My ode to Cystic Fibrosis.

Hey guys! How are we all? I must admit that I haven’t really stuck to my promise of blogging more regularly, but I have been using good old social media to blog the events of my little life. The truth is, I have been getting used to ‘my normality’ again, having a social life and focusing on my mind, body and soul. It does sound rather cliché but honestly, it’s something I had to and still must do. I’ve recently started volunteering in a school which I really love. It kinda makes me feel like I am not just sat at home doing nothing! I’m exercising a lot more, exploring new styles of dance, socialising more and just LIVING MY LIFE! AND BOY DOES IT FEEL GOOD! But anyway, let’s cut to the chase of what this blog post really is about.

About a year ago I wrote a letter to Cystic Fibrosis, after I had a real rough time. This time, I have decided to write a poem! I wrote it a couple of last night as I was struggling to get to sleep and you know, who doesn’t write poems in the early hours of the morning haha!? I did write this at 2 am in the morning and trust me, getting sentences to rhyme at 2am is some task haha, but here goes and I hope you all enjoy!

Some days I wake up roaring to go

Some days I wake up and say ‘it’s a no’

Some days I think ‘yes, I got this’

And on other days, I face CF’s cruel kiss.

I often pictured a world full of ease

Where there is no cough, not the sound of a wheeze,

Imagining myself with no inhaler at night,

Not a spacer or Volumatic in sight.

I try my best to keep on top of it all

If I don’t, it’s true my body will fall,

I must take every single tablet prescribed,

The rules of this illness, I finally now do abide.

There are ugly parts of my daily life,

And if I wanted to, I could focus on all my strife,

But I choose to focus on more than the bad or the sad,

Oh because I have every reason to be happy and glad.

My inhales and exhales are so significant and important

It just proves to me that these old lungs are definitely not dormant,

In the morning I stretch just that little longer,

Just to prove that taking my Vitamin D got these bones much stronger.

I can go out for a dance and a drink

And not think that my poor liver’s about to go on the blink,

No portal hypertension ravaging through my veins,

For 19 years this old liver hasn’t caused my any pain! With every carb I correct,

And the insulin doses I inject,

My sugars can often be unstable,

But hey that’s what diabetes brings to the table.

My skin is marked with the souvenirs of my hospital trips,

I’m so used to giving blood, now I give the doctor’s tips!

In July 2017, I got my handy little port,

All my life, I never even gave this one single thought.

A thousand thoughts run through my mind,

You’d have thought with this illness they would at least be kind,

I am often plagued with all things negative,

So I use all the goodness in my life as CF’s sedative.

A young mum who gave up her life for me,

So I could reach my goals and be who I want to be,

2 special nurses and a doctor who gave all their passion and care,

The burden now didn’t seem too scary to share.

All the physios helping me remove the mucus plugs and bugs,

My dietician was making sure I was taking creon with my chicken nugs,

In later years, I would make amazing friends who finally understand

And are always there to lend a helping hand.

So, on the days like today when I am feeling CF’s cruel kiss,

I remind myself that in life there is no moment to small to miss

I breathe in and I breathe out

I sometimes scream I sometimes shout

But there is one thing CF has taught me without a doubt

To always always appreciate life and live in the now.

I hope you all enjoyed reading my little ode to CF. I hope you can relate and maybe you might write an ode to your own obstacles in life! Let me know what you all think on social media!

Love always,

Nube x