Cystic Fibrosis Week, Saying Goodbye & A New Routine…

Sunday (29^th April) was the start of Cystic Fibrosis awareness week, and since then my CF friends & I have been cramming facebook newsfeeds with facts, information video’s and fundraising events all in the aid of this horrible cruel illness. A few basic facts if you didn’t already know are;
 •Cystic Fibrosis (CF) is one of the UK's most common life-threatening inherited diseases.
•Cystic Fibrosis is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body.
•Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus.... This makes it hard to breathe and digest food.
•Over 9,000 people in the UK have Cystic Fibrosis.
•Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis – around 1 in 25 of the population.
•If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.
•Over 95% of the UK CF population is Caucasian, but Cystic Fibrosis affects many ethnic groups.
•Each week, five babies are born with Cystic Fibrosis – one in every 2,500 births.
•Each week, two young lives are lost to Cystic Fibrosis.
•Currently half of the CF population will live past 41 years of age, and improvements in treatments mean a baby born today is expected to live even longer.

Many people I know, including cystic fibrosis sufferer’s themselves, are participating in all sorts of events over the next few months to raise money for the CF Trust in order to keep on working to find that all important cure.
Please show your support by texting CFKK73 £1 to 70070 to sponsor Lauren on her skydive this June, every little helps and will be much appreciated by CF sufferers and their families in the years to come…. Thank you!!

Stefan started his new job on Monday, it’s been quite a shock to his system and mine having a bit of normality of a working day again. It has been so nice having him home every evening, knowing that after dinner, he doesn’t have to have a shower and get ready for work… Instead we can have lots of cuddles with the babies and a reasonable early night ready for his alarm in the morning. That’s what’s putting my system into shock, I got into the routine of speaking to him on his breaks and watching late night films, finally going to bed about 2/3am and sleeping in until 11am or 12pm the following day. Now I’m finding it hard to fall asleep when we go to bed and I wake with his alarm and can’t drift off again, I’m sure after a few weeks it’ll all fall into place. I’m just going to have to be patient! It’s a bloody good job I’m not incredibly active!!

Monday afternoon was a hard day, it was the funeral of my friend Mark, (Chappers) As it was Stefan’s very first day at his new job we didn’t think it would be right for him to have time off so soon, I wanted to pay my respects and on his behalf too, so my sister was able to pick me up and take me. Turn’s out my brother also was attending and he was able to push me in my wheelchair up the church stairs and so forth.
Although it was obviously devastating having a service for someone so young and so well loved, it was a celebration of his life and the send off was none the less beautiful. He had bright yellow flowers spelling the name Chapper’s and two close friends gave lovely readings. The songs played were perfect, there wasn’t a dry eye in the house. We then all went to the village hall for refreshments and hugs all round. Although I couldn’t really move about, it was good seeing some friends I hadn’t seen in a very long while, it was just a shame it had to be under such sad circumstances. I was able to talk to Mark’s family and gave them a hug as I have known them for many years. I can’t imagine how hard it was for them but I think everybody did our Chapper’s proud that day. As I said in my facebook status the morning of the service, “goodbyes are not forever, goodbyes are not the end, they simply mean I’ll miss you, until we meet again.”

I have my local cf nurse from Torbay hospital coming over to me today for my bloods and dressing change. I am chilling out at home for the rest of the week, having lots of snake love and keeping on with my iv’s etc as I want to be as well as possible for our London trip this weekend. The sickness has finally passed from my Mereopenom so that’s a big relief. I just need to rest and maybe try and nap here and there as I don’t want to be too exhausted for the journey. I will of course take lots of pictures and let you know how it all goes, excited doesn‘t even come close to describing how I feel about it, only 3 more sleeps!!

Hope you all have a great bank holiday weekend! Thank you for reading… xxx