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Would You Like To Become More Involved With ILFA?

Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA branch where you live.

You can decide what level of involvement you would like to have. If you are interested in getting more involved ILFA would like to hear from you.

You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ info@ilfa.ie or by calling 086 871 5264

Creating Positivity


Two years on from her own IPF diagnosis, support group leader and fundraiser Noreen O'Carroll advocates staying informed, staying in control and availing of back-up services.

In June 2015, I was diagnosed with IPF. A few months later, I attended an ILFA Information Day in Dublin. It was really useful to get good information from healthcare professionals but I left still never having spoken to another person with this disease. That day, a lady accidentally bumped her oxygen container against my chair. At that point, I was close to tears thinking “is this what’s ahead of me? how am I going to cope?” My sister who knows me too well, nudged me in the ribs and whispered “come back, you've gone too far”. Those words were a gift. When I have a bad day, I remember those words and remind myself to stay with just today. There is no point in worrying about the future, I’m not there yet, so I can’t do anything about it, but today I can try to have the best day I can by creating positivity in my life. This helps me cope with the negative thoughts that have a way of creeping in.

So two years into my diagnosis what has helped me? Three things stand out for me; (1) Being informed (2) Being in control and (3) Support

Thanks to the Internet, it’s easy to be informed. When I was diagnosed it was difficult to read the hard facts of this disease. I also realised I needed to know more, so it was useful to find reliable websites with good practical information. I found the ILFA website had good resources and information that’s given in a positive way. I was able to recommend it to my family too when I didn’t have the energy or words to explain what this disease is about.

Informing myself about IPF helped me to feel more in control and take responsibility for my health with the support of healthcare staff. I now know how important exercise and diet are, I know my test results and what they mean for my health. I know if I reach a certain point, I will need oxygen and I’m ok with that now because I know I won’t be putting my other organs under stress. I know the questions I need to ask my consultant when I meet him and if I don't understand something to ask him to explain it again. I was also able to request an early referral to the transplant clinic at the Mater Hospital.

With regards to support; “No man is an island”. If we allow ourselves to be supported by those around us, it is definitely an enriching experience. It took me a long time to be able to tell people about my diagnosis, maybe because I didn’t want pity or to be seen in a different light because I am still me and that’s something I had to work through. To help me do that, it was invaluable to see a therapist for a couple of weeks and work through all the emotional stuff this diagnosis brought up. It helped me make sense of it all and figure out how I could normalise my life again. I go back for a session or two whenever I begin to feel overwhelmed, but this has become less and less. At least I know that resource is there for me if I need it. Within the primary care service, you can access six free counselling sessions. Your GP can refer you, you just need to ask.

I also discovered that there are IPF specialist centres. My consultant referred me and now that I am linked in with the respiratory clinic, I can access pulmonary rehabilitation and I meet the respiratory nurse on a regular basis. She monitors my medication and is an amazing source of support. I know if I have any concerns, I can call her.

This disease is isolating and the chances knowing somebody with it is slim but it was really important for me to connect with others. In January 2017, I started the Midwest IPF support group. Support groups aren’t for everybody but I can honestly say I really enjoy meeting the men in our group and we learn from each other. One member has had a lung transplant and this makes me feel positive and hopeful for my future.

Last October, the Limerick Ladies Mini-marathon took place and I decided to fundraise for ILFA. Anyone who knows me, knows that I am allergic to walking (I’m so lazy) so this was a big deal for me. I was asking people to support me so I had to tell them why I was doing this. Before I knew it, my family decided they were doing the mini-marathon too, even my 83 year old mother was getting in on the act, I had to call that one and tell her she was the official tea lady on the day. My son Steven was renamed 'Stephanie' and was given a wig to wear. That day showed me that I don’t have to do this on my own - my husband, children and family are my biggest source of support. They will always be there for me and for that I am grateful every single day.

I read an article online where the author talked about the importance of having something positive to look forward to, however big or small, it’s a chance to reclaim some control over life. I really believe the value of this because initially when you have been diagnosed, you are in shock. With time you will realise, that you do have a future and having something to look forward to and making plans are what keeps us going.

So this year I am planning to learn how to build dry stone walls - completely random, I know! I plan to buy a poly-tunnel and grow fruit and veggies, and go to Indonesia to help my daughter realise her dream of setting up yoga retreat courses, I might be her best customer yet. These plans will keep me moving forward and positive about my life despite IPF - and when you're ready you will find what works for you.

Noreen O'Carroll

IPF Patient, support group leader and fundraiser