Tag Archives: fibrosis

Lungs, Lunch and Violin…Just An Ordinary Day in Paradise.

Yesterday, Geoff and I drove down to Sydney for what turned out to be: lungs, lunch and violin.

Well, that’s quite an over-simplication. Or, what you could call: “the bare bones”.

Starting with the lungs…

Lungs

Every three months, I have routine lung function tests followed by an appointment with my lung specialist to monitor the spread of fibrosis in my lungs and to manage infection and any other lung nasties. While my lungs aren’t great and I have about 60% lung volume at the best of times, the fibrosis has been pretty stable for the last two years and I even get the odd improvement. So, these appointments aren’t all doom and gloom and we usually have a few laughs with my specialist.

However, there is no denying the reality of these appointments. My lungs are my weakest link and so we’re pretty much staring straight into the face of fear, eye-to-eye, without so much as a blink. We are probing the depths, trouble-shooting and coming up with a detailed defense strategy. This is very sensible and naturally the more you know about your enemy and yourself, the greater your chance of victory. However, at times, these conversations hit a nerve and it’s like plunging a knife in a very raw wound and it’s not surprising that I completely freak out and leap out of my skin. Who wouldn’t?!!

Although I’m tougher than I used to be and am somewhat resilient, I’m not made of stone. I crumble and fall apart just like anyone else and wish I could cry. Cry buckets of tears but the well has run dry.

The key outcome of this appointment is that I need to start dropping my prednisone further. This is supposedly good news. I keep telling myself this is good news. That means that I’m doing well. The disease is being managed and the risks posed by the medication outweigh the likelihood of the disease flaring up. This is what I want.

I can say that more than 24 hours later when the dust has settled. However, yesterday I was beyond terrified and wanted to boot some poor innocent hermit crab out of it’s shell and move in. Lock myself away and shut the door. Never come out. I really had to remind myself of all those things you need to do when your journey hits a snag and the wind goes out of your sails ie walk, get some sun, play my violin. EAT CHOCOLATE!!

We are now getting pretty close to that invisible line where the disease starts to reclaim lost ground and if it isn’t managed like the precarious house of cards that it is, I could literally come falling down. Have a flare. Of course, this possibility terrifies me and for good reason and I feel like I’m about to drive a car over the edge of a very steep cliff and the waves down below are just waiting to wrap around me. Pull me under.

I don’t know how likely it is to go pear-shaped but my doctors seem reasonably confident. This would suggest that all my flapping around is mere “catastrophising”, even though I still see it as healthy self-preservation. I should be right dropping 1-2mg gradually over a few months but then the real test is on. They’re trying to get me down to 5mg. At this point, I’m very inclined to quote Darryl Kerrigan from the classic Australian movie: The Castle:

But sometimes, you need other people to have a bit of faith in what you can do and what is possible. Sometimes, you need that outside reminder and jolt that your dreams really can come true.

So, it seems, I have to swallow my own medicine and take a deep breath and swing from the chandelier!

However, our day was not all doom and gloom!

Lunch!

After dealing with the lung monster, Geoff and I headed down to Sydney Harbour for lunch at The Kirribilli Club in Lavender Bay. This was the perfect antidote. I chose this place due to its sweeping views over Lavender Bay, Luna Park and the back of the Sydney Harbour Bridge. We could see the planes coming in to land in the distance and the ferries chugging their way through the harbour to places like Manly, Balmain and Kirribilli. It was so incredibly relaxing and the perfect antidote for a stressful morning. I still felt agitated inside, way too much like a churning washing machine but I could also feel that calming salve mounting a counter-offensive and could almost relax. Watching the water is so good for that and so incredibly therapeutic!

By the way, I should mention that it was unseasonably cold and the wind was whirling around, slapping us in the face. Yes, it hurt!

I was mighty glad I hadn’t got around to packing up my Winter clothes because woollens are back on. Indeed, where are my thermals?

After lunch, we went up to my parents’ place to pick up the kids and have dinner.

My beloved violin.

My beloved violin.

Violin

I’d packed my violin and decided to have a bit of a jam with my Mum who is an accomplished pianist. She’s taught the piano for many years and now that she’s retired, plays in The Lyric Trio with a singer, clarinet and her on piano. They play at Nursing Homes and retirement Villages, pretty much out o the kindness of their hearts.

Playing with my Mum was a huge step for me. While it sounds simple and natural enough, I’ve only been playing for 3 years and for the last 12 months, I’ve been struggling to keep up with my practice, especially given the ups and down with my health. The violin is a very demanding instrument and it’s not easy for anyone to develop good bowing techniques and get those awkward, uncooperative fingers to behave and find exactly the right spot every time. When you mix these difficulties with someone else playing the  piano, my mistakes become horribly magnified…especially to a trained ear!! These mistakes aren’t anywhere near as fatal when I’m playing alone. Sure, I know it doesn’t quite sound right but there isn’t that discordant clang, which is almost as painful as fingernails scraped down a chalkboard.

Just to exacerbate my violin battles even further, my bifocals were struggling to read the notes and I was making more and more mistakes. This infuriates me, of course, these mistakes aren’t “me”. Or, at least, not a true reflection on my playing.

I’m sure I can hear you pondering about me and the bifocals and wondering  how they fit in since I don’t wear glasses but is a sin of omission ie taking my glasses off for photos really such an unforgivable sin?

I think I’ve just stumbled into another post.

xx Rowena