Growing Up With CF - Becoming An Adult

Hello!

After seeing a recent video that the CF Trust uploaded onto their Youtube channel, I thought I would use some of their questions to make a new blog post. To share my own opinions, views and experiences of what's it's like being a teenager with CF.

How does CF impact on my life?

It affects me everyday. Constant need of medication and physio to keep me well.
Being able to enjoy time with friends, going to the cinema, having nights out or going out for lunch. I have never let it hold me back.
The main impact it has had on my life is time management! Trying to fit everything I want to do, and everything I need to has been hard! I never want to miss out on all the fun, but to do that I have had to keep on top of all treatment otherwise I would become ill.
From a very young age I have participated in a range of sports. I have continued to enjoy sport now nearly 18 and I believe it has been one of the main reasons I have kept so well. Filling most of my life with sport has lead me to not miss out on as much as I could have done. Still participating in competitions, either in dance or horse riding.

How do I incorporate my treatment into day-to-day life?
I have to plan my time accordingly, especially when needing to take extra medication in the morning. While at college, my timetable varies, and therefore each day is different. Since starting a part time job in 2014, I had to make sure I made time before and after work to complete all treatment, and have enough time before bed. I have to be organised and think ahead of each day. It can be hard when it comes to half terms and school holidays when a routine can drift and it becomes harder to keep track of day-to-day medication.

When I was younger 
At a young age I remember forgetting I had CF and always accepted I needed to take medication and do regular physio. I remember evenings on the wedge with mum and her always making it a fun activity even when I didn't want to do it! One other memory I have as a young child is adults or older friends asking me "what do you suffer from?" I used to answer with "It's called CF but I don't know what it means" !
As I have become older I have learnt to deal with being an inpatient and understanding what treatment I need. I have still been able to take part in school sports days, discos, and trips away, but only if I stay on top of my treatment.









What are my plans for future?
2016 is going to be a scary year! After just applying to University for next year, I'm slowly having to take control of all my medication and treatment. I'm planning on using my long summer ahead to possibly travel, achieve my NPLQ beach lifeguard qualification and just enjoy the time off!  For the long term future I want to possibly take a gap year and work abroad! This will depend on my health and how well I am throughout the next 3 years go an Uni!




Does CF effect where I want to go?
I have applied to University not too far from home as I know I need to be in close proximity of my family and CF team. It is important to make sure it's not hard to get home if I become unwell or need to be admitted to hospital. Also, with regular hospital updates, and 'home' visits to consider.

How am I feeling about transitioning to adult care?
It worries me. I don't like change, and it will be a big step for the future. I have had the same nurses and doctors since birth, so it will be hard to say goodbye after making strong friendships.

Has cross infection made it tricky?
Many years ago CF research hadn't shown that cross infection was a problem between CF patients. It used to be possible to meet up with other people with CF and discuss our problems and fears with each other. However, it was then shown that infections can be passed when in close proximity with another CF patient. Fotunately, since the internet has grown, we have found different ways to communicate.

Has the use of social media helped me?
YES! The power of social media has helped so many people around the world to share their lives, experiences and worries with each other. Making friends, having questions answered, and a platform to talk to one another. The majority of my Twitter feed are other people with a CF background. Either mums, brothers, uncles, friends or even themselves who have CF. I believe there's a great community where we chat and support each other every day. Also through useful websites, where lots of interesting information can be shared, and new research from gene therapy can be documented.


Nx

Twitter - twitter.com/11nicolee
Instagram - instagram.com/nicskath_

www.cysticfibrosis.org.uk/
https://www.youtube.com/user/CFTrust

THANK YOU! Fundraising for Cystic Fibrosis

Hello!

I want to dedicate this blog post to all my family and wonderful friends who have helped and participated towards raising money for Cystic Fibrosis for the last 13+ years. This is my way of saying a massive THANK YOU!

Our first charity event was back in 2003 when we had our first coffee morning. It was situated in a small town hall and we raised around £500.
Over the years more and more ideas have sprung to our minds, and in turn close friends and family have wanted to get involved.
Very quickly here are some of the various events we have held:

• Coffee mornings in 2003 - 2008 which raised around £500 at each event
• 2006 took my mum and two friends Roma and Rebecca to the Grand Canyon for 8 days where they trekked over sheer rock descents, river crossings and waterfall climbs. Raising £9,000 between the 3 of them
• 70's and 80's night in 2007 and 2008 which in total raised just under £2,500 
• First Tongue and Groove band night was held in May 2009
• Annual Golf Day organised by our friends the Cannings, Priors and Peerless' started in 2009 raising approximately £800 at each event
• In 2011 the first Charity mountain biking event which involved over 59 riders, raising £1,106!
• My dad and friend Burgs cycled from Lands End to Seaford raising a whopping £3,000 in 2011
• In the same year my mum swam the 1 mile British Gas London Swim in the Docklands. Which she repeated in 2012 with friend Susie.
• Tongue and Groove band nights have continued each year since 2009 in total raising around £8,000 so far!
• 2012 bought another mountain biking event which raised over £2,000
• My secondary school raised over £1,200 in a charity Fun Run in 2012
• My mum and friends Sam and Cheryl cycled the London Night ride in 2013 and mum previously cycled it in 2011 and 2012
• My boyfriend Harry and friend Andy ran the Seaford half marathon in 2014 raising just over £400
•  My incredible mummy cycled the Prudential Ride 100 miles around London in 2014 
• At the end of 2014 my uncle Trevor dyed his hair blue and let it grow for 5 months! Then dyed his beard too and let it grow for an additional 2 months! Raising just over £2,000
•  In 2015 our lovely friend Kate ran the South Downs marathon and raised £500 

Here are only a few of the hundreds of photos that show the incredible support, and a short description below each picture.

 One of our various coffee mornings 

 70's and 80's night!

The view of The Grand Canyon

Mum, Roma and Rebecca in the local newspaper

 Lands End to Home

Cycled over 335 miles 

In the Newspaper!

 Secondary School Fun Run along the Seafront in 2012

 Running in heavy rain!

 Mum and friend Susie in London doing the 1 Mile Docklands swim in 2012

 Mum, and friends Sam and Cheryl at the finish of the Night Ride

 Mountain biking event has been successful for 3 years! So many people took part!

Tongue and Groove Band Night! This has been our biggest fundraiser, running once or twice a year since 2009 

Raising over £1,400 each night

 So many family and friends came and enjoyed a great evening of live 80's, 90's and current music sung by an incredible band!

   Harry running the half marathon on one of the hottest days of the year!

Andy with him too!

 They finished at a time of 1 hour 40 minutes 

 Mummy at the Prudential Ride 100

 Super super proud of her! Went and surprised her at the finish line 

 Uncle Trev and his bright blue hair and beard 

 Saturday night in the local pub where he finally got it all shaved off! 

Lovely Kate finishing the marathon in 6 hours 6 minutes

Now it's your turn!
How can you help the Cystic Fibrosis Trust?

Your support is vital for the CF Trust to continue to work in research, campaigning, support and care for those with Cystic Fibrosis.

There are loads of ways you can help, and together we will make a difference to thousands of lives.

Whether you want to donate, join an event, organise your own event, take part in a campaign or get your company involved, there's a part for you to play.

It can be something small like a cake sale or something big like a marathon! There are many ways in raising small or large amounts of money.

Please visit the CF Trust website to see what you can get involved in -  http://www.cysticfibrosis.org.uk/get-involved

Maybe there is something going on in your local area?

http://www.cysticfibrosis.org.uk/in-your-area

If you would just like to make a donation please use the link below - 

Donations 

THANK YOU! 


Nx 

Twitter - www.twitter.com/11nicolee
Instgram - instagram.com/nicskath_