Keeping my life balanced while living with Cystic Fibrosis

Sometimes it’s okay if the only thing you did today was breathe!

Life can be hard sometimes, but growing up with a hidden disability can be even harder. There are so many negatives around living with Cystic Fibrosis and I want to try and show people out there that it can be made a positive in your life.  I have spent majority of my years keeping my illness to myself and the older I’ve gotten the more I’ve regretted my decisions about not shouting it from the roof tops.

I am now 23 years old and I’ve finally accepted myself for who I am. I have been embarrassed throughout my life for having Cystic Fibrosis and I really wish I had seen more positive posts about CF to stop me from being ashamed of who I truly am. While growing up with the hidden disability, social media wasn’t as prominent back then (through school) as it is today. I couldn’t truly understand certain things that were happening to my body and no one else around me knew the answers as my friends were oblivious to this as well. I remember every morning having to wake up an extra half an hour earlier than my sister so I could complete my morning physio before school. However, when you start to get older (age 15/16) you want to start being more independent and stay over at your friends and go places for the day – much like “normal” teenagers do. Now my parents always tried to allow me to have my freedom and enjoy my life but there are boundaries when living with CF. I never wanted to be known for being the “sick girl” so before hanging out with my friends I would sit and do treatments and take my tablets at home and then make sure I have my survival kit as I call it (back up medications and inhalers) just in case anything happened to me while I was out. It was like I grew up living two completely different lives.

Now fast forward a few years…….

I have finally come to terms with my Cystic Fibrosis; it’s not going anywhere and it’s here with me for the rest of my life. So I’m embracing my condition and trying to help younger people living with CF and also family/friends who are affected by this to see that there is light at the end of the tunnel. It’s all about balancing your life around the condition.

Now my biggest struggle was treatment! Having to do 2 lots of physio, nebulisers and exercise to help keep your lungs clear everyday is draining mentally and physically. When you’re young all you want to do is play, go out, be a lazy teenager and stay in bed, so what I found that my parents helped me with was to make it as much fun as possible. I would always be allowed to pick what’s on tv while I do my treatment as it meant I was focusing on the show and not noticing the 30 minutes of physio first thing in the morning. My younger sister would always try and copy me and pretend she was doing her physio as well, so it meant I didn’t feel isolated in my family. As I’ve gotten older, I’ve just accepted that I need to wake up half an hour earlier before work to complete my treatments. I think of it as just like brushing my teeth every morning and evening, it has to be done and you can’t start your day or end it until its out the way.

Since posting about Cystic Fibrosis on my social media pages I have had a huge response off many people living with the condition and also friends and family of someone they know living with CF. This has really opened my eyes to what positives I can make out of this. I posted a video of myself doing my nebuliser with the Harry Potter theme song in the background pretending to be the Hogwarts Express and a lovely mother of someone who has a daughter with CF who had lost interest in doing her treatment and was struggling, she showed her the video of myself and that then encouraged her little girl to start doing her treatment to music. It’s the smallest thing I can do, but that helped someone and took the frustration off the mother as well. I have since started posting my daily treatments and what medications I take more on my Instagram pages to carry on encouraging people who have a hidden disability to not be afraid of showing it off. I never thought I would ever have the confidence to post about my condition let alone post pictures and videos, but since doing so I have felt amazing about myself that I’m showing so many people the struggles we have to go through on a daily basis.

I live a crazy life, as most of us do. I live with my partner and our puppy so I don’t have my parents to remind me to take my tablets or shout up the stairs to remind me to do my evening nebs anymore. It’s all down to myself to be independent and keep myself going. I wake up at 4am for work and I work over 40 hours a week and have to force myself on days when I just feel exhausted to carry on and get my treatment done, because I’ve realised how important it all is the older I’ve got. There are so many more people worse off than me, so I’m not going to risk my health by not following my treatment plan given by the doctors. I also know how my body responds if I skip a treatment, I then have to work 10 times harder on the next round. It’s all in our heads, we need to just think to ourselves that in 30 minutes time its finished and out the way and then we can treat ourselves after for smashing that round of phsyio. I don’t look at anything as a negative anymore, I’m proud of what my body has achieved everyday and thats what keeps me postive about it all.

The purpose of this post is to show you the struggles I have had throughout my life and to try and prove to you all that It does get better. Every situation is different and I wish years ago I had realised how important it is to talk about your illness and just own it. Make friends online with other people with CF because we are all in this together and we all need support off each other every so often. I am confident that one day we will have a cure for Cystic Fibrosis. Until then, I will keep posting on my social media everything about my condition to raise awareness and support those effected by this condition.

Girl With The Long hair x

I have left the CF trust website below in case anyone wants anymore details, or would like to donate.

https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis

 

3 Comments

  1. I LOVED reading this Demi! Everything you’ve written about growing up with CF resonated so much with me, like you, I used to be embarrassed about talking about and telling people about CF as I didn’t want them to look at me differently! Such a relatable post Demi! xx

    Lucy | http://www.lucymary.co.uk

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