Lucy Mary

As I was born with CF, I've not known anything different. I've known the pleasure of being healthy - this is all I've known. This may sound controversial (or not), but I think those who develop a chronic illness during their life have it harder. They've known what it's like to be healthy and reasonably, then, overnight, they develop whatever chronic illness they develop and their life changes forever. I can't imagine the pain and devastation that brings with it. Before any CFer's kick off - I know we have it VERY tough too, it's a lifelong struggle which we all wish we could take a break from, even if it's just a day or two. 

Sometimes I ponder what my life would be like if I didn't have Cystic Fibrosis. I try not to because I become wistful and make myself feel blue about what could have been.

There are hard pills to swallow when being born with or developing a chronic illness (not real pills, you understand). 

Firstly, what is a normal life, eh? Even people who don't have chronic illnesses don't have a normal life. As I said, I sometimes think what my life could have been like CF-free. I hope that there will be a cure in another lifetime for not just my illness, but for others, also. But craving for a healthy life, which I know I'm not going to have, is a bitter pill to swallow. Let's be real, I envy healthy people sometimes. Not having to worry about prescriptions, medication shortages, hospital/GP appointments or worrying about when the next flare-up/exacerbation would be a dream come true. 

But honestly, I haven't got the time or energy to dwell on that. It not only gets me down, but I have accepted that this is the life I've been given, and I should just crack on with it!

One thing I have hated is that people treat me differently because of my invisible disability. I don't want pity or special treatment (to a certain extent) because of my chronic illness. When I was growing up with CF, I hated being singled out in school as having an illness that none of my classmates had a clue what it was. When you're an adult, it's even worse. 

I understand that some have my best interests at heart and want to be understanding and make things more comfortable for me. I just don't want people to make that decision for me. If there's something I can't do, I'll let you know - don't assume I can't do something because of my disability! People with disabilities/chronic illnesses are warriors - we can handle a lot more than you think!

The worst thing that can happen is when an exacerbation or flare-up of your chronic illness occurs when you need it least. Obviously, any flare-up or exacerbation is bad, whatever time of day, night, week, month, etc. But it always happens when you have an exciting holiday coming up or a special occasion around the corner. Frustrating to say the least.

This one hurts the most. Friends are having babies, moving house, and getting engaged/married. Meanwhile, I'm sitting here watching from the back row, wondering when it's going to be my turn. Having to tell potential suitors that I have Cystic Fibrosis is hard. Like, when do I tell him? Before the meal, or about 3 months into the relationship (if it gets that far). Nowadays, people are a little more accepting of these things, but it's still hard to explain how it impacts my life, and potentially theirs. 

I'm starting to think I was a nun in a past life. Like seriously. 

I do a lot of treatments and take a lot of medication every day - you'd think that would be enough to keep my body in check, wouldn't you? Umm...no. My body still has days where it fights back and decides to be a pain, and well, give me pain - and lots of phlegm. 

Sometimes, I just have to cave in and admit I need a little extra help, by way of antibiotics or an emergency clinic appointment with my CF team. 

But boy does it try its best to hinder that. I've always had the attitude that I will never let my illness define me or beat me. I know some days it will, but I'll always fight back!

Having a chronic illness/disability is gruelling for anyone suffering from one. There are bad days, good days and everything in between. It's important to strive and live life as best you can.