Cystic Fibrosis. Lungs, coughing, life limiting condition are a few words that I am sure instantly come to mind when the majority of people think about this invisible disease. Whilst you aren’t incorrect, have you ever stopped to think about what life looks like for those living with the condition? The fact that it affects so much more than the lungs. The way a person digests food, their fertility and utter fatigue are some of the less talked about symptoms.
Emmah Money refuses to allow Cystic Fibrosis define her as a person. Sure, CF is part of her story but it is not who she is. Emmah is an accomplished author, empowerment speaker, mother, friend oh and did I mention 2020 Australian of the Year?
Emmah has graciously agreed to feature this week in Mummy Matcher and I hope you find her as inspiring as I do!
How old are your babies and what is one thing you love about each of them?
Ayvah has just turned 7 and Logan is almost 5. I am so blessed as both my children are so strong, resilient and bubbly. They are happy little vegemites so to speak.
Ayvah is very determined and caring, she isn’t afraid to say what she thinks or feels, I love this about her. I feel like her Dad and I have set a good foundation as confidence is so important, especially in girls.
Logie, my little babe, he is a lover, he is going to break hearts one day. He is so kind and caring and I just adore him for this. He is also not very shy and does not stop talking, just like me. LOL.
What is something about being a Mum that drives you bonkers?
You have cystic fibrosis (CF); most people have a general idea what CF is however can you share a little with us about what CF is like for you?
Cystic Fibrosis for me is definitely part of who I am, not who I am. Having children has taught me so much already on how I manage my illness. I often hear people say I want to be normal, well I say, define normal? What even is that? The reason being, we are all different and no one knows what goes on behind closed doors.
Normal for my kids and I is that every day I have to do inhaled antibiotics on the nebuliser. This can take up to 45 minutes so amongst making breaky and doing lunches I am also doing my treatment. I then have to do physiotherapy to help break up the mucus in my chest, as CF people have thick, sticky mucus and this is what causes breathing issues and ongoing infections. I also try to ‘normalise’ my treatment, in doing so, I go to the gym a few times a week and try and get out for a walk at least once a day. This is a great way to really get my blood moving and of course, cough out any phlegm. Gross!
Every time I eat food, I have to take pancreatic enzymes, this is because my body does not create enough on its own and therefore my food won’t digest. So I have up to 40 of these tablets a day. If I don’t have them, I am left with excruciating stomach aches.
I also take a cocktail of tablets in the morning and night which is made up of different vitamins and antibiotics, this is just to “maintain” my health.
CF is an invisible illness, this can be challenging in some ways because some days, I just need to rest. I don’t look sick, but I have no energy and a day on the couch is exactly what I need. For no other reason that I am just tired. Lethargy comes along when I least expect it and this can be hard, especially when the kids are running amuck. Thankfully as they are getting older they are understanding more.
For the past year, I have been on a new drug that has been life changing for my health.
I am able to do things that I never imagined as I have the energy and feel well. It is by far not a cure for me, however it has definitely helped me maintain my health better and I have found that I haven’t “deteriorated quickly” when unwell.
When I am unwell, I have to undergo 2 weeks of intravenous antibiotics, which means hospitalisation. This is not a nice time. I lose my appetite, I have a needle attached to me 24/7 as well as the drugs, which also make me feel crappy. I am also very lucky to have such a great family and friends support around me..
You were adopted when you were three months old. Your parents are amazingly unique in their own rights.
Your Dad is an Olympic Champion who has his own health struggles, including no kidneys and one hip!
Do you think being raised by someone who has faced such adversity but has obviously not let it stop him has helped to shape your determined personality?
My Dad is truly an amazing person. It was only in the past few weeks that life decided to test him yet again. Dad was involved in a car accident which caused him to break his only leg, due to the severity and complications, Dad had to make the hard decision to have this leg amputated. The strength and resilience I have seen in him in the recent weeks, let alone over the years, will never cease to amaze me. I have watched his heartache and sadness, and given his current circumstances, it will be a long road. And not an easy one.
This decision came with “consequences” but he made the choice as it was the right one for him. Dad is forever teaching us lessons without even realising, as is my Mum.
They are two incredibly strong people who have been faced with some unbelievably hard life choices, yet this does not stop them from persisting and moving forward. I have learnt that we cannot be afraid of the unknown. Fear is exactly that, fearful. It causes worry and angst, yet when you break it down, the fear can be reduced as we work out what is in our control and focus on that. You can’t not have control over things that are beyond your control.
It is like laying in bed awake at 1am thinking of what you need from the food shops and realistically, does it matter at 1am? No, because you can’t go to the shops at that time.
It is the small things like this.
Dad has also shown me that through hardships, we are allowed to crumble and hit rock bottom, we can ask for help and we can admit to not being okay. What is inspiring, is not only admitting that, but then watching the rise up after. Seeing how to get out of those situations and be positive moving forward. I find it so courageous to watch the journey of transformation.
It’s almost like a caterpillar turning into a butterfly.
Historically, people with CF have much shorter life expectancy with the average age of death being 37.
You have started a “wonder” drug which you had to fight VERY hard to have subsidised and get from America.
When we spoke you said the drug literally changed your life and you woke up one morning and thought “wow, I’m not going to die”.
Did this impact on the way you have lived your life before you started taking the drug to now?
I remember when enrolling my daughter into primary school, she went to the one I went to as a child which is close to my family home. I remember thinking if god forbid I passed away at least she would be close to my parents house if help was needed.
That makes me feel sick in the stomach to think that now. No parent wants to leave their child. Nor even have to think like that. Sadly a mentality I began to have as my babies started to get older and I felt like i was just not getting better.
I had no energy, I coughed a lot, my body felt almost gaunt and lifeless to an extent.
I hid this very well amongst many other things. In particular may worry that I would not be here to see my children grow up.
I have always worked hard in doing treatment morning, afternoon and evening; I need to be consistent and compliant to help maintain my health but with CF sometimes this is not enough.
After a 3 year battle with the government the entire CF community were over the moon when this new drug became available throughout the PBS Scheme, something that would have cost over $200K now is only $6 a script.
This drug has saved my life. It is far from a cure, but what it has done is help me to remain stable and I find that now when I get a cold, it is easier for me to fight the cold. Normally, a simple cold can be deadly for someone with cystic fibrosis. However, I have since had small bugs and viruses that only seem to last a few days as my body is able to fight the infections.
I have also managed to maintain my weight, something I also struggle with.
I am finding things I used to do in a week, I can now do in a day.
I don’t feel like I am in a rush anymore to get through my to do list and I can simply enjoy my days with the kids without feeling the need to “fit everything in.”
These improved medications have meant that I am confident in planning my future and I feel confident knowing that whilst it is not a cure, they will help me to remain stable (as long as I continue with being compliant with my daily treatments) until the cure is found.
I also have a new love for exercise and go to the gym twice a week as well as walking most days. This has been something I would never be able to do due to lack of energy. But has been a life saver.
I have also just been accepted into university, which I am so excited because as I remember always thinking, there was no point in uni as I missed a lot of schooling due to hospitalisation and then as I got older I felt I wanted to just live life because I never knew if CF would “get me.”
Well… hasn’t that just changed.
Apart from the fact that individuals with CF can struggle to conceive, were you scared to have children knowing there is the possibility that the common cold has the potential to kill you?
This is an easy answer. Having grown up with my Dad, who is literally a time-bomb yet a cockroach, I have never seriously thought about CF being a reason for me not to be a mother.
I have grown up in a family where disability does not define who you are and it most definitely should not be the reason for failure. There has only been a few times in the 7 years of my children’s life where I have been really scared, but I can’t live my life like that.
I think we are all going to pass away at some stage so I see having CF as almost a “good reason” to work harder on my health. I have seen people die from other illnesses that have been sudden diagnosis or even those who have been in accidents, completely irrelevant to CF.
My attitude is not that CF will kill me. I will continue to fight this illness and even more so now for my children.
Your list of achievements is remarkable.
This year you were crowned the
2020 Australian of the Year.
In a podcast you titled it, “the year that made me”, why?
If you had asked me a year ago, even 5 years ago where I thought I would be in 2020, little would I have expected to be here.
I have recently gone through a separation and have learned to co-parent and become good friends with my ex-husband. Something I never envisioned.
I feel like since starting the new drugs, it has allowed me to “stop” (and no this is not COVID-19 type of stopping) But I was able to stop and see that I had always rushed things in life, I am a go getter and felt I needed to rush everything so that I wouldn’t miss out.
Sadly this also came with consequences. I have had to slow down and really assess what is important to me and my family.
2020 Australian of the Year, SA Local hero -an award that I have been so humbled to be recognised for the work I do.
I started CF Mummy to show others that motherhood is possible. When I realised that Motherhood is relatable to many, not just those with CF, my audience grew.
I am real and raw with a lot of mystery still, but I have learnt that I tend to go where many others go yet are afraid to speak about it. Motherhood and having CF is not always glamorous, but I have made it my mission to show others that despite having CF and the daily demands, I am still a good mother and the ultimate boss babe. Making my dreams come true through hard work and determination.
Do you want to flick the next person in the forehead who tells you in order to look after yourself better you simply need to eat healthier and go for a walk?
We know this, but sometimes our life circumstances simply don't allow for this. Hell going for a walk and actually eating something that resembled a home cooked meal would be on par with winning the lotto in your present circumstances.
That's why I developed this e-book that is ready for you to download right now!
10 Self Care Strategies you can implement right now e-book.
To the Mum reading this who has a chronic/terminal health condition and is struggling, what would you say to her?
It is okay to have bad days, we all do. What is important is that you do not let your illness define you or who you are. Take the time to rest and recover, because if you are not 100% you will not be able to perform in whatever it is you do.
There is too much stigma around disability being a reason to fail, I think we need to prove this wrong, it is not a reason to fail. It is a hurdle that makes us stronger than many and we need to embrace this.
I also think it is important to set goals, dream big and work out a pathway to get there.
Remember it won’t happen overnight, so be consistent and work hard.
Motherhood is the most important job in the world. Your children look up to you, they hear you, they see you and they feel you. Remember that to them you are the world.
Do you find connecting with other Mum’s/people in general who have CF and other life limiting conditions helpful?
This is so important as often it is hard to connect with others who have fears and worries, especially the type that we don’t want to talk about because it means admitting something.
For me, I think admitting the negatives about my illness has brought it to surface that there is some truth in situations about my health that I would prefer to keep under the rug, but reality is sometimes it’s better to talk about things with those who are also going through similar situations. It can definitely help eliminate the worries.
It is also good to be positive for one another and acknowledge the “wins” we have.
Like some days a win for me is when I got out of bed, did my morning treatments and still managed to get the kids dressed, fed and off to school and kindy.
Do you struggle in your role as a motivational speaker when some days life must be pretty bloody tough?
I have learnt very quickly to become resilient in life. I have so many chapters that I can talk about and share the positives as well as the negatives. So when speaking to others, I love to empower people to be the best, but I think it is also good to share when you do have those tough days because we are only human and without the tough days we wouldn’t have the good.
Motivational speaking shouldn’t always be “positive and uplifting” the whole way through, because as I said, it is through those hard times, heartaches and all the inbetweens that I have learnt many lessons. I love the quote “life is like a box of chocolates because you never know what you’re going to get” this is so true. My life is crazy and I know that from all the different angles, I can share just a snippet that will inspire others and if I can help one person each time feel better or motivated or even just leave them feeling somewhat inspired, that is the greatest feeling.
A little more about Emmah
I am passionate in being an advocate for Cystic Fibrosis, I feel this is more so now than ever as times have changed since I was a child, yet there is so much fear instilled about living with a chronic lung disease.
I like to push the boundaries and prove that anything is possible.
Want to learn more about Emmah and her LONG list of achievements, as well as how you can work with her?
Head to her website: https://www.emmahmoney.com/
She is also on Instagram: https://www.instagram.com/cfmummy/
So how EXACTLY does the
Mummy Matcher Service help you?
What You Gain
Talk to other Mum’s in similar situations while you’re at home, sitting in the waiting room for appointments, in hospital or even in the car!
Have a conversation with someone who you don’t have to explain the little things to because they already GET IT.
Be part of a community of women who have also faced adversity and like you, are seeking connection.
What You Reduce
No longer be alone during your journey on this daunting, unexpected and what can at times be a scary as hell road.
No longer feel like you are the only person in the world who’s motherhood journey isn’t turning out how you thought it would.
Find women you can actually connect with. Women you can nurture and build a real friendship with.