65 Roses Day is Cystic Fibrosis Ireland’s (CFI’s) national fundraising day for essential supports and services needed now more than ever by people with cystic fibrosis (CF). CFI are delighted to be hosting an amazing lineup of stars including Brian Kennedy, The High Kings and Michael English amongst others in their virtual 65 Roses Day Concert, tonight Friday 9th April at 8pm. Presented by Brian Dobson, this event is free to stream, and those in attendance are highly encouraged to donate to CFI and aid their continuous efforts for members of the cystic fibrosis community in Ireland.
We sat down (virtually!) with Galway native, Pia Cloherty to speak about her experience living with cystic fibrosis (CF). Over the past three years, Pia has spent extensive periods in hospitals fighting infection and has been cocooning since the onset of the pandemic. Now on the ground-breaking therapy, Kaftrio, Pia is delighted that she has continued to maintain her health over the past year. She talks to us about keeping her CF in check, the challenges of isolation during the pandemic and the strength of the online CF community.
What are some of the things people with Cystic Fibrosis have to deal with on a daily basis?
One of the main things to know about CF is that it takes a lot of commitment to be organised and follow a daily regimen of medication, which includes numerous tablets, inhalers and nebulisers, as well as staying on top of exercise and your mental health. Something that I have struggled with in the past is that it can be an invisible illness, so you may look great and healthy on the outside while feeling extremely unwell on the inside. When I was younger, I preferred to keep my illness private as I worried about the preconceived opinion that people would have of me based off it but as I’ve gotten older, I have come to accept that CF does not define me as a person.
Tell us about the Cystic Fibrosis community in Ireland?
Ireland has the highest incidence of CF in the world. Although most organs can be affected by CF, it’s the lungs that tend to suffer the most damage, which is caused by persistent lung infections. The bacteria that cause these infections aren’t threatening to a healthy person but can be dangerous for people with CF which means we cannot meet in person as there is a risk of cross-infection. This aspect can be challenging as it would be great to spend time with people that share and understand our struggles. In spite of this, we have a very strong, kind and supportive community online and there is a great team dedicated to CF in University College Hospital Galway, led by Dr O’Mahony. As inpatients we tend to have the same nurses, catering staff and cleaners, that we have all bonded with. They are all so supportive and kind which really makes a difference.
What is your advice for staying healthy, mentally and physically, during a Pandemic?
As a person with an underlying condition, it has been so important to follow the guidelines during lockdowns. I try and get some exercise on a daily basis and thankfully have had access to so many workout tutorials and classes online which makes exercise at home easier. Mental health is just as important as physical health so it’s also important to take days off when you are not feeling up to it and allow yourself to have a rest day, without feeling guilty. I like to journal and write down anything that is causing me stress as I find it really helps to get things out of your head and onto paper. I also find gratitude lists are a great way to alter your thinking pattern. At the start of each day, I write down three things that I am thankful for, it can be something as simple as a warm house or a nice cup of tea but it all helps to give you a more positive perspective.
Were there mental challenges you had to face upon having to ‘cocoon’ yourself so strictly? How did you cope with them?
I have really struggled with cocooning as I am quite a social person. My house has always been busy with my nieces and nephews, family members and friends but we haven’t had visitors for over a year now. We have had a few garden visits when it has been safe to do so and when the weather permits. I’ve also really relied on video calls with friends; tea and chats with friends over Zoom have become the new way of socialising! We connect with daily texts and group chats, sending memes to each other for a giggle, and posting cards and packages to celebrate lockdown birthdays! I have a dog called Hugo that I adopted from Madra five years ago and he has really helped me get through the lockdown. He is such a great character, and provides endless love and hours of entertainment.
What other challenges have you had throughout this whole experience and how have you adapted?
I think the main challenge for everybody throughout this pandemic has been trying to keep a positive attitude and to remember that there are brighter days ahead. It has been a rough time for most people so self-care has become a priority. Taking time out every day to do at least one thing that you enjoy is so important, whether that’s taking a bath, watching uplifting movies or treating yourself to some nice food. Taking time to do something for yourself can really help lift spirits when you are struggling. I studied art in college but had not done anything creative in a few years so I’ve challenged myself to do a sketch most days. I have focused on subjects that I usually struggle with so that has definitely kept me busy and been a nice way to pass some time. I have been very fortunate with the support around me and I’ve found that the pandemic has brought out the best in people.
How has the new ground-breaking therapy, Kaftrio, affected you and your daily life?
Although some people have found it to be a miracle drug, I have not experienced any drastic changes but I have noticed significant improvements that have made living with CF easier. My appetite has improved, helping me to gain weight and reach a healthy BMI, which after years of being underweight is a huge benefit. It has also helped my body to become stronger and more robust. I’ve been able to fight off infections without needing strong antibiotics, which has meant I’ve managed to avoid hospital so all of that has definitely made a positive impact on my daily life.
What do you hope for people with Cystic Fibrosis in the future?
I have great hope for the CF community in the future. It used to be an illness with no prospects, a life faced with many struggles and a short life expectancy but scientific trials and medications have progressed so much that there are lots of options available now which will curtail a lot of the negative aspects of living with CF. I was lucky growing up, as I was quite healthy and my parents encourage me to live life fully so I feel that I didn’t miss out on anything. I hope that the constant research and improvements will lead to more people with CF living normal lives in the future, with the same experiences, opportunities and lifestyles as everybody else. It offers a lot of hope for the future of people with CF and their families, as well as a promising outlook on further medical advances, hopefully leading to a cure someday.
Tell us about Cystic Fibrosis Ireland’s annual 65 Roses Day flagship fundraising appeal?
The annual fundraising day known as “65 Roses Day” on April 9th is vital to raise funds for Cystic Fibrosis Ireland, as well as playing the important role of educating people that may not know much about this illness. Cystic Fibrosis Ireland gives assistance to people with CF and their families in many ways. They educate, advise and support people with CF as well as providing several different financial grants that can really help to make life easier for us. They advocate for our community and our rights which has been so important throughout this pandemic. My friends and family have done a lot to fundraise for CF in the past and they still do, but because the restrictions have forced us to cancel events, we have to go online instead. If people would like to donate, they can do so online at 65rosesday.ie. Anything that people can afford is greatly appreciated – just remember it all adds up!
What do you think people will learn or take away from this global pandemic?
In a way, the pandemic has highlighted some of the precautions that people with CF do take on a regular basis anyway, in particular, hand hygiene, sanitising surfaces, and even the two-metre rule, especially during ‘flu season. Above all, I think that people have been forced to truly appreciate the importance of the little things in life and to not take anything for granted.
What are you most looking forward to once the Pandemic eases?
For me it’s all about getting back to a normal life; hanging out with friends, celebrating special occasions with loved ones, watching the world opening up and everybody enjoying their lives again. I am looking forward to feeling safe in my community and not worrying about the safety of my family and friends. Most of all, I look forward to hugging the people that I care about.
Unfortunately, Cystic Fibrosis Ireland (CFI) cannot proceed with their 65 Roses Day collections on Friday 9th April due to COVID-19. Like many charities, CFI relies on events and fundraisers to be able to continue the important work they do for others like Pia. Please help support people with cystic fibrosis on 65 Roses Day by donating online at 65rosesday.ie
Images by Darach Photography