“Support groups are important information sharing avenues – you know you’re not alone.” – Lorraine.
For Lorraine, 78, who has been living with Pulmonary Arterial Hypertension (PAH) for 19 years, a positive attitude, connecting with others who understand what she’s going through and implementing self-management strategies are key to helping her live her best life.
“I focus on looking after myself through exercise and diet. I was once a social smoker but I’ve been a non-smoker for 50 years. I do a refresher pulmonary rehabilitation course when I can get into a class and I’m hoping to join a Lungs in Action group. Once I move from Brisbane back to the sea air, I plan to start a support group. Support groups are important information sharing avenues – you know you’re not alone.”
The day-to-day impact of PAH can take its toll, so Lorraine focuses on doing the things she loves while listening to her body.
“Some days, particularly on wet, windy days and in winter, I struggle to breathe. Small footpath inclines, steps and holding my hands above my head to reach for clothes on hangers all leave me short of breath. I like to get outdoors and enjoy nature and I walk my small dog twice daily. I watch a lot of TV and read, but I try not to knock myself out with things.”
“Shortness of breath, the days when it’s difficult for me to breathe and walk and talk, is an on-going issue, but my mantra is ‘never give up, just hang in there and something good will happen for you’.”
“Live the best life you can by encouraging friends and family to treat you as just “one of them, not someone ‘special’. Get on with doing the things you love, for me, it’s the garden and growing orchids. Every day I walk the garden and nurture the orchids. Feeling sorry for yourself is a waste of time, so don’t do it. Be happy and positive.”
Finding reliable resources and information about a rare condition can be difficult. By connecting with Lung Foundation Australia’s services, Lorraine, who is a member of our Rare Lung Disease Consumer Committee, has attended education seminars, completed pulmonary rehabilitation and is helping to fundraise.
“At a seminar last year, we were asked for a show of hands as the presenter called out lung diseases. With the call for ‘hands up if you have PAH’, I was the only one in a room of some 120-130. That to me, signifies how difficult a disease it is to have diagnosed. Awareness about any condition is an absolute must. When I was first diagnosed, I did not have a clue about the condition, except that I knew it was in my lungs.”