How powerful is my voice? Something I question from time to time.
Looking back to when I started my CF Mummy page, I didn’t know what I wanted to do with it except share my experience on being pregnant with CF and then my journey into motherhood.
How hard could that be? With so many influential social media people out there, I wanted to have the opportunity to put my two cents worth in.
Well as my journey into motherhood began, so did post natal depression, CF anxiety and an overwhelming amount of emotions and an incredible fear. The opinion of others mattered to me, especially when I received negative comments. Something i’ve learnt you need to be prepared to read when you put yourself out to the world.
Becoming a Mother or a Father – you loose a piece of the old you and gain this new found person, yet as you try to learn this new you, you learn you are also a parent, doing everything for the first time with no guide. Everyone has advice yet every baby is different, so it can be hard to know what is right. I continue to learn that we are all just trying to do the best we can for if not ourselves, our babies.
Over the years I have grown my online family and I am grateful for those who often connect with me, in recent weeks I have been reminded again why I decided to be CF Mummy.
I want to be a voice, by sharing my story to raise the awareness of Cystic Fibrosis, I want to share my achievements to encourage others that CF IS NOT A REASON TO FAIL. I am one of many CF people who are living life to the fullest – Yes its hard work but I know no different. In recent weeks as I scroll through my feeds I have seen more heartache than happiness – more hospitalisations, treatment in progress pictures, and as a person with CF, it can hit home pretty hard. This is why I am making it my mission to show the extraordinary part of living with CF – yes, their are days when the couch is my best friend or my nebuliser seems like it is attached to my hip and my morning cocktail of pills seem to much to swallow. Despite this being a big part of my life, it is definitely not everything and it definitely does not limit me from achieving what may seem unachievable. So if I can create opportunities and share my experiences with the world, I hope that it will also speak a language to all, not only those who have Cystic Fibrosis.
I want to be a platform for everyone to see that anything truly is possible and that we all have hurdles in our life; some hurdles takes a little more to overcome but you will always overcome them, coming off stronger and better prepared for the next.
As I write about something that seems so common in the CF world yet never spoken about, I wanted to just touch on it briefly: it is never easy to read about someone who passes away especially when they are of such a young age. I often hear the statistics read out about the “average life expectancy” for a CF person is approximately 37 years old – give or take a few years either side. This has never sat right with me. It never will. What is an appropriate age to die? Having CF means at times, I walk on eggshells, to avoid certain things and by taking extra precautions I don’t catch that cold or by doing my nebulisers daily my airways will stay open. It doesn’t always work, infections do happen, but in a way I feel lucky to have a label “Cystic Fibrosis”.
For someone who doesn’t have CF or any illness – do they live carefree? I often wonder if I didn’t have CF what sort of lifestyle I would have? Would it be different at all?
I think having CF allows me to be cautious in ways that others wouldn’t be in their own lives. If you knew you had a life threatening illness how would this change the way you lived?
When I was younger I spent a lot of time in hospital, not by choice obviously. My parents tell me of their memories and when I put them together with my memories, I look back and feel like I led a double life because I did live a life where it wasn’t all CF.
My parents were determined to not let CF define who I am yet instead, CF became more of an interruption to our family life, being compliant with daily treatment to stay “healthy” was apart of our everyday, yet it wasn’t the entire day.
My parents still had to work, they had my younger brother and sister to also look after and let them live their lives. My Dad being a paraplegic with no kidneys – well he has had his fair share of “health scares” since I was young. But never once was I treated any different because I had CF.
I played every sport – despite my parents efforts in encouraging me to try everything once, sport was not my “thing”.
I went on school camps – which yes, this meant I was away from home for a few nights, in charge of my own treatment, I remember I would take my nebuliser and would make sure I took my pancreas with my foods. From an early age I was taught to be independent with my treatment.
I never missed out on parties, from kindergarten age right through to the high school “gatherings” and if your my age (30) at a high school gathering, let’s just say that when the time comes, I will be the parent that has the “gatherings” at our place.
Into my late teens early twenties, I went out clubbing until all hours of the night, even much to Mum’s horror, with my intravenous needle in, hiding my baxter bottle in my purse so I could have a dance.
I never let CF stop me from living my life, but as I grow older I have learnt that I need to be compliant and consistent in order to live a “healthy” life. It is a full time job.
Being consistent in medications and treatment doesn’t stop infections, so at times I get a speed hump in the road, it may knock me out for a good 6-8 weeks but that is part of CF.
So if you’re connected with CF somehow, whether you’re a parent with a child with CF or someone who has CF or even a friend of someone with CF – you will learn over time that CF becomes apart of YOU, it doesn’t make you who you are and it definitely adds character.
You find strength where you didn’t know it existed, because CF will TEST YOU. You find hope in places you never would have looked before and you learn that life is just that bit more precious.
So if your feeling scared, don’t be – CF gives us a diagnosis for what can potentially go wrong, we are the lucky ones having knowledge that “shit” can happen but are able to fight our battle going in with the heads up. The unlucky ones are those who are suddenly diagnosed with an illness and don’t know how to deal with it before it’s too late.
So I just want to say THANK YOU to those who follow me, who are inspired and encouraged by the way I do life. Because of the many connections I continue to make, I am encouraged to continue to live an extra-ordinary life to help make my mark in raising awareness for CF. I know that as the years go on treatment is getting better, I pray everyday that Orkambi will become available to us Aussies, which will give us the time we need until the Cure is found which I am confident is just around the corner.