‘Most days it feels like I’m breathing through a straw’
Rachael Norcott, 39, from Cheshire, was told 17 years ago that she didn’t have long to live – so lives each day like it’s her last
“To a fellow sufferer like me, Chelsie’s death is a stark reminder that this disease doesn’t respect age or circumstances. She was a shining star and only 30 – it’s an inexplicable loss.
“This year I’m going to be 40, a milestone that I, and a team of doctors in 1986, never thought I’d reach.
“Life expectancy when I received my diagnosis was 18 and one bad infection could prove fatal. It was, and still is, a proverbial ticking time bomb.
“In 2005, I reached the lung function threshold for transplantation. But following assessment, I was rendered ineligible due to a blood clotting disorder. I was told I potentially only had ‘a couple’ of years left.
“Seventeen years later, I’m living with my partner and five-year-old son, George. I’m also a member of Rock Choir. Despite being in a rare gene bracket, I’m fortunate to be on one of the double-modulated therapy drugs which aim to modify the genetic defect. I try to manage CF and not let it manage me. I’ve spent a fair bit of my life in hospital and now have only one viable vein in each arm.
“Stairs are my nemesis, as are walking and talking concurrently. I take hundreds of tablets each month, use nebulisers, inhalers and do exercise and physiotherapy treatments twice daily. Every three months I have intravenous antibiotics, injecting myself multiple times a day.
“But CF doesn’t just affect me physically. Mentally, it’s difficult knowing that my body lets me down. Since it’s got me through the last 39 years, though, I have to keep faith in it. I work hard, even though it often feels like I’m breathing through a straw, and when my morning treatments are done, I focus on daily life. I have limitations but I won’t let CF define me and I live each day like it’s my last.
“George is kind, funny and clever and I’m so proud to be his mummy. He’s the light of my life and why
I’m determined to be around as long as possible.”