“If I had a pound for every person that had asked me that very question, I’d be living in Liverpool, drinking rose from my penthouse balcony overlooking the three graces of the city”
But that’s only what dreams are made of unfortunately.
So, let’s talk about the title of this post, how does it feel having Cystic Fibrosis? It’s like me asking someone who doesn’t have CF what it’s like to be healthy.
Having a life with Cystic Fibrosis is all I know, this is the life I’ve been given. It’s shit but there is nothing I can do about that, I can’t exactly change my genes or anything. If there was ever a cure for CF, could I live the life of a healthy person? A person who doesn’t have to take tablets every time she eats and not inject herself every morning with insulin or not have to live in fear of the sight of a needle? Abso-bloody-lutely!
It would be a huge transition and it would take a lot of adaption, but yeah, of course I’d love to live a life without CF. People who say that they wouldn’t want to seriously need their heads testing. Who would say no to wanting to be healthy, but more importantly, feel normal?
“Cystic Fibrosis is a nightmare!”
Having CF hurts you physically. When CF makes you ill, it makes you really poorly, it hurts to even breathe at times, no person should have to live a life where breathing is painful. Breathing is a gift people take for granted, except for people with CF, it’s a gift we treasure like a pot of gold at the end of a rainbow.
Imagine breathing with a sound like a whistle in your throat? For me it is one of the most annoying sounds on gods earth! I can’t stand people doing tuneless whistling anyway so you can understand why it annoys the hell out of me listening that noise in my throat at times! When you’re well, you make the most of every millisecond of feeling fan-dabby-dozy, cause you never know when your lungs decide that they’ve had enough or your body decides that eating umpteen loads of chicken nuggets is not enough to put on that much needed weight.
“Mentally, it hurts too”
It’s mentally draining. I’m living a life where I can’t plan ahead for my future because I don’t know how long my life will be. I mean, it’s the same for everyone, we all don’t know how long we’re going to be here evolving on this green earth of ours, but for me personally, and hopefully other people with CF can relate to this too, I can’t think past the thought of knowing that one day I will get told by my doctors that I will need to be assessed for a potential lung transplant. Yep, not nice to say out loud. I can’t bear the thought of that right now, god knows how I’ll be when I get told that, but I’ll cross that bridge when I get to it, I hope that I will be fearless enough to handle the news and show enough determination and fight to keep going until I would hopefully get that magic phone call to say their lungs that are a match. I don’t want to sound like too much of a wimp because there a lot of CFer’s who have had a life saving lung transplant or are currently on the list but this is just how I feel so I don’t want no one going bat shit crazy on me!
“This may sound stupid but I still feel nervous when I tell people I have Cystic Fibrosis”
I mean, how do I start off the conversation? Because I can guarantee as soon as I say I have CF, the questions start flowing in and I get snowed under with them all! To this day, people are still clueless as to what CF is, or they just say “That’s the one to do with the lungs isn’t it?” That quote really grates on me like chalk on a blackboard. I just tell people to look it up on the internet or follow the CF Aware Twitter page. I find it hard to tell people when I go to a job interview for example, I’m always stuck with the same dilemma, do I tell them? Do I leave it to see if I get the job? I’m never sure what to do!
When it comes to relationships, I have always been scared to tell lads about my illness, I never know how they are going to take it, I’ve had lads completely cut me out of their lives as soon as they find out I have CF. They’re just nobheads and in a way I’m glad they stopped talking to me, I mean, I don’t want to be with someone who can’t handle what I have to go through, I think he would struggle to handle my feistiness more than my CF to be honest!
“I’m scared of burdening a man with my life, I think that’s the reason why I’m single”
but when I see all people’s relationship problems broadcast all over social media like it’s the daily news, it makes me glad that I have a non-relationship status!
I don’t want to make this post too negative. It gets me down thinking of all the crappy CF stuff. I don’t want sympathy or pity, like I said at the beginning, this is the life I have been given, I don’t want to be one of those people who’s bitter because they’re ill, I’m not like that. I don’t want to be a moaning old fart either! My attitude is to just get on with it and take one day at a time.
“One positive I can definitely think of is that I have met so many incredible people through social media with CF”
We’re all genuine people and more importantly, we’re troopers! Warriors! Fighters! We don’t take life for granted, we make the most of every second we are given, because it can be taken from us so quickly. It’s not hunky dory, but I get on with it and I enjoy life as I never know when it is going to be taken away from me. I have so much admiration and love for all CFer’s, I would be really lost without them all, so much love to you all!
If you have any questions then just leave a comment in the comment box below!
Lucy xx
