GET TO KNOW ME
My Story
Bio
Hay I’m Ryan. This is a blog about my life with Cystic Fibrosis. As you can probably tell I'm no writer, so expect to see a lot of overlooked spelling and grammatical errors.
Growing up it has always bugged me that there is very little reading from a patient’s perspective. Especially from men. As a teen there was one book called Growing up with Cystic Fibrosis. The book was mostly facts and figures about symptoms etc. General knowledge of CF. There were some extracts here and there from patients, but it was 90% from a female perspective. I found it very hard to relate to at times. So, hope this helps people in some way.
Anyway, on with my story...
I was born in 1994 and after a few minutes of being, well... dead (for like 3 minutes, it’s all good), and having a massive bowel blockage I was diagnosed with Cystic Fibrosis at just 3 days old. I never considered my life to be difficult but the look on some people’s faces when I mention the things I've been through, they tend to beg the differ. In general, I have a very positive outlook on life. Growing up I was considered as gifted in Art, History, Music, and Science, I was also very active and extraverted. 1
Up until my early 20’s I had already spent extensive time in my local hospital (Hull Royal Infirmary) so I had plenty of free time. Usually this would be used building Lego sets or little projects, playing on my Gameboy or DS. But mostly I would sit and think. About, well, everything. I wouldn’t say I’m particularly intelligent, so it left me needing to find answers to some BIG questions. You see with Cystic fibrosis, while it does give you rock hard abs, an amazing sense of humour and skin that tastes like it’s been beautifully seasoned by a gourmet chief. It also drastically shortens life expectancy. As a young child I heard I wouldn't see 16. To be honest I didn't feel sad or helpless about it, I just wanted a clearer timeframe. Should I plan for college or just chill being a big kid? How did this happen? Can I change it? Nobody wanted to give me an answer. 2 So, I thought fuck it, I'm going to find answers to these questions myself.
What is a good life? If my life expectancy is 40+, am I middle aged?3 What are my limits? Can I put some of this salt from my face onto my chips? (Haha just joking about that last one, I've never tried, but after some research, it is edible.... but eww, gross)
My plan was simple, to get these answers thought I needed to live an interesting life, try everything once, study philosophy, psychology, science and watch A LOT OF film and TV... and read a few good books too.
But around the age of 20 my health got really bad, like my lung function was 16-18% less than a litre of air was getting in and out my lungs (still didn’t stop me getting my 2nd Dan black belt in karate and still being physically fitter in almost all other aspects)
It's not all doom and gloom. A few years ago, I started on a new medication called Orkambi, now I’ve moved on to Kaftrio. Now I'm even better. My life expectancy is higher, and my fitness is amazing. Those poor physios that have to do some "light exercise" with me on the wards. They never really expect HIT training haha.
As you are about to read, I've had an amazing life and I'm really proud of what I've achieved. I'm so so lucky to be able to plan for a long future.
So, while I'm planning on fulfilling my big life goals, I may as well document the key parts for you guys if you want to give it a read. Feel free to reach out if you would like to know more about my weird life.
Take care,
Ryan
Xx