My story

This week is Cystic Fibrosis week and I have decided that each day I will upload a new blog post related to CF. Each post is going to be a different aspect of Cystic Fibrosis. So I thought my first post will be my own story with CF.

When I was 2 years old I was diagnosed with Cystic Fibrosis, now I don’t actually remember anything because I was too young, so I don’t know any different in life – it’s all I’ve ever known. My earliest memory is having to travel to hospital with my parents for a check up at City hospital. (this was before they moved the cf clinic to the children’s hospital in Birmingham) it felt like every week we were at the hospital seeing the doctors, but I suppose when you’re young it’s going to feel like that?

Since being diagnosed with CF, my family have always done their bit when it comes to fundraising, from the moment they found out I was diagnosed they have planned all kinds of events. One event that completely blew up was when my uncles all done a full monty at our local social club. Everyone still talks about it to this day and it will be 21 years since it happened on 17th June. I cannot thank my family enough for all participating and helping raise as much money as possible.

The reality of growing up with CF is hard, this is purely because you’re surrounded by people who don’t have a clue what’s going on. I am so thankful my parents and family members have always just kept me living a normal life. Everyone has always been so supportive and helped me through everything. My sister is the one person who has always been able to make any situation laughable, from such a young age, all I can remember is making good memories through all of it with her. Now Amber is 2 years younger than me and has had to grow up with my illness, she has seen me through so many bad times and has had to deal with myself getting a little more attention than her. Growing up, Amber has had her fair share of Cf situations, while I was staying in hospital one time they also made her attend the school at the hospital with me (we didn’t really learn much, just drew pictures) but we still joke about it all and how amazing the toy cupboard was!!! My favourite experience so far is when I last stayed in hospital (2019) – I refused to stay alone, and Amber got time off work to stay everyday by my side (she slept on a small chair) and we must have been known as the jokers as we just use to laugh 24/7 and without her by my side the whole time I would have been a nervous wreck.

These pictures below are what it’s like when you’re young and staying in hospital over Christmas, thankfully I was able to come home and enjoy Christmas with my family. But beforehand we got asked to be the face of the hospital magazine, in the picture you can see myself, my sister and my mom. We hadn’t showered (because they were awful!) had no sleep (because who really sleeps when you’re in a hospital) but we are enjoying ourselves as much as possible. We also got to see Santa (in my arm I have my IV’S in) my parents made sure we had the best Christmas ever and I wouldn’t change it.

(Amber is probably going to kill me for posting these pictures)

A little more insight to my hospital experience, when I was younger all us CF patients were aloud to mix. This was before they knew anything about cross infections. However my dad was doing all his research and kept finding out people were becoming sick at CF events, so I was never aloud to see any other patients. I was put into the only room on the ward, I’m so thankful for this as it meant my mom was able to stay with me over night. I am also the worst person when it comes to hospital food and I can still remember to this day, the lady bringing the food round on a trolley and it was disgusting!! Me and my mom use to sneak off to the hospital canteen and just eat toast, also chips and gravy everyday.

From what I can remember, I was only in hospital at a time for like 2 weeks because my mom got trained on how to do all my medications. This meant I was able to be in my own home and not have to worry about the nurses coming into the rooms every hour. Thankfully I didn’t have to stay in hospital too many times while growing up.

I thought I would briefly mention what it’s like when you’re at school, no one has a clue what’s going on. Kids aren’t aware of any of this (well they certainly wasn’t when I was at school). I wish that primary schools covered what CF was purely because when you’re ill, no one had a clue and just looked at you differently. I hated school more than anything because everyone judged me regardless. I can’t even think of any positives when it comes to primary school, I was thankful to go to secondary school and start fresh.

Throughout the start of secondary school I still struggled when it comes to accepting my CF, I use to make sure everyday when I felt sick to still attend school. However, there were times where I would be sent home half way through the day for not feeling too good and half the teachers didn’t even know I had CF so this was a struggle sometimes as I would have to text my mom to ring up and demand I get sent home. Again, I didn’t really talk about my CF to anyone other then my friends, who still didn’t ever understand what I would be going through. I remember always missing science as this was when my hospital appointments would fall, by this point I was moved to the children’s hospital. Going through secondary school was hard, there are always rude people who make comments on the way you look etc, and teenagers are in their own little bubble and don’t understand people can be struggling. I can still remember in science when the teacher started to teach the class about CF and everyone turned to look at me, I wanted the world to swallow me up right there (however I got full marks on that part in my exam!) I do believe living with a hidden disability at school is so hard, and I hope schools are starting to go about all this differently as its been the worst part in my experience.

When I moved into college It was personally the best step for me, my course (textiles and fashion) was filled with people who were passionate about the same thing and everyone was so lovely. I started to learn to accept myself and not hide my disability anymore and this was because I decided to make my final project all highlight on Cystic Fibrosis. I wanted to incorporate my medications and my lung X-rays into a piece of art and show that I’m proud of what my body achieves everyday. I spent so long on this course work as I wanted to finally portray my true identity and this is where I started to realise, why hide my CF?

Throughout college and after, I have took part in more charity events for CF and done my best to raise awareness. I feel like I started to truly get invested in wanting to do more! So myself and my dad decided we would take part in an event where we had to climb 658 steps, to some people this doesn’t seem like a lot. But when you get out of breathe daily just walking up your flight of stairs at home, this soon becomes a huge struggle. Having my dad with me just meant I was more motivated because I didn’t want to let him down. Of course we smashed it and managed to raise loads of money for the charity in doing so.

My most favourite memory (which you should all know if you follow me on social media) has to be that my auntie Clare nominated me to go on Surprise Surprise, this was the scariest but most amazing experience of my life. Being interviewed by Holly willoughby about my CF on tv had to be the most surreal moment in my life. Then to have the surprise of my idols (The Wanted) singing to me and being able to spend so much time with them after the show is something I will never forget.

This post has gone on forever, so I’m going to end it here. I have more lined up for the rest of the week about all different parts to CF, but I thought it was important to share more about my life so you could just understand a little bit behind my story before I go into detail about a few different areas of CF.

Friday the 19th of June is wear something yellow for CF day, to participate all you need to do is take a selfie in your best yellow outfit and post it to social media with the hashtag #CFyelfie, and text YELLOW to 70500 to give £5 to support the charity. I would love to see your posts, so feel free to tag me in these and I can share them on my Instagram stories.

I will continue to leave the Cystic Fibrosis link below in case you would like any more information.

Girl With The Long hair x

https://www.cysticfibrosis.org.uk/

One Comment

  1. I absolutely loved reading this Demi! What an insight into your life with CF! Those days of sitting in hospital beds is something I still remember, I used to have the teacher on the ward bring me work to do and I was the only patient to do it! I can’t to see what else you’re going to write for CF Week lovely! xx

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