But you don't look sick...


I considered not writing this post, of course I did because when it comes to holidays, clothes and other simple things I've wrote posts about, it comes so easily, make it personal and something that has a huge effect on my life and I suddenly feel nervous, I prefer to lock it all in rather than share the vulnerable, serious and quite honestly, more negative side of my life.

But sometimes I need to get over this and look at the bigger picture, which in this case, being that somethings in life need more awareness and a lot of the time, it's health issues, especially when they're a hidden illness.

This week is Cystic Fibrosis (CF) week and I feel it's the most appropriate time and more important than any other week to bring some awareness if I can. CF, a genetic condition meaning you won't catch the plague when I cough, yes I'm talking to you, the lady giving me stares while waiting to pay for my pretty new dress or you old man standing in the lift with me. It affects how our body controls salt and water in and out of our cells, this means thick, sticky mucus builds up in our lungs, digestive system and basically any other organ that produces it, which in turn means chest infection after chest infection, no eating without taking tablets first and many other issues, but that's just to start because it also brings with it an array of other health issues all because of this faulty gene, oh aren't we so lucky.

All my life I've had this great talent of hiding my CF, I won't show just how badly it affect's me, the day to day issues become easier to hide the longer you've had to deal with them and a lot of people probably barely notice how much of a toll it takes, because day to day and week to week can be so different that you learn to hide the bad times, the times when you're completely exhausted and barely have the energy to get out of bed because your coughing has kept you awake all night, the days where you can't finish a full sentence without having to stop to catch your breath or just cough and clear your chest, the days where you struggle to walk because your lungs decided to give you a break just so your joints could piss you off, it's only really my immediate family that see just how just how much time and effort goes into to trying to keep myself as well as possible which is more hard work than a full time job, it's relentless and never ending. But I shouldn't spend my life hiding all these things because it's part of me, it's what having CF means and if myself and others who do they same keep trying to hide the reality of this life threatening illness then people aren't going to be aware, they aren't going to realise the reality of it and learn why it's so hard, why life is different and most importantly they won't bother to learn about it because 'it doesn't seem that bad' after all, for the majority of us, we don't look sick at all.

Despite CF being a condition you're born with, my diagnosis came at 9 months old when my mum was given a very bleak outlook for me, including being told that she'd be lucky to see me reach 4 or 5, knowing this fact is just one of the many reasons that living my life to the full and living for the moment is something that I've grown up and swore by. I'll push myself through pain, chest infections, exhaustion to enjoy an activity, a day out or a holiday and deal with the aftermath afterwards because these things that healthy people do without a second thought don't come without consequences when you have CF. You tire your body out by enjoying a holiday, you have no choice but to deal with the effects which usually come with a chest infection needing 2 weeks of intravenous antibiotics, tiredness that doesn't fade for weeks and god forbid you spent the holiday walking because then you're having to deal with your joints throwing a strop at you too.


Despite the downside and obviously I'd love to live a healthy life, I don't say normal because this is my normal, this is normal to me, I don't know how to live any other way but I'm grateful to CF, it's made me who I am, it's made me determined, strong, grateful and best of all, it's given me a zest for life, to enjoy every moment while I possibly can. One day these things I love to do when I'm well enough or have accepted with what's to come for enjoying might not even be an option which is why I love to do what I can, while I can. The average life expectancy of someone with Cystic Fibrosis now is 37, I'm in my 30's now and I feel so lucky to have had the life I have so far, to have reached this age, I'm grateful for everyday I continue to breathe even if some of them aren't so easy ;)
My day to day life consists of airway clearance, nebulised treatment, injections and around 25 tablets and that's when I'm 'well'. Cystic Fibrosis is a progressive disease and many people will end up requiring a lung transplant, there is no cure, we need more awareness, we need more people to know that CF exists and exactly what it is, because no, it's not 'just like having asthma' 

Friday is wear yellow day for Cystic Fibrosis, if you want to help spread awareness or even donate to the CF Trust to help with research in hope that one day a cure might be found, then wear something yellow, take a selfie and post it on Facebook, Twitter or Instagram and use the hashtag #CFYelfie and you can also text 'YELLOW" to 70500 to donate £5



1 comment

  1. Who dont like a healthy life? I wish you to have always a life with full of happiness and health as well as success.

    ReplyDelete

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