Monthly Archives: September 2015

“You Look Fine”

The three most dreaded words you can say to someone living with an invisible illness like myself.

Every day I wake up with a deep burning sensation in my gut. Right where the incision was made. To everybody else I look completely happy and healthy, living a life without pain, when honestly I’m mentally suppressing the hurt around my stoma. If I think long and hard about it enough, it will show on my face and to the world.

Like the name suggests, its an invisible illness. Something not visible to the naked eye. 1 in 2 people live with an invisible illness and this week is awareness week.

Chronic pain, fatigue, mental illness, arthritis, Chrons and IBD … Just to name a few. There are more people than you think you know who are suffering in silence.

This week I ask you all to be a little more conscious of what you say around others, for you do not know their story or their struggle. Most of us choose to live a life without question or doubt, we choose to have a ‘healthy’ preface and to soldier on through our difficult times with a smile on our face, when deep down we are hurting on the inside.

Everybody has a face they want to show the world. I choose to be a strong, independent and healthy role model who hides her pain internally for if I am to show it publicly it only gets worse.

We may suffer in silence, but the pain and mental anguish remains.

Think before you speak.

Using Your Words.

There are some things that we all find difficult to put into words. We build a foundation, install some heavy duty framing, followed by a perfectly rendered finish. The barriers and walls we form are a limitation imposed, and built by ourselves to protect us.

Let me share with you my own personal struggle – knowing when and how to tell somebody I have an Ostomy. Yes, I am incredibly open about it on my blog and social media but for some reason once the barrier of the ‘internet’ is taken away I do feel like I’m gambling. Playing a wicked game of Russian Roulette, unsure of how someone may react and if I can handle their reaction without being either upset or frustrated and angry. It’s ridiculous really. I mean, I am not ashamed by any means nor am I embarrassed by my hidden disability but I have seen the difficult others have listening and understanding my little added addition to my body and what it means, and does for me. But why do I care about what others think of something that has kept me alive and given me back my quality of life?

The answer is simple – I shouldn’t.

Over the years I have found that I have a knack for reading people and I have some idea of their reaction based on their body language and if I kind of know them. In all honesty, my fellow females often find it more difficult to listen to without welling up with tears, and to be frank, it breaks my heart to see someone cry or hold back tears in front of me but I understand the reasoning. Whereas males seem to take it a different way and think of it as being ‘cool’ or they brush it off as though it’s nothing.

I’ve had instances where I have told some people and they have misconstrued, or made my condition to either be a lot worse than it is or to make it out as though it doesn’t affect me on a daily basis. It’s as though others like to put their own spin on things and use their own words to either glorify/make you a trophy or to belittle the journey and struggle I have been through and will continue to experience for the rest of my life.

I struggled to talk to my friends in high school when I returned back from surgery. I had recovered physically, but emotionally and mentally I was an absolute wreck inside. The seventeen year old me could not match words with emotions, rather my emotions were taking control of me and my words were not coming out. I couldn’t even tell most people what had happened or why it happened to me – I was lost, confused and angry. These emotions and feelings were what took control of me and made me speechless. It wasn’t until I had come to terms with my new found body and change in health that I was able to string together sentences that were not so full of anger and sorrow, but were a little more positive.

Not too long ago, I went on a blind date with someone I met through Tinder (Don’t laugh! I was skeptical too at first – Thanks to my girl Sarah for hooking me up!). It was my first real date in my entire life I guess you could say, and I knew nothing about him except for what he looked like and that we both had a mutual love for coffee and Batman (More about this in another post haha). I went in to the date thinking “I’m going to tell him straight away about my Ostomy”, I figured, I have nothing to lose and if I never see him again at least I’ve educated one more person, right?! Within the first 20 minutes of seeing each other for the first time I had told him that I was a bikini bodybuilder and I have an Ostomy – in that order. I guess I didn’t really know what kind of reaction to expect from someone who had no idea who I was. His reaction wasn’t dramatic, nor was it shocking. He sat across from me wide-eyed and he just listened. I won’t lie, I had thoughts of him running out of the cafe or acting weird but there was none of that – in fact he stuck around and he’s now my boyfriend.

The bit of advice I want you all to take from this blog is that your emotions directly affect your words. They go hand in hand. They co-exist. There are days where I am faced with some ignorant people who think it’s their right to ask me questions about my Ostomy in an aggressive manner, and because I have a short temper this usually does not go well for both parties. My emotions take over and my response is blunt, obtuse and filled with rage.

I also have my times where I feel low and down. These don’t happen often, but I’d be lying if I said they didn’t occur. Some times if I have a leak and I’m out in public, I’ve had a bad irrigation (my medical routine to go to the toilet) or if I’m in pain, I’m thrown off emotionally and psychologically and this affects my mannerisms and my behaviour. My words become negative and it all spirals down hill from there.

The next time you want to open up to someone about something, whether it be your medical condition or perhaps something to do with your past, or maybe you want to bring up something that’s bothering you – choose your words carefully. That’s not to say you should have what you want to say carefully orchestrated, but to be mentally at peace and calm before you talk about something personal is definitely the best way about it.

Words are not just words. They are framed, shaped and moulded by your emotions and your being.

The Walls Came Down…

Everybody struggles to find their ‘significant other’ at the best of times. It’s as though we search and search, only to find ourselves looking blankly at disappointment and heartache on every corner. But then we find someone who we actually want to share moments with, to be in the same room with for longer than an hour and who we can bare our souls to. We seem to forget that the most important relationship we will ever have, is the one with ourselves.

Having an Ostomy at 17 years of age, which let’s face it is prime boyfriend/girlfriend finding time did put some doubt in my mind about ‘finding someone’. All of my friends either had a partner, were dating or were enjoying the single life without actually ever being alone. Then there was me. Hunched over, doubled-over in pain and longing for my next painkiller awaiting the next doctors’ orders.

Truth be told, I didn’t look at my Chait tube after surgery until I was completely alone and it was at the very least the second day after I had surgery. I had to have this time to reflect and try to let it sink in, that my body will never be the same both internally and externally. I will forever be changed in some light, no matter how many times my parents tried to tell me ‘you’re still the same person’. Nobody goes through what I have been through and comes out the same as they were before. It will either make you, or break you. Safe to say, looking back I have definitely came out on top!

For the next six months I battled with my body image and my mental state. I looked like I was happy and ‘better’ on the outside to everybody, but when I was alone and at home in the confines of bedroom walls I was empty, confused and albeit angry at the world. Of course the only person that could see right through me was my mother, who let me have my time to grieve and get over myself. To understand that I was the one who battled through it all and that there is nothing that anybody else could say to me to make me feel any better. Time. Time was what I needed. Time was what I was given –in every which way of the word!

It was through the failed relationships (Both partners and unfortunately best-friends), heartbreak and heartache and being used that I found myself again. Pretty sure this goes for everybody, whether they are healthy or have an existing medical condition like myself, that ‘acceptance’ is something that we all desire. We long to be accepted for our inner workings, for someone to appreciate our quirkiness and individual – what makes us all unique and true to ourselves. But how can we expect anybody to feel that way, if we don’t feel that way about ourselves?

Today, I have accepted that I have been through absolute hell and back more times than I would like to remember. I have been given a death sentence, been misdiagnosed more than anybody ever should and I have unfortunately fell through the system and been forgotten by medical practitioners and specialists. But I’m still here.

I have had days where I wanted to rip my Chait tube out (in the beginning, most definitely not now! I love my Ostomy!) and the thought of looking at myself in the mirror made me depressed, feel ugly and I couldn’t stand the sight of myself. I have felt my body waste away, and have had days where I couldn’t walk more than ten steps without breaking down into tears from sheer exhaustion and pain. I didn’t want to be touched, I hated being close to somebody no matter who they were or how long I had known them for. I wanted to be left alone and be by myself. Today I appreciate my body and my mind for all it has gone through. I can squat and deadlift more than my bodyweight, I have ran a half-marathon and I have such a great close circle of people around me who I wish I could spend more time with.

I was once ready to give up on the world. I wanted out. To sleep forever and to be rid of all the pain, mental struggle and the hurt that came with my surgery and my change in lifestyle. Today, I wake up everyday and live a life that is far from empty and dark.

Before, I could not stand the thought of talking about my medical condition or my thoughts. I was a closed book, unable to come to terms with my own issues and was not ready to share them with anybody else. Now, I am an open book. Nothing is off limits.

I am the strongest person I know, with ambition, drive and motivation like no-other. I am the hardest working person I know and I give my all or nothing to everything and anything I apply myself to. I am worthy of a life that is nothing short of a glass three-quarters full and I will never settle for anything less.

So today, I ask you as you read this to think of WHO you are and WHAT you deserve.

Find yourself, and the rest will follow.

Triumphant Transformation

We hear the term ‘transformation’ thrown around like it’s a common term nowadays. We have ‘Transformation Tuesday and Thursday’ where we boast and/or beam with pride of our achievements. We find ourselves transforming from adolescence into adulthood and we reflect on the changes that have been made – nights out getting drunk and stumbling home at 5am turn into nights in with a movie and in bed by 10pm. Transformation can happen on so many levels, yet we tend to focus heavily on the transformation that happens through diet and exercise. The physical transformation. Yes, we may reflect on the ‘I now love my body and can accept it because…’ but it’s not something that we tend to really focus on when it’s actually the most important transformation of all.

Our emotional and psychological transformation is the one that takes time to develop. It is on it’s way. Developing and unfolding before we even know it or can even recognise a glimpse of change. We are so bewildered by the fact that we can now wear our bikini on the beach for Summer with confidence and not a care in the world, but ignore the quintessential essence that is, that we have found beauty in ourselves.

Losing a few kilos and a dress size is the easy part. The maintaining a high level of self love and worth, as well as respect for yourself and admiration for your hard work and persistence is at times challenging for the most part. We lose ourselves if we focus on the physical too much, despite our goals to look good in a Wedding dress for the big day. The beauty of reaching our end goal, is the beauty that we struggle to see and/or have difficulty acknowledging.

We constantly feel like we perhaps are not good enough. We are blinded daily by the media of a celebrity who has gained weight, donning a bikini and in contrast we are shown another who has lost a tonne of weight and is lapping it up on the beach. We are shown photos. Images. Life-stills of that very moment they were captured. We are not shown nor do we hear about their emotional or psychological journey which is the most important one of all. For all we know they now have a healthier relationship with food, and an appreciation for their bodies capabilities.

This constant focus on the physical is something that needs to be changed from both the transformed, to the spectators. I don’t want to go into the cliche terms but I think I may have to – beauty is skin deep. Your physical transformation will always have it’s ups and downs. One day you will have a six pack and the next you will be sporting a one pack. It’s all a matter of time and circumstance. What you do with your mind and the way you hold yourself is another thing all together, and in my opinion is a hell of a lot more important than the striations in your delts or the veins in your forearms.

I will leave you with this thought – Do you want to be solely remembered as a beautiful mansion surrounded by water. One that has no warmth or love, with the only value being monetary and nothing personal OR as a warm home, one that is full of memories and may be showing signs of wear and tear – but at least it’s lived a life that is memorable and shows signs of hope, courage and love.

We are all a work in progress.

P.s – my physical and my internal transformation will be shared in coming days. Stay tuned.