Lucy and the 65 Roses EP

Diagnosis

I was about three days old when I was diagnosed. My mum couldn’t get me to feed because my stomach was extended and the doctors couldn’t seem to figure it out so they had to ask for a specialist to check me over. After doing a few tests and finding out I was seriously ill, they sent me straight away to the nearest neo natal ward. I was diagnosed shortly after.

It was shocking to my parents because no one else in the family had cystic fibrosis so they had no idea what it was. I was in hospital for six months having operation after operation, and it seemed like it was never going to end until I was finally discharged. On top of having CF, I was premature so my mum wasn’t able to hold me for months which I can't imagine was easy for her. I was also given a 50-50 chance of living so if it wasn’t for the team at the Sheffield Childrens Hospital, I would not be here today to tell the story. 

Growing up with CF

Taking my medications and nebulisers was just routine for me, but for someone on the outside it must have seemed like quite a lot to take on. I still take 20-30 tablets a day, so growing up it was quite a lot on top of managing all the aspects of being a young person.

There's a lot of people who don’t realise how intensive and time-consuming CF can be. It felt quite lonely at times because I’d see all my friends and the things they can do physically and socially, and it does make you feel isolated. People don’t realise that CF can affect everything and not just your lungs, so there are days where I’m really unwell and don’t look it, but I have to just keep powering through like a warrior.

Kaftrio

I’ve been on Kaftrio since I was first eligible, and it’s been a lifesaver for me. I’ve been able to live better and not worry so much when I feel terrible. I feel better within myself, and my lung function and health are better. I wish that everyone could have access to it. It’s obviously not a cure and that life expectancy is still there but if it means I can live a few more years longer, then that is lifechanging for me.

Juggling work and CF

I’ve recently graduated from university, so trying to manage medications and physio while also trying to focus on your social life and your work is really hard – you can’t do them both at the same time. I think at times I was just about managing, but it did affect my mental health. I was quite unwell in university and last year I was admitted to hospital for IVs which was a real wake up call. I realised I really needed to focus on my health, and I put a lot more thought and energy into making sure I was taking time for myself.

I’ve graduated this July and I now work as a teaching assistant at a school. I think managing a work-life balance is also hard when you have CF, but I learnt a lot of hard lessons about creating a routine for myself from university. There’s always going to be obstacles in the way, but no one said life would be easy!

65 Roses EP

The 65 Roses EP is an album I’ve written all about my personal life with cystic fibrosis. I always knew it would be called the 65 Roses EP because that was what my parents used to teach me how to say ‘cystic fibrosis’, so it’s always something I’ve thought about. It’s my first EP and I wanted it to be really meaningful and personal and so it felt right to write a whole EP about how my CF affects me.

The main thing I want to do with this EP is to raise awareness of cystic fibrosis and hidden disabilities and how they can affect your mental health. I don’t think it’s spoken about enough in terms of how CF can affect your mental health. Sometimes I feel like such a burden, and I think I just want to open up a conversation about all of that.

A lot of the songs are really sad but there are some upbeat ones. There are songs about finding love as someone who has CF, a song based on an experience I had with my dad when I was hopsitalised, songs about mental health, physical health, and many more.

Music is my escape from everything I go through with my CF so it’s a big thing for me to be releasing this EP. I was also really inspired by Claire Wineland who was a CF activist in the US. I used to watch her videos and feel so inspired by how she tried to support families and people with CF and I hope my music has the same impact. I know Claire used to love to sing too so it feels like I’m bringing Claire with me in my music which is a really nice feeling.

The launch event

My launch event is happening on the 3^rd of November at the Old Bus Depot in Nottingham. It’s the same day the EP goes live and it’s very exciting. We’re going to be raising money for Cystic Fibrosis Trust on the night.

I’ve got two amazing support acts, Davina Songbird, and EM, who are also such amazing friends and supporters of me and my CF, so it feels incredible to have them be part of this process. It’s my first headliner gig so I’m extremely nervous but also really excited!

Advice for someone growing up with CF

Just try not to care about what people think of you because you are amazing and there are so many people that love you. There will always be people who don’t respect you because of your disability but I like to think it will change one day. For now, just be you, keep making memories and living life to the full, and just enjoy the present.

A lot of the songs on my EP are about mental health and I feel like we don’t talk about it enough, but I would say to anyone who is struggling to just say something and talk to someone no matter how hard it can be. I know I felt so much better by just telling someone I was struggling.

Hopes for the future

I’d love to perform at Glastonbury! I think it would be incredible to perform for a crowd that large and have people singing my lyrics back to me.

In the short term I’d like to keep performing and I’d love to have people come along and join the ride. The 65 Roses EP is only just the beginning and who knows what’s to come!

Lucy’s EP, 65 Roses, is out on Friday 3 November on all streaming platforms. You can presave the EP here: distrokid.com/hyperfollow/lucycrisp/65-roses

The launch event is at the Nottingham Old Bus Depot on Friday 3 November, tickets can be purchased here: gigantic.com/lucy-crisp-tickets/nottingham-the-old-bus-depot/2023-11-03-20-15

You can follow Lucy on her social medias @lucycrispmusic