Friday, 24 April 2015

Bloated Question

I’m pretty much convinced I’ve suffered from Crohn’s Disease the majority of my life. While I wasn’t diagnosed until I was 26 years old; it was in receiving that eventual diagnosis that everything up to that point suddenly fell into place. All the illnesses I’d had since birth, all the moments growing up when I knew something was wrong and that my body wasn’t ‘normal’; all of those things had suddenly been granted an explanation. Ok it may not have been the one I was hoping for, but it was an explanation nevertheless. It almost instantly lifted a massive weight off my shoulders I’d never really known shouldn’t have been there.

For a time after my diagnosis, I wondered whether my life would have been easier had I not known I was ill. It was entirely infeasible of course, but it was nice to daydream and pretend it was possible to go back to being pre-disease ‘me’.
In fact it’s a suggestion I’ve heard someone ask a friend recently;

“What if you didn’t know anything was wrong, maybe you wouldn’t play on it so much”

Now, allow me to break that sentence down to its component parts, and, if I may, use myself as an example.
Certainly for me, the idea of ‘not knowing’ would have been impossible – I was in such unbearable pain that I couldn’t have simply ‘adapted’ to it. (And believe me I tried). I required medication, and surgery, long term treatment programs and education. None of that can simply be brushed under the proverbial carpet. I could have decided just to lie in agony day after day, quit my job and never stand upright again. Never eat, drink or sleep, never engage in sexual horse-play or dance to Abba for 3hrs straight. Obviously all of that would kill me – Abba are too hard to resist for a start and I’d surely die never hearing Chiquitita again. But then I’d have been giving up, accepting my illness and living in ignorance and fear, never seeing a doctor. Being STUPID.

In the aforementioned question alone, the word ‘wrong’ is used; meaning the poser of said q was aware that there is something intrinsically wrong with having a chronic illness. Right? So, as we are taught from a very young age, when something is wrong, we fix it. In the case of Crohn’s Disease and many other incurable illnesses, the experts and ourselves, can only work together to get so far in terms of ‘fixing’ our bodies.  There is no cure, therefore there is no quick fix.

Finally, the idea that patients are ‘playing on’ their illnesses is utterly abhorrent to me. It is another nasty reminder that patients are predominantly maligned rather than supported by those outside of our close circles. Don’t get me wrong, I’m well aware there are those hypochondriacs with genuine illnesses too, those who demand attention, assume the worst expect us to praise their bravery in the face of adversity at every available opportunity; but thankfully in my experience they are few and far between. (I’ve shot most of them). The problem lies mainly in those outsiders who often refuse to accept the validity of an illness they can’t see. It’s easier that way to judge and abuse rather than educating yourself. This attitude of course does untold damage to the self-esteem and outlook of the sufferer they attack. It makes me so disheartened to know there is still such a gleeful lack of understanding all around us. How do patients begin to adapt to a life-changing event when they are made to feel ashamed of their own bodies?
So in conclusion, no, life wouldn’t be easier if we were unaware of our illness. It doesn’t allow us that privilege. It causes pain, sickness, weakness, and fatigue amongst many other gut-churning symptoms. Symptoms that are impossible to ignore.

Fear at speaking out about our illnesses will get us nowhere. The minute we accept something is wrong is the first step to putting it right. It may be embarrassing, and upsetting and everything in-between, but not half as difficult as how we’d feel down the line the longer we leave it. 

Swallow your pride, take back the ownership of your body, and work towards a happier future. ‘Play on it’ for a while if you want; who cares? I for one wont judge. I got 5 packets of Jaffa Cakes and a barrel load of man hugs out of mine.  

Thursday, 23 April 2015

'Travel Time' - #HAMWC

Today's Prompt - 'If you could travel anywhere in the world, where would you go and why? Maybe you’ve already travelled to an exciting place and want to go back!'

I'm pretty inexperienced in travelling with chronic illness as I haven’t had the chance to fly the coop since my Crohn’s diagnosis in 2010. The furthest I've gone is from my home in Scotland, down to England when I was asked to speak at a conference held in honour of World IBD Day. 

That in itself was scary. 

I flew down to Birmingham for the meet-up, then travelled by train to my hotel. I went by myself, which in hindsight wasn't the best idea, but it was exciting and new at the time. It was a self-inflicted show of independence and courage: I wanted to prove to myself, and everyone around me I could do it all by myself like a big girl, without anyone playing nursemaid en route. I did it - and spoke to a room full of people about my Crohn's journey and how I became a blogger. It was terrifying and intimidating but a huge step forward for me in terms of gaining confidence about my abilities and my disease. 

In terms of places I love to visit, one of my top three would have to be Holland. I've been several times now since my late teens, at very different stages in my life, and have adored it every time. The last time I went it was with my partner way back in 2009 (I think). We were there for 2 weeks and for about 90% of that time I was feeling distinctly below par. I was seriously ill but didn't realise it at the time. I was lethargic and nauseous, had next to no appetite, was constantly getting up close and personal with the porcelain, and could barely muster the energy to drag myself out of bed in the morning. 
I didn't understand what was wrong with me, and felt I was ruining what should have been an amazing romantic break for my partner and I.

I couldn't explain my state to him, because I didn't understand it. I felt beyond awful but like nothing I’d experienced before. I was in pain ALL THE TIME and was almost inexplicably lazy. I had zero enthusiasm for anything and trying to feign it just made matters worse. I was in one of the most beautiful places in the world with the man I loved, yet all I wanted to do was lie in bed. 

12 months later I’d had a part of my bowel removed as I was slowly fading away through severe Crohn’s Disease. 

I’d like to return to my favourite place again with my favourite man in existence. If James Spader is unavailable it’d be nice to take my boyfriend too. 
So, so much to adore; the tulips! The coffee! The canals! The bikes! The accent that I'm never likely to perfect no matter how hard I try! 
I want to be well enough to travel again and do it without anxiety and fear of the unknown. I hope that’s possible. I want to see the world before I'm too old to see at all, and now I know what I'm dealing with, I’ll do everything in my power to ensure my disease never stops me doing just that.

This post was written as part of WEGO Health's Monthly Writers Challenge - #HAWMC 

Sunday, 19 April 2015

'Stress Awareness Month' - #HAWMC

Today's Prompt - 'What’s the best way you deal with stress? How do you like to let loose to escape common stresses?'

Stress is one of the most common asides in living with chronic illness. The idea that we have to factor our condition into everything we do is already stressful enough in itself, then factor in the pain we feel, the medication we take, all the appointments to keep track of, the worry about our future and how our condition affects those we love.

It can be incredible the impact other peoples actions can have on our mood and outlook too. I can find myself drawn into the most seemingly insignificant drama on a daily basis. People around me complaining about the most mundane and irrelevant nonsense and I’m usually at a loss to steer clear. These ‘problems’ are usually easily resolvable, borne of frustration, and an attempted avoidance of real-life-actual worries.  

Or they are just dafties; also a real possibility.

After being advised last year, after a few therapy sessions, that I suffer from stress and anxiety, I’ve learnt a few methods of my own in order to remind myself not to get caught up in a daily web of discomfort.
Firstly, I try to remind myself that I have a chronic illness; the symptoms of which are exacerbated by stress. Therefore it’s physically dangerous for me to involve myself in someone else’s argumentative minefield. When this mental reminder doesn’t work, the unbearable burning in my diseased intestines is generally a more forceful form of encouragement. I have some other calming tools up my sleeves, such as replaying the lyrics to one of my favourite songs over in my head when I’m in intense pain - (it helps to keep my mind focused on something else). I also take some alone-time to myself, into the toilet if necessary (I'm in there a lot of the day anyway) and close my eyes. I think of two colours and visualize them; breathe in with red and out with yellow for example, until I feel my heart rate slow down and my muscles begin to relax.

Of course just because these quick-fixes often work for me, certainly doesn’t mean they will work for you; but much like intercourse and macaroni cheese with bacon they are always worth a try. They are also in direct correlation to the extent of the situation you are getting anxious about. If it’s something as regular as meeting a stranger, then quick calming methods may work to ease the stress of what to say and what to do and if you have herbs in your teeth from that pizza at lunch. But if you are dealing with something as horrific as devastating grief or a major shift in your lifestyle for example, then you may find yourself in a stress-shaped-hole you struggle to climb out of.

Anxiety and chronic illness go hand in sweaty-palmed hand.

It can be nigh on impossible to ignore when you find yourself in the unfortunate position of suddenly having to factor your illness into every aspect of your life. For IBD patients, something as outwardly simple as finding the nearest toilet in a strange place, can fill us with dread quicker than being asked if you "come here often" by a seedy suited business man in a nightclub. Although coincidentally that's how I met my first husband. JOKE I don’t have a husband! He's been chopped up in my car boot for saying "I don’t look ill" in 2002.

Alongside the more obvious worries in being diagnosed with a chronic illness, you also have the worry of how your body will inevitably change, if you will lose the use of certain bodily functions, what side affects you will have from medications and what grotesque treatments you will have to endure; there can also be a myriad of other stresses you hadn't previously considered. Anxieties over the progression of relationships and if your employer will accept you potentially not being able to perform as you once did. Worries about performance levels dropping at work can also often be more overwhelming than a man in his twilight years surfing the net for Viagra after a first date. Again coincidentally how I met my second husband.

Of course there is no 'quick-fix' here, like most conditions it’s trial and error in finding what works for you. Looking at your problems in a more rational and in-depth way may also help to iron out some of the underlying issues causing your anxiety. Sometimes this needs someone else to coax it out of you - preferably an outsider if possible as family and friends worrying about you can often compound your anxieties. Talking is a great first step. Like the aforementioned macaroni cheese; little and often. Don't worry that you will push people away by opening up - it's one of the bravest things you can do, and those who love you will have nothing but respect for you. If you feel trapped and afraid, and are sinking in metaphorical quicksand then reach out and accept help when it's given. You don’t have to 'put up with' feeling this way and you don't have to be alone with it either. On the other side of the anxiety coin, if you see someone suffering and stuck in a downtown funk then offer your hand to help them up. Coincidentally how I met my 3rd husband, Bruno Mars. 

This post was written as part of WEGO Health's Activist Writers Monthly Challenge - #HAWMC

Saturday, 18 April 2015

Hips Don't Cry

The other day, when trying on a series of potential outfits for a night out, I looked in the mirror and did a little twirl. I felt good. I looked good. At least for approximately a tenth of a second. My confidence in my own appearance was then abruptly bombarded with a rapid-fire series of hard 'truths'. Let me quickly run through just a few of those thoughts to give you an idea of what it's like for a woman looking at herself in a pretty dress; 

- Jesus look at your hips one is higher than the other
- Your whole body is squint how is that possible?
- When did your hips get that weird shape? How do we change that?
- Your stomach is sticking out again. GREAT.
- Is that bloat or actual fat? PIG.
- This dress is hanging all wrong. 
- Muffin top ALERT.
- Boobs are squint. 
- Four boobs and back fat.
- Your legs are too skinny you look like you'll topple over. 
- Too much cleavage you'll look loose
- Look at your daft face. 

Fun eh?! There's just a snippet of just some of the nastiness that flew around my head in almost the same moment I considered myself vaguely attractive. I instantly felt despondent and resigned myself to wearing a bin bag with a bit of rope tied around the middle instead of ever considering a dress again. But not pulled too tight obviously; I'd only accentuate those lumpy bits. Actually sod it I'll just tie the rope round my neck and be done with it. I'm already in a bin bag so my gargantuan body would be relatively easy to dispose of. 

Anyway, a few days passed and I was blessed to receive some random abuse online for "portraying an idealised view" of living with chronic illness. I was advised by this complete stranger that I'm "skinny" and needn't worry about my weight because my "disease does it" for me. 

I instantly felt the confidence I'd lost in front of the mirror return with a vengeance.

I firstly felt angry though, because those comments reminded me that there are incredibly ignorant and rude people in the world who want to bring nothing but misery to strangers. STRANGERS. How utterly inane. It reverted me back to childhood and learning that when a boy is mean to you and pulls your ponytail it's because he really just wants to be your friend/girlfriend and doesn't know how to communicate those feelings yet. Online Neanderthals who bully and insult women by tapping nonsensical rubbish are nothing but idiotic little boys who have no idea who to approach a human being with anything other than bile and ingrained and incomprehensible hatred. 

I don't understand it and can't (and won't) begin to try.

But I do think it's important not to ignore it. I responded to this particular prematurely ejaculated spurt of drivel, by posting a picture of my own "skinny" body and all it's imagined flaws. Not because I wanted to justify myself, but because I couldn't bear the thought of young, vulnerable women being subjected to cruelty simply because they have the courage to enjoy their lives, and love their bodies. 

Have you any idea how heartbreaking it is when you are told you have an incurable illness? Imagine then, that same horror but as a child, or a blossoming young woman. It's difficult enough growing up and being told everything about your body is wrong, without that torture being compounded by an illness that will change your body beyond perhaps all recognition. 

Nobody is perfect; we all say hurtful things about one another. But no BODY is perfect either: why should we strive for 'perfection' when everyone has an individual idea of what that is? How stupid! 
I don't want a perfect body because I haven't got the first clue what that might entail. I just want to be happy. If that means I eat a cake or 5 then who the hell cares? I can't often eat and enjoy food as I'm generally in excruciating pain, vomiting or passing everything but my colon into the bathroom porcelain, so when I have the opportunity to get pleasure from food, I grab it like online trolls grab their penises when Pamela Anderson runs across the beach in Baywatch. (Or whatever kind of woman they consider to be 'perfect'). I don't know what that means, and neither do they because I'd wager the only breast they've encountered in life is their mothers and or a fried chicken one. 

But I digress. My point remains; women, and humans in general, are individuals and we all find beauty in different things. Isn't that amazing? Imagine everyone liking the same thing? How BORING. I'm not saying I'm now 100% comfortable with my own body, but my post-mirror reflection has taught me that it doesn't matter. I don't have to destroy my own confidence; there are always people out there wiling to help out with that one! 
Loving our own bodies despite what strangers/ doctors/ anyone else with a pulse may say is a vital starting place for adapting to any form of illness, and really any form of life. 

We all need to learn to be our own cheerleaders. 
If that's too difficult a place to start then give me a call. I've been told I have great Pom Poms. 

Friday, 17 April 2015

'Life Goal' - #HAWMC

Today's Prompt: 'What’s one thing that your 10-year-old self thought you would do? Can you still do it? How would you approach it to make it happen?'

Hi Kath! (aged 10)

You call yourself that instead of Kathleen now. Pretty cool eh?!
Is ‘cool’ a cool thing to say? What do I know; I’m the 31yr old version of you. And that’s OLD right? Yes, yes it is.

Anyway what did we want to do at 10years old? Well we wanted to write and paint and marry Dave Grohl. As we both know only two of those goals are achievable; we’re a terrible painter. So writing? About what? At 10 we liked to write ghost stories and draw comic books. Usually pretty graphic with those illustrations weren’t we? Heads exploding and people being stabbed…. Maybe not the best thing to show Gran that time she had a stomach bug but never mind, we live and learn. And what to paint? Still lives and cats usually. Still an ongoing inspiration those feline pals. However we met boys and got distracted, yes you can draw and write about those boys but try not to let them distract you from study and seeing the world. In terms of us still making our goals happen – we can, and do. Not perhaps in the way you imagine – you don’t have an art studio and we eventually get am ACTUAL COMPUTER instead of a typewriter that sounds like a tiny toed elephant quick-stepping across the landing from downstairs.

You also didn’t have an incurable illness back then. Thankfully.
I always think how much it must suck having Crohn’s Disease as a child. Or any disease for that matter.

But I’m getting ahead of myself again – you don’t know what Crohn’s is yet. It’ll feel like you can’t achieve all you want to in life when you are told you’re sick. Don’t listen to yourself! You’re not always right. You might worry that having a chronic illness will stop you painting, drawing, achieving your goal of becoming Dave Grohl’s wife; don’t worry. Life doesn’t end when you get this disease – in some ways it begins again. You will discover an abundance of love you didn't think was possible from those around you. You’ll find yourself reinvigorated and will challenge yourself to draw and paint and write. WRITE things like THIS! You will write for you and for people like you – it will make you feel good in a way you might never have thought would be possible again.

Don’t ever give up!
Also, Dave Grohl will marry another woman but it’s just a stop-gap.


Kath 31 and a half xxx

This post was written as part of WEGO Health's Activist Writers Monthly Challenge - #HAWMC

Wednesday, 15 April 2015

Tears of a Crohn

It has been brought to my attention lately, through discussions with loved ones, that I can be too light-hearted about my illness. I'm not sure I entirely agree with this, as for one I find that laughing at my predicament has helped me massively, in overcoming the more grim obstacles having a chronic illness puts in my way. Having had this suggested however, has made me rethink how I communicate my sickly 'news' to my family and friends.
Up to now I've declared things such as changes in medication, major side effects and potential outcomes to treatments and procedures, with a fairly laidback "ah well" jolliness. I try to be ‘IT’S OK’ about it because by that point (for me) it usually is. As I've had time to digest these horrid nuggets of news and potential glimpses at my future myself, before telling others.
The calculation usually goes   me + doctor = bombshell x confusion.
I have time afterwards to think over what has been said and consider all outcomes and how I'll cope with them. I also have time to fall apart and put myself back together again before burdening anyone else with tears and tantrums. Of course those of you reading this who know me, are already furious and shouting at your screen that I should be talking about my worries and that I’m not a burden blah blah blah… I KNOW - but it’s still my disease and I have to process what’s happening to my body in my own way.

So how much consideration should be allowed when considering others reactions to my treatment?

It’s a question I'm at a bit of a loss to answer. Maybe you can help me out? Do I tell you facts with no emotion? Do I weep outwardly and upset you in the process? Do I drag all of you into the doctors’ office with me and let him do the work?

None of this is sarcasm by the way, I genuinely don’t know how to do this. I want those around me to understand the complexities of living with this, yet feel comfortable enough in talking to me without applying head-tilting pity, or assuming I'm always just an inch away from a nervous breakdown. 'I'm fine' is a phrase I've been programmed over the past few years to gradually phase out of my vocabulary because it means nothing and is generally a flat lie. But if I can’t laugh at what’s happening how do I communicate it to you?
I do understand that cold hard facts that may have a massive bearing on my future health aren’t easy to express - I know this because it’s me who has to do it. I also know that stating potentially frightening possibilities is similarly heart-breaking for those who don’t have to live with the threat of bad-bowel news headlines hanging over them every day. But where does the line lie between laughing and crying? It seems my news must always be peppered with the misery society assumes it must deserve, and in reality that’s not how I want to live my life, or look at my illness. So whilst I'll try to look objectively at my comical relay of potential side effects such as nausea/vomiting and/or death , you too must consider how you react: don’t treat me like I'm made of glass, and don’t make my disease about you.

Please don’t assume that I hide my real feelings behind LOLs like the tears of a clown; I'm not half as pale and vastly more sparing when applying blusher. 

Monday, 13 April 2015

'Perfect Comeback' - #HAWMC

Todays Prompt- 'Tell us about a time when you felt marginalised or stigmatised by someone because of your health condition. What did you say or what would you have said?' 

Mainly due to the 'invisibility' of Crohn's Disease (and I'd imagine, most chronic illnesses), it can be incredibly difficult to express the complexities of the condition to outsiders. Not that we should have to, of course, but in some cases it's all but vital. 
Often the fact that the majority of my symptoms take place under this cloak of invisibility can be a blessing; I can conceal my illness if I choose to, and if people around me were to see the state if what's taking place underneath my skin, they'd most likely vomit on sight and/or disown me. 

Many of my symptoms ARE visible however, such as hair loss, my complexion, dry skin, fevers and shivers. Like many men and women in the same diseased boat as myself, I often feel I look rancid and unpleasant to the outside world because that's how I feel on the inside. It's hard to encourage yourself to dress up and slap on make-up when your skin is flaking and your hair is falling out in the shower. 
So why, just because strangers can't see all of that, should we have to explain ourselves? 

In terms of 'perfect comebacks', when considering one particular case, it was impossible to pin down. Over the years I've been patronised by nurses, employers, FRIENDS, and complete strangers about the ins and most commonly outs, of my condition. Let me just reiterate that: MY condition. It's hard enough to come to terms with having an incurable illness without being told what you should and shouldn't be doing. How you should and shouldn't be acting, and when you should just (wo)MAN UP AND GET OVER IT. 
It's incredible how quickly you become a 'patient' instead of a person when you have a chronic illness. Someone to be looked after and pandered to, someone who must be shielded from stress and bad news in case it serves to make matters worse. It may not feel like it, but that's just about the most insulting thing you can do - we are fighting on a daily basis to maintain some semblance of our identity post-disease, to chip away at that even further is more damaging that you can even begin to understand. 

I often wish I could hit back with a smarty-pants zinger in retort to the idiotic or insulting comments I hear about my condition on a daily basis. Sometimes I do. But it doesn't necessarily please me afterwards. In fact I feel like a bit of a failure; that I've missed another opportunity to educate. 
So now I try to do just that rather than getting defensive. 
When someone tells me they know how I feel because they've eaten a dodgy curry last night, I bite my tongue and calmly and briefly as I can, explain the intricacies of my disease. This isn't always the easy part. I tell them it's incurable and how it can be hurtful when comments are made through, what I'm sure must only be inadvertent ignorance. I don't insult or offend - I simply state my case and cross my fingers that they'll think twice before making the same error in judgement again. 

Or, if that approach fails I chop then into tiny pieces and bury them under my patio. 


This post was written as part of WEGO Health's Activist Writers Monthly Challenge - #HAWMC

Friday, 10 April 2015

'Things Remembered' - #HAWMC

Today's Prompt: 'What is an item you have kept with you that reminds you of an important time in your life?'

I've kept lots of ‘things’ over the years. As my parents would profess, I'm renowned for being a bit of a hoarder. I’d keep anything and everything in my youth. Little things that remind me of happy times; love letters from when I thought I knew what love was, gig tickets covered in sweat and booze, birthday cards, get- well cards, blurry Polaroids from before Polaroids were ‘vintage’ and a black tulip bulb my beloved brought me from Holland that I can’t bring myself to plant in case it dies on me. Amongst other things.

But the one thing that remains constant, and that I can’t bring myself to dispose of is my diary. I've kept a diary since I was 14 years old. I'm now 31. Not the same diary OBVIOUSLY – it would be incredibly heavy and have cost an absolute fortune in paper. Don’t be such an idiot.

My diary has been an outlet for years and years of teenage angst, heartbreak, happiness and anxiety. From my early teens to my thirties I've had somewhere to channel my feelings and emotions over everything from the banal of an argument with my Mum because I hadn't made my bed properly AGAIN, to the devastation of leaving my fiancé practically at the altar. 
My diary has helped me in countless ways; it allows me to express thoughts I would never say out loud, think through major decisions and make conclusions about my next steps in life. 

It’s a silent comfort. 

When I was diagnosed with Crohn's I wasn't honest with my diary for the first time in my life. I lied to myself. Literally. Although mines were the only eyes my pages would ever see, I still couldn't bring myself to express how I felt. I'm not sure why this was; perhaps straight up denial – if I was to put this down in actual words it would become real. It would be a ‘thing’, a stain on my pages for all eternity. I hated everything about what was happening to me and I used my diary instead as an escape rather than a confessional. Eventually as my hospital stays began to last longer, and I became lonelier, I began to seek refuge in my dusty pages again. I tentatively started to document my day to day life as a newly diseased woman. I realised I'd written on everything notable in my life to date so why stop now just because it was hard to put into words.

I have difficulty reading those pages now, years later. I was so, so angry. Then the anger turned to sadness, then abject misery and disillusionment. My main focus was on myself and my pain, but my parents run through my words like a vein. I was devastated that they were hurting. I was angry at being put in the position where I had to be looked after again. I was an adult yet I was suddenly regressed back to childhood against my will. My diary is a stark reminder of just how ill I was both physically and mentally.

Keeping a journal became keeping a blog - the blog you are reading now in fact! I don't often talk about my condition in my leather bound pages now because i share it with al of you. Terrifying as that prospect once was it is now one of the biggest comforts I have in living with chronic illness. It allows me to share with the world something I was once too afraid to share with myself. 
My diary is for me, and all of you. I carry it with me to remind myself of all I have achieved and to document all I will achieve in the days to come. Everyday is page one, until I reach page none. 

This post was written as part of WEGO Health's Writers Activist Monthly Challenge - #HAWMC

Tuesday, 7 April 2015

'My Hero' - #HAWMC

Today's Prompt: 'Who are your heroes and what makes then awesome in your eyes?'

I've never really condsidered anyone to be my 'hero'. It seems such a strong word; evokes so much in terms of bravery and selflessness. 
Mainly I suppose I'm not a fan of the word 'hero' because it seems to be used so readily. I always think of cartoon or fictional 'heroes' when I hear it. Like Tarzan swooping in from a branch to rescue a scantily clad beauty from the jaws of a salivating tiger. Or Batman punching robbers with SWAG bags to rescue an old lady from having her priceless pearls pinched. These heroes are always selfless and brave, they risk their own lives to save others and expect nothing in return. They also aren't real.

When I think of 'real-life' heroes in my own life, I have to scale it down a little, and forget about capes, and pants worn over tights. unfortunatley, as those are two of the things i think about most in any given day. My main heroes don’t have any special skills, they don’t own sparkly costumes and they certainly don’t know kung fu.

My parents are two of my heroes. They love me and my brothers' unconditionally, and  teach us how to laugh and to give and accept love. They have shown me what perserverance and courage can do, and have made me feel safe and comforted from birth to the present day.
They pick me up when my heart and body is broken, put me back together again and never expect anything from me other than to be me. They are proud of me when I'm far from proud of myself, they have taught me forgiveness and generosity, and to valuable others happiness every bit as much as your own.

My partner is my other hero. Although we may have had more up and downs in our lengthy relationship that Burton and Taylor, (albeit with fewer marriages), we have worked together to maintain something quite wonderful. He has shown me how to look at my 'flaws' for what they are; part of me and nothing to ever feel shame or anger about. I'm proud of him a little bit more everyday for everything he has achieved and everything I know he will achieve in the years to come. I'm honoured I get to be a part of his life and constantly flattered he even entertains the idea of being part of mine. He makes me laugh 'til my sides hurt and when my sides hurt he looks after me.

He calms me down in that way that love does.

When I became ill it didn’t even enter his head to do anything other than support me, when others would have (and did) run a mile. He's my hero not because he defends my honour in bar fights (although he would), or because he scales the side of buildings to save me from a possesive gorilla (although he would), but because he has shown me what it means to feel truly happy.

Everyday heroes are better than comic-bok heroes because they are real. And punch less.

Last but not least, my friends, and all of you battling chronic and debilitating illnesses everyday are my absolute heroes. You all inspire and motivate me to be he very best version of myself in spite of my condition. Your words of encouragement even on my darkest days heal more than any medication. When I see what so many of you achieve despite counless obstacles standing in your way, it only serves to give me the kick up the backside we all sometimes sorely need.

You are heroes to me because you are thriving rather than just surviving.

This post was written as part of WEGO Health's Writers Activist Monthly Challenge - #HAWMC

Monday, 6 April 2015

'Breaking News' - #HAWMC

Today's Prompt - 'The top story of today is…YOU. Share with your readers your proudest accomplishments in the last 5 years. Don’t be shy, tell us everything!'

Today’s prompt was a tricky one for me, as tooting my own horn is something I find incredibly difficult. I gave up playing the trumpet aged 8 for starters, so to try and get a tune out of it again now at 31, well it would just be disastrous. 
I always was shy and unassuming, but since my diagnosis my lack of self-confidence took a major nosedive. I was suddenly thrust into the murky depths of an illness I couldn't begin to understand; my body had changed in seemingly every way possible, I felt physically and mentally unappealing, and my outlook on life had changed almost beyond recognition seemingly overnight. It was terrifying. 

Sometimes it still is. 

Occasionally I'm hit with a stark reminder of how much my life has changed since Crohn's slithered into it, and in those moments I feel the fear and panic I did back then all over again. I regress 7 years in an instant and my panic at the unknown is palpable. 

So, in answer to WEGO Health’s question, I’d say one of my proudest accomplishments has been overcoming my fear, and entering the world as a ‘diseased’ person with something more than just trepidation; something like enthusiasm and courage. 
I've learnt, (slowly), that living day to day with a chronic illness is something that requires a lot of work, both mentally and physically. That I must learn to listen to my body and accept that sometimes it might be best for my health in the long term, to slow down

I've learnt that there is no shame in admitting you need help, and that accepting that help isn't a sign of weakness, but one of strength. An ‘accomplishment’ to someone with an incurable and chronic illness can be something as small as making it through a full day without needing a nap. Or managing to go out with friends and not feeling utterly exhausted after an hour. That may seem poultry to some, but to me it's a little piece of daily encouragement that helps me to keep my head up when I feel at my weakest. 

This post was written as part of WEGO Health's Activist Writers Monthly Challenge - #HAWMC 

'Creature of Habit' - #HAWMC

Today's Prompt - 'What good habits, (health or otherwise,) do you have? Do you have a routine that you follow every morning? Are there any bad habits you wish you could break?'

I have a daily routine; in so much as I get up at the same time every day in order to get to work on time. I leave myself enough to get showered, dressed and ready, to prepare my lunch and all the other mundane day to day things required. I stick to the same bus timetable and I have my dinner at roughly the same time at night after work is over. But other than it being a routine out of necessity, it’s not a planned and regulated routine. 

I think sometimes I’d maybe like to have one of those, or at least to be able to find the energy to make things a little more regimented, but I also like to live my life day to day. Having IBD takes away so much of the control from you that it’s vital you relish every opportunity to grasp some of that back for yourself. 

So when I'm able I make plans. 

I try not to make those plans too far in advance, as I tend to feel it’s detrimental to my mood if I can’t follow through on arrangements. It’s a big shift from the days when I could fill up my social diary months in advance; now I'm lucky to be able to plan each day of the week. If I manage to achieve all my goals it’s a great feeling of victory. I've realised it’s not a massive negative to have relinquished some of the control to Crohn’s Disease. It’s an unfortunate necessity and one which has to happen every now and then in order to feel at my best. 

In terms of habits I wish I could break, I suppose metaphorically beating myself up when I can’t do certain things, would be top of the list there. I'm learning it’s OK not to do as much as I used to, and find happiness and pleasure in things which require a little less of me. I try to break the habit of punishing myself and apologising to others for my disease on a daily basis. I'm not entirely sure it’s a routine I’ll ever get out of, but it’s one I could do without. I try to routinely praise myself for what I can do, and stop hating on myself for what my disease ensures I can’t. 

This post was written as part of WEGO Health's Activist Writers Monthly Challenge - #HAWMC 

Friday, 3 April 2015

'Good Samaritan' - #HAWMC

Today's prompt; 'We love random acts of kindness. Write about a time that you benefited from the kindness of a stranger, or a time when you were the one extending a helping hand. How did you feel?'

There are many occasions where I've been a 'good samaritan'. Like that time I helped a pensioner cross the road safely, or when I didn't laugh too long as my brothers' new bike directed him face-first into a fence, or that time I let a tramp handing out charity stickers press said sticker onto my chest for 5 seconds longer than was socially/lawfully acceptable. But as I don’t want this post to run on for over 100 pages, I should shy away from talking about my own acts of self-less heroism and focus on an occasion where I benefited from someone else's kindness. 

Although I've been showered with love and compassion from almost everyone around me since my diagnosis, one of the examples of kindness I cherish above most, comes from a complete stranger. 

When I was around 26 and experiencing another yet stay in the worlds bleakest hotel, known as hospital, I was LOW. I was seriously ill, and my partner and I were in the midst of buying our dream home. I was useless to him, stuck in bed attached to a drip and leaving him to handle BIG 'couple-things' on his own. This house and the excitement of us finally living side by side was a glimmer of hope in what seemed like a downward spiral of bad-news. 

He called me around midday to tell me we had lost out on the house. 

I was inconsolable. Embarrassingly so. And I was alone. 

Being alone can be dangerous, especially when your head, and body is filled with nothing but bad news and various unappetising cocktails of drugs. All I could do was think about the negative. I'd had every room in that house decorated to within an inch of its life (in my head). I’d foreseen where he would sit and watch TV and where I would sit and watch him watch TV like the love-struck fantasist I was. Suddenly all my plans were relegated to the bench and my hopes for our future seemed bleaker than that book 'Bleak house' which was about a bleak house or something. 

Anyway, I was devastated and nothing anyone said seemed to help. I realise now it was just the final straw; I'd been feeling depressed for a long time and this having been taken away from me seemed like I'd lost the only piece of control I'd had left. I sobbed and sobbed. Each time the nurses pulled the curtain around me open I'd struggle up and pull it closed. I wanted to be alone in my misery and the other ladies in my ward, with a combined age of approximately 355845, offered little comfort or conversation. They didn't seem interested in the intricacies of Beyoncé's new single and I wasn't especially interested in shouting "NURSE" and soiling myself 5 times a day so we had little in common. 

My main visitor was a male nurse, he walked in to give me a telling off for the consistent curtain-closing and was met by floods of tears. He asked if I was OK, I said no and he walked off. He had been panicked by a hysterical woman and that just made me angrier and more ashamed at my mortifying predicament. I raged internally about him most of the day after that, which didn't make me feel any better, but it had stopped me crying, which was good, as my eyes had become so dry that I was close to getting fresh tears shipped in from Gwyneth Paltrow's Oscar speech leftovers. 

However, that night an unexpected and wonderful thing happened. 

It was the middle of the night, I'd had no visitors, I was lonely and couldn't sleep, and YET AGAIN found my curtain being pulled back. This time though it was by an older nurse; she smiled and sat beside me, and told me that the male nurse who'd been in the ward earlier, said I'd been "having a bad day and could do with some looking after". I instantly felt awful for internally scolding him. I was also reluctant to go over everything again, but she took my hand, asked If wanted to talk about it, and looked so genuine and kind that I started to well up all over again. I relayed my sorry tale and she sympathised and sat with me for much MUCH longer than she needed to, told me that things always seem worse than they are when we are in hospital. She was right of course, and it's something I try to remember to this day. 

I have felt hopeless since that day, and when that happens I try to think of that lovely nurse with the smothering bosom who had so much kindness in her eyes that her tears probably smelt like grannies apple-pie and kitten cuddles. But I digress. The compassion she showed me is something she probably shows every weeping stranger on daily basis. I felt embarrassed she had seen me that way for a little while then I realised feeling weak is necessary i order to appreciate feeling strong. 
Offering comfort to someone is so incredibly easy, but can mean so so much to the recipient. 

Try it. 

I'm off to slip into my best bra and buy a charity sticker from a tramp.

This post was written as part of WEGO Health's Activist Writers Monthly Challenge - #HAWMC 

Thursday, 2 April 2015

'Key To Happiness' - #HAWMC

Today's prompt for #HAWMC was: 'What do you think is the key to happiness?'..

‘Laughter is the best medicine’ is about the only cliché I can get on board with. Fair enough for medical professionals I’d imagine it’s rarely advised; as using only laughter as a one-cures-all fix is highly unlikely to work. Especially if you have broken ribs, then I’d wager laughter is just about the worst medicine you could take. But either way, it remains one of my most treasured expressions of joy.  

The key to my happiness is laughter. Hilarity is so utterly vital in maintaining happy relationships, be it romantic or otherwise. My partner for example, makes me laugh until I can’t breathe multiple times a day and having been in (short) relationships with humourless men, I know how unbelievably amazing that ability is. When I make my partner, friends and family laugh it feels like I’ve won a gold medal. I laugh at anything and everything, from someone falling over, to wordy satire about the state of the economy. (But mainly the first one). I’ve put myself in stupid situations to make people laugh, and pulled the ugliest faces known to mankind to generate a giggle. I can’t and refuse to try and understand people who don’t want to revel in laughter. Having a ridiculous and self-depreciating sense of humour saw me through childhood and my teens and deftly helped me swerve being bullied (I had braces, an ironing-board flat chest and boy hair).

I laugh a lot. Mainly at myself and my situation because I’m a ridiculous human being and the course my life has taken over the last few years is one which would leave me in a permanent funk if I didn’t take a step back to LOL at it. I’ve found that blogging and writing about my life with my condition has granted me a wonderful opportunity to remember that I am still alive and kicking. Doing my utmost to make an awful situation decidedly more bearable. When I take a step back to laugh at the moments when I’ve been bent over in a roomful of medical students with my most intimate areas on show, or when I’ve dropped a poo-sample out of my handbag and had to retrieve it from under a pensioners chair, allow me to remember that these things only feel incredibly embarrassing and curl-into-the-foetal-position-cringeworthy at the time. They are only as bad as you make them out to be. If you chose to laugh at your supposed misfortune instead of weeping and wailing about it, you have no idea the change it will make to your outlook.

Crohn’s disease doesn’t make me happy, it makes my life much harder than it should ever have to be, but the day I stop laughing at myself and the world around me, is the day I give up. Something I can’t ever see happening. For starters I haven’t even mentioned my teenage dress-sense…

This post was written as part of WEGO Health's Activist Writers Monthly Challenge - #HAWMC 

Wednesday, 1 April 2015

'Wordless Wednesday' - #HAWMC

Once again I'll be taking part in WEGO Health's 'Activist Writers Monthly Challenge' also known as #HAWMC! So all throughout April I'll be flooding your Twitter, Facebook and whatever social media I can find with posts provided daily through the medium of prompts by WEGO Health themselves. 

Today is Day 1! 
Prompt: Post a picture that shows how excited you are for the next 30 days! 

You can get involved yourself by signing up here: 

or just spread the love by sharing our posts or reading our ramblings! Ok love you bye! xox