CF | Lily's Story

May is actually CF Awareness Month and seeing as I waffle on enough about how Cystic Fibrosis affects me (you can read a kind of round up here, I've updated it a little) I thought it'd be a good idea to feature someone else with CF on here. It's such a complex condition so it's rare that you'll find two people affected the exact same way so I hope that by reading someone else's story it'll give you some understanding of how different it can be! Lily was kind enough to write a guest post, hope you enjoy! Because it's not often I'll let a West Ham fan on here ;)



I'm Lily, I'm 27 and I live in East London. Generally I am really lucky with my CF as I am pretty healthy and it doesn't cause me too many problems...but that doesn't mean it isn't a pain in the arse! Whether it's being up all night coughing and having to go to work on 3 hours sleep, getting filthy looks when coughing on the tube or feeling like crap for weeks after getting a normal cold and knowing you will need ivs, it can screw you over! The amount of treatment you do everyday is annoying as you never get any respite from it (I particularly hate chest physio!)

A lot of people think CF is just lung related but it affects so many areas of your body (although for me and many others the lung problems are the worst and most dangerous). I can't digest fat so need to take anything between 4-15 enzyme tablets whenever I eat anything with fat in (luckily I can down them at once which saves time!). I've got gallstones, acid reflux (which led to me having 2 of my teeth capped last year as they were damaged due to the acid), low bone density and migraines which are all because of CF and/or the medication you have to take for it. As well as having some permanent chest bugs I have had MRSA and a TB like bug in my lungs which cause further damage. It is very likely I will also develop diabetes and there is a risk of liver disease and infertility. Sometimes you do feel your body is crumbling!

I was diagnosed late, just after my 7th birthday following years of stomach problems and a couple of bad chest infections which made me really ill, leaving me tiny and weighing only 2 and half stone . My mum was continually fobbed off by the GP until they agreed to refer me to Great Ormond Street where they guessed what was wrong with me in minutes. 

Without wanting to sound too dramatic I don't remember a lot of this time and the months following diagnosis, so think it was reasonably traumatising for a little kid. Suddenly I was in hospital being stuck with needles, having enzymes poured over everything I ate, lying on a physio bed twice a day while my mum banged my chest and the other fun things that CF brings. 

Things have got miles better since then and I haven't let CF stop me from living a normal life. I went to uni, moved out, went on tacky girls holidays (did get hospitalised while in kavos- the shame! but will skip past that...), have a wonderful boyfriend and currently working full time as an HR Manager. 

The last couple of years have been particularly good for me as I have managed to increase my lung function by around 20% on average (from around 45% when bad to 69% at my best) which I put down to starting a regular varied exercise routine. I do a boxing class, bootcamp and have a personal trainer once a week who really pushes me. I resisted for years but now I have started I love it, even though my lungs burn an I do feel like I am going to die at times! It really gets my lungs working and makes me feel so much clearer. Also makes me cough loads which is always good if you have CF! The difference I feel on a day to day basis is incredible and although it's tough I think it has really helped.

I try and always think positively and don't worry about things - and just try and stay as healthy as possible for as long as I can. There are loads of new treatments being researched and used which look like they could make a real difference in keeping people healthy and increasing life expectancy so there is lots to look forward to! CF is always a part of your life but it is by no means my whole life! 

A big thanks to Lily for that! I'll hopefully feature a few more people soon, in the meantime check out this excellent post by Grace which I think perfectly sums up CF. 

Josie x
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13 comments:

  1. Really enjoyed Lily's story and her bubbly personality while describing something that affects her life so much. It was interesting to read a new perspective, thanks for sharing Josie, you're doing a fab job of raising awareness :) xxx

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  2. Wow. It's so easy to live your life rather ignorant to these kinds of illnesses, when you're lucky enough to not be affected directly by it. I didn't know a thing about CF until I found your blog, and I think it's so important that people know the facts and real life issues that come with it. You and Lily, and all the other dudes suffering from this, but most definitely not letting it take over your life, deserve a giant high five. Keep doing what you're doing.

    Gemma
    Faded Windmills

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  3. I had never heard about CF until I came across your blog Josie. Actually, I do think that you and all the people out there are really strong and brave! I really admire these people so much because they fight back. And you are one of the bloggers that I really enjoy reading the posts because i can learn so many things not only about personal style, but lifestyle and "life'' itself too. I love your attitude and blog, keep doing it Josie :) xxx

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  4. Thank you for sharing Josie! It's good that there are people like you raising awareness :) xxx

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  5. Great post! Really enjoyed it, insightful and informative, and deffo raising awareness, I certainly didn't know how CF affects every person differently. x

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  6. Such a good idea to show other CF stories, I love reading encouraging stories like this it makes me very happy so thankyou :) Also 20% increase is amazing Lily! xxx

    www.lulabelloves.com

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  7. Thanks Josie for sharing Lily's story. As you know, I very passionately support the cause. I admit that I very embarrassingly had no idea about CF before I had met/started reading your blog.
    If there is anything I can do to help to spread the world via my twitter or anything, let me know :)

    Edita
    www.pret-a-reporter.co.uk

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  8. I knew nothing about CF until reading your blog and it's interesting to hear about someone else's experiences of it, blog posts like this definitely help to raise awareness :) xx

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  9. Thank you for sharing Lily's story. Reading posts like this is truly eye-opening about what it's like to live with CF.

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  10. This is really interesting, my neighbour sadly died of it when she was 17 and it's just so awful- both of you are SO positive about living with it! I need to take some positivity from you guys as nothing majorly is wrong with me! although i know you don't like being a sob sorry but you really are inspirational josie ;) xo

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  11. I really love you featured Lily, her post was not only informative but inspiring, and her attitude very courageous and something we can all admire. You're spreading awareness so wonderfully Josie, and let me know if I can spread the word in any way shape or form, I'd always be happy to <3

    Sophie xo

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  12. This is a great post. My knowledge of cystic fibrosiswas very limited before coming across your blog. I feel I've got a far better insight now. Lily's attitude is great and I love that she hasn't let her condition stop her living the life she wants to lead.
    Faye | freckles-and-all.com

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  13. Thanks so much for sharing Lily's story, she told it so matter of factly too! It's wonderful to hear more people like you who refuse to be defined by their illness - thanks Josie!
    M x

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