Sunday, 27 September 2015

Holding Back The Rears

When I tell you I like modern art, why do you tell me you hate it? Why do you tell me you don’t understand it? That it’s pointless? Or that you think it’s all commercialised; not like the old days, and that these youngsters can’t ‘draw’ or paint, and that’s not art.
Why is our first reaction to take an opposing view to the joy in others’ lives rather than learn about it?  
I must admit before I properly begin, that I am not excusing myself from this generalisation; I am just as guilty of closing down in an instant when someone tries to explain an equation to me or make me complete a sum. Maths and numbers have always terrified me and as a child I found solace elsewhere, in a book or a sketch pad, as an adult my safety net is in simply stating my disinterest. Bluntly.  

This strange habit of bashing others views simply because we don’t agree with them, or merely fully understand them, spans across all areas of life. From the importance of talking political standpoints, to the mundane of disagreeing on giving a film five stars out of five. Dirty Dancing is a solid FYI. No arguments.

The same habit occurs regularly when the subject of illness rears its head. Our first reaction is almost always to either head-tilt in faux sympathy or instantly compare and contrast with your ‘brother/mother/sister/greatgreatgreat grandmother who had that…’.

Why not ask us about it? Ask me about my Crohn’s. Ask me how I am and what it entails. Why not? What’s the worst that could happen? I’m not going to spontaneously rage-combust, or punch you, or direct an an alien to burst out of my stomach if you say the wrong thing. Although how cool would that be if I could?! Dinner parties would suddenly become more interesting. And messier. Small talk would be eliminated with a swift lift of my crop-top.   

Don’t tell me how I should be feeling based on your limited knowledge, or compare my symptoms to your distant relative/cat/someone you saw once on Casualty; listen and maybe learn a little more than you think you already (think) you know. If you have a chronic illness you pretty quickly become an expert on your own body. Who better to teach you the ways of the colon than someone who’s own nether regions 75% of the Gastro ward staff have had unadulterated access to? That’s right, no one.

We don’t have to agree on everything, (the world would be an incredibly dull place if we did), but we do have to try and be respectful of one another and allow a little room for information to be shared.

However, if you disagree with me that The Name of The Game is the greatest ABBA song of ALL TIME I will fight you to the death. 

Wednesday, 23 September 2015

We Care A Lot

I don’t have a ‘carer’ as such. Not in the traditional sense anyway.

Many of us do. Many of us are unable to work, unable to dress ourselves, unable to ‘be’ without the help of another.

I have a full time job, and am physically fit and healthy enough (the majority of the time) to do pretty much everything for myself. I’m very lucky. I still have a chronic illness though. So at times I need to be cared for. Whether I like it or not, and I usually don’t like it one iota. 
I value my independence massively and when I am too unwell to do even the most basic of tasks and am forced to rely on people around me to pick up my slack, it grates. Big time.

My own ‘carers’ are wide and varied. 
My friends, my family, my love. 
They are self-appointed in this role, and like the superheroes they are they simply don their capes and fly into action whenever they are required. Thankfully they only wear their pants outside their tights indoors and for my own personal LOL’s. This care they offer me comes in what they do for me, both physically and mentally. They help me walk when I falter through pain, they hold my hair back when I’m sick, they make me eat when I don’t want to, they make me laugh when I think I never will, and they remind me life is worth living when I can’t see it for myself. They do all of this with such precision and ninja-like stealth that I’m sometimes sure there is some sort of co-ordination going on behind the scenes.

It’s often such a whirlwind from me being well to being the polar opposite that neither of us really notices we have fallen into the roles of patient and carer. But we do. It seems it’s all effortless on their part. We know it’s far from it.

They make me feel that I am worthy of love and care and that my illness is never a burden, although at my lowest ebb I usually feel like that excess baggage you have to pay over the odds just to get on the plane with you when you didn't really want to bring it in the first place or even go on this stupid holiday I don't know why we cant just go to the caravan its such a waste of money and the waiiiiiiting at the airport don't even get me started…OH MY GOD….

Caring for someone else isn’t easy. It’s exhausting, and a job that generally goes unappreciated or even unnoticed. That isn’t because we don’t appreciate you, or don’t notice what you do; it’s just that it’s normally after the event that we begin to realise what you’ve been doing for us. 
We are ill and miserable and require ‘care’ in the moment – we are generally too concerned with managing pain and sleeping and drifting into drug-induced oblivion to thank you for all you do.

So here I am, thanking you for all you do.  
We appreciate you! Please know that! 
I know we are difficult, and tiring and absolute NIGHTMARES from time to time, but we love you and are always incredibly grateful for your time and attention.  We care for you too. Always. Pants inside or outside your tights, you are my heroes. 

Sunday, 20 September 2015

Crack to the Future

In the early days of my illness, (and BOY OH BOY does that seem like a lifetime ago now); the future wasn’t something I really considered.
If, and when I ever did, it was almost always with negativity and a justly hopeless outlook. I’d focus solely on what I wouldn’t be able to do, what I would be forced to miss out on, and how awful living with the ‘new’ me would be for my loved ones and I. I couldn’t think beyond pain and medication. I couldn’t and wouldn’t see anything past whatever horrible procedures and anal intrusions I’d have to face on an almost daily basis. And that was just my private life! HAHAHAHA! LOL! BOOM! ETC :'( 

I was blinded by nausea, pain and misery. I couldn’t even begin to imagine how I’d be able to piece my life back together with this newly diseased stranger along for the ride. I felt as though I’d changed beyond all recognition and was frustrated that everyone around me couldn’t see that I was suddenly a different person.
I felt ‘altered’.
I was grumpy, irritable and I’m pretty sure a Grade A pain in the neck to be around. Forcing myself to pretend otherwise just led to more of an inner rage that seemed to burn away inside worse than my intestines after chili sauce.

That was over 6 years ago now, when I had decidedly more diseased insides, and definitely less internal organs. Since my diagnosis I’ve honestly lost count of the amount of times men I’ve only just met have inserted intrusive instruments inside me. A phrase I never expected to say unless I’d made the inevitable move from art school into sex-work. It’s on my CV now.
I’ve learnt more about the inner workings of my body than I’d likely ever have known otherwise. I’ve realised my capacity for empathy towards others is huge and my tolerance for hypochondria is MINISCULE. I’ve also appreciated that time genuinely IS a great healer. It allows for grieving, adapting and eventual moving on. Time passes and what was once the most horrendous thing ever to happen to you becomes one you can live with. You become less self-absorbed and realise that having a disease isn’t the most important thing in the world. Let’s face it now Jon Hamm is single that trumps everything.

For those of you who find yourselves in the position of having been recently diagnosed, please remember that although it may feel like it, your life isn’t over. It’s just been altered a little. OK, a lot.
It’s tough and it’s going to be really hard to maintain some semblance of a positive attitude. But do bear in mind that to date there is nothing in your life you haven’t overcome. You will deal with this too. You will.

LIKE A BOSS. Albeit one with shares in wet wipes and a grumbly tummy in board meetings. 

Saturday, 19 September 2015

Hips Don't Lie

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. 

1 Year Post-Op...

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.  

4 years Post-Op, 10 mins into toilet-centered mid-life crisis.

Thursday, 17 September 2015

A Room of Our Crohn

The man I love and I have been together for a decade this week. 10 YEARS he has tolerated my terrible jokes, cat-voice and ownership of the toilet. A SAINT of a man.
When I first met him, we worked together, and I was a relatively healthy and active 22 year-old. Well I’d say, ‘officially’ healthy at that point; no doctor had diagnosed me with anything, but I still felt like something wasn't right with my body about 60% of the time, it just wasn't really an imposing issue at that point. We managed about 5 years together as a ‘normal’ couple before my health took a massive slide. I'm no Maths whiz, but by my calculations, for around half of our time together I've been ‘diseased’.

In the first few months after I’d become ill, everything was a blur of anger, frustration and pain. Getting to the bottom (pun always intended) of what was slowly killing me became my sole priority and my love-life and everything else took a self-imposed back-seat. I feared I’d lose my job and feared I’d lose my life. I feared My Love would inevitably realise he’d unintentionally hitched his wagon to a horse who turned out to be dud.  

Living with chronic illness can make you selfish. Not in any way intentionally; but patients will find they are often taken over by a single-mindedness to either get better, or simply to hibernate and close off from the rest of the world when feeling at our worst.
My Love is thankfully a patient man. In ways I often don't realise. He is tender and kind; qualities I know I far too often take for granted. I probably don't notice the majority of the things he does for me; too wrapped up in my own pain. 

I'm ashamed to admit that in the earlier days of my illness (and even more often than is fair, now), I’ll expect him to play mind reader and somehow know my pain, know what every twinge and jerk meant, know how I felt and what I needed; then if he read me wrong I’d internally curse him for his inability to jump through my invisible hoops. Knowing this cycle of behaviour often doesn't make it any easier to cut out either.
Chronic illness is unforgiving and relentless. It’s impossible to ‘grin and bear’. That doesn't excuse treating the one you love with a disposition they don’t deserve of course. My frustration, (and I'm certain I am not alone in this), is mainly in my inability to ‘heal’ myself. My future often feeling bleak, and my loss of ‘self’. Disease takes so much away from you that you are left piecing your jigsaw back together and finding there’s always a missing part. The picture never looks as it should.

When you are ill, and sad, and feel alone even when you are surrounded by people, you can be left feeling you are not worthy of love. I know, (although I sometimes have to remind myself of the fact), that I too am worthy of everything good in the world and more. I want that for My Love and for us. My disease shouldn't define me, or stand in the way of my relationship. I’ll aim every day to continually appreciate the man I share my life with gifting me his care and attention, and remember that love is two-way. Well for some maybe three-way but that’s for a more X-rated blog.

I don’t love my disease of course, but I do love what it has taught me about my own capacity for it. Limitless and immeasurable.

Sunday, 13 September 2015

Let Me Entertain Loo

Having a chronic illness is exhausting. 


No, I don’t just mean the symptoms, of which there are many; the limitless fatigue, the joint aches, the seemingly endless pain and nausea amongst other decidedly less enjoyable ones. 
I'm thinking more right now of the intense schedule of appointments, and various sessions of poking and prodding to varying degrees we have to endure. 

On top of my full time job I often feel I have another profession trying to keep on top of my jam-packed social diary (by ‘social’ I obviously mean MEDICAL DIARY). There is something wholly depressing about having to make room in your diary for FUN. Let me tell you, it’s pretty dismal having to plan your social invites around medical appointments. These treatment sessions, check-ups, procedures, injections and blood tests, ETC, all must take precedence over partaking in an actual social life. It’s difficult enough holding down a job, keeping a home and managing all the normal responsibilities of day to day life, without having to factor in this constant stream of medical happenings. If I could afford it, I’d hire a P.A solely for the purpose of picking up my prescriptions, handing in samples, arranging my hospital appointments with various consultants, nurses and doctors and reminding me to take my various medications on the clock all day every day. It’s a job my iPhone is already fit to bursting with and one too depressing to buy a Filofax for (plus it’s not 1983 when Filofaxes were actually a ‘thing’). 

It seems a trivial factor of living with Crohn’s Disease, and to a certain extent it is. However it’s another aspect of the illness that makes it inescapable even when you are well.
Constantly attending hospitals and keeping track of what should happen to your arms and/or backside and when, means there really is no ‘break’ from chronic illness. There’s so much planning involved that it’s almost constantly in the back of your mind, (even when it’s not in the forefront of your pain receptors).

I feel pretty disheartened when those weeks arise where I have more medical appointments in my diary then plans with the people I love. I hate having to cancel or rearrange occasions due to illness, or because I’ve been trumped by another hospital letter hitting the mat. I understand of course that keeping on top of my appointments is vital, but that doesn’t make it any less infuriating. Nor does it help my cause to be ‘more’ than my disease. It’s a continual reminder for me and my friends that there is no escaping this.

Not to sound melodramatic, (although I’m well aware I do); but when my illness takes over my having-good-times party-on-excellent, is when it really gets me down.
I try now to get proactive about my medical-schedule and make it less of a chore – I leave myself reminders and set myself alarms so it all becomes more of a routine than a burden. I’ve fallen into more of a trap lately of allowing my disease to take priority over the rest of my life. Not something I’ve done knowingly, however since I’ve noticed it happen I’m trying little by little to change it.
A wee bit at a time, to fit in my ‘sick-life’, around my real life.
Not the other way round. The way it should be. You WAIT until I am ready to see you DISEASE. 

Hopefully, like an unwanted admirer it will eventually take the hint and move on. That’s the DREAM anyway. Leaving me, free as a bird to step up my Jon Hamm stalking regime.

Wednesday, 9 September 2015

Started From The Bottom

As a young woman I always had issues with confidence. Let’s just say I sorely lacked it. I still do, although certainly not to the same extent. This lack of self-confidence wasn’t all in my appearance; (I was a late developer), but also in my own abilities. To do anything really, and certainly not to do it well. Can you imagine?! I also struggled with friendships and relationships as I got older, and probably naively allowed myself to be taken advantage of on more than one occasion. I suppose I assumed (internally) that anyone who wanted to associate with me must have had something a little bit wrong upstairs; in the common sense department. That old 'if you don't love yourself, how can you love anyone else?' chestnut reared its head on too many occasions.

Now of course I love many people. Too many to mention without upsetting someone by forgetting to include them I’d wager. My family, my friends, my love.

I don't love myself as much as I'd like, but maybe enough, now. I tread that fine line between vanity and self-assured. I no longer need or want validation from people around me, or strangers, as I once did. I merely need to be able to look in the mirror and like what I see. Be that a glass or metaphorical mirror.

But what of that elusive self-confidence and living with chronic illness?
I'd say with certainty that my own diagnosis led to several steps back in my search for confidence. I was suddenly thrust from being a young outgoing woman in the prime of her life, to a bed-bound-misery-guts. (Quite literally on the guts front).
I was ashamed of whom I saw when I looked in the mirror: generally Skeletor in heels. I felt 'unclean' somehow. Tarnished. I'd been pushed through the medical ringer and come out looking and feeling utterly washed out. I didn’t even smell like fabric conditioner.

Chronic illness leaves you exhausted. It's a priority in the morning for most of us to GET OUT OF BED, shower and dress in an allocated time. Things which were once done on auto-pilot suddenly become massive feats of superhuman strength and endurance. Most days I'm half way into my bus journey before checking if I've remembered to put a bra on or apply mascara. Our day ahead is almost always entirely dictated by how we feel when we wake up. Therefore where is the time (or enthusiasm) to be found to make an effort to look more like Naomi Campbell and less like Stig of The Dump? It's intangible for me most of the time. 

Lately I've been trying to focus on getting a little fitter. Now that my Infliximab is well under-way I'm starting a little more daily exercise. It's difficult and tiring but I have noticed I'm gaining more energy and feel a lot more positive about myself afterwards. Maybe it’s those happy endorphins or maybe just being proactive helps. I'm not going to become one of those women who only talks about Smoothies and Yoga positions don't worry, I'm just trying to get a little more into the shape and into the state of my mind I feel comfortable in. So far it's working - although I do get a little disheartened on a daily basis when that IBD bloat rears its bulbous head. How's a girl supposed to wear a body-con dress with a baby bump made entirely of mashed potato and swollen guts?

Body confidence (and otherwise) is a constantly evolving process. It can be stunted by illness, and frequently is. It can be knocked down with negativity (from inside or outside) and it can be chipped away at by your own doubts. But essentially what's important is who you want to be. Or even just initially convey. You can take everything a step at a time. Baby steps. Unless I'm behind you in a busy shopping centre, then GET OUT OF MY WAY SLOWCOACH. Don't push yourself to be someone you're not too soon. Let yourself grieve for the former ‘you’ if you need to. I know I did. I often feel like 'Kathleen (Pre-Crohn's)' is a stranger I vaguely remember from my past who used to be a lot of fun then got sick. I don't see her anymore though because she's not important. I look to this new version of myself and how to make her the best I can be, Crohn's or no Crohn's. 

She’s doing pretty well. And so are you xox