31 DAYS OF CYSTIC FIBROSIS
My Medical Team Didn’t Factor My Mum Into the Equation
Day 8: Transition of care
Handing over the reins
At nine, my Mum had made me responsible for drawing up my own nebs. At twelve, I took over my physio. At fourteen, my team at PMH suggested a transition period. The idea was a tandem appointment. I went in first and told the team what had happened since I had last seen them, then Mum was called in, and they relayed to her what I had told them. The team envisioned this ‘transition’ would take several years, but they didn’t factor my Mum into the equation.
On my next clinic visit, I caught the bus to Subiaco, then walked to the hospital. I waited in the clinic for my turn, which went smoothly until they asked for my Mum.
“She sent me on the bus,” I said.
To say they were gobsmacked is an understatement. So the doctors rang my Mum, but Mum put them in their place.
“This is Sandi’s disease to manage. Not mine. She seems to have a handle on everything.”
My Mum had her reasons
My Mum had witnessed friend's children with CF go rapidly downhill when they hit adolescence, mostly due to rebellion and non-compliance. She hoped that by handing me control, I wouldn’t rebel quite so much.
The added bonus was that when I left home at 18, she knew I’d been managing my health for four years, so my health management wasn’t something she needed to worry about.
As a result, I’ve never been shy about advocating for my own health.
31 Days of Cystic Fibrosis Bonus Fact
I’m not going to lie and say I was perfectly compliant all the time. At the time the CF diet was still low fat, and I had a rather large dislike to the powdered milk I was supposed to drink, so I would wait until nobody was home to hop into the full cream milk. I wasn’t smart enough to adjust my enzymes accordingly back then, so I spent many hours on the toilet as a consequence of my actions. Some mornings I would skip my physio and say I hadn’t or just lay on my physio table and read.
My first few admissions were a direct result of taking these shortcuts — a lesson perhaps not swiftly learned, but in the end, learned well.
31 Days of Cystic Fibrosis is an awareness-raising campaign to coincide with
the national Cystic Fibrosis (CF) awareness month in Australia.
Next in the 31 Days of Cystic Fibrosis series — People Are More Disabled by Physical Barriers or Attitudes and Assumptions Than by Bodily Limitations
The social model of disability states that people are more disabled by physical barriers (access issues) or attitudes and assumptions than by bodily limitations.
If you’ve just joined the journey and want to start at the beginning, you’ll find the first post here:
📚 Writer, Storyteller, Librarian 🎤 Speaker🌹Cystic Fibrosis Warrior 💞 Lung Transplant Recipient 🤱Mother
Sandi is a Cystic Fibrosis Warrior who has defied statistics since 1972. She lives with her favorite husband and two problem puppies.
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