Undoubtedly there are quite a few things that suck about living with Cystic fibrosis. There are some positives though! Here are my top ten:
1. Meeting Dave – we met in hospital while we were both having an admission. Both of us having CF is a pretty decent sized piece of common ground.
2. Meeting amazing friends who also live with CF and sharing our journeys with each other. You know who you are and I hope you know you’re very special to me!
4. Being able to eat whatever I want whenever I want! Turning the food pyramid upside down is actually encouraged.
5. My career. Without the experience of living with CF I might not have stumbled across the field of genetic counselling.
6. Perseverance. On the whole, CF hasn’t stopped me achieving what I want in life. I have had to adjust some expectations though. I’ve learnt that slow and steady wins the race and I’ll achieve my aims eventually.
7. Appreciation. I’m not usually very good at living in the moment but there have been times when something to do with CF has made me really appreciate being alive and enjoying life. At times strawberries taste sweeter, the sky is more blue, a sunset more spectacular, time with family or friends more special because of the reality of CF.
8. Downtime. Having an admission to hospital has lots of downsides but it gives us a block of time to concentrate on ourselves, our health and recovery and to enjoy some relaxation while we recharge our batteries. It’s enforced time out from life. Watching DVD’s, reading, napping and generally chilling feature prominently in my admissions.
9. Newtown. One of the main drawing cards for moving to Newtown is its close proximity to our hospital. Being within walking distance is a massive plus. We love Newtown. Spending a weekend lazing around in the park, going to a favourite local coffee shop, relaxing in the historic cemetery or window shopping on King St is our idea of a great weekend.
10. Unique experiences. Some experiences are far from enjoyable at the time but when you’ve survived it’s surreal to reflect upon the fact that what you’ve been through or are going through are not everyday occurrences for most people. They aren’t even a lifetime occurrence! To pick a few choice examples… most people haven’t had gangrene in their bowel, most people haven’t coughed and sprayed the book they are reading with blood and most people haven’t had a cannula inserted into their scalp. If I had a choice about experiencing these things I would say “Hell no!”. But, I didn’t get a choice. So, I experienced, I survived and now I have the physical and mental scars to show for it. They are part of me and I wouldn’t be who I am today without those experiences or scars.
11. Lucky number 11 silver lining! CF can also supply some 100% fantastic experiences! On occasion I have been to free concerts, met a handful of celebrities, received a Starlight wish and yesterday… went on a free flight around Sydney. The Fun Flight is an annual event for kids with a life limiting condition. Dave and I are certainly not kids but we snuck in the door to boost numbers. It was fabulous seeing Sydney from the air, sitting in a real live cockpit, hearing the tower speak to the planes and watching choppers practising their slick mustering moves. The free sausage sizzle and Cornetto was pretty nice too. Apparently our plane was the plane everyone wants and all the other pilots were drooling over it and quite jealous we got a fly. I took some great pictures and met some great people. As we were taking off I thought – this flight doesn’t change my DNA… but the 45 mins in the air gave me time out from a life that doesn’t soar on wings. It was awesome. So, for any CF families in NSW remember that around this time of the year the Fun Flight event occurs. They had too many pilots itching to have a fly and not enough kids so come on down! Parents, Grandparents and carers can fly too. Dad, in the next 12 months you better find a child with CF to chaperone so you get to fly! I’m a bit too old to chaperone these days. Sorry.