Cystic Fibrosis: The Journey To 30
It’s 18th of June and 7 days until my 32nd Birthday. I am officially defying the odds for somebody born in the 80’s with Cystic Fibrosis. So, lets rewind a bit…
Twelve year old me had the big wide world web at my hands on a 90’s Microsoft PC and I was curious about this thing CF… lets google it and see what the wise, old computer says. What popped up on Google made me look at my whole existence differently…
“average life expectancy of 30"
Glared back at me from the screen. It left a bewildered void filled with troubling questions about dying or, having my own family one day but, most of all, that was the pivotal moment my internal time bomb started frantically ticking. Unbeknownst to me, my subconscious had turned the sand timer and I was now in for one hell of a ride.
Goodbye Teens, Hello 22
Fast forward 10 years on from opening the can of CF worms and I am living life in the fast lane at 22. I finished college, I have a great job, I go out loads with friends drinking and partying like all 20 somethings, I take as many holidays as my (almost) broken piggy bank allows and on the outside things look good. I have perfected a fully functioning exterior.
Beneath the shiny surface, I am grappling with years of denial, complete loss of treatment adherence, anger and frustration at my condition as well as sadness at the reality I will likely never really have a “normal" life. I will never see my 30th Birthday. I will never have children.
It was a pretty bleak time inside my head. I had an immense amount of guilt too, knowing I was putting my loved ones through the wringer every time I was taken into hospital for IV’s which was becoming more and more frequent because of my lack of treatment adherence. Guilt seemed to sow the seeds of this CF shit show.
29 And Counting
Spoiler alert! I turned it all around. Well, at least I thought I had. I started therapy with my CF psychologist who unquestionably put a great deal of work in, to get me where I am today. CBT worked. The Commitment & Acceptance therapy worked. It all worked. It did. We got through the journey, landed at the bottom of my feelings- what CF meant to me and, we tackled the treatment monster until it was in submission.
Routine became popular in my mid-late 20’s and helped put me back onto the treatment track.
The CF Monster Still Lurking In The Waters
I genuinely thought I had completely abolished the CF Monster of time and treatment. Diffused the ticking time bomb entirely. It wasn’t until AFTER turning 30, I had the realization that my previous hard work on my thoughts and feelings improved my overall wellbeing and, had made me consciously look at things differently but what it hadn’t done was stop me from holding myself back from things, through fear of:
“what happens next”… “when will I become THAT sick”… “will I make it to 30”…
Somewhere deep down in the depths of my subconscious, I was still waiting for the big 3–0. Like my life was an old VHS and on my thirtieth birthday, the screen would just go blank.
Hello 30, I’ve Been Waiting For You
25th of June 2018, I woke up to 30 and something really magical happened, I felt okay. My VHS life story didn’t stop playing. The screen didn’t go blank. My family and friends surprised me with parties and trips to Europe. This wasn’t just BIG for me, it was just as BIG for them too.
It was, as if, the screen finally played in colour. I made it, I reached the apex of the mountain. I was at the end of the arduous journey. I felt as though I was alive for the first time. I felt invincible.
Being 30 didn’t look like a deep dark hole, lung transplant chats or making difficult decisions around end of life care.
Google was wrong. I was wrong. The statistics were changing. CF care had changed. CF medicine had advanced. By the time I hit 30, Vertex Pharmaceuticals had released the brand spanking new CF modulators and I was hopeful for the future with these new drugs.
What’s Happened Since The Big 30
BELIEVING IN MYSELF BECAME A THANG’: And, believing in my future. I never considered having one before but now I feel I can consider a family of my own one day or getting married, pushing even further with my career, buying a house and who knows, maybe, world domination? There’s no stopping me.
I FINALLY WENT BACKPACKING: I pursued my lifelong dream of backpacking around South East Asia. It was a long time coming and the most awesome experience, leaving me liberated and free.
SYMKEVI BECAME AVAILABLE: I started Symkevi in September 2019, which gave me an impressive increase in my lung function (up by 15%), a reduction in symptoms and reduced my need for IVs. I blew my best lung function number in over 2 years, in my thirties. That’s never happened before.
THE BIRTH OF MY PERSONAL TRAINING PROGRAM: I finally had the confidence after 30 years to start exercising. I had been held back for so long from believing in the physical strength of my body and what it can endure.
COUCH TO 5K BECAME MY NEW FAVOURITE HOBBY: I hit 32 this month and 12 weeks ago, I started the Couch To 5K app. I learnt to run for the first time in my entire life and I love it.
I PURSUED MY PASSION FOR WRITING: I had a strong pull to write and share my experiences over the years but never felt ready, now my experiences flow from keypad to document without a moments anticipation.
The Future Is Bright
In March, I purchased a house, solo — something I never considered doing before. I took a big step forward into investing in my future, a long term one. My first couple of years in my thirties have rewritten a lot of my subconscious thoughts and beliefs around what my life will look like in years to come. That’s right, years. I truly believe the future is bright For Cystic Fibrosis.
The best bit is… I feel as close to a “normal” person than I ever have before. No facade this time. New hobbies, new adventures, new stories and an abundance of living not just surviving.
I don’t see myself watching time slip by in a disarray of panic and fear. I forget clock watching and, I keep on, keeping on. I will see you at 40 my friends, until next time…
Click here to catch up with “Cystic Fibrosis vs. Mental Health: Feel The Fear And Change Your Life Anyway” a very descriptive post of what my lifelong breakdown looked like and how I emerged from the murky green waters, bigger and better than ever.
