There was a time once when I was cured, but not by a doctor or medicinal form, but a mindset I had developed through my own ignorance and curiosity. This chapter closely relates with my recent blog about my ‘reset’ admission into hospital and the topic of transitioning in to an independent adult with cystic fibrosis. It should put in perspective the dark side of a positive attitude which begun in my adolescent years. My passion for football was dwindling, I was coming of legal age to drink and go out. However, I didn’t just wake up with the mindset of being cured one day, it wasn’t something that happened over night but more so a collection of events. I can recall four years of my young adult life where this mentality developed and where the attempted detriment of my perfect health record began. I was aninvincible-know-allteenager who created the idea that I no longer had CF.
My first defining moment of my ‘cured’ perception was the very first time that I drank alcohol. I never researched the relationship of having CF and drinking alcohol when I was a teenager, but when you’re considered to live a normal lifestyle, my thoughts concluded that this shouldn’t affect me different from anyone else. I was at a party with my mates, I had smuggled goon into an energy drink so I could completely have my first drinking experience. Turns out, I was the only one drinking at the party as parents and other family members were there. It was a pretty funny night on my behalf and my mates thoroughly enjoyed it. One thing I knew before that experience was that I couldn’t throw up from prior surgery, so even if things didn’t go well with the alcohol, I wouldn’t make a complete fool of myself spewing all over the place. I didn’t get much of a hangover, considering the amount I drank looking back on it now. I believe that this result fueled the thought that I was invincible and cured. I must have subconsciously believed that this has not affected me any different from anyone else, and that I’d seen the effects of alcohol before so obviously I didn’t have CF anymore.
Fast-forward a few months to when I was working fulltime in construction. By this time I was well out of routine with my medication and therapy. Waking up at 5am and coming home at 3pm to go straight to football training was my routine. Combined with going out most weekends and drinking, this snowball effect of poor lifestyle choices was in the forefront of my mind. I knew my priorities had changed from when I was at school. The only thing that hadn’t changed was my results at clinic (besides a lack of weight).
Now that I went to hospital by myself and had transitioned into the young adults clinic with all new doctors I was able to conjure up excuses for my weight loss. However, my lung function rarely dipped because of football (exercise) acting as my physiotherapy for clearance.
By the time I was 20 years old, my weight was light and stable but I was no longer playing football due to lack of interest. I still went to gym and played football casually whenever a team needed filling. My lung function had dropped but not enough to raise any alarms because I knew by the time I had my next visit I could redeem myself to avoid being admitted. At this stage I would bicker with my family members at events. I would say to my mum “I’m cured now, I don’t have to take medication anymore”. I had this mentality that I could back up a night of partying with work or a workout without any performance sacrifice in my health.
My personal appearance had slowly deteriorated from lean and fit to skinny and fit. Skinny and fit is not a good place to be with cystic fibrosis, seeing as there can be the possibility of losing over 5KG in a week if you get sick. Because of my own presumptions of being cured I believed that I looked fine in the mirror and had no issue with how much muscle mass I had lost.
At this stage I hadn’t done my Pulmazyme for 6 months, avoided my Creon at all costs and had literally created the perception that I didn’t need them anymore. This was clearly an issue for others and myself as my stomach pains and farting (according to my friends and partner at the time) was becoming unbearable. However, I was still under the belief that, I was cured.
Skip forward about another year to when my six-year relationship was coming to an end (this was not related to cystic fibrosis, but my choices possibly impacted the situation). This was the closest I have been to being admitted, not because I was overly sick, but because I was more afraid of not being able to change the habits I had developed over the last few years of my life. I had a gut feeling that maybe I wasn’t invincible and that my Creon was as important as the food I was eating.
Fortunately in an unfortunate situation my relationship came to an end, which had given me time to reflect on the path I had chosen with cystic fibrosis. Almost immediately, my perception of my lifestyle had changed; I had cut gambling and drinking to a minimum (gambling completely). I gathered the idea that I was actually not cured and invincible, but I was still healthy enough to recover and not go to hospital which I think was the other ultimatum I would face if I continued my current lifestyle.
I must admit that a few months following my breakup, I discovered the single scene and began drinking socially again only on weekends. The difference was, that I was now fully aware of the impact it was going to have on my body. I had jumped back into training at the gym and focusing on my pace times in the 10KM at the Gold Coast marathon. Being single I had to find new hobbies so I used that time to set new goals in which I did with my journey to triathlon (the hardest physical thing I could think of!)
Looking back on the situation now I wouldn’t change my decisions because I had to learn through my curiosities to move forward in life as an individual. It taught me to appreciate my condition for what it is and realize the importance of therapy and looking after myself, which ultimately has lead to a more enriched lifestyle to this date.
I felt this blog deserved a quick explanation now that I’ve had a few years to think of that phase and put in a perspective for another sufferer. Remembering the fact that I wanted to share my life experience from the age of 16 I knew that some of the decisions I made as a young adult would reflect what I wrote in my book. I didn’t directly make any decision in correspondence to what I wanted my content in my book to perceive, however when I would sit down and try to write another chapter at the current time I realized I hadn’t had enough time to value the weight of my choices.
I’ve had time to think about the power of a positive mindset and how even too much of a good thing can turn bad. I’ve never changed my mindset of being healthy and invincible but I have accepted the thought that empowering myself with cystic fibrosis while respecting the values of my physical attributes will result in success and triumph. In many ways this period of my life never had to unfold. For a teen that was living no different than any of my friends why would I consider the consequence when I had many other decisions to make that seemed so much more important at the time, like having a career and travelling.
It may look like I take a relaxed approach to the condition nowadays but after that period I am more in tune with myself and my bodies needs than ever, and I continue nearly every day to improve the link between my knowledge and physical body for myself and readers of the Sufferers Guide to Cystic Fibrosis. I hope the families and sufferers who read this never have to experience a challenging young adulthood and can learn from this article and my personal experience, because the damage can be irreversible and prolonging this condition is the key to life. I have discovered a balanced lifestyle and support network to give me the best of all the worlds life has to give.