Grimace and Bear It

A little thing you may or may not know about me: I’ve got a very defensive personality. I snap easily when I feel I’m being threatened. The arms cross, the brow furrows and the attitude of a moody teenager positively reeks from me. I hate it. I try to stop it, because I know it’s counter-productive and halts any attempt at adult discussion, but it’s sometimes almost impossible to rein in. It doesn’t always happen. But more often than I’d like it does, and I beat myself up about it A LOT.

I’m also insecure about my body – I’m scarred and bruised from surgery and seemingly endless procedures, and medication means my weight fluctuates so regularly that I can go from balloon to pancake and back again in a matter of minutes. When I’m bloated I feel embarrassed and ugly. I feel ashamed of my appearance. (So you see how the defensive personality might cause a problem here; if someone so much as glances at my stomach I am on them faster than Nutella on toast).

I’m well aware this defensiveness and my occasional hatred of my own female form is nowhere near a good attitude to have, but at least it’s real, and honest. I’d love to be a shining example of woman-hood who could wholeheartedly embrace her curves and teach others to do the same: and I like to think I do on the second point certainly; I’m my friends’ biggest cheer-leaders when they doubt their own (unmistakable to me) beauty. Only I can’t embrace my ‘curves’ because (my cracking rack aside) mines aren’t natural. They are caused by a crippling illness. The difference between these two pictures for example is 10 minutes. The first was pre-meal, the second minutes after dinner.

Bloating is painful and very uncomfortable. It’s constricting and makes me incredibly self-conscious. Even around the man I love. I don’t like to see myself looking this way mainly because it never seems to be a true reflection of me; even though it quite literally IS a reflection of me. 

In much the same way my scar did when it was fresh and new, it makes me feel ‘diseased’. I know it’s the not fit for purpose parts of my insides that are causing my physical appearance to be altered and it reminds me of what I’m dealing with. I can’t hide under smocks all my life, I have to grimace and bear it.  

This week I’ve struggled with work as my joint pain has escalated. My arthritis is causing my hands and knees to swell and ache. The pain can be overwhelming and incredibly frustrating. I suffer from nerve damage too, (another fun side effect from chronic illness) and that too has been reminding me there is pain to be found everywhere if I look hard enough. Thanks carcass! Joint and nerve pain make me feel old and I’m not. Combined with Crohn’s bloating I feel like a beached whale that can’t so much open a jar at the minute. Although whales don’t have pose-able thumbs and no call for opening jars I suppose, so one nil to me there I guess.

I’d love to be more accepting of what my disease does to my body but I can’t. I won’t. My body is MINE. So why does it feel parts of it are being controlled by some outside force trying to halt the inevitable process of Jon Hamm falling in love with me?

Of course ALL women bloat. You do. You DO; don’t lie Janet no one believes you. You just put gorgeous filters on your Instagram pictures or stand coquettishly behind vases of flowers/your fatter friend so we don’t notice. That’s fine, whatever works for you; just remember when we don’t admit our bodies are flawed (whatever that means) we alienate our own kind. We tell our daughters and sisters and mothers that their bodies are something to be hidden. So WHAT if you stomach swells after a meal? Would you leave your husband if /WHEN his does the same? No, exactly. 

Letting my body dictate how I view myself is stopping me enjoying the short time I have to do everything I can with it to make myself and other people happy. Sometimes we all just need to power through the self-consciousness. There are several things I’d like to see written on my gravestone when the time comes and ‘DIED ALONE DUE TO BLOAT SELF-PITY, SURVIVED/EATEN BY HER 45814845 CATS’ is not one of them.*

*some potential alternatives:

‘DIED TRYING TO OPEN A JUMBO NUTELLA JAR’

‘DIED AFTER BEING ATTACKED MY A GANG OF KILLER WHALES EXACTING REVENGE FOR A BADLY RECEIVED 2016 BLOG POST’       

Someone Saved my Life Tonight

How many of you have flippantly said “I could’ve DIED!”? 

Or “I wanted to DIE!”? 

Or even “I’d rather kill myself!”? 

A LOT of you I’d wager.

Ok, now how many of you want to die? 

How many of you have considered killing yourself? 

Substantially less, yes? 

Most of you are probably thinking ‘WOW this got dark really quickly and I want out’ and have already moved on to reading a think-piece on Kylie Jenner’s new lip-gloss. That’s fine. It IS heavy. It’s literally life and/or death.

A few months ago I was low. Deeply in a state of depression which I couldn’t shake. It seemed to last forever: it didn’t. It maybe lasted a month or so. It culminated in me walking home from work, crossing over a bridge and having a fleeting thought about jumping off. I didn’t. I went home and thought about why I thought jumping off a bridge would be in any way a fix or a ‘normal’ thought to have. I was sad, SO SAD, and angry. My partner talked to me. He asked what was wrong, he PUSHED. I was, I am, fine. 

I eventually came out the other side and now I feel balanced and ‘OK’. I even feel happy. That’s fantastic and I am relishing it. But I know I will feel that low again. And again. That’s what depression does – it comes in spells; some last longer than others, some come and go as quickly as a selfish lover, some sadly don’t ever end; they just plateau.

In my short(ish) life, I’ve known someone who killed themself. It’s confusing and distressing and SO sad. They are young! They have their whole lives ahead of them! Repeat to fade. I’ve known people who have tried and failed; either through it not being a ‘genuine’ attempt (attention seeking?) or through poor planning, or just through not being able to follow it through.

There are countless reasons why someone would choose to end their own life. You don’t have to think it’s a ‘worthy’ one; your opinion doesn’t matter to someone who wants to die. You may call them ‘selfish’; but that’s because you don’t want to be left on earth without them. You don’t want to miss them and cry for them. You don’t want to be left without answers, or without having been the one to ‘save’ them.

I say this because I’ve felt it all. I’ve felt anger and frustration and deep unyielding sadness at someone I love not feeling ‘well’ enough to stick around. Feeling that death is a viable option. My fleeting ‘let’s jump off a bridge’ idea is wholly laughable to me now. Only because now I am mentally ‘better’ I can’t imagine wanting to end my existence through choice. I want to live and laugh and love and buy wall decals that say ‘LIVE LAUGH LOVE’. I want to kiss the man I adore until we are old and his beard goes grey. I want to smother my dog and cats with love until they beg for mercy. (Full disclosure: I do that already).

I guess I’m trying to say we shouldn’t judge someone based on our own fears and insecurities. We should learn to take mental-health seriously and listen when someone tries to open up to us. Don’t get angry and shout when someone tells you they are unhappy; they might not have a ‘reason’ they might just feel sad. It’s YOU that wants a reason for unhappiness so you can fix it. But depression doesn’t work that way. It just ‘is’. 

So you can say “I’d rather die!” if you want, I do when I come across an article about Kylie Jenner’s lip-gloss; just remember that when someone says it to you in earnest, take them seriously. I can do better at that. We can all do better. You might just save someone’s life.  

Flaw and Order

Flaws. I hate that word. We are constantly being told to ‘learn to love’ or ‘appreciate’ or (worst of all) ‘accept’ our supposed flaws. But for me, simply admitting to having physical ‘flaws’ is putting ourselves down. How are we to embrace loving our bodies when we pre-empt any discussion by ticking off our ‘imperfections’?

Surely what one person finds beautiful another finds, well, less so? Therefore we are never going to please everyone, certainly not in this lifetime. But what does it matter? The only person your appearance should ‘please’ is yourself right?

Easier said than done that one. It can be a mammoth issue to deal with – body image. For everyone, let’s be honest, but perhaps more so when you have a chronic illness. The way you see yourself can alter significantly, maybe even from the minute you start experiencing symptoms. Even if it’s not in any way apparent to people on the outside, you feel ill, therefore you must look it. I’m 99% sure most of that is in the head (no I don’t have any scientific fact to back that up, but when do I ever?). Our perception of ourselves has altered due to sickness, pain, aches, breaks, et al, so it stands to reason we will find fault in the appearance of our failing bodies.

But don’t get me wrong; I’m no enlightened being, by any stretch of the imagination. I’m just as bad at picking holes in my own appearance as everyone else. I tend not to spend too much time in front of the mirror, but when I do, I indulge in a veritable insult BANQUET. I won’t leave that reflective surface until I’m feeling satisfactorily repulsive and have trampled any morsel of self-esteem I once had into the ground. No, that’s not healthy: but it is common, and a FLAW I wish I didn’t have.

If you feel unattractive it stands to reason this will affect your mood, and so it follows that that low mood will seep into everything else in your day/week/life. So I wouldn’t be as daft as to suggest appearance isn’t important – it absolutely is. Whether that’s right or wrong in the grand scheme of things is pretty much irrelevant.

I don’t have a daughter, or even a female cat, but I do have women in my life who I adore – so I can tell them that they are beautiful even when they feel ugly. I can tell them they have a good heart and a great personality and that one day they will look in the mirror and see what I see. You could, and unquestionably should, do that for someone you love too. Or do it for yourself, everyday it’ll get a little bit easier.

You see, the real flaw is in you thinking you have flaws. 

The Crohn Way Soirée

On Friday we held a launch event for my book ‘Go Your Crohn Way’. It was AMAZING. Being an inexperienced ‘author’, I’d never even attended a book launch let alone held one for myself, so it was a very daunting prospect! Thank-fully I have an amazing partner who took the reins on the majority of organising the event; he also acted as the host with the most; welcoming everyone along, introducing the night’s activities and even holding a Q&A session with me! VERY FUN.

We held the launch in The Royal Society of Edinburgh, a beautiful building within jaw-dropping distance of Edinburgh Castle. The RSE was created in 1783 by Royal Charter for “the advancement of learning and useful knowledge” and has a strong medical background. It’s also IMPRESSIVE AF. I certainly don’t profess to be learned enough to ‘teach’ anyone anything (although I can name AT LEAST 10 breeds of cat in under a minute), but I do hope my book offers some useful knowledge on how to live a full (and happy) life with IBD.

The launch allowed for me to talk a little about the basics of Crohn’s Disease and Ulcerative Colitis, and read a little from my book. That was SCARY. My knees were a-knockin’ and I was breaking into a cold sweat but I got to the end of it without passing out and no one left mid-way through so that was a bonus! James (my BF) and I had a Q&A where I fielded brilliant questions from our guests. Many of which almost had me sobbing but I was running on too much adrenalin to even coax out a tear at that point. We had delicious canapés and wine and social networking, and a book-signing! THAT was a thrill in itself – people actually queuing up to have me sign their books like a real life author! I loved every minute; especially meeting some who had come such a long way to attend the event.

There was such a great and inclusive atmosphere in the room that we couldn't fail to feel comfortable. Bowels have never felt so entertaining.

Today, a couple of days later, and now that we have both come down from our ‘successful-event-high’, I feel overwhelmed. I've cried more than once today. Not because I'm unhappy, absolutely not, but because I feel so incredibly thankful. Mainly for the people in my life who have supported me from day one in pursuing my dream of getting this book out into the world. I'm thankful for my partner James who I adore a little more every day. But most of all I'm thankful for those people trusting in me, buying my book and enjoying it, and TALKING ABOUT IBD. I hope you all enjoy my writing, I hope it sits nicely in your bathroom and most of all I hope it helps to open up conversation about IBD! Which really is the whole point. One of the best days of my life has also given me an incredible opportunity to share my story with the world. I hope it helps you tell yours; even if it’s just to the doctor.

You can buy ‘Go Your Crohn Way’ here or from all good retailers! à https://www.amazon.co.uk/gp/product/1848193165/ref=s9_simh_gw_g14_i1_r?pf_rd_m=A3P5ROKL5A1OLE&pf_rd_s=desktop-1&pf_rd_r=54BGRG8C8B5ESAGM3A23&pf_rd_t=36701&pf_rd_p=867551807&pf_rd_i=desktop

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. 

Celebrate Your Bowels, C'MON!

It’s rapidly approaching World IBD Day!

Which, as we all know stands for ‘Inflammatory Bowel Disease’. Well done class! 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 these illnesses.

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?

NOPE.

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 a dinner party held by Donald Trump and UKIP. 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 which 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 ‘IBD Day’ (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. 

On IBD day in 2013, I spoke in public for the first time since whispering a Philip Larkin poem aloud age 14, at a conference held in Birmingham aimed at raising awareness of IBD. I was asked to speak at the event by John Bradley, an author and all round lovely man. He has written on Crohn’s Disease himself (The Foul Bowel - http://www.amazon.co.uk/Foul-Bowel-Survive-Thrive-Disease/dp/0986620009/ref=sr_1_1?ie=UTF8&qid=1459157445&sr=8-1&keywords=the+foul+bowel ) and at this event he encouraged me in my pie-in-the-sky dream of writing my own book on my experience of IBD.

I went ahead and did it, and an actual real-life publisher has picked it up!

My own book Go Your Crohn Way – A Gutsy Guide in Living with Crohn’s Disease (http://www.amazon.co.uk/Go-Your-Crohn-Way-Disease/dp/1848193165/ref=sr_1_21?ie=UTF8&qid=1459154188&sr=8-21&keywords=crohns+disease) is out 5^th May!

The day after IBD Day I’ll officially ‘launch’ my book with my friends, family and favourite man in existence. If Jon Hamm is unavailable it’d be nice if my boyfriend was there too. My knees will knock once again as I try to talk in front of anyone more than my cats.

I truly hope you enjoy my writing; it contains my heart, soul and remaining guts.

I’m finally starting to feel proud of myself. Not only for writing my book; which in itself has been HARD. But because I previously thought that every nasty procedure, every stay in hospital, every day when I’m in work when I want to be hibernating in bed, was just life. My life. That I don’t deserve praise for what I should be doing. I don’t want it, don’t get me wrong, but I do want to start praising myself for these little victories. As should everyone with a chronic illness. Things such as getting out of bed, getting dressed and carrying out a day’s work aren’t akin to running a marathon for most people; but they are for us. Therefore it’s really ok to give yourself a pat on the back when you cross your own finish line.

IBD is an incredibly debilitating condition which has no cure. It causes agonising symptoms at its worst and is an endless inconvenience at best. It can be ‘controlled’ and ‘managed’ but nothing more. It affects it’s sufferers in minor and major ways, and can floor patients at the drop of a diseased hat. But it’s taught me the resilience of my fellow ‘crohnie’s’ is both surprising and wonderfully unrelenting. It’s spurned me on when situations have been as hairy and rough as my legs during a Scottish Winter. It’s given me faith in myself and my future – it’s not bleak and it’s not going to be all about Crohn’s. It’s going to be as bright as I want it to be, as bright as I allow it to be. NOT as bright as my disease allows. 

On days like IBD Day, and every day, being ‘aware’ of IBD isn’t just about learning what the gruesome side effects are; it’s also about reaching out a helping hand to another human being who might not necessarily look sick, but just might need it.  

Crohn Fine Day

Something I often wonder is when, if ever, I’ll be able to break out of that habit of trying to appease others over MY illness. I spend probably an unhealthily large chunk of my life telling people I’m ‘fine’ or implying that I’m much better than I am.

The truth is this is done 99% of the time because it’s easier. Although that does by no stretch of the imagination make it right.

Much as I talk about my illness, outside of blogging and writing I do like to try and maintain a ‘normal’ life. Something which I suppose is a goal I’m currently finding unattainable.

So where does the urge come from? This compulsion to make everyone from family and friends, to doctors, to colleagues I barely know, feel better about how I feel? And why?

I’m asked how I am but I still often find it borderline impossible to be honest. I think the key is the disappointment I receive. When I see frustration or upset flash across a loved one’s face, or even something resembling boredom from a relative stranger (‘you’re STILL ill?’) – It’s the feeling I’ve almost let someone down. My body failing is making me feel less like a social butterfly and more like an antisocial moth.

It’s important to remember the consequences of these actions however.

Denying the seriousness of your condition or dismissing how you feel as a triviality can have a much farther reaching impact than you may think. Telling your doctor you are ‘fine’ or playing down symptoms so as not to appear a ‘nuisance’ is the main issue: at the end of the day medical professionals are there to help you – they can’t do that without ALL the facts. You are a puzzle waiting to be solved, don’t expect Dr Columbo to be able to piece you together with vital clues missing. Tell them everything. Get over yourself if they look at you the wrong way, make snide comments or even YAWN directly in your face – rise above: that just makes them the ignoramus. How they react should never silence you to admitting your pain or fears. It may make it harder I grant you, but they’re not there to be your BFF.

Next, friends and family – I’m up there the worst offender for this one. I fall back into the ‘I’m fine!’ habit more than I cry at pictures of kittens in bowties (and that’s a LOT). I can’t speak for all of you of course, but for me it’s the sadness I can’t handle. The well-meaning titled head “awws” and the preceding 20 questions on why you aren’t better yet. All 20 of which I can never provide satisfactory answers to. Don’t get me wrong, I never discount the love and care of my friends and family as being an annoyance, I adore it and cherish them. I wouldn’t be who I am today without the love and support of everyone in my life: but sometimes it just exhausting being the one who has to give the bad news again and again. I don’t want to be the one who upsets people I love. That’s a natural reaction I reckon. Unless you have a heart of stone I suppose, and my heart beats for my loved ones, Jon Hamm and kittens in bow-ties.  

But it’s comforting to know that if that heart had trouble beating, there are people in my vicinity who can help with that. People who are trained to put me back together again physically, and the people I love who are trained in getting me back together again mentally. None of them can heal me if I don’t show them my wounds. So I’m trying (again) to resolve not to say ‘I’m fine’ when I’m not, and to put my health before appeasing strangers. That’s more than fine as a place to start isn’t it?