Planning Happy Moments Amid the PH Storms
Surviving day in and day out with a life-threatening illness like pulmonary hypertension (PH), well, simply sucks. My struggles with numerous symptoms and medication side effects weigh me down and rapidly deplete me.
Uptravi (selexipag) and Revatio (sildenafil) can cause horrific side effects, and these are my two primary PH therapies, along with a bucket full of others. When my body aches and the room spins from lightheadedness, I struggle to stay positive. PH life is not what I would’ve planned for myself, but it’s my life, so I must make the best of it.
Naturally, I crave peace and happiness when in the storms. Certainly, there are days when it’s challenging to find the “happy things” to focus on. Those with PH still have a life and we must remember to continue living despite illnesses.
As mentioned in my first column, “I Am Worth the PHight,” I deserve to have fun and enjoy life, to embrace my best life possible. You deserve the same!
Join our PH forums: an online community especially for patients with Pulmonary Hypertension.
An article about the psychology of happiness mentions that “happiness is a subjective experience.” I’m usually that happy-go-lucky kinda girl who wonders why everyone can’t just be happy. However, I must remember that happiness looks different for each of us, and that’s OK. As the saying goes, “Different strokes for different folks.” We are each rare in our own way; that is what makes us interesting.
I find it crucial that I create and plan things I look forward to. The resulting “happy moments” boost me physically, plus help preserve some of my sanity. I try to plan things that support that philosophy, such as an event, project, or short vacation. I have a trip on my calendar for next month. I am so pumped to have three days away with my awesome husband.
Things that I look forward to can vary from the simplest of activities, such as a Netflix binge, to more adventurous things like an overnight trip.
A few happy activities
- Family dinners: Anyone who knows me well understands just how important family dinners are to me. I enjoy cooking, eating (of course), and catching up on what’s new since the previous family dinner.
- Lunch, coffee, and tea dates: I am a foodie, so I am delighted when visiting unusual coffee and tea shops. I adore hanging out with my daughter, hubby, and friends. Lunch dates are fun, too, because it’s still early enough in the day that I am not totally exhausted.
- Mani and pedi: I take pleasure in visits to the nail salon every few months. This is a treat that makes me feel like a pampered queen. My hands and feet certainly look and feel loads better afterward.
- Drives: I have always been fond of going on random drives. Most often, you’ll find me by the lake or the beach. But other days, it’s a backroad country drive type of day. Some days, weather permitting, you’ll find my sunroof open as I soak up the vitamin D. I crave the beams of sunshine as my skin basks in the sunlight. Sunshine makes me happy and can be beneficial to health. Of course, I use sunscreen.
- Overnight trips: For the past few years, I was medically unable to fly. Thankfully, that has improved. My family and I have enjoyed overnight excursions throughout the year. As mentioned above, my husband and I are flying away for three days next month. I’m stoked!
- Netflix binges on my couch: PJs, comfy blankets, yummy snacks, and my Boo … Ahh, these are perfect days even when I am not feeling my best. I have enjoyed binging with family and friends as well. Some days lead into nights as we binge on shows. Where PJs are welcomed, my happy place is found.
PH life is unpredictable, but planning things to look forward to can improve my attitude. I crave this positivity and optimism in my crazy PH life. I realize there are risks when planning, but I choose to take those risks in an attempt to maintain some “normalcy” and happiness in my life.
What about you? What happy moments do you look forward to?
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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
Tebaldi
Can you tell me what kind of side effects you have? I have diastolic dysfunction with PH. I’m also diabetic with bipolar disorder, kidney disease and periformis syndrome. I can’t take anything for PH but revatio because of the heart disorder.
As I read your article I was thinking why I am not struggling much. I’m sincerely uptight about writing this because I don’t want to sound like I’m saying, “Nothing bothers me!”
Could it be that I’ve reached a phase where I’ve accepted what ails me??? I do remember for the first 6 years after diagnosis I was depressed. Most days crying and many many times walking the rooms of my home feeling useless. I had no career left, ( oh how I loved my collections officer job which I had only had the privilege to being in for 2.5 years...after 10 years of being in a mundane job waiting for the opportunity for more). I didn’t know what to do with myself. I felt so utterly useless, like I didn’t even have a purpose! My life was doctors, meds, and lots of sleeping! I had nothing to talk about with my husband each night cuz nothing was going on inside of me. God those were such hard years!! Pain medications were messing with my moods more than I realized also.
Well ten years now have gone by. I believe it took around six years for me to come up where I can breath again.
I got off pain meds, suboxone will be for the rest of my life because of Post Addiction Withdrawal Syndrome.
I became more healthy by losing about 100 lbs
I started enjoying cooking again but I stopped feeling guilty because there are a few days a week I just can’t get the energy up to cook dinner.
So. What! My husband always says.
I tried desperately to find fun stuff but I couldn’t find it.
But when I stopped looking I realized I wanted to be a "plant lady” with loads of plants in my home. So I’ve started buying plants and playing in the dirt. Taking care of my plants keeps my mind off of myself.
I also took up listening to audible books. THIS has been a life saver. Listening to books during the day keeps my mind occupied and I don’t get lonely!
I have many friends online from my working years; but I’m a loner, I love being alone, I love my "me time”. I protect my me time jealously! LOL
I picked up learning how to clean using natural products recently and it’s an adventure for me!
I can’t do many things I used to do easily like scrubbing floors, carrying groceries, hanging my own curtain rods, vaccuming, but my husband and I worked out a team plan so neither of us feels over burdened. He is the ultimate understanding and selfless person I love!
I stopped trying for perfection in the ways of a homemaker. I’m a true homemaker and have always loved it, so now that I’m on disability I’ve been given the opportunity to stay at home and do what I love.
I’m rambling I guess.
I see there were areas I felt like I had to stop doing because I just wasn’t physically able but without knowing it, I adapted and changed the way I do things instead of giving up things totally.
I’ve replaced other things in my life for things that are feasible now.
Maybe I’m just not dwelling on things. Hmm. I do know that when I got diagnosed my husband and I cried together and then we turned to each other and my husband said, " we’ll deal with this just like everything else we deal with; As a team! And we decided that we weren’t going to push against the inevitable but we were going to find our "new normal”.
I do suffer pain in my back and knees but I refuse to go back on pain medication because I am so much healthier without them. I can’t take any NSAIDs when I’m in pain because of my kidneys and trust me that sucks! So I grab my heating pad and sleep with it and take it easy for a week or so until the attack is over. Let me say ALL of this took time, lots of time. I’m not super woman. I didn’t just decide one day to accomplish this, rather I stumbled, and staggered through life making changes, adjusting, crying; in hind sight it was very difficult. It took years to get back to Happy Beth. The secret is...wait for it...patience, long suffering, persistence and self love!
So I think I’ve answered my own question! Ah ha! Eureka! I do have many side effects with these diseases but I’ve adapted, accepted and adjusted! AAA.
With respect,
Beth
Jen Cueva
Hi Beth, I'm so sorry to read about your PH and other illnesses. Managing multiple illnesses is tough. It sounds like you are doing a great job with your, ”new normal”.
It appears that you did answer your own question. Sometimes writing things out can help us with our thoughts.
Some of the physical limitations that you mention, I can relate to.
It sounds like you have some support at home. As I say, ” teamwork makes our dreams work”. Having such strong support at home certainly helps when dealing with PH and other illness.
Thanks for reading.