May is Cystic Fibrosis awareness month, and this year I’m doing 31 Days of on Facebook and Instagram. Please feel free to follow me.
May 11th – May 15th
31 Days of Cystic Fibrosis. May 11
Sometimes, best friends have no qualifying factor. I can’t tell you why Julie was my best friend. Only that she was.
We grew up going to CF camp together, attending clinic together and in between times we wrote to letters one another. Letters filled with oh-so-important growing up stuff. Even as housemates, we continued to write to one another although we’d graduated to exercise books by this time. Often we’d sit at the same table, pens frantically writing away. I once wrote six pages on how she rejected the bread, and in return, I received four pages complaining about my six pages.
We went on stealth missions together; we danced, we painted our faces like Kiss to pick up pizza, there was the mysterious case of the higha-woofas, urtundidi, the occasional “There’s not something wrong with the hammer” and drawings. And so, so much laughter (which always ended in coughing fits).
Through everything, Julie always called me Bird or Birdie. Biiirrrrdiiiie when she was especially chipper. I wanted her to know that I’d carry the nickname she had given me forever, so I had a ladybird tattooed on my stomach a few weeks before she died.
Julie dealt with everything that CF threw at her with grace and a dignity that was well beyond her years. Of all the friends that CF has taken from me, the loss of Julie cuts the deepest.
Bonus Fact: I once went to bed and left Julie in charge of a party.
Bad, bad, bad move.
When I woke the next day, all our garden furniture was on the roof.
31 Days of Cystic Fibrosis. May 12
Growing Up When Your Mum has CF
Having a baby, I was told, is hard. As time passed it would be inevitable that my mothering instincts would kick in, I would sacrifice my medical needs to care for my child, and my health would decline.
I ensured my health did not decline by continuing to be an avid reader. Would I have been a reader if I did not have CF? Most likely. But perhaps reading would have been something I could have sacrificed as life got busy.
As Jarryn grew, I continued to read. I read a lot. Because reading has always been my way of pacing myself. To slow down, to rest, to be selfish and look after me. When Jarryn was a baby, I’d often drive to my Gran’s house, and let her look after Jarryn while I lay on her bed and read.
As he got older, I read while he played. On the days I didn’t feel I had the energy to keep up with Jarryn and his friends, I’d let them ride their bikes, play on the trampoline or climb the tree while I sat on the curb and read.
I often wondered what Jarryn thought of his childhood, and if he felt he missed out on things because I had CF, so I asked him.
“I was always busy, riding bikes or my Green Machine, jumping on the trampoline, playing with the dogs or games with my friends. Mum was always there. Sometimes she rode the Green Machine or jumped on the trampoline with me, and other times she would read while she watched me play.
Looking back now, I realise that the times she read instead of joining in were the times she was sick and needed to rest more. Back then, however, I had no clue. She was just Mum who liked to read a lot.”
Extract from ‘Growing Up When Your Mum Has CF Part 1’
Read Jarryn’s Full interview
Bonus fact: A 31-year-old competitively racing Green Machines against eight-year-olds may not be very dignified, but it’s a great way of doing physio.
31 Days of Cystic Fibrosis. May 13
Mum (Mother’s Day)
This post is well out of chronological order, but I thought it best saved for this day. At eight, my mum made me responsible for taking my medications. At nine she handed over responsibility of drawing up my nebs. At twelve I took over my physio. At fourteen, my team at PMH suggested a transition period. The first appointment went smoothly, I went in first, told the team what had happened since I had last seen them, then Mum was called in, and they told 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 was called when it was my turn, then they asked for Mum. To say they were gobsmacked when I replied I’d caught the bus is an understatement.
So they rang my Mum.
She replied that this was my disease to manage, not hers. And she didn’t attend another clinic appointment for 24 years, and then it was only because I was on oxygen and needed a chauffeur.
Mum’s reasoning was based on her statement to the doctors about CF being my disease to manage. She had witnessed friends 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.
The result is that I’ve never been shy about advocating for my own health.
It wasn’t until I was a mother myself that I realised how difficult this must have been for her. So thanks, Mum.
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. 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, and the lesson was quickly learnt.
31 Days of Cystic Fibrosis. May 14
Hospital in the Home
Jarryn was three when a sinus infection spread to my lungs and tipped my health upside down. It was an infection that ultimately cost me 10% of my lung function. For the first time in years, everything else failed, and I needed IV antibiotics. Fortunately, by this time, the Hospital in the Home (HITH) program was up and running. It meant that a person with CF could spend the first few days in hospital, and then continue the IV antibiotic course at home. Cystic Fibrosis WA organised nurse and physio visits at home.
I always liked to do things differently, and I had Jarryn to look after, so I always skipped the first three days in hospital, had my PICC line placed as an outpatient and went straight home. A PICC line has advantages over IV cannulas as they last for the entire course of IV’s. The line is inserted into a vein near the elbow and threaded through to end in an artery near your heart.
HITH meant that I was responsible for both drawing up my IV medications and then giving myself the push dose through the PICC line. Dependant on the antibiotics, dose schedules could be twice daily, every eight hours and occasionally every six hours.
This flexibility allowed me to continue to work, look after Jarryn and go to the occasional wedding. (As far as I know this is the only picture I have where my PICC line is still visible. This was normal life for me, so we never saw a reason to capture it on film.)
Bonus Fact: I’d always taught Jarryn that when having a new playmate over, he should show them around the house, so they know where important things like bathrooms are. We had recently moved, and Jarryn had started a new school, and his first friend had arrived. I was pre-preparing my IV medications for the next dose, as Jarryn took his friend through the house saying, “This is my room, this is the bathroom, here’s the fridge and that’s my mum shooting up her drugs.”
31 Days of Cystic Fibrosis. May 15
Disability discrimination comes in many forms. Often, people create barriers because of what they perceive to be the problem rather than the actual barriers created by disabilities. I’ve experienced disability discrimination in many forms, and I’ve always felt more disabled by society than from my actual limitations.
Possibly the earliest episode I can remember is from my year seven teacher. He was ‘kind’ enough to inform the class that they should be nice to me because I was going to die when I was in hospital, yet also comfortable enough to tell me to, “Go and put your head in a bucket three times and pull it out twice,” when my coughing annoyed him.
The frenemy in high school who blamed all of my achievements on the fact that I had CF, and as a result, I was receiving ‘special treatment’, rather than putting in the hard work.
The job application I passed with flying colours, only to be failed by the company doctor who told me. “I don’t know how you’re still standing, but CF is a childhood disease. You can’t possibly have long left. Why would you want to work anyway?”
Another job interview, “Work and study? That’s a bit ambitious for you. A normal person perhaps, but not you. Study first, work later.” This privileged male, hired his ‘mate’ for the job I had applied for, assuming I would continue to stay on as a volunteer. I did not.
From a medical receptionist at CF clinic. “Thailand? Oh well, I suppose they can always medivac you out. I’ll watch for you on the news.”
Sadly, some of the more recent discrimination I have experienced has come from within the CF community as the cross-infections guidelines tighten.
These are but snapshots, it’s my experience that true equality is a myth, and on more than one occasion, I’ve had to perform to a superior standard in order to be treated as equal to the able bodied. However, there are times when being disabled can be an advantage – I am tough, stubborn and used to fighting to stay alive, I’ve conquered worse foes than discrimination.
Bonus Fact: Despite the fact that CF is not contagious, during flu epidemics like the Swine Flu or the Bird Flu, my superpower was the ability to clear entire supermarket aisles with a single cough.