Forget Five Feet Apart. People With Cystic Fibrosis Are My Family

Day 5: CF Camps

Everything is better when you are the same 
Growing up, it felt like other children with CF were part of my family, except I only saw them when I was in the hospital or at our yearly camps run by Cystic Fibrosis WA.
When I was with other people with CF, I no longer felt different; I wasn't the only one who had to swallow handfuls of enzymes or the only one forced to stop playing because it was time for airway clearance. 

I was with my tribe. 

Image by Zurijeta on Canva

Our shared experiences connected us, making an unlikely bunch of children with differing likes and dislikes firm friends.

Fun in the sun
There were lazy summer days at the beach, tube rides, and the occasional day trip. On the days spent at the campgrounds, we’d participate in mini Olympics (which saw some bedsheet togas appear one year) or slide down our homemade waterslide.
Even physio, normally a boring daily chore, was fun. We would line up and chat as we waited. The line for Lappa was always the longest; he had a gentle way of performing percussion, which always made physio seem more like a massage.

The Nighttime bonding
Lights out meant the start of endless chats. It was where we shared our stories and learned from the experiences of others. We shared our fears, our hopes, and our dreams. At camp, I learned what my future held.
It gave me a greater understanding of CF and the need to stay healthy for as long as possible. I learned about infusaports, coughing blood. I saw what the progression of my disease looked like.
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Knowledge is power, and when my health started to decline, I knew what to expect.

31 Days of Cystic Fibrosis Bonus Fact

When playing Capture the Flag with other children with CF, the main problem is that inevitably someone would cough and give away their hiding spot.
… and a horrible fact
Due to cross-infection guidelines, people with CF are not encouraged to meet in person; there are no more camps or social activities. Some people with CF have never met another person who also has CF. The isolation, along with the harsh medical regime, has seen mental health issues in our community rise significantly.

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Next in the 31 Days of Cystic Fibrosis series — Hospital Felt Like an Extension of Camp
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As frequent flyers on Wards 7 and 9, we were allowed more leeway than other patients, and it felt like we had full access to the hospital after dark.

31 Days of Cystic Fibrosis is an awareness-raising campaign to coincide with
the national Cystic Fibrosis (CF) awareness month in Australia.
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​If you’ve just joined the journey and want to start at the beginning, you’ll find the first post here: Your Daughter Has Cystic Fibrosis