The major organ Cystic fibrosis (CF) affects is the lungs. Day to day, our lung function is what negatively affects us both the most. On a good day we both function pretty normally. On a bad day a fair bit of coughing and gasping for air goes on. Stairs, hills, and walking while talking and/or eating are a bit too challenging at times. Vacuuming, lifting heavy grocery bags, changing the bed sheets etc. are all activities which take extra effort and necessitate recovery time.
Coughing is also what people notice about us, what makes us different, the first sign that we aren’t quite as well as they are. Here are some phrases that I’ve heard way too many times:
“You should give up smoking.”
“Haven’t you seen a doctor about that cough yet?”
“Could you possibly die quietly over there?”
These comments drive me extremely nuts. When I hear the smoking comment it takes all my will power not to punch the person who said it. I have not smoked myself into this position thank you very much.
When I cough in public I’m often self-conscious. I wonder whether people around me fear that I’m afflicted with a pandemic flu and that I’m contagious.
Much like the Inuits recognise many different types of snow, so too do PWCF recognise many different types of coughs. Here are my top five cough picks:
The morning cough
The first activity of my day is my morning cough. As soon as I open my eyes I can feel the cough building. Sometimes it happens straight away and there’s no stopping it. Sometimes I can hold it off for a few minutes for a less intense and exhausting start to my day. My morning cough is a sign to our dogs that I’m awake and the day is beginning – it’s their alarm clock.
The mid exercise cough
This happens every 7 mins when I’m running. I can set my stopwatch to it. This coughing is usually so violent that it almost makes me throw up and brings people out of their front doors to ask if I’m ok.
Dave and I have coined this phrase. The twitchy cough is a dry, irritated, irritating and asthmatic sort of cough. Unfortunately, coughing never alleviates the urge to cough so I keep coughing and coughing and coughing and coughing before resorting to codeine to break the cycle.
The middle of the night cough
I hardly ever sleep horizontally. I need to be propped up on pillows to stop myself coughing. I have five pillows in different shapes and fluffiness so I can create the perfect incline needed each particular night. I also keep ventolin, atrovent and my special friend the codeine syrup beside the bed for when it is particularly relentless.
The usual cough
The standard, run of the mill, every 15 mins little cough that defines PWCF. Very helpful for locating each other in a supermarket or department store – just follow the cough!
We do a lot to keep our coughing to a minimum – physio treatments, exercise, medication. Unfortunately our coughing is never banished for good. It’s ingrained into our lives. It’s more a matter of maintaining the status quo really.
This week has been especially entertaining. Our two Kelpie dogs have contracted Kennel Cough. They were vaccinated against this so I’m pretty surprised they’ve both been struck down. There have been times when all four of us have been coughing and gagging together which is quite a spectacle. Our joint morning coughing sessions are pretty funny! For now, it’s antibiotics and codeine all round.