Brooke’s Story
My name is Brooke. I’m 39-years-old, I have cystic fibrosis (CF) and have 3 children.
Growing up with CF didn’t seem like too much of an issue for me… Of course, I did my treatments every day, took handfuls of medications and did percussion physio back in the 80’s and early 90’s. There were never ending doctors’ appointments and tests, plus the fact I just never felt normal. I was smaller than my peers and obviously had the embarrassing bowel issues (pancreatic insufficient). I was even too embarrassed to do number 2’s in public, at school and at friends’ houses… I was so skinny and sometimes with the pot belly I would get made fun of.
I then I took up surfing, I swam regularly with my dad at the indoor pool and got involved in a lot of sports. I loved basketball and soccer and actually wasn’t too bad for a smaller kid! In high school I was one of the first to get picked in teams so that was pretty cool. Surfing was my number one passion though and I quite regularly skipped school (which I don’t recommend) if the surf was good. I loved the surfing culture and I credit my great lung health growing up on always being in or near the ocean.
I left school in year 12. Looking back on it now it’s a MAJOR regret of mine, as I was doing quite well academically, but it was interfering with my social life too much, plus I was having to have too many days off to go surfing. I had a few part-time jobs as soon as I finished school, in a fruit market, a cafe, a pharmacy and a super-market (to name a few).
As soon as I turned 18 (actually maybe a bit before) I turned into a bit of a party girl and LOVED being out and dancing. I actually got paid to dance in my late teen years. I could dance ALL night until the early hours of the morning. I went to a lot of live concerts and you would always find me at a club/pub nearly every weekend and some weeknights. I LOVED music and still do today. Music makes me happy. Like a lot of teenagers, I rebelled a bit during these years and often forgot to do my treatments or was too embarrassed to take tablets in front of a new group of friends. My old friends didn’t care and were quite encouraging and supportive when it came to my illness. Bless them.
At 21, I had a MAJOR life change, I fell pregnant with my first baby boy. Life was perfect. I was so happy. I never thought I’d be a mum. This was when I met my adult CF team, whom I still go to now, except a few doctor changes throughout the years, it has mostly been consistently friendly faces (which I LOVE). Charlie’s are amazing and will accommodate you and support you in EVERY way possible, not only with your CF, but they take our mental health very seriously too.
During my 20’s I left 2 abusive relationships, I had another son and met my current partner who I’ve been with for 10 years. We also have a little girl together now too.
I’m not going to sugar-coat it, having 3 children is HARD work. My eldest is 17 and also has CF, which absolutely shattered me during his diagnoses. My younger 2 are 12 and 5 they are a handful, but they only carry the CF gene.
Most days I feel we are winning at life. They all go to school, they participate in sports, they seem to be popular, level-headed kids who are happy, mostly healthy and content.
The days I’m utterly shattered, exhausted and in pain is when I need the most support! This is when I rely on Brodie, the 17-year-old to help out that little bit more. My parents step in when needed, and my partner, if I can drag him away from work. We own a plumbing business so he is away from home a lot, to the point where most of the load of schooling, kids sports, doctors’ appointments, Brodie’s work, MY work (I work part time at a tavern/restaurant), the general house work and errands etc. are on my shoulders. This is really hard sometimes, especially when I’m having a bad day!
The last few years have been particularly hard for me. I have broken my ankle, had numerous surgeries and had a very significant decrease in lung function. Most days I try and do some form of exercise but the older I get, the harder it seems to be getting, which is why you just have to push yourself that little bit harder.
Physical activity is EXTREMELY important for everyone and even more so with someone with CF.
Find something you enjoy and try and do it as MUCH as you can while you are young and fit and then as you start getting that little bit older (like me), just be happy to still be able to do something, whether that be a home work-out, interval training on a treadmill or stationary bike, going for a bush walk/hike/jog/ride, swimming, yoga, joining your local gym or if you can play a team sport, surf, ANYTHING that is going to keep you fit, active and happy!
For the days where you can barely get out of bed, do your normal airway clearance (mine is my aerobika mixed with hypertonic saline and Ventolin) to keep those airways open. Don’t be too hard on yourselves. Life happens and to think we can be compliant 100% of the time I think is a little unrealistic for anyone, not just us with CF and especially if you have the demands of school, work, study or a family.
Also hold on to hope. Hope is what has got me through most days, of that magic pill, neb, or whatever, that could come along and decrease the disease in our organs or at the very least put it on hold and increase our lifespan. I hold this hope especially for my son and all the other adults and children born with CF.
I probably should of added that I believe I have a milder form of CF (especially growing up) I was never in hospital for tune-ups and managed my infections with oral antibiotics so I was extremely lucky in that aspect!