We asked Irulan who is 14 and lives in Jarrahdale with her parents and two sisters, about her life as a young person living with cystic fibrosis (CF). Despite experiencing some extra obstacles on top of having CF, Irulan’s strength, maturity and bubbly personality allows her to deal with day to day challenges and still be a typical teenager who enjoys hanging out with her friends.
When I’m at school I sometimes forget about having CF until lunch time, when I have to take my Creon. During the holidays I know it’s there because I’ve got my parents nagging me to do my treatment. It gives me a headache doing all the stuff. CF does impact on my life to some extent because I am private about having it, so it’s hard going to parties or to sleepovers, if I have to do my treatment there. But I am going to Canberra next year with the school for a week and it will be my first time away so I will have to do my treatment, possibly in front of others. My sister went on the same trip last year and it sounds great. I am really looking forward to it.
The hardest thing about having CF is trying to keep track of everything. All the medications and physio are difficult to fit in along with homework and getting ready for school. Trying to remember the names of all the medications is hard too. Most of them though I can say, but there are a few I have to think about. The names of the medications are on my medical alert card so that helps. I have a medication box where you can put two weeks’ worth of medication in there. I make it up myself and then my mum checks it.
Sometimes I try to argue myself out of doing my physio, when I’m at home but if I don’t do it I feel slightly guilty. I take my Creon at school at the drink fountain. My friends don’t really know anything much about it, they don’t know what it is. As I said before I keep it private.
The check-ups at the CF clinic are changing now that I’m a bit older. I go in first then mum comes in a little while later with me. They are trying to do it so that when I’m older I will be used to going to appointments on my own. Occasionally I like it but sometimes it is hard as I feel like I will forget what they say.
Apart from my CF, I also have epilepsy. Two years ago I had a seizure at school. Luckily my mum was actually already on the way to my school to take me to a CF appointment. I don’t really remember much except I woke up on the floor and there was my mum. I spent a week and a half at PMH, as I was having continuous seizures and they were trying to get them under control. They were able to get the seizures under control but I still needed to stay in hospital for another couple of weeks so they could check I was OK. The epilepsy was brought on by adolescence. About eight weeks later I had to go into PMH again for a tune-up, which was my first admission for CF. I was there for another three weeks. It was a tough few months for me and my family. My seizures are under control now. I just have some more medication to add to my CF medications.
A lot of people say I’m good with little kids, so I am thinking of being a primary school teacher when I am older. I already do some babysitting which I enjoy. At high school I like media, sport and cooking, although I do have my own style of cooking which the teacher isn’t too keen on. I also really like Anime –which is a Japanese style of animation and I like playing netball too.
I don’t want to think about the future in terms of CF, I live with the now. If I think too much about it, I can’t sleep at night as I get really curious about things. So if I just think about the present that makes it easier for me.
Article from RED Magazine, Edition 4, 2016.