Body Balks

‘Body-shaming’ is big news these-days. It’s a long-standing issue of course, dating back to the days when we used leaves as underwear no doubt. Although if you come from my local area that was only last month. Men and women alike have always been portrayed in certain ways in papers, magazines, on TV and on film. We are supposed to look flawless 24/7. If not we are doing something/everything wrong. We are supposed to preen/starve/paint ourselves to fit the image we see all over the media.

It’s not REAL. It’s not possible.

The world is filled with vanity, where beauty and perfection are portrayed to be everything. Thankfully nowadays more and more women (and men) are speaking out on the incorrect ways they are depicted in the media. Pleasant news, as if we were to attempt to keep up with them it would be a full time (and decidedly un-fulfilling) job. One made harder still when you have a disease like Crohn's.

IBD or any chronic illness, and can change your entire body (and attitude towards it) in a mere matter of hours. When I'm in the midst of a flare-up the disease affects my hair (making it dry, thin and fall out in clumps), skin (dry and sore), makes me bloat to beach ball proportions, gives me hot flushes, makes my face chalk white and makes my body ache all over. You can imagine why it’s pretty difficult to feel confident and attractive when all of that and more, is going down.

Women in particular, have beauty shoved down their pretty little throats everywhere they turn. Sex and supposed 'perfection' sell everything; a gorgeous model in a slinky dress will be used to sell anything from a new Audi to a tube of Anusol.  And we are designed to lap it up. Well of course we are; these women are far more beautiful than us, so logically if we own that product, we too can be just as beautiful. It makes perfect sense! If you choose to ignore the airbrushing, and make-up artists ad hairdressers and personal trainers who all help make this perceived perfection possible. Despite knowledge of all of this, we still continue to put so much pressure on ourselves to look, dress, and act a certain way in order to feel accepted. Usually by people we don't even like.

None of it matters. In 50 years I very much doubt how good I looked in that Instagram filter will matter to me too much. (Mainly because I’ll be dead long before then; I am Scottish after all). But also because my health, and my self-esteem are what matter. I want to be known for being confident enough to express myself, helping those who are less fortunate than me and complimenting a beautiful woman rather than berating and secretly envying her.

In living with this disease I know I will never be conventionally 'perfect'; and that’s FINE, because such a thing doesn’t exist. But I am unique; for example I have a jazzy scar down the front of my stomach; leftover as a memento from where an amazing woman (I'm sure with the help of some excellent male nurses...) saved my life and removed a really, really ugly bit of me.

That can only be a beautiful thing.

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. 
- ARE YOU INSANE TO EVEN CONSIDER GOING OUT IN PUBLIC IN THIS?
- GET THAT DRESS OFF IMMEDIATELY. BURN IT.

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.

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.

Let Me Entertain Loo

Having a chronic illness is exhausting. 

EX-HAUS-TING. 

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.

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

Ward This Way

If you suffer from a chronic illness, it’s an unfortunate truth that you will most likely be required to spend quite a bit of time in hospital. Perhaps mostly at the time of diagnosis; IBD in particular can be very difficult to diagnose and you may find yourself an in-patient of Ward LETMEOUTOFHERE for much longer than you’d like.

So how best to cope?

As a public service I’ve taken the liberty of compiling a little list of hints and tips to help you deal with with your stay in the world’s grimmest hotel. (Please feel free to add any of your own in the comments!)

1.       Speak up – Don’t play the martyr and suffer in silence. It’s stupid and really helps no one. You may think you are being kind, and the perfect patient by not giving the nurses anything to worry about, but really you are just setting your own recovery back and making it more difficult for them to help you. Diagnosis and treatment are a two way thing – you have to play ball when it comes to doctors’ recommendations. OK, if you are totally terrified, or vehemently disagree with what they suggest then tell them! Or ask for a second opinion. Don’t be afraid to rock the boat; the ultimate aim is getting to the shore safely and with as little disruption to your life as possible. Something about getting coconuts when you get there too look I don’t know.

2.       Prepare and prepare again – You might not assume you’ll have to stay in hospital again anytime soon, but your body (and your doctors) may have other ideas. Although it’s not a nice thought to have in the back of your mind its much nicer when the time comes to know you don’t have to panic about what you will need – or worse fire orders at someone else to pack for you. I previously compiled a list of my top items for my hospital case you can peruse here at your leisure if you so wish : ( http://crohnologicalorder.blogspot.co.uk/2012/05/crohn-fishin.html )

3.      Do as you’re told – Yes you are in hospital to get well, but you are also a guest in the Bates Motel of Misery and as you are there to be looked after you must try and tolerate what is asked of you. Yes, it’s annoying when someone tries to fire dry toast down your gullet at 6.00am after a sleepless night listening to the woman in the bed opposite you screaming blue murder at all hours, and yes it’s even more annoying being shoved in a shower bleary-eyed and attached to a drip, and yes its annoying sharing a toilet with 4 other women with bowel conditions; but none of that is the fault of your nurses or doctors. It’s important you try to focus on what YOU need to do to get better. Listen and try to understand why you are there and what can be done to help. Don’t cock-block the doctor from attempting to medicate you at every turn; you never know they just might actually know what they are doing.

4.       Don’t turn away visitors because you feel embarrassed/a burden – Don’t get me wrong I’ve spent many a day in hospital when the thought of having to smile and chat to friends and family fills me with nothing but dread. But hospital can be a very lonely place, and seeing a familiar and loving face can help massively to brighten up the day. It also gives you something to look forward to and a sense of routine in what can become a calendar wasteland.

5.       Don’t feel you have to be a performing monkey – On the same topic its important you are authentic and true to yourself when loved ones arrive. Yes, its natural you don’t want to cause unnecessary worry, but here’s a newsflash for you: you are in hospital – they are already worried. Keeping how you truly feel from people who care for you is detrimental t your own mental health and is putting up a barrier stopping them from possibly helping to lighten your emotional load.

6.       Biscuits – There are always biscuits. 

Stress This House

For a few weeks last year I went to see a counsellor. It was at a particularly low point in my life when nothing seemed to be going to plan. I was also struggling with my deteriorating health and trying to come to some sort of mutual arrangement with my disease that would allow us both more of an equal share of my body. (Obviously the end goal was ideally 60 – 40 in my favour but keep that under your hat I don’t want to rock the boat).

During my time with the counsellor, (let’s call her Carol, as that was her name), she quickly established that I was suffering from severe anxiety. She taught me all about the ‘fight or flight’ response; that anxiety at its core is an ‘in built’ response our bodies have to perceived threats. It allows us to do whatever we deem necessary to protect ourselves when we encounter ‘danger’. She explained that the origins of this response date back to ancient times when our ancestors lived amongst natural predators; e.g. a lion approaches looking to eat you, your fight or flight responses kick in and you either punch the lion square in its furry face (inadvisable) or bolt in the opposite direction faster than the speed of light to find a hiding place (more advisable).

Well this hypothetical tale is all well and good, but as I live in Central Scotland where not many lions tend to roam free, it didn’t quite hit home, so Carol elaborated and explained how anxiety affects the body in a more day-to-day sense.

So not many of you may know this, but I have a PHD in science and stuff I received from my studies at the Laboratoire Garnier or whatever, so allow me to share my (and Carol’s) vast knowledge with you.

Here comes the science bit.

So anxiety is like the bodies alarm that alerts you to these perceived ‘dangers’. It then sends chemical messages through your body like adrenalin, which causes your heart to beat faster and stronger, increasing your blood pressure. This in turn moves blood into the larger muscles you use to ‘fight’; many of your muscle groups tense up when this happens. Blood flow is diverted away from your skins surface causing paleness, tingling and cold feet and hands. Your breathing will also change, from shallow slow breaths from your stomach to rapid breathing higher in your chest and this can lead to dizziness and hot flushes. You’ll sweat, your pupils will dilate and your whole digestive system will shut down causing everything from a dry mouth to constipation.   

‘But, Professor Nicholls, how does all of this relate to IBD?’ I hear you cry. Well let me explain. Anxiety and IBD go hand in colon like your consultant on scope day. Ever felt yourself panic and perspire when in a strange place with unfamiliar surroundings and a sudden urge for the toilet? – ANXIETY. Ever been wheeled into the hospital and left in a ward with no explanation of what’s in store for you and your rear end? – ANXIOUS MUCH? Ever been walking to the shops to pick up your prescription when the local lion walks towards you? – ANXIETY OVERLOAD I CANNAE TAKE IT CAPTAIN ETCETC.

Most of our days as sufferers from IBD are spent thinking about our conditions, and anyone with a chronic illness will have experienced anxiety at some point in their lives. If not EVERYDAY, like myself. I am far more inclined to assume the worst case scenario Post-Crohn’s. I’m far more likely to fret about every potential situation that may occur ‘P.C’, and I’m faaaaaaaar more likely to plan every outing with military precision than I did ‘P.C’

So what can we do to combat this invisible menace thwarting our daily lives at every turn?  Here are a few tips from Carol (and myself; let’s not get ideas above our station CAROL), to help swat away the anxiety like the pest it is.

-          - Learn what triggers your anxiety - Perhaps keep a diary of what situation you were in when you felt yourself panic. Establish if there is a pattern to these episodes and allow yourself to plan these encounters better, or avoid them if possible. Is it something you can handle in a different way next time?

-          - Count to 10 slowly - Speaks for itself really. Try 20 if you are Scottish and speak at 500mph like myself. Breathe in and out on each count to slow down your breathing.

-          - Limit alcohol and caffeine - Both can trigger panic attacks and aggravate anxiety. Unless your anxiety trigger is alcohol or caffeine, then we’ll need to try something else, wont we CAROL.

-          - Accept you can’t control everything – Try to put your worries into perspective where possible, is it really as bad as you think? Don’t patronise me, CAROL.

-          - Get plenty of sleep – When it’s stressed your body needs additional rest, try to placate it where you can and get enough.

-          - Talk to someone – Tell friends and family you are feeling overwhelmed, let them know how they can help you. Talk to your doctor or a therapist for professional help. You can even call me, Carol, on 0300 20… WOAH, WOAH! BACK OFF CAROL!

Sorry about that. Carol gets ahead of herself sometimes. It makes me anxious, but I faced it head on and I feel better about that. Wait a gosh-darned minute... Reverse psychology? Carol you absolute genius!

Anyway, hope this little blog-therapy session has helped YOU understand how to beat YOUR anxiety. Hope it hasn’t made you anxious as my writing often does. Carol and I are off to drive off the edge of a cliff like Thelma and Louise; she says it’s therapeutic and not at all terrifying and deadly! She knows her stuff does Carol! 

S

Crohn We Still be Friends?

It's impossible not to assume your relationships, romantic or otherwise, will change in living with a chronic illness. For starters, YOU have changed; whether you choose to accept it or not. You will find your tolerance for certain types of people and/or behaviour has changed, and often that means that the places in which there was previously room in your life for certain people/nonsense has been filled with other, more dramatic but decidedly less fun stuff.  

There will be friends, and other members of your intimate circle (and intimate circles will become a BIG DEAL henceforth), that will start to drift away. They won’t be able to cope with having a ‘sick’ friend. They won’t understand, or perhaps even try, and that’s ok.

It really is.

Or at least it will be. At first it will be pretty traumatic and it will feel as though it’s your fault. It’s you pushing them away with your illness, it’s you constantly complaining, it’s you cancelling plans, and it’s you who can’t talk about anything else but sickness.

IT’S NOT YOU.

What’s happening to your mind and body from the onset of illness is heart-breaking and out of your control. It’s a time of massive change in your life and it’s possibly a bridge too far in terms of lifestyle modifications for some people on the outside to deal with.

I’ve been told by ‘friends’ that I’m ‘playing the Crohn’s card’ when I’m too unwell to socialise or have to leave a party early. I’ve been left out of certain events because it’s been assumed I wouldn’t want to attend or would be too unwell. Let me say that this is not (always) done out of selfishness, it’s generally kindness or just a lack of ability to find the right words. There of course is a fine line when it comes to friendship with a chronically ill person – it’s not all on you as the friend; it’s about communication and showing you are open to adapting your own plans occasionally to allow us to feel a little more comfortable.

Of course, 99% of us don’t actually WANT to be ill, and want to enjoy life to the full like we did pre-disease, but it’s just not always possible. (The 1% there is left open for hypochondriacs and/or those who revel in misery for reasons unknown to me). There are things you can no longer do, despite your best efforts, and activities you can no longer be a part of. That’s frustrating and upsetting in most cases, but in the main it’s a long and arduous process of acceptance in learning what you can do. Let me make it clear – if you think it’s hard on you when we can’t meet you for drinks/ dancing/ intercourse/ breaking into banks, it’s even harder for us.

It’s depressing and emotionally debilitating when our bodies stop us from being around the people we love. But in my years of living with sickness, I’ve come to realise the importance of self-care. That doesn’t mean we don’t care about you as our loved ones, and your needs, because we really do. We just learn to prioritise. And knowing if you have two shots one night that you’ll then be incapacitated for the next 48hrs, isn’t fun. (Anymore). 

Believe me, if you know how it feels to be hungover, imagine that but with diseased intestines thrown into the mix; the worst internal-cocktail known to man. And I’ve eaten a deep fried Mars Bar. 

Stall That Jazz

I remember vividly the first time I knew (and accepted), that I was seriously ill. 

I was at a gig with my partner, we'd gone to see Gil Scott Heron; my bf was a huge fan and it might have been (and subsequently was) the last time we could see him in Scotland/alive. I felt relatively OK on the way there, I was looking forward to it, but as we stood in the hall and the crowd began to build around us I started to feel a sense of foreboding. It's something I feel a lot of the time in crowds, anxious and an increasing sense of panic; what if I can't get out of here? What if I'm sick? Or faint? What if I ruin the night for him? 

I was feeling claustrophobic and unsteady on my feet, and wondering why in the name of all things holy I hadn't booked us seats instead of standing. I usually can't stand without sitting down for more than about 15 minutes so gigs are often a huge challenge. I usually dance away the fear/nausea but at this type of gig it was more about quietly 'appreciating' the jazz. 

I hate jazz. Don’t get me wrong, I don’t mean hate in the sense of hating brown sauce on chips or when hating it when someone eats with their mouth open; I mean full on, unadulterated hatred. 

I went to this gig with my beloved because he doesn't hate it, quite the opposite in fact, and what is a relationship if not putting yourself through your own version of hell to please someone you love? 

I appreciated I needed to SIT DOWN. About half an hour in and I was feeling awful, major nausea and dizziness. I tried to focus on the man on stage talking/jazzing. I tried to hold onto my bf, feel my feet solidly on the ground and breathe in and out but it was hopeless, before I knew it I was a slurring mess, mumbling to my bf I was about to pass out. 

And I did. 

In the most dignified way possible; in a room full of thousands of people and after having thrown up all over myself. My bf and some lovely stranger apparently helped me out of the crowd and to a First Aider. I came round and was totally disoriented and FREAKED OUT. Where was I? Why did my bf look ashen? Why did I STINK? 

I was at a gig and had passed out and thrown up – naturally the first aid staff assumed I was a drunk/high on drugs/both of the above. They knew I wasn't high on JAZZ that's for sure! hahaha :( 

They checked I was alive and sent me on my way. (Which was back into a sweaty room surrounded by thousands of sweaty jazz loving people wearing berets and flat caps and drinking speciality beers). Because I didn't want to have completely ruined my partners evening, I insisted we stay to watch the end of the gig. We stood out from the crowd so I could get some air and I waited patiently for my jazz-infested ordeal to be over. I stunk of vomit. I had sacrificed both my favourite cardigan and scarf to the bin as they were beyond help. I needed to be anywhere but here. But I stayed. 

We left and walked out into the night, I felt like the Worlds Most Disgusting Creature 2010 and my bf handled me like a china doll, albeit a foul smelling one. 

A few months later I was having life-saving surgery. I am a lot more sensible now; I know my limitations and without sounding negative, I know when to admit defeat. There are things I’d love to be able to do – but there are more days alive I’d like to have than nights out, so one outweighs pushing myself for the other. 

I have also gone cold turkey on jazz since that fateful night, and my ears have never been happier. 

Dalai Trauma

Chatting/struggling to hide a grimace with a hypochondriac this week has been a strange reminder of just how much, as patients with chronic illness, we learn to accept as 'normal'. Everything we feel and experience becomes a part of our daily lives and we quickly learn to adapt to what is essentially an abnormal situation. 

I of course never thought the feelings I felt were 'abnormal' until I was diagnosed with Crohn's Disease. I always felt my body wasn't quite like other bodies… bodies. I suppose I just put everything down to growing pains, or tried not to think about it at all to be honest; it seemed too dirty and weird to talk about. Of course I'm not of that opinion now!! I'm more than happy to discuss what’s left of the inside of my stomach and/or the Bristol Stool Chart with anyone who'll listen, anywhere! Doctors surgeries! Parties! Funerals! Anything goes.

But as patients with long-term or incurable illnesses, we learn not to complain and gripe about the small things. Small things most 'normal' people would consider being LIFE-DESTROYERS. Things such as relentless and incredible fatigue, aches and twinges from joint pain which stop you being active or carrying out BASIC IMPORTANT LIFE ACTIVITIES like scraping the last out of the Nutella jar and petting cats. We suffer pain daily and learn to treat it as just another annoyance, like cystitis and/or Donald Trump.

Even faster than the BBC buying the rights to another Jane Austen novel, it’s at breakneck speed that we make these adaptations.  

The trauma of diagnosis is swiftly followed by the realisation it’s NOT EVER GOING AWAY, then the "it’s not as bad as it was/could be/looks" creeps in and thus begins the 'new normal'. We have very quickly reached a point where we realise we tolerate a lot more than your average Joe. If you are reading this and your name is Joe it’s just a turn of phrase Joe, calm down Joe you’re always overreacting Joe. We learn what our stomach can stomach pretty quickly and act accordingly. It’s not fun and it’s not a situation we want to find ourselves in but it’s where we are and must be acknowledged. Burying our heads in the sand is pointless (and really nips the eyes).

The important thing to remember when accepting this new version of normality is that we don’t neglect to keep questioning things. Don’t just 'accept' absolutely everything as part of the sickly process. Question WHY the pain is worse?, WHEN is the best time to seek a second opinion?, WHERE in the name of all that is holy is the Nutella kept in this house?

If we allow ourselves to accept pain and misery we will become pain and miseries. (Aware that sounded much more Dalai Lama than I’d expected but if you want to list me in the same vein as him then that's fine, I won’t complain. Although I will add I have much better hair and breasts than the big man himself. But in all seriousness, it’s vital we only allow a certain tolerance of our new version of ‘normal’. We shouldn't forget we don’t deserve to feel awful 24/7, and we shouldn't. Where we can help ourselves and practice a little self-care we should. That’s my favourite version of normality. 

There's an Ill in the Air

It’s World IBD Day!

Which, as we all know stands for ‘Irritable Bowel Disease’!

No?

Oh, sorry I meant ‘Invisible Bra-Straps Day’!

No? Really? That’s my favourite day as well…

Ok, so I’m joking OBVIOUSLY, we all know it stands for ‘I Banged Dave’. No, sorry you’re right, that’s an excerpt from my upcoming kiss and tell novella, 50 Shades of Dave.

I’m just being hilarious and silly as always. (Sorry Dave).

Today is World ‘Inflammatory Bowel Disease’ Day. It’s a day where we aim to raise awareness of Crohn’s Disease and Ulcerative Colitis. Traditionally conditions that often go unspoken due to their ‘invisibility’ and complexity. It’s very easy to fall into the trap of keeping quiet about it.

We find people often don’t understand just what is involved in living with a chronic illness, so we just don’t open the dialogue. After all, it’s easier that way isn’t it?

No.

Not talking about IBD makes it shameful. It implies that as patients we have something to hide, something to be embarrassed about. It allows ignorance to run rampant, like me in a pub full of men called Dave. It causes insecurity, anxiety and confusion. When we remain mute on the subject of our illness we allow others the space to come to their own conclusions. (Conclusions, that are wrong; 99.9% of the time).

We have to talk to ensure we are consistently reaffirming the point that we have absolutely nothing to be ashamed of. We are living with illnesses that massively affect our lives and should remind ourselves often, that leading ‘normal’ lives around an abnormal illness, takes huge courage, humility and strength.  

So what to do to spread the word? And is all awareness ‘good’ awareness? Well it’s certainly vital we teach those outside of our illness what it entails, and how it affects our lives, but how?

I feel education is of the utmost importance. How can you expect strangers to comprehend your illness when you can’t really explain it yourself? I have Crohn’s Disease and I’M still learning about it. I experience something new every day. It’s never ending.

We need to help one another educate ourselves and others.

If you are knowledgeable about IBD then share! Don’t patronise other patients. When you do that you only make them retreat further into their diseased shells. When I was first diagnosed there was so much information to take in it was utterly overwhelming. It was almost impossible to distinguish the accurate from the hyperbole. Everyone has their own horror story to share and none of them help ease a worried mind.

Use days like today, (and every day) to share your knowledge and support those who maybe don’t have as much of it as you. Don’t just raise awareness; raise the bar. Give the gift of information. It’s the most useful gift you can give; it’s non-returnable, recyclable and never gets old. 

Dr Feelgood

I recently read a piece of writing from someone with IBD, in which they were discussing how happy they were that their recent surgery had ‘cured’ their condition. 

I was both overjoyed and dejected. 

Overjoyed; on the writers’ behalf, as it was a wonderful insight into how denial and misinformation can lead someone to feel immense happiness. Even if they are woefully idiotic. 

Dejected; as it reminded me that people with, and without IBD still believe they can be cured with surgery. I wondered where that misconception came from. Articles like the one I’d just read? Doctors? Surely not. Fellow patients? Possibly. 

Let me make that point clear before I continue; Surgery is NOT a cure for IBD. Having parts of your insides surgically removed forever, is not a cure for an incurable condition. It’s an unfortunate and often devastating necessity for many patients to endure in order for them to stand a chance of living as close to a ‘normal’ life as possible. Or just to continue living.

My own surgery for Crohn’s Disease was a little over 4 years ago now. It saved me from dying at the age of 26 and gave me a quality of life I’d waited for, for a very long time. I’m well aware of how dramatic and easily bandied about the words ‘life-saving’ can be, and sometimes I feel embarrassed to use them, but they are accurate in mine and most cases, for patients with IBD. None of us would put ourselves through invasive and major surgery, followed by months of recovery and rehab without good reason. I think staying alive is a pretty good reason. And one of my favourite Bee Gees hits.

Before my operation (in which I had the most badly diseased part of my bowel removed), I’d resigned myself to a life of pain and misery, so when the chance to feel better was granted I remembered what it felt like to feel hopeful again.

The problem arose, after my surgery, when I realised I was still in immense pain. Not so much Crohn’s pain now, but a whole new world of agony where I’d been sliced and diced hours earlier. Now much as you may disagree, I’m no imbecile; I’m well aware that having your stomach cut open and parts of your internal organs removed might nip a little afterwards. It’s just I’d made the mistake of assuming I’d be relatively Crohn’s-free. I hadn’t bargained on requiring barrel loads of morphine and two sturdy nurses to as much as stand upright. I’d realised I had a long road to recovery ahead of me, and that surgery wasn’t a ‘quick fix’ by any stretch of the imagination.

So, if you or a loved one is heading towards the operating table, here are some words of wisdom taken from my own experience with getting up close and personal with a scalpel. Allow them to wash over you like a vial of morphine or a vigorous bed bath depending on your preference.

1.       Bear in mind surgery is being used to help you feel better and help you manage your condition more effectively. To give you back some semblance of a ‘life’; NOT to cure you. You will still have IBD when you come out the other side of the operating theatre.

2.      You will desperately need a cushion when you sneeze, when you cough, or when you laugh. Hold onto that cushion with any energy you have and cradle it to your chest like Baby carried that watermelon.

3.      Don’t try to shower too soon – or alone. Yes it’s important not to smell like your local sewage works, however its dangerous to attempt standing upright and under hot water alone and unaided shortly after major surgery. Don’t be ashamed to ask for help – from nurses in the ward or loved ones if you are at home. Cleaning as soon as you can is vital to avoid infection, just don’t risk your life doing it.

4.       Don’t resist the pain relief. You are not special. You are not superhuman. You might feel ok now but wait till the morphine wears off then decide if you still want to be ‘brave’. And don’t.

5    Don’t propose to your surgeon under the influence of a cocktail of drugs. They will only break your heart and have you moved to the psychiatric unit.

Stool Runnings

It's difficult isn't it, when you find yourself straddled uncomfortably between happiness and misery. 

Like some sort of 50 Shades of Grey activity where you've forgotten your safe-word it can be incredibly difficult to manoeuvre yourself out of a situation you're not comfortable with. 

You stretch out a hand towards the life you envision for yourself yet it's always just out of reach. It's a painful losing battle to find yourself disappointed again and again at the hand you feel life has dealt you, and you're seemingly helpless in your vain attempts to clutch at what you desire in life.

In suffering from a chronic illness these feelings may be familiar to some. Commonplace, even. To outsiders airing these feelings of often abject misery can be perhaps worrying and a cause for concern because they don't feel the relentlessness of your illness. 

They don't feel the pain all day every day that surges through your body. 

They don't experience the uncomfortable and interfering symptoms that you do, and they don't feel physically and mentally exhausted every day in life. 

Even on the 'good days' patients will think about their illness; why aren't I pain? What does that twinge mean? What if I need surgery again? What if I need to go to the toilet and can't find it? What if I've forgotten my wet wipes?

I try not to wallow too much in the pain I regularly feel because I'm tired of feeling it and want a break. Also because it's B-O-R-I-N-G to talk about. 

Chronic illness isn't fun. 

There's no metaphorical finish line to cross because there's no getting better. I don't jump into the air and click my heels together when I get home from yet another hospital visit because I've generally been handed another deluge of information to begin to comprehend, alongside a massive bag of foul-tasting drugs. But enough about my dealer. Kidding Mum! Prescribed drugs, obviously. I don't have a 'dealer'! But if I did I'd like him to be called something like 'Crazy Leroy' and wear loud shirts and shiny brogues. 

I digress.

I write often on the mental health issues that can often coincide with chronic illness, from anxiety to depression, as I don't believe it's something to keep quiet about. It's not shameful, or embarrassing to admit you sometimes feel low. It's safe to talk and be open about your feelings because you might not feel safe in yourself by keeping them in.
I often align suffering from IBD with grieving for a loved one. Not to in anyway minimise the horror of losing someone close, but it's apparent to me that the so called 'stages of grief' are startlingly familiar to anyone who has faced the diagnosis of an incurable illness.

Denial, Sadness, anger, depression, acceptance.

I was told last year I should "learn to accept" my disease. How do you go about accepting it exactly? It's not a bunch of flowers. It's an incurable condition I will have to endure for the rest of my life.
I suppose in terms of 'acceptance' I've come to the realisation I'm not going to get better. That's not to say I won't find a treatment to suit, but that I won't wake up one day and find myself Crohn's-free.

Shortly after my diagnosis I felt for a long time that I was looking at my illness through the eyes of everyone else: my parents, family and friends. The man I love.
I'd taken on board all they felt and predicted for my diseased future, and just rolled with it because it was easier. When I'd recount my stories of surgery and hospital visits it would feel like me talking about a friend: difficult to describe I suppose, but I think the mind has a way of closing off certain parts to protect itself; I wasn't physically strong enough to cope with what was happening to me so how could my mind be expected to comprehend such life changing news? The truth is there is no right or wrong way to cope with chronic illness; it's abut finding what fits you, not pushing yourself too hard, not punishing your body and ensuring you aren't bottling your feelings up.

I don't mean to depress or upset, because the majority of the time I personally feel incredibly lucky to have amazing people in my life, for all of you lovely readers, and for the love I have around me. But often I feel sad, and exhausted, and that's when I (and YOU) have to remember that this particular storm will pass. It won't last forever. Even if my disease will.