(Article taken from REDteen Magazine 2014)
A few years ago a young lady with CF, Lilly (aged 15 at the time) was asked some questions about what it was like to live at boarding school while managing the treatment she needed to do for her cystic fibrosis (CF).
1. What was it like to adjust to boarding school, and how have you found managing your CF treatment there?
It wasn’t too bad adjusting. At first, I found it hard to find time to do my physio and fit it in with all the boarding school extra stuff like washing and chores, but I eventually worked out the schedule that boarding has. It’s now easy – I just have to do it.The hardest thing was probably coming from a small country primary school to a big high school with only girls, and having to adjust to school work, make new friends, play sport and not get lost around school ;on top of it all, I still had to do my physio!
2. How have people in your boarding house and at the school reacted to the treatment you have to do to manage your CF? Have you had to explain to other students about CF?
At the start, I found it hard to tell everyone and people always asked where I was in the mornings and afternoons when I was doing my physio. I would just say I was at the nurse, but now It’s just easier to tell them straight out, “Oh, I have CF and I have to do all this treatment for it.” I don’t really know if people at school know that I have CF. The girls in my homeroom know because we had a lady from CFWA come and talk to my homeroom about it but apart from that, I don’t know who knows. I asked a friend Verity, today what she thought about me and CF and she said that I was good at dealing with it and that I didn’t use it in a way to make people feel sorry for me. They know me just as Lilly, and see me as an ordinary person, not the girl with CF, and that’s how I like it. I don’t want them to see me as the girl with CF. I don’t bring attention to it.
3. What is your daily routine, including school things, sports, CF treatment and fun things?
I wake up at about 6:55 am and get ready for breakfast at 7 am. After breakfast, I do my physio, which usually takes me to about 7:45 am depending on what I have to do. I go to school at 8:25 am, come home from school at 3:25 pm and then I either do my sport for school which finishes at 5 pm-ish, or I do my physio until 4-4:30 pm. I’ll then hang out with my friends until 5:30 pm when we have dinner and from about 6:30-8:30 pm I study. I hand my laptop and phone in at 9:30 pm and then go to bed at 10 pm.
My days are pretty structured and the same thing happens pretty much every day, but it’s a good routine and I get everything done I need to do, so it works for me.
4. How long have you been a boarding school for?
This is my 3rd year here; I am in Year 10 and I love it.
5. What is your favourite subject at school and what things do you like to do in your spare time?
My favourite subject is probably P.E. studies or Human Biology. I love to learn about how the body works and how it relates to CF and how fitness and things affect the body. In my spare time I play sport. That is the best thing about being in the boarding house -it’s easy to access many different sports. I have been lucky enough to be selected in the IGSSA netball team to go to Malaysia and play netball during school holidays against other countries. But my most favourite thing is being at home helping dad on the farm and just driving around.
6. Do you have any siblings? Are they at home or in boarding school too?
I have an older sister who is in Year 12 and she is head boarder at my school. I also have a younger brother who is in Year 5 and he goes to school in our home town.
7. Has it been hard for your parents with you in boarding school? How often do you get to see your family?
I know the first year was hard for mum as I don’t think she really knew if I would be able to cope with all my physio and things, but now I know she’s fine. She trusts me to get my physio done and is up to me to do the right thing. I see my family every few weeks when they come up to Perth. The thing I love the most is going home and getting away from Perth and just being on the farm.
8. If you were to become unwell, what happens?
When I do become unwell, mum comes up and I go into hospital. This is probably the hardest thing as I spend as least time as possible in hospital and then spend the rest of the time at home, on the farm. Mum and I do all my medications and things through the PICC line at home. My teachers email me work, and I try to do as much as I can. If there is a nasty cough or cold going around the boarding house, I sometimes go home and do school work via emailing teachers.
9. Who takes you to your hospital check- ups?
When I have my check-ups, my mum comes up and takes me as I think she likes to be there to check up on how things are going as she doesn’t really know either, because she doesn’t see me very often.