To begin, I am the girl with multiple, less common complexities. I take 60+ pills a day and vape more than your folks did in pubs before the smoking ban. I inject just for kicks (jokes, I’m diabetic). At night, I am fed through a tube in my stomach and antibiotics are not just a crash course of amoxicillin but rather an intravenous cocktail of aggressive antimicrobial drugs via a method often used in cancer patients.
For most people at least, breathing is an effortless bodily function. It is not effortless for me and it gets increasingly difficult as I age.
To give an idea of my character, my dad said something about me once, that I’d go to “the opening of an envelope”. It wasn’t too long after that conversation with him that I found myself destined for Japan with probably less than a hundred quid in my bank account and a heavily bleeding pair of lungs. I was in A&E (again) with less than twelve hours to go until my flight. Typically, they admitted me and the doctor couldn’t see me anyway. I politely told the junior to inform my consultant that unless he too was boarding a plane to Tokyo (in at that point 9 hours), I would see him on my next visit. He said my consultant phoned and said to let me go as I knew myself best. And he was right, I did know. I managed fine and enjoyed my trip.
Of course, I didn’t know at the time of booking my ticket that a tonne of crap was going to try and prevent me from going, and it wasn’t the first and it wouldn’t be the last time. But I didn’t let it because being honest, after I piss and moan for a bit, forcing the chips up when they’re down is the only way I know how.
Fast forward and rewind to two weeks ago, I struggled to last 20 minutes on a treadmill at gentle pace without incline and last week I climbed a mountain, both literally and figuratively. That’s a small milestone for me in terms of my health as it was ten times harder for me than the twenty-two others that trudged on like mighty Trojans ahead.
“A light walk” said Alan referring to the mountain we were about to hike on the last event of the year after spending the morning on surfboards in the Atlantic Sea (I sat that one out as I couldn’t risk getting my port wet and infecting it). Yeah right. It was not a light walk (it was a trap!). I did not find this to be a simple task and I would not have had any satisfaction if it were. It was a contest of my determination and will and more than anything, that is how and why I made it to the top. But instead of my lungs being a daily limiting factor, they are the motivator in what keeps me going.
Exercise is a key part of being fit and healthy. It is an endorphin release with greater power than any drug when the heart gets pumping and improves oxygenation and overall lifespan to those who make it a regular habit. It is fair to say that exercise is as important if not more so than having a good breakfast in the morning, but I remember the days where it was totally discouraged for people like me with cystic fibrosis. In my years of secondary school, I was instructed to sit on the balcony during P.E classes while I watched my peers actively participate.
Having a chronic primary lung disease, I’m not exactly blessed with mounts of energy. I’ve been through a lot in my life and I am constantly learning and growing, through friendships I’ve made and decisions I’ve taken on my own when the odds were stacked against me.
Before the final event dawned which was a weekend in a holiday village in Castlegregory, I was admitted to hospital as my usual luck would have it when I have plans that I’m looking forward to. I felt hard-done by as my whole life has been one thing after another passing me by and now it was happening again, but I put the work in and upped my game in those few days to get out of there, and I did, barely. It meant I had to take half a hospital home with me to equip me for a further two weeks while I finished the course of IVs, but I was happy to do that and lucky to be given that option at all which meant a lot to me as I still had a chance of going on the trip. I was fortunate in that a new antibiotic accounted for my ‘bounce back’ quicker than I’m used to. I don’t know if that’s coincidence or evidence that everything happens for a reason but for the sake of looking on the brighter side I’ll go with the latter. I didn’t think in a million years I’d drag an IV with me through the Kerry mountains. I didn’t even know I could take breaths that deep and feel as good as I did when I drew them.