Rolling the dice

CF is un-bloody-predictable. Daily life is a role of the dice. For a control freak like me it can be very unsettling.


The Thursday before last I was feeling absolutely awesome. Exercise was a breeze. During our evening stroll I didn’t need to ask Dave to slow down once. I could talk AND walk – even up hills. Stairs were no obstacle. When people asked me how I was feeling I was using superlatives in my answers. I was chuffed that all my hard work prioritising my health was paying dividends. In my head I had little dancers and singers performing a rousing rendition of “We are the champions” by Queen.

Fast forward 72 hours. Whilst sitting calmly in a chair I felt a gurgle in my lungs, an urgent urge to cough and spat out blood. The dancing chorus in my head slowed and looked around at each questioningly before petering out. The sound system even squealed in surprise and consternation. My chorus and I sat with our heads in our hands for 20 minutes looking at the cup before us slowly collecting blood.

Blood from the lungs makes an intermittent appearance in my life but this was my most significant bleed. I’ve had a few practice bleeds so I knew not to panic but calmly waited for it to stop – which it did. It was also handy to have Dave around to check that sitting calmly and waiting was an appropriate course of action – which it was.

It puzzled me though. I couldn’t understand how I rapidly progressed from happily kicking CF’s arse to having my arse comprehensively kicked instead. It slowly dawned on me that of course this is actually business as usual. When it comes to CF there is no rhyme or reason. We have bad hours, days, weeks or months for no good reason. Just because. We suddenly find ourselves in a bad patch and hope we can find our way out of it pretty quickly.

It’s a little like being at the beach out past the breakers riding the swell. We feel safe because once the wave passes our feet touch the sand again and we can stand. Every now and then, unbeknownst to us, we drift over a dip in the sand. Rather than touching down, the ocean floor is suddenly not where we thought it was and we take a shocking plunge under the water. That’s what these bad times feel like to me.

It’s easy to get depressed about this changeable life we lead. This time however, I shrugged it off and accepted this little setback as a temporary dip in the sand.

If it’s hard for PWCF to accept the ups and downs, it must be even harder for our family and friends, especially when we look so well. Please be patient with us if we find we can’t do something we want to or have committed to. We’ll be back on top of our game as soon as possible, as soon as the dice come up with the right numbers again.


2 thoughts on “Rolling the dice

  1. Wow what a moving post! Thank you for sharing this personal moment. It makes me appreciate what people with a chronic illness and CF go through on a daily basis. Your blog is a great insight into you as a person and I can practically hear your voice as I read.


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