“It’s always tough to say no to events or be unable to do things because a “bad day” is too hard to overcome. Doing small day to day things to help lessen their frequency is important.”
“Burning the candle at both ends can be challenging for patients with pulmonary hypertension. Days when we try to do too much, sleep too little and don’t drink nearly enough water take a toll on our bodies in a way “normal” people don’t understand. When we feel run down it often takes a little longer to recover. As adults, we can’t shirk our responsibilities to our work and families and, as kids, missing school means the scramble to catch up afterwards. So how can we take better care of ourselves day-to-day and still do all the things we want in life?
“Routine is important. No matter your age, if you have been living with this disease for any length of time, you’re familiar with a number of routines: regularly ordering medications, taking them at the same time daily, and recharging oxygen machines or switching out tanks. While these routines help us manage our PH, we also need routines to take care of our mental and emotional health and general well-being. These are often the hardest routines to keep, since no day is exactly the same and it’s hard to plan for what might occur. These past months I have really tried to keep a better routine, and some small changes in habits are helping me feel more in control of this disease.
“I’m not a morning person, so I try to wake up and get up slowly, giving myself time to adjust to the morning. Once I’m up, I wash my face, drink a warm glass of water with lemon and make a smoothie to take with me on the subway1. I then listen to a favorite album/podcast while doing my makeup and packing my lunch for the day before having a coffee, checking emails/magazine article and head out the door to work. Once I get to Columbus Circle it’s an 11-minute walk (at my pace and with a stop or two to catch my breath) to the office, where I’ll stay until 6:30 p.m. Once I’m back home, I’ll heat up dinner I prepared on Sunday, and unwind with some personal “to dos” and a book or episode of a new Netflix© show before shower and bed. I turn on my aromatherapy diffuser for a bit before falling asleep and the lavender, rosemary and peppermint oils are known to help “easy breathing.”
“This routine isn’t set in stone and there are certainly days I switch it up or add a face masque (trust me these work wonders!) but that down time in my day provides a much-needed sanity check and allows for a few minutes to catch my breath and recharge during a busy week.
“On top of this routine, I try to find hobbies that excite and keep me active. I have been singing since a young age and love being part of choirs or getting up somewhere on my own. Singing also helps my breathing and I try to practice the warm up exercises whenever possible. These deep measured breaths and controlled release help me manage my breathing better, and I notice a huge difference if I take a break from my singing activities. They are great for lung capacity and allow me to sing opera songs and have the lung function to hit some very high (very fun!) notes.
“On days I can’t get around the city so easily, or when I need a more restful day, I turn to painting and writing. Painting a picture is a leisurely pastime and after sitting quietly, I am up for a short walk to a coffee shop or around the block to find new inspiration.
“These weeks leading up to PHA Awareness month have been exhausting for me both physically and mentally. NYC’s inconsistent weather makes breathing much harder, and my apartment is very dry and hot now that the radiator heat is on for winter. I have attended a number of weddings this year, and I am finally catching up on all my domestic chores and thank you cards to those who supported me in the O2 Breathe walk in Philadelphia.
“It isn’t unusual for me to get to Sunday night and feel like I’ve spent the whole weekend “busy” and I spend the next week run down or frustrated that there’s still 30 things on my to-do list. Taking my own advice and unwinding is something I’m not great at doing. I’ve visited my parents in New Jersey a few times recently for some much-needed R&R and cuddles with our family cat, Cadbury. I’ve also started exploring NYC more now that the humidity has subsided, enjoying some great dinners out and “disconnecting” from technology for a few hours every weekend to simply appreciate all that’s around me.
“It’s always tough to say no to events or be unable to do things because a “bad day” is too hard to overcome. Doing small day to day things to help lessen their frequency is important. Whether it’s following a routine similar to mine, or developing one of your own, be mindful of what helps you feel rejuvenated. The more they become routine, the better you can feel day after day.
“1 My favorite smoothie at the moment is spinach, banana, orange and pineapple juice, with Tropeaka© Acai Berry powder.”
**Please reach out if you have any questions for me or want to connect! Follow me on Instagram @heartlungfit or @Kiwibekah**
Central Park with my Sister
Weddings with friends
Weddings with the sisters
Exploring NYC with friends