So here we are, week one done and 50 weeks until Ironman UK 2020….
I’m still struggling with my shoulder and have been signed off by the GP for another two weeks, so while speaking to Gemma, it has been a week on the turbo, my first weak on Zwift so I can get the legs spinning with no pressure on the shoulder. Running with a sling is a no no, probably because everyone is worried that I wouldn’t be able to keep my balance and I ended up stacking it and buggering up my shoulder even more, it seems that I have somehow got a reputation for being a bit accident prone. I’m not sure where that has come from? It was always Vick who was known as Bambi!
With it being week one, and given the set of up the TT bike, the ability to change gears with just the one hand, and the more options for positioning, I set rogue on the turbo and had my first venture into the world of Swift, and my what a sweaty bucket of fun that is! Using the sets given to me by Gemma on TrainingPeaks that is linked to my Swift account, Gemma can really control what she wants me to get out of the set.
And that was the gist of week one. Three sets on the turbo and a green week on TrainingPeaks . It was a light training week, but there are some more miles in the legs, some more hours in the saddle and some more weight lost.
So given that this was a light week of training, I thought I might use this part of the blog to explain more about Cystic Fibrosis. It’s a condition that I’ll be honest, I and my family knew very little about it until Christina was born in 2015 and it wasn’t until she was 3 weeks old that she was diagnosed.
Now i can’t begin to explain what those first few days and weeks were like for Vick and I coming to terms with this news, so I daren’t imagine what it must have been like for my sister, Jay! We had a lot to learn, and my sister was well supported by the Health Visitor, and the hospital staff were amazing, and Christina soon had her own little team at the hospital that would be with us all every step of this very steep learning curve. Jay was quickly put in touch with the amazing people at the Cystic Fibrosis Trust (https://www.cysticfibrosis.org.uk) who spoke to her on the phone and they were even kind enough to phone me and Vick and talk about the condition.
So what is CF?
Cystic Fibrosis is a life limiting genetic condition that effects over 10,000 people in the UK. With around 1 in 25 people carrying the defective gene. It is also one of the most common life-threatening inherited diseases in the UK. Statistics say that 1 in every 2,500 babies born in the the UK will be born with Cystic Fibrosis and it effects around 100,000 people in the world.
The condition itself effects the internal organs, namely the lungs and digestive system causing them to become clogged with a thick sticky mucus that can lead to chronic infections, inflammation of the lungs and difficulty digesting food.
At the moment there is no cure for CF, it can only be treated and managed. This means daily physio, a cocktail of regular medication, and other medications as and when required such as nebulisers and stronger antibiotics.
Christina, and now Amelia, who was also born with the condition in 2018 have a well established routine of daily physio, meal time routines and a very active lifestyle to help keep the mucus shifting!
And that is only a very brief overview of the condition, please, please, please go and have a look at the CF Trusts website for more detailed information about it! https://www.cysticfibrosis.org.uk
And that in a snap shot is why I am really getting my backside into gear to help the CF Trust help Christina and Amelia and every other family around the world living day in day out with this condition and until CF means Cure Found…..