I am 33.
Was fine until I was about 17, always played lots of sport.
It's been a battle and a lot of work to maintain my health since then. I am fortunate enough to be able to hire a personal trainer. And try to exercise every day. But for most of the past 8 years my treatment time per day has been around 4-5 hours a day. 5 Nebulizers,2 physio sessions, 3 x IV antibiotics infusions, 25 pills, exercise, supplements all to be done each and every day.
It is an illness where it isn't obvious to the eye (unlike things such as cancer or if you are in a wheel chair etc) maybe thats why it sometimes goes unnoticed with fundraising. But its an illness which you are delt with at birth, and from day 1 the treatment regime starts. There is no cure and you work just to keep yourself as well as the previous year.
I had all the tests for a double lung transplant in Feb this year. However I have managed to get my health back on track and hope to put it off for as long as safely possible. Currently I am as well as I have been since 1999, so lucky I didnt get the transplant just yet.
This also impacts greatly on everyday life such as maintaining a job, getting through uni, relationships, travelling etc. So the disease doesnt really finish with just feeling unwell, it impacts on other areas of your life too.
But I treat it as an inconvinence. I dont live my life around CF, I just fit it into my life. I know in order to stay well and enjoy all the other great things life has to offer, I have to maintain my health as best I can.
Treatment in Melbourne is world class. We have one of the top CF physios in the world and a CF team that really works well. Doctor, dietician, physio, psychologist, OT, social worker, nurses, scientists. So I can't complain about the level of treatment.