energy for other activities.
Hack 6. Plan Ahead
You may not always be able to plan your day, but planning ahead can help make for smoother sailing. If I know I am going out, I will have a smaller workout and save my steps for whatever activity I will be doing later. Planning ahead also helps me know how to get ready for the day, and what to pack with me, from medications to an extra sweater, or snacks that fit my diet because I know they aren’t available everywhere.
Hack 7. Self-care
Self-care is a necessary step to help you recharge physically and emotionally. Do whatever you need to take care of yourself. For a lot of people the idea of self-care may seem indulgent, but that simply isn’t the case. If you have a difficult time practicing self-care, there is a technique where you imagine yourself as a young child (visualize how you were around 5 years old.) How would you take care of yourself? Some people are more inclined to practice self-care if they can view themselves as a child. Self-care can range from taking naps when you need one, staying inside your house and wearing sweatpants on extra tough days, or treating yourself to a cup of your favorite tea while watching an episode of Veronica Mars and treating yourself to a piece of dark chocolate.
What life hacks would you add to this list?
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Comments
Amy Cunningham
This article doesn't sound like it's written by someone who has PH. Half of these "hacks" don't help with the REAL changes your life goes through after diagnosis, the hopelessness, the pain your family goes through. I have never heard of someone "living for decades" with PH. Patients live longer now with the new break through medications but these meds were just recently released within the last decade. Before that PH patients rarely survived past 5 years. The articles I've read in the last couple weeks makes it sound like this website isn't run by PH patients anymore. What gives?
Serena Lawrence
Hi Amy,
I write for the Life with PH column. I wrote this article, and I do have PH. I have had pulmonary hypertension for 3 years. Many of the hacks I shared are to help with the physical aspect of living with PH. I understand that everyone's ability past diagnosis vary, but I tried my best to share what has been helpful to me in hopes of it being insightful for someone else.
Unfortunately, PH is a very difficult diagnosis to live with for both the patient and their loved ones. I understand what you mean when you talk about the hopelessness and despair that can accompany diagnosis.
While survival rates, current and past, are not enough, there are long-term survivors of PH. Although it doesn't happen enough, as a patient, I remain hopeful that we will see PH patients live longer and healthier lives.
Anton
Hi Amy
Serena and Anita are absolutely right in pointing out that PH survival times are variable. American Heart Association literature states that "PAH is a lifelong illness ..." My PAH was first identified more than five decades ago, when I was too young to appreciate that
I was being "written off" by some, and this diagnosis has been reconfirmed by different methods repeatedly since then. One close relative lived with diagnosed PAH until he was almost 70. Others with the same cardiac condition were almost certainly
misdiagnosed, with such things as "exertional" and later "unrelieved" asthma, and also died in their late sixties. Admittedly there were those with the identical congenital heart complaint who, for different reasons, were not that fortunate in terms of lifespan.
I Vasquez
Amy,you are absolutely wrong. Maybe you should do some research and talk to some people who have PH. Those statistics that said people don't live for decades have changed! I lived with it for 33 years up until I had my heart and double lung transplant. Also, PH affects everyone differently so one may only survive for a couple years after diagnosis, others like me live for decades.
Anita (UK)
Hi
It depends what type of PH you have. I have an underlying heart condition that has led to OH. I started PH treatment 10 years ago but had symptoms prior to that which were worsening.
Everyone is different and I have always had to carefully plan what I will do each day to make the most of my limited energy. I still am able to work but struggle in winter for energy to do anything other than work.
I thought the article was helpful to know we aren't alone, and made me stop and think particularly about being kind to yourself. No it doesn't touch on the emotional struggle and bigger challenges - but as we all cope differently and have different experiences that really would be a challenge! Only recently found this site and really value hearing how others with this rare condition cope. Thank you for linking us up.
Serena Lawrence
I am glad to hear that you were able to find some of the article helpful. Thanks for sharing, Anita.
Erica A Hutchison
This is a wonderful article, Serena! Thank you for sharing. :)
Some of us need to remember that PH effects no two people in exactly the same way. For example, my lung pressures are extremely high. By all means, I should be entirely bed bound by the numbers, however, with the help of my current oral treatments and supplemental oxygen, I have quite a bit of energy, and am on the go much more than I should be. There are people with much lower numbers that can't get out of bed at all, let alone shower. We are all different, even though we have the same disease. How strange the human body is.
I am newly diagnosed, even though I've been suffering the last five years. These hacks are pretty great, especially bird baths!
I, like most people, couldn't afford to say the word, "maid" lol, however, quite a few insurances will cover nurses and medmaids to help with cooking and cleaning, as well as errands! I highly suggest this!
Thank's for continuing to share, Serena. You are greatly appreciated!
Serena Lawrence
You are totally right, pulmonary hypertension affects everyone so differently! I think it is important as PH patients to remember that we are all unique. We all respond differently to medications and the disease itself. I am glad to hear that you are able to keep your energy levels up!
I am glad you were able to find some of the hacks helpful. At first I was hesitant to the bird bath, but I've had so many other ladies and hair dressers tell me that they wash their hair only a few times a week. In short, bird baths help preserve your hair's natural oil and colour of you get it coloured :)
That is a good point about insurance allowing help with home duties.
Mary Rogers
how do you know if your ins. will cover help with this dieseae thanks, mary rogers PAH patient.
Joyce
I would also add that I keep a bag filled with things, such as scarves, hats, mittens, gloves and warmers already packed to take with me if I go out. Since I have Raynaud's and Systemic Sclerosis (which is what caused my PH), I found it easier to have it ready if I need to go out than to add in the task of gathering what would be necessary to take with me. If it is summer, I keep a bag packed with things I would need then, that way, it's all ready for me.
Tim Bossie
Excellent tip! Thank you for sharing that with everyone. :)
Mary beth
I use each and every one of these already. It's the only way I can make it through each day. Sometimes cleaning or going upstairs is like climbing a mountain. I have a teen daughter who still does not understand there are things I just can't do. She is 16 and I was diagnosed when she was 4. I do have to have help at times when I am with someone else. It's not easy.
Tim Bossie
Sometimes what seems to be the most "ordinary" or "regular" parts of someone else's day is almost impossible. We are glad you can get some help from time to time... and use some of these tips to get you through the day. Hopefully your daughter will better understand in a few years... 16 is quite a tough age. I have one that age too.
Kathy harket
These articles help me understand what my partner is going through. Also gives me ideas of how to help him more. Thank you
Kathy
Tim Bossie
You're welcome. We hope that you both will be able to help one another through this time.
Mary Jo Duffy
Serena thank you for the positive tips. I was recently diagnosed " officially" but have been symptomatic for years. The word decades gives me great hope and that is what I need most. This is a scary disease, but if we help one another get through it, life is much more enjoyable!
Cheri Grisham
Hello,
I like others here have been newly diagnosed but symptomatic for a few years. When diagnosed I wasn't sure they had it right. I wasn't on oxygen I could still walk somewhat. And shoot, I am still working at least ten hour days.
But when the elevator went out at the office and I had to use the stairs, I saw where I would plan my trips up and down those stinking stairs.
But with even that I looked at these other poor folks that had PH and the big differences there were and didn't want to except that I had a terminal illness.
Then I felt guilty for bringing it up.
But after my last Dr Visit, I have it, it's real and I'm learning it does effect people differently!! This article has been informative as to what's ahead...and in what I'm already facing. I'm not lazy, I'm sick. I have good days and bad days. But I'm never alone, because no matter if anyone else understands, my God is with me and he knows my sufferings as he too has suffered. And he walks through this valley with me!
Tim Bossie
Hi Cheri. You're right, you're not alone. Not only do you have God with you, but you have an entire family here (and on our FB page if you choose to follow there) that is here for you. I'm glad that you found some answers in this article and hope that you continue to stay strong.
Patricia Bronk
Great article!!! It is okay to ask for help!!! Some families do not want to be that source of help (I learned the hard way). So spread out your support system. Have certain people do certain things. Do NOT beat yourself up because you are limited in some activities!
Thank you
Jan
I have recently been diagnosed with PH. One of the hardest things for me is because you look normal and don't see physical issues people wonder how you could be so sick and not look that sick until they hear you gasping for air or only walking short distances and be out of breath. My husband often forgets I am suffering with side effects of this disease but all of a suden it hits him when he's talking with me and I fall asleep in the middle of a sentence. Thanks for the article and the posts they are helpful.
CRAIG
I'm still able to do a lot of basic chores with no problem at all. Stuff like mowing the lawn, anything with exert in my strength I have to slow it down. I can't run at all, yet can still walk at a slow pace. I've quit smoking, now just have to make a few adjustments. I'm going in for more tests next week so will have better insight.
Akhila nath mishra
My wife has past histories of short breath when walking in upward slope and particularly stairs. Few days back coldness and coughing noticed with her.All of sudden one night she experienced continue coughing in night and around dawn fresh blood repeatedly seen with coughing.We consulted doctors at Medical college with a ? of Pulmonary Artery Hypertension due to very high pressure build in Lungs. Then we admitted her at Apollo Hospital at Bangalore for a week under team of critical care unit with cardiac specialist and Pulmonology Doctors . Now she is out of Danger and bit comfortable without outside oxygen support.At present prescribed medicines and other advices are following to make her little happy.She is quite depressed initially as unable to take care of 1 year old baby girl. I have good support of family members and other financial issues. Just hoping to see her more happier with good health as before.
Thanks for building our hopes through beautiful sharing experiences shared to us.
Thanking for sharing about PAH.
With Regards
Akhila nath mishra
Swetha kadambi
Akhila Nath i am from Bangalore too and have been diagnosed with PAH. I am on medication for the past 8 years.i have good days and bad and sometime they are worse. But my husband and my inlaws are my rock.Do not worry there are lot of drugs which can help your wife with her problem. The only thing she needs from you is your support during her bad phases.
Take care.