Thursday, 15 December 2016

Unfounded guilt in chronic illness

"I am sorry!"

"I'm sorry, I'm not going to be able to make it tonight."

"I'm sorry the house is a mess."

"I'm sorry I haven't been in touch."

"I'm sorry, I can't come in today"

"I'm sorry I'm late."

"I'm sorry, I fell asleep."

"I'm sorry, I don't feel like talking today."

"I'm sorry that you think I don't care."

"I'm sorry I am sick."

Having a chronic illness means often living your life feeling guilty, but why, when it's completely out of your control?

Because as humans, we are programmed to feel guilty if we let someone down or make someone feel bad, especially those that we're fond of. 

Would we be there if we could? Of course we would! Would we have cleaned the house and been shopping and cooked dinner if we felt capable? Of course we would! It's never a case of choosing to be half a person. It's never because we don't respect someone's feelings and just can't be bothered to do something.

Healthy people still only have a certain amount of energy to use throughout the day, but people with chronic illness have less in storage. Sometimes it's a case of having to prioritise what you will use your energy for today, and sometimes that priority has to be yourself. Being quiet. Sitting down. Watching a movie. Colouring. Meditating. Reading a book. Anything to try and escape the reality that is wearing you down and frustrating the shit out of you. Just trying to find some time to relax and de-stress because illnesses such as Inflammatory Bowel Disease can be triggered by stress, so prioritising rest one day means having the strength to carry on for the next few.

It's not an easy concept to grasp for those that don't suffer so it's not uncommon to receive pretty pointless advice such as "get some sleep", when you're battling fatigue, when as a sufferer, you're fully aware that you will wake up just as exhausted anyway. It's not easy for people to understand how sick you are when they look at you and just see a person like every other.

Yes, I actually am sorry I am sick. I am not sorry for you, I am sorry for me, because every time I let people down and every time I don't do what I planned to and every time that guilt creeps in, it's me that cries about it. Whilst you're losing faith in me, and complaining to people about my moodiness lately and my distance, and that I let you down, I am suffering. I am scolding myself for being useless and not being stronger and not being a better person, but not a lot of people know that, because it's something I do alone, because my 'friends' are too busy discussing what a rubbish friend I am.

It's difficult. There's no escaping that, and there's also no escaping the guilt that comes with being half human, half sloth.


Please just know that we are trying. We are trying with every ounce of our being to live as normal a life as possible, but sometimes we will fail, and that's OK, because nobody's perfect and we must deal with the hand we've been dealt, even if that hand fucking sucks.



Sunday, 11 December 2016

I've always wanted to be Pocahontas

Since the release of Pocahontas in 1995, when I was just 7 years old, my wish has been to have blue streaks running through long, dark, straight flowing hair...

I'm sure most women will be aware that dying your hair dark and then trying to strip that colour enough to have blue streaks is difficult AND really damaging hair! Not only that, but you're lucky if the colour stays in more than a few weeks and with me needing to wash my hair even single day I'd have lucky to keep them for a week.

I had a brain wave! Extensions!

Well I've previously had micro ring extensions which just slid straight back out of my hair... twice! Last year I tried adding blue extensions with a micro ring that has silicon on the inside, which is supposed to grip the hair better. Again, a week later, they had all come out.
So, I've gone with having them glued in. So far so good. I haven't lost one 4 days later.


My hair is half permed (yet another thing that didnt't work). Two attempts left me with wavy and straight patches BUT I'm thinking when it's eventually straight again, I will Dye it black, have only blue extensions put in, and FINALLY BE Pocahontas!

Friday, 9 December 2016

Accident | Flash fiction

I lay there, unable to move, wondering what would become of me. Machines bleeping, feet scurrying across the ceramic floor, everything had such urgency about it.

The next thing I remember is waking up from surgery.

Everything had happened so fast, as though time sped up; the lights, the car, the screech of the tires on the tarmac. Then everything slowed right down as I lay on the ground for what seemed like eternity.

Months of recovery gave me a lot of time to think about what’s important: Love, time and those small moments in life that you don’t notice passing by but have the most meaning. Those moments replayed in my head each night when I couldn’t sleep because of the pain from physio earlier, along with all those things I never said, but should have.

127 days later I left the hospital.

That’s where my real story began.


Flash fiction competition
– The story has to be family friendly
– It has to be your own work
– It can be no longer than 150 words

A house that wasn't mine | Poem

This morning I woke up, in a house that wasn’t mine,
I don’t know how I got here, maybe too much wine?
I stand to look out the window, to see where I might be,
Nothing looks familiar, and I’ve never seen that tree.
I head for the door, but realise I’m not dressed,
Where did I put my clothes? This is not me at my best!
I head for the wardrobe, there’ll be something there,
But it’s full of frumpy old people clothes, nothing I can wear!
I really do not drink that much, how can this be?
I’ve never strayed from home before, I’m only twenty three!
I begin to panic; I’ve no memory of arriving here,
Maybe I’ve been kidnapped?! My brain floods with fear.
There’s a tap on the door, and a lady whispers “Pam?”
I don’t know who she is, but it’s certainly not my mam.
My eyes dart around the room, looking for a phone,
Where am I? Who is she? Please just get me home!
I grab the quilt, cover up and make my way across the floor,
Afraid of what may greet me on the other side of the door.
I stumble in front of the mirror, and land right on my knee,
I look up, who’s that old lady? Oh my god, she’s me.

- Carers UK creative writing competition

Whoever you are tomorrow | Poem

She’s not the same, as once she was, young and fun and free,
So much of my life I’ve know her, while she’s loved and cared for me.
Her personality has changed now, she worries so much more,
She doesn’t have steady footing, we have to watch the floor.
She creaks and groans doing just the smallest of tasks,
Her memories are fading, the same questions repeatedly asked.
Her skin is thin and her bones brittle, she’s often battered and bruised,
She can be angry and she can be bitter and really easily confused.
Most days I don’t recognise her for the woman she used to be,
But more often than that, and what hurts the most is that she doesn’t recognise me.
I’m getting to know her all over again, but the ‘her’ she is keeps changing,
So I have to adapt to be what she needs most while her needs are constantly ranging.
Every night when I tuck her into bed, and she’s got to know me through that day,
I pray to god she’ll remember tomorrow, so I don’t have to fight again to stay.
And I whisper the same thing, every single night, to the woman I once knew,
“Whoever you are tomorrow, I’ll love and look after you”

- Carers UK creative writing competition

Together, you’ll see | Poem

You’re different now, you’re old and frail,
Thinner skinned and always pale,
Your hair is shorter, your body weak,
Your voice is fainter as it’s harder to speak.
You’re not as happy and barely smile,
You wouldn’t be capable of walking a mile,
We don’t communicate like we used to,
When we’d just have a natter over a brew.
You don’t remember times that we’ve shared,
You don’t remember when you truly cared.
 Sometimes I mourn for what we have lost,
And many times, swords have been crossed,
I know It’s been difficult, for you and for me,
But we’ll always get through it, together, you’ll see.
I no longer know you, that much is true,
But I learn every day how to keep loving you.

- Carers UK creative writing competition


Friday, 18 November 2016

Harnessing the power of social media for good

Let’s be honest, social media generally has a bad rep for being a place in which you can be hunted down and strung up for having an opinion. Keyboard warriors and internet trolls, lurking in the depths of the World Wide Web, waiting for someone and something to create a drama about.


Even I to an extent, play my part here. When I come across some uneducated twat on Twitter making comments about ‘shit bags are disgusting, cover yourself up love’ etc, I’ll take a screenshot and set the troops on them… Why? Because I can!

But the internet isn't always a bad place to be. Social Media CAN be harnessed for good. Facebook groups and forums make nice little private areas for communities to come together, whether it be a hobby or a disease that they all have in common. Twitter is great for searching keywords to find info and news on things that interest you. Pinterest can be a happy place, full of treasures you may never get to own and YouTube for those down days when you need to laugh at other people’s misfortune or just cheer yourself up with a favourite song or two.

My favourite part of social media is the trends. Logging in to twitter this morning, I find #ChildrenInNeed trending, which if am completely honest, I totally forgot was airing tonight, and is completely irrelevant because I will be at the cinema WATCHING FANTASTIC BEASTS AND WHERE TO FIND THEM!

That aside, the point is that you don’t have to log in and follow the drama that trends daily – Trump, Brexit, shooting’s and plan crashes… You can choose to follow the positive. You can choose to click on #Spotacular, #FridayFeeling, #MotivationMonday, #NoMakeUpSelfie, granted you will also be subjected to some porn somewhere in the midst of all the positivity and some company trying to sell you something (don’t shoot them, this is what I do for a living, everybody’s got to sell)!


Social Media SHOULD be about connecting with people, about sharing aspects of your life and your achievements with people that are happy for you and want to celebrate your successes, and it does have the power to do that.

If only so many people weren't so shitty and bored huh?!

There IS positivity online. People DO harness the power of social media for good - awareness and fundraising, the fact that thousands of people under the same sky are looking at the same super moon and watching the same comets at the same time. Watching your favourite show or movie and being able to log in to Twitter and celebrate your inner nerd with the other tweeting nerds out there, ALL OVER THE WORLD, and that really is amazing. 


This is what social media should really be about – being a part of something bigger, something good!

Thursday, 11 August 2016

Dear inappropriate lady with your colostomy bag at the pool today... WOW

I refrained from commenting as all I had were curse words - calmer now.


IBD is an inappropriate and inconvenient disease for those that live with it. It's inappropriate to leave the table at meal time or drop your shopping in a store to run to the toilet. It's inappropriate to live your life around bag changes, the nearest toilet, sore skin, leakages, blockages and in constant fear of being judged.

Quite frankly having an ostomy is often a hindrance to those living with it but it's far better than the alternative - death. We know they aren't pretty but we also have to live with the hand we've been dealt and it takes courage to be able to bare your battered and broken body to the world and say "this is me." *claps for the lovely lady by the pool*

After having a lot of life stolen by a disease, why should someone then not live the rest of it when they are able? Not take sun holidays or have sweat to death by the pool?

This inappropriate man with his inappropriate remarks just proves we have a long way to go to remove the stigma of life saving appliances.

Tuesday, 2 August 2016

Yes I have IBD, but Ynot go to a festival?

Other than getting fed up of seeing stupid, off their tits teenagers and the fact that I am not really a fan of people full stop, and there were sooo many of them, I had a fantastic time at Ynot festival!



Pitched the tent as close to the toilets as possible - standard! It was also pouring with rain when we arrived - also standard.


Truth be told, lack of phone signal sucked... food was overpriced and mainly disgusting and I actually did miss the man in my life LIKE CRAZY the whole time (which was, quite frankly unexpected)! The portaloos were the worst I have EVER seen by far and there was not one time the whole weekend when any I went to had toilet paper! Of course I was prepared but that's not the point!

I had a few hours one morning to myself... just to be away from people. I got up early and sat on the grass whilst there weren't many others up. The joy of not being a drinker is not hangover!


Noel Gallagher was brilliant (when he was playing Oasis tracks) and Madness were fantastic!


Friday, 24 June 2016

Brexit - THIS is WHAT WE HAVE NOW

Feel like I can't face social media today.

Totally lost respect for so many people. Not remotely related to which way people voted, everyone's entitled to an opinion, but for the way in which so many of you have reacted. Foul, nasty, abusive comments & statuses. Absolutely no respect for one on another & that's all on YOU, not the EU happenings.

And no matter how much you cry, shout & hurl abuse, it's not going to change the outcome.

THIS is WHAT WE HAVE NOW. Suck it up because not one of you holds any power to change what's already done.

Wednesday, 1 June 2016

Why won't you just LET. ME. LIVE?!

'Living' with Inflammatory Bowel Disease can sometimes feel like a relentless battle - you against your body, you against your mind.

You against time as the minutes tick by at an extraordinarily slow pace as you plead for the day to be over and night to arrive and time for sleep, yet at the same time your life is whizzing by and you feel as though you're just standing immobilised with not enough strength or energy to plough forward whilst not being willing to surrender and turn back.

You against society, their judgements and their lack of understanding as they eyeball you with disdain for using a disabled toilet, fussing over a menu or wearing pyjamas in the middle of the day.

What are you to do when your body is waging war upon itself and you have literally no control?

Being sick and close to death is scary but personally I think that being so close to life but not able to live it is much more terrifying.

Crohn's Disease and Ulcerative Colitis sufferers often have periods where disease is active (a flare) and periods in which it is not (remission) which you would assume would mean that you have your freedom back, at least for a while. So surely you should make the most of these periods as they can often be so short lived and few and far between? Do what you can, when you can, so to speak?
But... constantly there in the back of your mind is the fear. The fear that all of this could be taken away from you with no warning, you could literally wake up tomorrow sick again and be under the knife within the week.

You'd expect that the longer the remission lasts, the safer you would feel and the more comfortable you would be in making plans and thinking of future adventures, but that's often not the case. The longer you're well the more anxious you become about being sick again, as though you must be about to run out of 'luck'?

I have never been keen on letting people become involved in my life as I feel that this is my burden to carry. I am not a pleasant 'sick person'. I do what I need to do and then I like to shut off, and rest, and not be disturbed, or nagged, or told how to feel better or what to eat or to go to sleep when I'm already begging for sleep to take me while the sandman ignores my pleas. I am irritated (and irritating), irrational, snappy, angry at everything and nothing and functioning purely on autopilot, and then comes the real 'can't be medicated better' sickness that requires surgery and long hospital stays. The fear and the sadness in the eyes of the people that care about you is too much for me to handle and guilt is not something I want more of.


So what?

How do we release ourselves from this constant fear of what if?


What if I spend this money but then I need time off work?

What if they can't handle me when I'm sick?

What if I am not well enough to take that holiday?

What if they leave when I need them the most?

Or worse still, what if they stay out of guilt?

What if....

How do we 'live' if we're in constant fear that our 'life' might be taken away?





Sunday, 24 April 2016

When people say stupid shit online...

"Why are they doing it?" Worst. Question. Ever.

Why do they do what? Live the life they've been dealt to the best of their ability? Wear a bikini with a medically essential 'accessory' showing? Why do they not just die instead of accepting such a monstrosity? How rude of them! I mean how very dare they?! Who do they think they are, SURVIVING & LIVING?..

It's people like FrikkaDilla that should be ashamed of themselves for being so narrow minded. Maybe if she's so disgusted by it she should donate to find a cure to save her having to look at these selfishly sick people!! Text CCSH90 £5 to 70070 in case you were wondering...


Saturday, 5 March 2016

Raising money for #IBDSuperHeroes with aerial assault course

Every year the company I work for, Brighter Directions take part in a charity challenge for Cure Crohn's and Colitis Charity!

I'm the one in the Batman leggings...



 



Friday, 8 January 2016

The time has come, to bid #GetYourBellyOut farewell

Yes, it is true, my time at #GetYourBellyOut HQ has come to an end and I guess I feel I owe some sort of explanation which is not easy, as I am sure you can understand that this was not a decision that’s been taken lightly.

#GetYourBellyOut will ALWAYS be a huge part of me, my baby if you will. #GetYourBellyOut runs so deep within me that I am pretty certain that if you slice off a limb, #GetYourBellyOut would run right the way through me like a stick of rock.

I will not be leaving the group and I will not stop supporting and taking part in takeovers etc. I LOVE the members and it’s thanks to the support that the campaign received so early on that I am still here today. #GetYourBellyOut saved me from myself, saved my life and saved my sanity. My inbox will always be open to supporters and IBD sufferers.

I guess it doesn’t take genius to figure out that things have not been right behind the scenes for a while. The honest truth of it is that the campaign took off so quickly that I found myself swept along in the excitement, working with 3 other ladies that I knew nothing about and that seemed to have the same ideals in terms of what we thought the IBD community needed, but it is no secret that we are four completely different people, with differing views, opinions and outlooks. We’re all so passionate about our own personal views and the campaign that it has meant we have often come to blows behind the scenes. For a long time things have been swept under the carpet and we have continued to work together for the good of that campaign and its members, believing at the time that we were all heading in the same direction.

From my personal perspective, and please remember that this is only my view on things, that we haven’t really ever recovered from the Pride of Britain fiasco. There was not one tiny part of me that enjoyed any of the entire process. From the filming to the awards, it was like hell on earth for me. I went ahead with it because I believed in the campaign and I believed that the coverage from receiving the award could gain us the exposure we so desperately needed to reach other sufferers who did not yet no we existed. No matter how tough things have got behind the scenes we have always shown a united front to the outside world but I feel like that wasn't the case here. I personally feel that since then, tension has been high. If the things that were said in the founder chat had been written in the group, I assure you we would all have been removed and banned a long time ago. Things get said in the heat of the moment that can never be taken back and I am a stubborn and probably pretty bitter human being, and I am not known for holding my tongue or forgiving and forgetting.

We’ve always had a vote on decisions and then gone with the majority which never went drastically wrong and seemed like a fair solution most of the time. I have reached a point now where I feel I am in a different place in regards to where I want the campaign to go and what I want it to achieve in comparison to the other founders. I find myself out voted on most things and it has become a struggle to go along with many recent decisions as it’s not the way that I envisaged the campaign or the group going forward.  It’s impossible to move forward when there’s no trust or respect for one another. Where there’s passion there’s fire, and my fire erupted.

In no way has my passion for raising awareness and funds for IBD been extinguished so I find myself considering what I can do next, to make a difference in the way I DO envisage and considering who would embark on this journey with me. I am now in a position where I am fortunate enough to know people within the IBD community that I know are on the same level. I am not willing to give up fighting for what I believe in just because I can no longer do it under the #GetYourBellyOut umbrella.

I thought long and hard about what I needed to do for the sake of my health, my sanity and my self-respect. I figured out where I want to go and who I want to get there with. I am a great believer in the fact that you have to make your own happiness, it’s not something that anyone can make for you and the only way you can do that is by being true to yourself. I need to fight for what I believe in WITH people that I believe in. I know there are many people who are going to feel like I have let them down and for that I am truly sorry. 

So what started as a few ideas, has been mulled over and adapted with some very special people and has now been developed in to an idea that we actually want to run with.

So what is next?

The glowing embers of my scorched heart have been reignited and like a phoenix from the sooty ashes has risen the #IBDSuperHeroes.


We are NOT in any way competing with #GetYourBellyOut, the funds raised will be going in a different direction and the group will be the heart of the project and the members the engine with which we will drive it forward. We aim to build a community, fighting together for one main goal - to find a cure for IBD. Money raised will fund research in to finding a cure for Inflammatory Bowel Disease. Group members will be involved every step of the way, from contributing to fundraising ideas and voting every quarter for the winner, to being involved with the planning, promotion and execution of the chosen idea.

Success will not be measured by numbers. The success of the #IBDSuperHeroes will be measured by the passion and belief that people have for the cause.

Active #GetYourBellyOut members will already be familiar with the team manning the group. We have Corinne Vanessa Burns, Lisa Cummins, Roger Pasfield, Stephen Gomm, AJ Mooney, Lee Kelly and as an added bonus, Rogers better half Kelly Pasfield who will be able to view things from a different perspective, the one of a partner to an IBD sufferer.  

If you want to know more, check out #IBDSuperHeroes