Living with...Fibro

Living with Fibromyalgia...the number one point: don't expect people to know what the hell you are talking about when you tell them you have fibromyalgia! It is such a complicated illness that many doctors don't even understand it. It took years, and a heap of different doctors, and misdiagnoses for me to finally get an answer as to what was wrong with me. And when I did find out all I learned was that there is no cure, painkillers are basically all the doctor can give you-and if you have a metabolism like mine they do bugger all! So buckle up for a list of things that flew through my head when I asked myself the question: What is it like living with fibromyalgia?

Your Song

Your Song is The One before The One.
It's over long before it was over.
It's clinging on to what we thought was good, It was safety, and home, and comfort.
It was sadness and loneliness.

Your Song was everybody else's favourite song, but our own personal fight song.
It was love in the form of screaming fights, arguments fueled by a thousand pints.
It's ignored calls, slammed doors, and texts to other girls.
It's you cheat
I cheat.
Both of us too weak.

It's "surely there were good times too?"
and absolutely but very few.
It's loved the person, hated the couple.

Your Song is five years that should have been three.

Never Meet your Heroes

You know that saying "never meet your heroes" the one that is supposed to show you that we are all human and we all have flaws and that placing people on pedestals can only end in disappointment? I think we need to update it for 2018.

Social media is a wonderful tool, one that I genuinely enjoy using, it opens the world up way wider than I ever thought possible as a young girl who grew up with Encarta discs as my only "internet". It brings people together, and puts the world's knowledge at our fingertips, and even in our pockets-and it allows you a glimpse into the lives of your so called heroes. All of these things sound wonderful, until you realise that a person you have admired for years is not a person you could actually like in real life.

I could go on and on about the countless actors, bigwigs, and celebrities who for whatever reason have attracted admiration only to turn out to be the absolute worst kinds of people- in fact I'll mention the fact that I went to college and university chasing a dream based on the job of a man who turned out to not just be a dick, but also an actual, bona fide, (and later, convicted) sexual predator-it leaves a horrible taste in the mouth, and genuinely left me hating the idea of following in his footsteps. But this post isn't about the insidiousness of predatory men, or the systems that allow them to perpetuate their crimes. This is about following someone on twitter, and admiring their work, and being grateful to them only to find that you disagree so fundamentally on the things that mean the most to you.

It is well known to anyone who knows me, reads, this blog, or even someone who has just glimpsed at my header that I am a huge fan of Harry Potter. Those stories reignited my love for reading, when I was at an age where football and boys were at the forefront of my mind. They are a warm blanket that makes me feel safe when I flick through the pages of whatever version of the book I've picked up that day. Harry Potter is home, and for a long time J.K Rowling was a hero to me. She created this amazing world where so many of us feel welcome, she has done more for childhood reading than any other person I can think off, and I adored her. I even met her once, I was friends with a member of her family and she joined us for dinner- she was pleasant, funny, and whip smart, and only too happy to sign the copy of Goblet of Fire I carried everywhere with me at the time. I met my hero and I was not disappointed, it was a miracle!

But now, now I've watched as it has become very clear that the woman who created the world I love, doesn't have the same view of how to make the world we share, a place that everybody can love. The real world is not safe for everybody, it is not somewhere where we always feel welcomed, and it is full of people with differing opinions.

Of course everyone is entitled to their own opinion, their own politics, and their own lives. But everyone is also entitled to not associate with people or follow people, or fund the millionaire lifestyle's of people with whom they wholeheartedly disagree with.

Be it a disagreement over the support of abusers, the public (some might say influential) backing of of one side in a referendum- the outcome of which would affect millions, or the use of or agreement with, disparaging, transphobic tweets, and countless examples of cultural appropriation and disregard for people who call it out.  These are not the actions of someone I am willing to continue to call a hero.

I think if you have a voice its is important to use it, use it to elevate those without a voice, use it to be heard, and use it to change the world. But heroes are personal- and my heroes use their voice for the greater good, they use their platforms to inform, and to spread love and light. My heroes will no longer be people who who throw their money and influence around in a selfish manner. My heroes will no longer be people who hide behind "I'm sorry if you were offended..." publicist written apologies, and they will no longer be people who do not use the platform they have been given to make a difference.

I will always be grateful to J.K Rowling for giving me a world where I can retreat away from this one, I will always be thankful to all of the people I have admired in the past who I may look at differently at now-because the fact of the matter is that at some point they have given me something to believe in, something to be passionate about. But it has come to the point now where I will not continue to follow them, admire them, or fund their millionaire lifestyle with the money I work my ass off for.

And as much as I've mentioned her in this post this is not all just aimed at J.K. Rowling, I feel this way about so many people I used to admire-that man who made me passionate about PR was a scumbag, the man who created my favourite show of all time turned out to be just another jackass who used his power to make women feel uncomfortable or unwanted, the list goes on and on. So many people say you should "separate the art from the artist" but I can't agree with that, I just can't. I could try to explain that further but I'll never be able to articulate it as well as the indomitable Laura Jane Williams did in this piece so I'll leave you with her


I've recently finished my annual rewatch of my all time favourite show "One Tree Hill" and I was reminded just how much I loved one of the quotes from the show. So, after flying through the final few episodes last night I suddenly I found myself lying awake at 3:30am making notes for this very post.

"So, I've been thinking about this whole being happy thing, and I feel like people get lost when they think of happiness as a destination...We're always thinking that someday we'll be happy; we'll get that car or that job or that person in our lives that'll fix everything. But happiness is a mood, and it's like a condition, not a destination. It's like being tired or hungry, it's not permanent. It comes and goes, and that's okay. And I feel like if people thought of it that way, they'd find happiness more often."- Julian Baker

Isn't that a wonderful way to think about things. Instead of thinking "If i get this job I'll be happy" just think "I felt happy this morning, and I felt happy after that interview". Take note of the moments as opposed to the things. Feel happy and feel sad, and feel hungry and tired and remember that happiness is a feeling not a somewhere or when.

The past month has been a hard one, I've not been able to work because I threw my back out, I've felt dejected, exhausted, a bit drowsy, I've not been able to do anything on my to do list (unless you count binge watching 00's TV shows), I've not had a huge amount of human interaction, and my laundry pile kept getting bigger and bigger which makes me feel anxious. It would be easy for me to say "I'll be happy when my back feels better, and I can go back to work" but then I took a minute and reminded myself of the quote and realised that I've felt sad, tired, moody, lonely, bitchy, poorly, and yes HAPPY!

I felt happiness at 3am in the morning while listening to the remnants of Storm Ali rustle the trees on our estate. I felt it each time Lando curled up at my feet and fell asleep with his chin never leaving my ankle.

Happiness was found in seeing my friend's smile on her birthday, in watching my husband's NFL team get battered by our friend's NFL team. I felt it watching Damian pass test after test at his new job-on finally seeing him come home from work with a smile on his face.

I felt happiness watching Damian have a conversation with Lando (our dog) about how keeping mama happy required nothing but books and sloppy kisses. It's in the very few moments where feeding time at the zoo (dinnertime to normal people) becomes a sort of synchronized dance. I felt it last night when I finally crawled into bed, wrapped my arm around my teddy and my husband, and the first thought that entered my mind was "if the rest of my life feels like this, I'll be at peace".

You see it's easy to let all the bad things, all the things you are missing, and all the horror stories you see in the news to make you feel like you'll be happy when there are good things, when you get the things you think you are missing, or when the news gets better (just turn it off guys it's bloody bad for your health)-but it's so, so, so much easier to pay attention to Happy the emotion instead of searching for Happy the destination.

Just do yourself a favour today, sit down, take a second and count the happy. It'll make you feel miles better I promise. And if you can't think of anything, here's a photo of my beautiful pupper!

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