HAPPY NEW REAR!

It’s time for one of those 'end of year' posts we bloggers love to write (and you dread to read)!

And what a year it's been.

 

HORRIFIC. 

 

I won’t even begin to go into the changes we’ve undergone with Brexit here and Trump over there, because I don’t want to projectile vomit all over the screen.

 

We've played a seemingly endless game of 'Who's Dead Today?' this year with almost everyone in the public-eye quaking in their boots at the mere sniff of a cough that they'll be 'next'. Of course for me the hardest of these 'celebrity' deaths was my beloved David Bowie. I genuinely sobbed when the news hit and felt the same grief I would for a loved one. It seemed so utterly confusing that I would mourn someone I've never met, but the depth of feeling I had for his music (and the shock of his unexpected death through illness) hit me more than I could have expected. I suppose with a sudden and unanticipated death such as his, it hit a lot of his fans in a similarly painful way. So many other deaths followed, that this year switching on the breakfast news each morning seemed like opening the world’s

most depressing advent calendar.

 

The next big setback in my year came when our beloved cat passed away. We knew he was poorly and would in time be heading to that giant Cat Scratcher in the sky, but his death was very sudden and still came as a big and heart-breaking shock. Our beautiful boy was so special and such an intrinsic part of our little family that his loss is still felt around the house. The loss of a pet can be surprisingly heart-breaking: when they are such a huge part of the family it takes a while to adjust to him not being home. 

 

But for me certainly 2016 has not been all bad. And really as we know, it’s all about ME.

 

This year saw me quit my job of over 10 years to take on a new challenge closer to home and allow me more time for writing and working on book 2! Scary but incredibly exhilarating, and definitely the right decision.

 

This leads us on neatly to the next big emotional event in my 2016: The publication of my first book! GO YOUR CROHN WAY came out in May and was a whirlwind of anxiety and joy. It was a surprisingly emotional time for me for many reasons; because it was a reassurance I wasn't a terrible writer, because it was coming from a place where I could hopefully help others in a wider way, and because it was a painful part of my life being transformed into something positive. We had a wonderful book launch (The Crohn Way Soiree) which was one of the best night's of my life. Excluding that time a taxi appeared just as the heel on my stiletto broke. I've had such good feedback from patients and their families alike that's it's made my heart swell. It’s been well received so far, I’ve been on radio, in papers and a local MP has even put forward a motion to have it mentioned in Scottish Parliament! This is about the only level of fame I could tolerate without exploding into a ball of anxiety and feeling the need to wear makeup everyday/brush my mane so I’m pretty happy with that :)

 

I’m currently working on book two and it all seems pretty exciting and that I’ve found where I want to be in life which is incredibly comforting.

 

The year ended for me on a pretty low note as I’ve been advised my treatment is no longer effective and my body is fighting against it (again). So back to the diseased drawing board. I spent most of the lead up to Christmas in hospital and it was extremely disheartening, just the idea of being properly ‘sick’ again. Tests and procedures and hospital food; none of us want it. But I was lucky enough to get home for Christmas. Now just awaiting more of the same, scopes and tests until we know what may work for me where others haven’t. I’m trying my best to think positive about this as I know I’ll get there, just stuck in limbo at the minute.

 

2017 will hopefully be healthier for us all.

 

For me, this year despite many, MANY setbacks, I have achieved something I never thought I would, I’ve made a brave decision or two, I’m in love and loved and HAPPY. Good health will follow, and if not, I’ve got all the love I need to help me through it.

 

Your support, however small or large this year has meant the world to me!

I love you!

Happy New Year everyone! xox

 

Book Up A Storm

I've neglected the blog a wee bit lately. Sorry about that. But with good reason! 

I’ve been so busy with book promotion, (how weird is THAT sentence?!), my real life full time job and stuff at home in my personal life that I feel like I've barely stopped to catch my breath let alone pen a blog post.

So here's what's happening. My first (and hopefully not last) book on living with Crohn’s Disease ‘Go Your Crohn Way’ came out 5^th May!  

Since my first book was published it's been an incredibly exciting time in my life, a genuine whirlwind and I've cried a LOT of happy tears. 

The outpouring of love I have received since the book was published has been overwhelming and completely unexpected!  Not that I think my friends and family are monsters who wouldn’t support me; but because I have been totally single-minded in focusing on doing the work (of which there is a LOT) to get it out into the world. I hadn’t stopped to think that other people would particularly care, or be in any way affected by something I had written. But at the end of the day I WANT people to be affected by the book: isn’t that the whole point? To raise awareness of an unspoken condition, to help give an understanding of life with chronic illness, and to help those suffering feel they are not alone and capable of living an AMAZING life? YESSSSSSS.                  

I had no idea having a book published would all be such an emotional experience! It’s not just my friends and family who have showered me with praise and encouragement, its people I’ve ‘met’ online, on Twitter and Facebook and through my blog. People I know well and people I don’t. How wonderful is that?

I suppose the subject matter of the book and the fact that it’s so personal has emphasised how people who love me are reacting to it. It feels to me a very cathartic experience; I’ve also found myself in a privileged position of putting something out into the world that may help people feel less afraid, isolated and alone. I wrote this book because it’s something I would have loved when I was diagnosed. I wanted to know that I’d have a life beyond my illness – something I didn’t think possible when i was being pummelled into insignificance with descriptions of my unsightly bowel and medical terms I didn’t understand.

I cannot describe how exciting it is seeing you all with your copies of MY book. When my partner saw his name on the inside cover (it’s dedicated to him, my parents and wet wipes) it was so incredible I wished that I could see his face could stay that way forever.  It’s all such a surreal experience and one I never thought would actually come to fruition. Every day is a treat and I don’t care that the hype will inevitably die down because my book will be in people bathrooms for years to come and I LOVE that fact.

I truly hope you enjoy it. And if all else fails, it’ll make the most luxurious toilet paper. 

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.

Crohn Star

I feel great today. I feel ‘well’. And I’m not even being sarcastic.

I’ve had a rough few days; loaded with the cold and pestered by migraines and last night a spontaneous chicken korma got the better of me, leaving my stomach swollen to the size of a heavily pregnant, but surprisingly alluring, elephant.

Physically I’m still utterly exhausted. Constantly blowing my nose, coughing up my lungs, a kidney and a lasagne I ate in 1992, but I feel better.

In the past year I’ve been quite badly affected by anxiety and depression. I didn’t realise any of this until it was pointed out to me by people who are medically trained/have half a brain cell. It’s never been something I’d considered in the early days of my illness; that my head would misfire in the same way as my body does. But it happens. It happened to me. It’s happening to me.

For a while now, and much to my own chagrin, I’ve hated my body. I’ve tried to pretend it doesn’t matter to me that I’m scarred and bloated, that my skin is porcelain and speckled in syringe marks, but it does matter. Because although I don’t care if YOU don’t like it – I care that I don’t. It worries me when I begin to disgust myself, because it means my disease is winning.

I’m generally pretty positive, and try to maintain a positive outlook on my illness (and my appearance), but being diagnosed with depression made me sink lower into self-hatred. I felt worthless and pointless. I didn’t care about myself. I’d past the point of being pro-active and slipped into a version of browbeaten acceptance. Everything I’d written, about how to live despite your illness, seemed embarrassingly hypocritical – I wasn’t doing that so what gave me the right to profess the same to you?

So today I’m enjoying the fact that those feelings are at bay. I feel happy and confident and attractive. I feel loved and valued. And I value myself. I’m a few months into my anti-depression medication and a few months into my Infliximab treatment. I don’t know if I still feel ‘depressed’ – I suppose I do from time to time, as many of us do. But my treatment is working and my mood is lifting.

I don’t feel hopeless I feel hopeful.

I feel positive about the future and happy to have such incredible support, tangible and otherwise.  I hope you all feel great today too. If you don’t; you will. Remember, like eye-patch aficionado Gabrielle once said, ‘Dreams can come true’, and I know that’s accurate because Jon Hamm is now single.  

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. 

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. 

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.

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. 

Bare Naked Hades

I’m not a massive fan of pale, sickly flesh being paraded across social media. I live in the West of Scotland and see more than enough of that during our 48 hours of Summer to last me a lifetime. I don’t personally see it as a hugely positive awareness tool either. IBD is primarily an ‘invisible’ disease, so I just feel educating ourselves and others on what goes on underneath our skin is more relevant than what our external bodies look like.

The ways in which a chronic illness can ravage our bodies are tenfold, and can be ultimately embarrassing, and make patients feel ashamed. We are often left feeling as though we have to hide ourselves away, so I totally agree that it’s important to de-stigmatize our illness in any way possible. Just personally baring your bits is not for me. I generally don’t need to see more scars, wounds, cannula's or all of the medications you are taking - I HAVE ENOUGH OF MY OWN TO BE DEALING WITH.

With the greatest of respect, I don’t want to read about your stitches and staples; I don't particularly want to see your stomach or your scar. No, I'm not prudish, and no I certainly don’t believe our diseased bodies are ANYTHING to be ashamed of, but I don’t necessarily want to parade mine for all to see either. It’s MINE, and it’s covered in my own history and experiences. It has that birth mark on it I've had since I was first brought into the world, and that big scar on it that serves as a reminder of how I was saved from going out if it. I has that one long toe that I've hated since I first knew what hate meant and it has that miraculous rack that has gotten me many a free cocktail. Only a privileged few get to see these bits, including me, my partner, 2 cats and that man who cleans the gutters when I’m changing and have forgotten to shut the curtains.

Adapting to my body post-diagnosis, and subsequently post-surgery, has been a long and bumpy road and it’s only now I feel a little more confident in baring it in public. But the relief there is that I don’t actually have to. It’s private; in the same way it was before I had a scar and before my stomach would swell to the size of a small house on impact with a potato.


I don’t feel flashing my flesh will help our cause: I think talking openly and without shame will. I think helping those who are afraid to open up about their fears will. I think not shying away from the impact IBD has on our mental health will. I think learning how to conquer our anxieties will. Learning as much as I can about my disease will. Educating those ignorant of our condition will. But again, this is my choice and mines alone; if you want to bare your tum or show the world your bum then the world is your lobster. Just remember to close your curtains when you’re having your gutters cleaned. 

Second Crohn's Citizen

I used to be (and still am to a certain extent), the type of woman who spends [wastes?], a great deal of her time getting wrapped up in the actions of other people around me. I’d worry what they think of me; if they like me, if they think I’m funny, or intelligent, what that certain look or sentence actually means regardless of what they say. This has caused me no end of hassle and confusion at times, mainly in relationships. So you can imagine the additional strain on someone who performs this sort of behaviour, when they have an incurable (and not particularly well known), illness thrown into the mix.

For a good while after my diagnosis I found myself slowly shaking off the shackles of caring too much what other people thought of me. It suddenly no longer seemed of any importance. I was dying, and unless these random strangers were for some reason going to be asked to give a eulogy at my funeral, their opinions had become invalid. I cared about getting well, and I worried instead about my family and friends being sad and confused. I wanted to learn about my illness and help myself and the people I love to understand it.

As I adapted to life with Crohn’s Disease, I claimed back the confidence that had previously been taken by my badly behaved bowels. I learned to get over myself and stop worrying about how people would view my supposedly unsightly scar, I stopped fretting about people misunderstanding my condition and I became confident in my ability to communicate how I felt – through writing and elsewhere.

But more recently, as my mental health has struggled alongside my physical, I’ve found myself slipping back into those feelings that I am on the outside looking in. That I am a second class citizen. It’s a strange feeling, and hard to explain, but I suppose you could say I feel that I am somehow less of a whole person due to my illness. I know that isn’t true. And I would beat another patient who said the same to within in an inch of their lives (with cuddles and soft pillows), but it’s a feeling I’ve felt start to drift back in during the last few weeks. I feel those same feelings of struggling to express myself and am at a loss to convey the complexities of my illness in a few mere sentences. Is that even possible? I doubt it.

The other day someone asked why I was unwell, quite aggressively, not a kind, “are you ok?” but more of a “what’s wrong with you?!” – this was after a day of having tried my absolute utmost to conceal the fact that I felt as though the Grim Reaper was grabbing at my coattails. Which is made even creepier by the fact that I wasn’t even wearing a coat. I felt ashamed and embarrassed to have been ‘outed’ like this; I had to explain an unexplainable illness in under 30 seconds to avoid the social horror of backtracking and pretending I’m fine. The heat was on. Not least on my forehead as my temp was through the roof by this point.

Anyway, I said “I’ve actually got Crohn’s Disease...” but before I could even delve into my brief synopsis of my irritated intestines, I was met with THE LOOK. The Look is difficult to describe, but one professional sick-people have seen many times in their lives. It starts with the glazed eyes of someone who has already decided they are heading straight down BOREDOM FALLS without a raft or life-jacket. It then moves to the vaguely sympathetic head nod, usually at the wrong places, which conveys to the recipient that you-aren’t-listening-to-a-single-word-I’m-saying-you-are-singing-Maroon 5’s-latest-single-in-your-head-right-now. It ends with silence. Painful, uncomfortable, excruciating, Best Man at wedding makes a rude joke that doesn’t land; SILENCE. There’s no way back. You’ve begun on this road and now you have to navigate over the speed bumps.

So what do I do? I try to appease the poor unfortunate soul who is at a loss for words about my disease by reassuring them ‘it’s actually fine, and no big deal, and let’s change the subject shall we? Did you see the game last night, my favourite bit was when the man kicked to the other man then his foot kicked it in the big net’.

But I should confirm that it IS a big deal. It IS a horrible and uncomfortable disease, but all I require from you, as an inquisitive wee soul, is not to assume I am ‘faking it’, or making a diseased mountain out of a diseased molehill. To listen for 30 seconds and maybe learn why it’s a difficult thing for me to talk about. If you struggle to hear it, think about how it feels to feel it. THEN and only then, can we talk about the game where the men kicking their balls into other men’s nets. 

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

Blue Monday

Ever get that feeling when you wake up and feel what I can only describe as ‘nothingy’? No enthusiasm for the day ahead, no happiness when you see the love of your life lying beside you, not a twinge of joy when you hear your two cats cuddle up to you blatantly toying with your affections for a slice of ham? No? Just me?
I wake up like this more often than I’d like. I’m working on it. I'm usually glad I wake up. I'm relieved I'm not sad, or angry, or depressed enough that I don't want to wake up. I've thankfully never felt that way. But knowing that you don't want your life to be over generally isn’t a massive confidence boost, and doesn't really make it any easier to motivate yourself for the day ahead.

Depression is a strange creature, it’s a ‘black dog’, it’s ‘a chip on your shoulder’, and it’s a motivational Facebook quote waiting to happen. But to me it’s strange, because regardless of how it’s portrayed, it's not always an overwhelming cloud of sadness hanging over you. Its ‘invisible’, like so many chronic illnesses, therefore lots of us can act ‘well’, and smile, and pretend everything is as it should be. When it generally isn’t. We often do that because it’s easier than having to explain how deeply unhappy you truly feel. That leads to several scenarios’ we don’t really have the energy or want to deal with. Here are my top 3.

1.       The sympathetic head tilt...

We all know the one. It’s both infuriating and disappointing in equal measure. It’s also expected and semi-understandable, which makes it even more exasperating when it happens. It makes people with mental illness and/or chronic illness feel ‘babied’ and that we need your sympathy and worse, pity.

2.       The patronising advice…

Please don’t tell people with chronic illness what they should be doing to fix themselves. Although you may think it’s helpful, it’s insulting and patronising in equal measure. Plus believe me, we’ve heard/tried/discounted it ALL before. See also; “cheer up” = worthy of the death penalty.

3.       The obvious boredom…

This refers to the attitude some people have when they become aware we haven’t miraculously ‘got better’ overnight. As we know, mental health issues and chronic illness doesn’t allow for a quick-fix. It requires long-term treatment and adaption, and a little understanding from those around us.

Continual health struggles (mental and physical) can feel like spending everyday wading through treacle. Simple tasks become mammoth feats of endurance and getting a handle on your emotions can be as intangible as me winning the love of Jon Hamm. It can be hard to find the joy in the things which on paper should be joy…full.  When you learn to accept your lot it becomes easier to deal with. To treat your conditions with the care and consideration they deserve, and to be a little kinder to yourself when you’re struggling.

But I suppose this post doesn't really have a nice neat ending like they usually do. That's because life with depression and chronic illness doesn't have a neat ending, or a logical conclusion. There is no ending, just adapting. And that's ok. Because that's the best we can do.