The life of a girl living with CF.

For those of you who don’t know who I am and it just so happens that you’ve stumbled across my page, welcome to my life! I’m Naomi otherwise known as Noni, pronounced no-knee (but I can confirm I do have both knees). This has been my nickname for as long as I can remember. It stemmed back when my older sister Georgia couldn’t say my name when she was younger, and since then it’s just stuck. This also became Noni-macaroni for a while. Although, I thought the whole reason for a nickname is to shorten your actual name. So Noni-macaroni didn’t stick around for long. Can you imagine me on my first day at school when a teacher asked my name and that was my response?! I find 99.9% of people are never going to pronounce my name correctly whether it’s Naomi or Noni so I’m used to that now.

I’m currently twenty-four years young, I don’t like to think I’m old just yet (although this depends on when you’re reading this as I could now be forty-five). However, the years since leaving secondary school have flown by much quicker than they did when I was in school. Can you believe I left school nine years ago? I’d like to think that I’ll still be here when I’m forty-five, as the life expectancy among people with Cystic Fibrosis is slowly increasing.

I come from an immense sized family with so many relatives I’ve lost count of them. However, there’s a few key people I’d like to tell you about as their names will pop up on this blog more than once.

My Mum: Hayley. Mum has been my best friend since she brought me into this world. Mum knows absolutely EVERYTHING about my life including all of my secrets, fears and dreams. Mum has held my hand through everything, including whilst she sang What I’ve Been Looking For (from High School Musical) as I drifted off to sleep during a general anaesthetic. She could probably write this blog for me. She is the best person on this earth.

My Dad: Shaun. Dad is the leader of the family and the one who kept all of us girls sane when growing up. Although, I’m sure he may say we drove him insane! He’s the one who helps out with all of the sensible, real-life stuff that we have no idea about. Dad is also the one who I get my music knowledge from and he educated me on his all-time favourite musical hero: Prince. I used to think we were cool, driving along listening to 1999 or Raspberry Beret while my friends questioned “what is this?”. Because of this, Dad can understand and relate to why I love Tinie Tempah and his music so much, as he was/is the same with Prince. I know Dad is always there to chat and give me advice too.

My beautiful sisters: Abbi (Abbs) & Georgia (George). 

Abbs is the oldest of the three of us and she is the sister I’d describe as the carer. Not only because she is a Nurse, so can do any hospital bits like if I ever need bloods, but she is the person who understands all of your problems and a hug from her makes them go away. I know I’d only have to drop her a text and she’d be at my side in a flash. She is someone who wears her heart on her sleeve, which some people take advantage of and use her kindness to benefit them. However, she is such a lovely person and respects herself too much to see the bad in others. Love you Abbs.

George and I are basically the same person (well not really but you know what I mean). She is the one person who shares my ridiculous, childish sense of humour. We could literally be in fits of giggles over the smallest thing, but to us it’s hilarious. I remember once after a night out clubbing at 4:30am, we filmed ourselves making a noise like Wheezy the penguin from Toy Story and then couldn’t stop laughing for hours. What a way to make a positive out of your wheezy CF chest eh? I still have the video evidence now and watch it whenever I’m feeling down. The fun thing about our relationship/friendship/sistership is that we can spend a night in the living room singing songs in funny voices and have the best evening, yet we haven’t had to spend a penny. We share a sister-bond like no other, so much so that people have told us that they wish they shared that with their sister or that they wish they had a sister. Love you G.

My Gran: Denyse. Gran is a legend and again is someone who could probably write this blog for me. If you looked up Gran in the dictionary, I’m telling you, there should be a photograph of her there as she is how I believe every Gran should be. If we were ever naughty as teenagers and Mum would complain to Gran, her response would be “girls just wanna have fun” or she’d laugh as she already knew what we’d been getting up to. She is the one person, no matter how old I get, I will always look up to.

Sian: The brightest star in the sky. Sian is my cousin who sadly passed away in 2006 at just eleven years old, thanks to the f***er we call Cystic Fibrosis. Although I didn’t see Sian much due to cross-infection and her living in Cornwall, I’ve heard every story about her from Gran and I know she is watching down on me kicking CF’s butt. Every year, without fail, on Sian’s birthday and the anniversary of her passing away, I let off a balloon into the sky, so it can reach her up in heaven. Recently, Gran sent me a text to say she had found a very rare photograph of Sian and I together, the only photo in fact! So, when I went to see Gran in April, we dug it out of the album and I took a photo of it on my phone. In the photo we are both eating a packet of crisps but the story behind this is that we had probably just taken our Creon beforehand, Sian with some baby food and me with a yogurt! That photo is now framed in my living room and it makes me smile every day.

Bertie Bleu: The only man I'll ever need. 

Bertie is my french bulldog who I brought home in October 2020. He was the missing piece that has helped me to completely let go of my past and move forward on this crazy journey we call life. He is the best-looking pup around and is the world's loudest snorer, but I love him.