The Oz Effect

Hi everyone! I know it’s been a few months since my last post but that’s the way ME works – you can only do things when your body allows you to (when it produces enough energy and the symptoms aren’t too severe to prevent you from doing so). I’ve been able to write a few words every few weeks… there was a time when I wasn’t able to do this so thank you to my body and to myself for allowing me to ever so slowly write this post!

You can read the chapters of my story I’ve shared with you so far, which include:

1. How It Began… Part I (symptoms)

2. How It Began… Part II (diagnosis)

3. How it Began… Part III (first year of uni)

4. Eye Of The Intern (this one is pretty self-explanatory: internships)

So where were we up to???


January 2014: I had returned to London, interned at KTZ for London Collections: Men (mens fashion week) after spending a month in the Austrian ski resort Bad Kleinkirchheim whilst catching yet ANOTHER virus, which all in all took me down to functioning at probably just under 50% on the CFS Functional Ability Scale (see below & click to enlarge). I now use Dr Myhill’s CFS Functional Ability Scale to measure whether my ME is improving, maintaining the same level or deteriorating…

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Whilst I was basking away in an Austrian thermal spa, soaking up the sun and admiring the tantalising snow-drenched mountains, I received the news that I had been accepted onto a university exchange programme at The University of Technology in Sydney, Australia!!!! My mind and body went into a total state of shock. It had been 9 months since I’d applied to go on an exchange programme and I never ever expected to get accepted. All of my skills lay in fashion or somewhere within the creative industries & I’d applied to an extremely academic university with a portfolio containing virtually no ‘academic’ skill beyond GCSE & A Level qualifications, hence why I didn’t anticipate this delightful news. I had barely told anyone other than my immediate family and a few uni friends that I’d applied so when I returned to London and casually announced I would be moving to Australia in 3 weeks time for 7 months… I think everyone was as shocked as I was!

During the last few weeks I spent in the UK, I made the most of my free time (as always) travelling here, there and everywhere trying to say as many goodbyes as possible, despite still suffering (I hate using this word but it’s the only one I think is appropriate here) with the virus I picked up whilst I was in Austria. My friends and I knew that I was no longer well enough to go out clubbing to celebrate so we would have to spend our time either at home, going shopping or to a restaurant but still at an unrealistic, massive push on my behalf.


Breakfast at Harriets Cafe Tearooms in Cambridge


I remember visiting my friend in Cambridge and we were unable go on the night out with all of her friends, despite already knowing that this wouldn’t be possible pre-visiting her, I still felt guilty, ashamed and frustrated with myself and my body that I wasn’t capable of doing what everyone else was. I also felt like a complete let down as if somehow it was all my fault that my body wasn’t able to do what I wanted it to. This was really the point where ME became prevalent enough in my life that I started to develop new emotions and attitudes towards it that I hadn’t experienced until now. It felt as if these unruly emotions were bubbling inside of me, surfacing, gasping for air, desperate to be heard but all I wanted to do was stamp them down, keep the lid closed, locked and to throw away the key.

A few weeks later I found myself in the exact same situation whilst visiting friends in Sheffield. Even though everyone knew I wouldn’t be able to leave the house that night, I felt like I ‘should’ have been able to. This term ‘should’ began to dominate my ME life for years to come. It was sort of the motivation to push myself, the constant ringing in my head, “I should be able to do this” because when I was healthy I could. It never once occurred to me that it was okay to not be able to do things because I had a chronic illness. At that point all I knew was that those few weeks of travelling had caught up with me and ME felt like a giant ogre who was constantly leaning over my shoulder, stalking my every move, anticipating my next downfall, just watching, waiting for it to happen. It didn’t have to wait long as those few weeks took their toll on me and I spent my last day in Sheffield on the sofa barely unable to talk let alone move. It was my friends who actually said to me, “You’re not okay are you, you’re really sick today, you really need to slow down Emma.” Deep down I knew they were right, I was filled with dread just thinking about how I was going to make the journey home. How had the looming few hours of travel become such a torturous and debilitating hardship on my body so swiftly, so soon? I wished and wished so badly that I could just curl up on their sofa for at least another week to take respite from the burden I had unleashed upon my body. You can probably guess from my previous posts how I chose to handle this one though… I shrugged it off, disregarded my new reality and soldiered on, determined as always to not let ME win this war.


February 2014: That activity filled January ensured that by the time I moved to Australia I was probably down to functioning at a little over 45%. I was no longer able to travel abroad alone, find somewhere to live alone and move into a new place alone so my lovely momma had to take a few weeks off work to assist me. Aside from all of the things we ‘had’ to do whilst she was there with me, I expected a fun-filled trip full of exploration, adventure and exciting escapades (somewhat relatively within my ME limits of course) but things didn’t really turn out as I had planned. 

The impact of ME on my capabilities proved more significant than ever before. Until this point in time, my attempts to keep up with other ‘healthy’ folks lasted only a few days at a time, at most before I retreated to my bed in order to recover from these activities. Striving to keep up with a healthy being for two weeks straight was a completely different story and took my ME symptoms to a whole other level. It was those few weeks of constantly comparing myself and my abilities to a ‘healthy’ person that sparked something inside of me making me a little more aware of how ill I had become (and remember I’m saying a little more aware not fully aware), for the time-being at least, anyway.

Something about that trip didn’t sit well with me. Looking back to the month before, it was my mum as well as my friends who had been warning me of the damage my gallivanting was doing to my body. She repeatedly told me to stop, to slow down at least, as she could see how my way of life was taking it’s toll. Things quickly changed tune though as soon as we arrived in Australia and she literally wanted to go EVERYWHERE and do EVERYTHING regardless of  the limitations my health imposed upon me. A typical tourists guide to Sydney book may as well have been written for us with the amount of activities we filled our ever expanding schedules with. I so desperately wanted to keep up, to be capable of doing everything she had hoped for in order to ensure that this was a ‘trip of a lifetime’ for her. I soon realised that this wasn’t possible though when after just a couple of days I was already silently struggling. Once again those feelings of guilt, shame and embarrassment ran wild around my head. Unexpectedly, those feelings quickly turned from how I felt about myself to how I felt towards her. I was confused as frustration and irritation took charge of my emotions. I didn’t understand how I was ‘too sick’ to try and keep up with my friends yet I wasn’t ‘too sick’ to keep up with her. It wasn’t fair. It wasn’t fair at all. It was as if it was one rule for my friends and one rule for her. And the truth is, since then that is generally how ME has worked out for me so far – everyone wants me to use my energy on them but as soon as it’s spent on other people they tell me I shouldn’t be doing it. Something I’ve learned along the way is that people can be very selfish can’t they. It takes a selfless person to give someone space to allow them to heal in their own time.

I look back now though and I’ve realised that I’m partly to blame for the situation I found myself in because people have no idea how sick I am unless I tell them. They don’t know if I’m well enough to do something or not, unless I tell them and they don’t know how I’m feeling both physically and emotionally, again, unless I tell them. The reason behind this is because my illness is invisible. I don’t ‘look’ sick do I? You look at me and I look healthy don’t I? I can walk some of the time, I can talk, I smile and I laugh so why would you ever think that there is anything ‘wrong’ with me? This is probably because I was so accomplished (if I say so myself) at hiding the truth of what was happening to me for so many months, so many years.

I guess if I expected anyone to know how I was feeling, it was going to be my mother but through this journey I’ve learnt a lot and one thing I do know is that’s not the way invisible illnesses work. This is the first time I witnessed my illness starting to create cracks in my relationships, it added a new dimension to them and an unwelcome one at that. Yet despite the ups and downs of our trip and this slight hiccup in my rocky road, those few weeks my mum and I spent together were indeed some of the best I’ve ever had and it was in fact the trip of a lifetime we had both hoped for.


At Fu Manchu, a cosy Chinese joint in Darlinghurst.


At the Archibald Foundation in Hyde Park, central Sydney.


Here we are all dressed up in the Chinese Garden of Friendship (yes we are in Sydney not in China).


March 2014: Following my mums return to the UK, I was able to get some relief for a few weeks in the form of complete bed rest before I embarked on my dauntingly academic university semester. When uni began, I was still spending the majority of my time in bed apart from the required 1-3 hours per day, 3 days a week I was required to attend. I actually can’t remember what course I had applied to study for (cognitive dysfunction including memory loss is a symptom of ME and has become more severe as I’ve deteriorated) but I do remember that it was within the Communication Faculty. Whatever course it was that I’d applied for was unexpectedly full when I went to enrol and so was the one I applied for after that and again the one after that. I didn’t realise that I had been accepted into the FACULTY not the COURSE and being accepted onto a course came on a sort of first come first served basis. Bizarre I know. Absolutely nothing like UK universities. Then I started receiving letters from the VISA people saying I was ‘BREACHING MY VISA’ and if I didn’t enrol soon I would be deported!!! I’m not even joking. Australia is actually crazy strict with letting people in and out of their country. That was it! There was no effing way I was going to be deported or be an illegal immigrant of some sort so I stormed into UTS demanding to be enrolled on whichever course was free! React first think later is the way my brain usually works.

And what did they pick… JOURNALISM… it couldn’t be that bad could it? I mean, I had already studied fashion writing as a module at uni so how different could it really be? Oh dear… oh dear… my first day went something like this: Head of Journalism Course – “If you’re here to write about fashion then you’re in the wrong place. If you want to write about Chanel then you’re in the wrong place.” THOSE WERE HER EXACT WORDS. Why?!?@?@@? What was wrong with Chanel? The holy grail of fashion! How dare you insult Karl Lagerfeld like that! What is wrong with these people! That was my initial reaction and then it began to sink it, ‘Oh shit, I’ve ***** it really haven’t I’. What else was I going to write about in my career other than fashion? Oh well! Nothing I can do about it now! I later learned that this wasn’t a broad ‘journalism’ course, it’s objective was to train pupils for jobs at the likes of ABC NEWS or SKY NEWS. Could you possibly get any further from the fashion powerhouse known as Chanel? Luckily, my intention of moving to Australia was never for the university… I was there was for the fashion of course. Come on, what else did you expect!


April 2014: Australia was and still is an emerging fashion capital. I had been following Australian Fashion Week for a few years as well as witnessing the break out of many fashion designers onto both European and American fashion scenes. It was an industry not too small that I couldn’t gain quality experience in the industry and at the same time it wasn’t too big; meaning I wouldn’t end up being a tiny fish in an ever expanding deep blue ocean (this is how I felt in London most of the time). It was the right place and the right time and this international exchange was my chance to capitalise on that.

Mercedes-Benz Fashion Week Australia was rapidly approaching so I did what I always did during the run up to fashion week and sent out email after email after email applying for internship after internship after internship… which resulted in lots of email sent versus a mere few responses. A few weeks later, fashion week had begun and still NO responses. CLEARLY I was doing something wrong here. This wasn’t how it usually went for me in London. Maybe things worked differently here? I had a little cry; telling myself maybe it just wasn’t meant to be, maybe I wasn’t going to get the fashion experience I had hoped for and that was okay with me (oh lordy lord it wasn’t but sometimes we just have to pull ourselves together and tell ourselves that). Those tears were swiftly wiped away when FINALLY I received a phone call from a super sassy lady who was/is the founder of the online creative space Fashionizer.TV. I’d made it through the first round YESSSSS (CV, cover letter and social media – check!) now onto the second round… TASK TO COMPLETE: Catwalk review of the Diesel Black and Gold show from New York Fashion Week. YESSSS this was my forte. Designers. Catwalks. Reviews. Fashion Week. I did this for fun. Yep I’m not even joking. It was my time to shine and I had this one in the bag. I knew it was mine. La di da di da, plenty of twirling and dancing occurred at this point as I knew some magic moments lay ahead.  A little bit of self confidence never hurt no-one. Rule No.1 self doubt never gets you ANYWHERE, especially in fashion. Self-belief? Confidence? Arrogance? Is there really any difference? (that’s a joke guys) (okay maybe it isn’t) (I never can tell myself whether I’m actually joking or not)

The next thing I knew I was on the phone with super sassy lady, aka Sophie for what was meant to be a telephone interview but turned out to be something that resembled two old friends obsessing over everything and anything fashion, including Karl Lagerfeld’s latest Chanel extravaganza. Now this was my kind of work, no ABC News, no broadcast journalism, just pure and simple FASHION. A day later and I was inside fashion week having a face to face meeting with super sassy Sophie. I was being grilled. Hard. My fashion knowledge was being put to the test. In particular… designers. European. American. Asian. Australian. The lot of them. She wanted to know what I knew and more. You see, Fashionizer.TV went around the world filming the shows at fashion week to create an online world of fashion films and it would be my job to write the accompanying catwalk reviews as well as covering the shows via social media. The thing is though, we were in Australia and this was Australian fashion week and my knowledge of Australian designers wasn’t my strong suit (that’s putting it mildly). I could see it in her eyes as she began to doubt me, you know when you just know when an interview isn’t going well, it was one of those ones…

But then out of nowhere, something ignited a tale from long ago, a stroke of luck perhaps? That memory flashed by like a magical sparkle before my eyes. I was 14 years old; it was around the time my true love for fashion began and the first time I lay eyes on a pair of Sass & Bide black rat leggings – on Russell Brand’s legs. Yes I know he isn’t your typical 14 year old girls fashion icon but he was mine. Next appeared Sienna in them and then came Kate… that was it – I simply HAD to have them! But they were sold out EVERYWHERE!!! (lots of tears involved). A few months later I stumbled upon them, straight ahead, there they were… dazzling & gleaming like angels with a shimmering halo shining down upon them… okay so that was probably just the strobe lights in Harvey Nichols but you get what I’m saying. This was a magical moment for me. My 14 year old self spent every penny I had (£106 in total) on those leggings. Kate Moss had them so why couldn’t i? The key to this story is Sass & Bide were a powerful Australian brand who had just broke out onto the worldwide fashion stage and I told super sassy Sophie THAT is the reason I had to have them. A little white lie never hurt no one. Her reaction was, “You’ve got the position. Do what you do for your social media but do it for us”.

Here are some of my favourite street style looks from Australian Fashion Week…

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One internship just wasn’t enough for me though was it. That Type A personality of mine you are probably beginning to know so well kicked into overdrive. I always wanted more. MORE MORE MORE. This is one of many mantras that underpins the way my brain works. The second internship I took on was largely out of my comfort zone, I’ve always welcomed a challenge though. This wasn’t high fashion. It was eco-fashion. This PR, digital marketing and social media position at the sustainable jewellery brand, Zefyr Jewels is what stemmed my interest into an entire world of wellbeing, which at the time I never really knew existed. I didn’t really understand the significance of combining fashion with a world that was so far apart. This was in 2014 then did you notice how 2015 was the year when health became cool? Green smoothies, yoga, mindfulness, juicing, spiralizers, Deliciously Ella,, Soul Cycle, active wear – these are just a few things that dominated social media in 2015. I’ve gone a bit off topic I know but now my life is a constant balance of fashion and health, worlds I never thought could fit together but surprisingly they go hand in hand.

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May 2014: For the next couple of months I attempted to juggle a combination of university, interning at Fashionizer.TV, interning at Zefyr Jewels, a social life and a relationship, as well as having a chronic illness on top of all of that and quite frankly, I couldn’t do it. It was proving more and more difficult for me to hold on to my life as I knew it and another great ME downfall had already begun. Those feelings of frustration and irritation escalated into exasperation and resentment. I began to hate everyone, to hate everything. At the time I had no idea why I was feeling this way, no idea whatsoever because clearly I was still in denial about having ME let alone the severity it had reached but I look back now and I know that subconsciously, I was jealous. I was really ******* jealous. My life was falling apart before my eyes and there was absolutely nothing I could do about it. Every single day I watched others live their life as mine passed me by. Why me? Why not them? What did I do to deserve this? These are questions I asked myself on a daily basis, for months which later on, turned into years. Nothing made sense to me at the time. I was constantly being told that I’m living the life, I’m living the dream, how lucky I was to lead the life I had and at times I believed it but subconsciously I questioned – was I really? (I guess the saying you never know what goes on behind closed doors is perfectly apt for this situation) And now I finally know the answer to my question and it’s the simplest of them all… life isn’t fair. Life truely is not fair.


Daniela and I at Fort Denison, a former defense site just outside Sydney Harbour.


Daniela and I at the Biennale of Sydney on Cockatoo Island.


June 2014: My downfall was escalating at a rate much faster than I’d ever experienced before. By the time my university term was coming to an end, I could barely make it in at all and one day when a friend questioned, “Where have you been you’ve not been in for ages?” I answered, “I’ve been in bed remember I told you I have ME.” She laughed as she responded, “Yeah right we all get tired so what have you really been doing?” I couldn’t deal with it. I couldn’t deal with her. Her ignorant question. The truth of what was happening to me. It was too much. I wasn’t ready to give up, to give in as I saw it. I still had that drive inside of me, that drive for life, to live it, to live it as much as I could for as long as my body would allow me. No matter how hard I tried to fight it though, to ignore it and push through, day after day ME was ever so slowly chipping away at my life, my abilities and everything I had ever loved. Before I was even diagnosed, it had already taken away my ability to work full time, then soon after my ability to work part time and now it was ultimately time for me to give something else up to ME. Now what would it be?

Interning at Zefyr Jewels only required me to be in the studio half a day a week as I was able to do most of the work from my bed, literally. That abruptly came to a halt when one fine day, during my weekly stroll to work, as I strived/endeavoured to climb the set of stairs that led to my destination on the other side, something switched in my body. The on switch was the switch that allowed me to walk but when that switch unexpectedly flipped, the off switch took that ability away. Hopelessly, I half crawled/half collapsed up those stairs, when an elderly man came over to me, concerned, worried almost, asking if I was okay, did I need some help? My reaction was something like this, “No thank you. There’s nothing wrong with me. I’m absolutely fine.” Yes sometimes my brain is actually delusional. I actually thought to myself, why is he asking me this?! I evidently still thought I was invincible and that my illness invisible. I made it to the studio, lasted an hour, returned home to bed and was never able to make it back again. Zephyr Jewels is what I gave up next and ME had made that decision for me. How far was I willing to push my body before I accepted the truth, the reality of my new situation and my new limitations? I still had no clue whatsoever how sick I had become and absolutely no clue for what was in store for me next.


July 2014: A combination of fashion and travel underpin most of my dreams in life and I had always intended to travel once the university term came to a close. I had been given two months. Two months to do whatever I liked. Two months to explore. The thing is, when that time finally came around, realistically I knew I was too sick to travel. I’d been in and out of the doctors like there was no tomorrow with my ME symptoms becoming more severe by the day. I knew I needed to return home. I knew I needed help. Each week as I Skyped my parents, I broke down in tears. Repeatedly saying I need to come home. I need to see a doctor. I need help and they sympathised with, “We know you’re sick. you have ME.” I just couldn’t convey to them how sick I had become. So much had changed in just a few months. It felt like I had been sucked into the vortex of a tornado with all these pieces violently swirling around me. Only I was getting sucked deeper and deeper and there was no way out. I couldn’t do it though. I couldn’t leave to return home. I would never forgive myself if I didn’t try, just to push myself to go a bit further, to live a little more. I knew if I didn’t carry on with this adrenaline fuelled journey, my body would crash and burn and then everything would change. Realistically I wasn’t going to return to the UK sooner than I had planned and if I chose to stay in Sydney I knew I was committing myself to two months in bed. I knew what I needed to do. I had to stop once and for all, to let my body recover from everything I had subjected it to but I wasn’t ready to put out that fire burning deep inside me, that drive to live life to the full. I wasn’t ready for my world to become so different to that one I desired and had sampled (you can probably tell from this paragraph of conflicting thoughts how torn I was; which road to take next, which one indeed)?

I made my decision and so I set off, on a new journey of exploration, adventure and discovery. This chapter began with a trip to the wild, wild west (okay no it didn’t I just wish it did for the sake of this story). Where we actually went was to The Blue Mountains, the rugged region, west of Sydney, still in the state of New South Wales. Known for it’s dramatic scenery, steep cliffs, eucalyptus forests and waterfalls; we were in absolute awe as we trekked our way along the bushwalking trails, through the sandstone rock formations and the mountains of the National Park. This was the most beautiful place I’d ever seen. As we made our way from the local town Katoomba up the mountain heading towards Echo Point, yes that’s right I was climbing a freaking mountain, each step I took became more and more difficult. I half stumbled, half staggered my way to the top (with A LOT of help) only to reach the top and feel so painfully ill I lay down for a while whilst trying to catch glimpses of The Three Sisters, the sandstone rock formation in sight… Oh did I mention I was doing this with a virus. A virus on top of ME. They takeover my life I swear. Would another chapter of my ME journey even exist if a nasty virus didn’t come out to play?


The Blue Mountains.

A few days later and I soldiered on to my next destination, The Great Ocean Road on the South-East coast in the state of Victoria. Home to the famous 12 apostles and the Loch Ard Gorge, both situated in The Port Campbell National Park. This destination was even more beautiful than our last, which I didn’t think could even be possible. Along this great scenic coastal road we wound our way through waterfalls, surf beaches, resort towns and rainforests, up into coastal bushland only to be surrounded by wild king parrots and Koalas slumbering away in their natural habitat. Thankfully most of this trip was spent on the road (sitting down) with just a few pit-stops along the way. Sometimes I was able to venture out for a few minutes whilst at others it was just too much for my body to handle. I guess an ME body kind of picks and chooses what it’s capable of doing, leaving the person with no say in the matter and no control over it whatsoever.


Louise and I on The Great Ocean Road.

Each place I travelled to appeared to be even better than the last. I was falling completely in love; no country I’d visited before was so vast so diverse and there was still so much left for me to explore. Our next stop Melbourne went on to be my newest favourite spot. Victoria’s coastal capital couldn’t be more different to Sydney. It was cool, contemporary, communal and had an art precinct I could have literally moved into there and then. I could see myself living here, building a life here, this was my kind of town. In my eyes, Sydney was too cosmopolitan, too business like, to me it was a stop over destination, not somewhere I could see my future.

I’m not too sure what happened to me in Melbourne but something changed, something else began to break inside my already broken body. Walking on flat ground was becoming more difficult as each day went by and climbing a flight of stairs had become virtually impossible. I remember one time, my friend uttering under her breath, “It’s so lazy to take the lift all the time”.





Anyone who knows me knows that the last thing I am is LAZY. I mean c’mon, two years prior when I’d been diagnosed with ME, the medical professional who diagnosed me, told me to stop using stairs whenever possible because they were already proving to be a struggle. Two years before!

Then one day whilst strolling down one of Melbourne’s tree-lined boulevards, something snapped. It was if I was being held together by a tiny piece of string and that string finally snapped. I could’t walk anymore. I just couldn’t do it. I was too embarrassed to say anything so I conjured up a little white lie explaining how I had to meet someone or go somewhere so we arranged to meet back at the apartment later that day. However, I didn’t meet a friend. I didn’t go anywhere. I shamefully crawled into a taxi, crawled back home and crawled back into bed. My legs had given way. I could’t walk. I couldn’t stand. I couldn’t even be out of the bed.

Later that night I pretended to be okay. I pretended not to be sick. This is the way I had dealt with or more appropriately not dealt with ME for the last 7 months. It was my not so little secret and I continued to hide it from the world. During the entire time I was in Australia, not a single soul knew the severity of what I was hiding, I may have occasionally passed it off with, “I don’t feel well” or “I’m not up to doing that” but nobody knew the gods honest truth of how sick I had become. That night was also the first time I noticed the cognitive effects ME can have on the body. As we lay in bed watching the dark fantasy film, Maleficent, I just couldn’t do it. My brain as well as my body had begun to shut down. Memory loss, concentration difficulties, difficulty processing information were all symptoms of ME and I’m not talking on the level healthy people experience these things, I’m saying these symptoms actually limit your capabilities and prevent you from doing so many activities you never anticipated you would no longer be able to do. The first time a new ME symptom appears it can be daunting, terrifying almost because you have absolutely no idea what is happening to you, no idea how bad it will become so all you can do is hope for the best.

It actually pains me to say what I did next…

I went to the outback.

Yes I travelled to the outback.

As we touched down in Alice Springs, a remote town in Australia’s Northern Territory, 1500km from the nearest city and in the middle of the desert, I actually began to feel a little better. I’m beginning to notice a trend here, when I’m away from cities and I’m in remote outdoor places my symptoms aren’t as severe. Remember the same thing happened when I was in an Austrian ski resort the Christmas before? Does anyone know why this could be? That initial change didn’t last long because guess what I was in the outback for… to go on a hiking trip!!!! Why oh why do I do this to myself!!! Self destruction perhaps? Denial?


Louise and I at a Katu Tjuta look out point in the outback.


Charlotte & I camel riding in the outback.


Three days and 20km later. Things weren’t looking good for me. I saw most of that trip through a blurred hazy vision, in a sort of altered reality, as if I wasn’t even awake, I was in a dream. My focus on the hikes wasn’t to take in the astonishing surroundings but to try my damned hardest to stay standing up, to stay conscious, whilst blocking out all of my 25+ throbbing symptoms as best as I could. My final hike was cut short and I returned to the van, slept for a few hours then woke up once again pretending I was absolutely fine whereas inside it felt like my body had been shattered into a million pieces.

How was it possible another destination could be as beautiful as the last? But it was, one of the most breath taking places I’ve ever been. Tracks tells the incredible true story of one women journey 1700 miles across the Australian outback from Alice Springs, past Uluru all the way to the Indian Ocean. It is possibly my favourite film of all time.


I had one last push left inside of me, one last attempt ready to be unleashed upon the world. You probably are wondering why? Why did I do this to myself? Why did I push my body to such extremes? Despite being a Libra and constantly striving for balance, my life has never really gone that way. Those of you who personally know me will know that I’m all or nothing, with no in-between. I can be intense, erratic and reckless at times. I live life beyond 100 miles per hour, or at least I used to. Once I set out to do something I did it to the upmost best of my abilities and I dedicated every single ounce of me that I possibly could with no giving up, no giving in along the way. No dream was ever unattainable, the skies were my limits and there was no stopping me.

That one last push was all my body could take and I saw my travels come to an end with a trip to the East Coast to sail around the Whitsunday Islands. I won’t go into details of how my health continued to decline because I would rather look back on my final trip with fond memories, not as a warning sign of what was to come. Looking back now it also makes me feel physically sick thinking about the way I treated my body and ultimately, the long term damage it caused me. I sometimes wonder, was it self-destruction? Is that another of my hard-edged personality traits?

The video below is a magnificent memento from our final trip. Showcasing some of the 74 Whitsunday Islands, which lie between the North East coast of Queensland and The Great Barrier Reef, this massive stretch of coral bursting with marine life was our playground for the week. Most of the islands are uninhabited so we island hopped between the dense rainforests, hiking trails and bewitching beaches. Whitehaven Beach is without a doubt the most breath-taking beach imaginable. Its pristine white silica sand is so pure its used to polish fine jewels and the crystal clear aqua waters ensure it’s a must-see spot. See for yourself with the video we filmed with a Go Pro below.


August 2014: On return to Sydney my capabilities were lower and my symptoms more severe than ever before. My body went to another level of shut down but I still wasn’t finished, I still wasn’t done with it. Seven days later and I pushed myself beyond belief to spend a couple of hours sitting down in a club (whenever I entered a club the first thing I would do would be to scan the room for a chair then panic if none were to be found – how had standing become such a daunting task?), with one drink and one cigarette only to spend another 7 days in bed and to do exactly the same thing a week later. This became my pattern for a few weeks, then one night everything changed. That switch that controlled my abilities flipped again. A few hours later my concerned friends found me out cold on a sofa. With one on either side, they carried me home, lifting my body weight off my legs as my body was too weak and too broken to stand and walk alone. I haven’t touched a drink or a cigarette since then. I also passed it off as I must have had too much to drink but deep down I knew this wasn’t the case.

I spent the next few weeks in bed, leaving the apartment once or twice at most. My shopping was done for me and food brought to me as I lay there so desperately waiting for relief. That relief never came and I was only forced to leave the apartment when it was time to return home to the UK. When we arrived at the airport, fear set in as I realised I can’t do this, I cannot walk around this airport. It’s no longer possible. I thought I must have a virus – this is what usually happened when I caught another virus wasn’t it? Things got worse before they got better, only this virus was MUCH worse than any I’d caught before. As soon as I sat in that wheelchair at the airport all I felt was relief and in some messed up way, filled with denial I actually thought – it’s ok I will never need to use one again it’s just this once. This didn’t turn out to be a virus though did it. This was ME and as I stepped out of that wheelchair and onto that plane my body was down to functioning at just above 30%. I no longer had moderate ME and I ever so slowly edged my way into the category of ‘Severe ME‘.

PS. Until I returned from Australia I really didn’t know ANYTHING about ME. I didn’t know about the CFS Functional Ability Scale. I didn’t know about the different severities you could have it. I didn’t know it could get worse. I didn’t know how bad it could honestly be. It’s only with hindsight that I can work out from looking at the scale how sick I was and how sick you can become, which is why I repeatedly say ‘at the time I had no idea’ because i really didn’t. I was completely ignorant about the illness and completely in denial the entire way through Australia about even having ME. Even though I say that ME is an invisible illness I do think that those close to me could tell I was sick by the way I looked in person and photos. The no make-up, no tan, no nails, I no longer had the energy to do anything that made me look like me so sometimes I looked at myself and sometimes I don’t even see me. As you can see living life with ME is a constant roller coaster of ups and downs and as I continue my journey I hope you learn and gain some understanding and awareness of ME, from sharing with me this ever so rocky ride.


Eye Of The Intern

So far i have shared three chapters of my story with you. You discovered how my ME symptoms developed in How It Began… Part I. I then shared the journey of my diagnosis in How It Began… Part II moving on to describe how I managed my first year of university with ME in How It Began… Part III. It is no longer the beginning as we are now half way through my voyage, I’m sure you will be pleased to know? Also BEWARE, some swearing exists in this post and I’ve politely substituted **** so fill in the gaps as you please!

September 2012: When I first moved to University for the Creative Arts (UCA) in Rochester, Kent, I had two plans: to flourish through my first year of university, which I can proudly say I successfully accomplished and to gain as much experience whist making as many contacts in fashion as possible, which is the tale I will share with you now.

When approaching the subject matters: INTERNSHIPS and CONTACTS, my initial thoughts were ****!!! How am I going to do this! I don’t know anyone in London and have no clue what the hell I am doing! We didn’t learn how to make contacts or how to get internships at school, or at college, even though I was studying fashion (it doesn’t make sense does it, shouldn’t this be part of the curriculum?). As always though, I was determined to succeed and to find a way to get my foot in the fashion door.

Fortunately, someone, somewhere must have been watching over me because almost immediately after moving to uni, when my mum attended one of her regular golf dinners, she discovered that her friend, Judy had some rather intriguing information, “Oh btw (Judy drops in the conversation casually) my sister works in the same building as a really famous fashion person.” My mums response was exactly the same as mine would be, “WHAAAAAT!! Find out who it is, now!”. This could be an extremely useful contact to have and it turned out to be no other than Sarah Doukas, founder of Storm Model Management and the women who discovered Kate Moss at JFK airport in 1988. OMGGGGGGG OMGGGGG OMGGGGGG it even turned out my mums friends sister, Sheron, was friends with her! What were the chances! That was it, we had to meet Sherron and find out more.

An impromptu meeting with Sherron at The Shop at Bluebird on the famous Kings Road in Chelsea had me nervous with excitement. It was sort of like going on a blind date, although my mum was also attending the date (awkward). Sherron used to run the Spa & Beauty area in the coveted concept store and introduced me to all of the staff who were simply fabulous. It was a marvellous afternoon and Sheron seemed to have many contacts to aid me through that ever revolving fashion door. These contacts included Gucci (ahhh hallelujah hallelujah) who are known for having an automatic delete system when people email them regarding internship opportunities and mine was being handed to them personally. This was it… definitely going to land my dream internship and then obviously get amazing job at Gucci and life will be made forever. That’s how this interning thing works right? It’s safe to say that I was a tad optimistic upon my big move to Kent/London because I never actually heard anything back from Gucci (insert crying emoji here). Oh well, onwards and upwards!

November 2012: Sherron was most definitely an angel sent from above. The Shop at Bluebird were hiring a visual merchandising intern and I had an interview for the position! It was straight down to business in the interview when the first thing that came out of the managers mouth was, “Before I worked here I worked at Prada’s Head Office in Milan. So, what do you do?” OH NO!!! What was I supposed to say, “I’m a 1st Year Fashion Promotion student at UCA?” WHAT HAVE I GOT MYSELF IN TO?!  I had seriously thrown myself into the deep end with this one. Feeling extremely frazzled, embarrassingly under-qualified  and completely overwhelmed, I without a doubt resembled Bridget Jones mid-major meltdown. All I could do was think fast so I turned the conversation back to when I first met her on my visit with Sherron and we bonded over our shared love of Tim Walker’s latest exhibition and complementary book stocked by the store. Thankfully she remembered me (imagine if she didn’t) and the fact I knew Sheron definitely lifted her sullen spirits… it was all laughs and giggles from then on! This is when the phrase ‘It’s not what you know, it’s who you know’ became a confirmation for me. The feedback was positively positive as they expressed their desire to take me on; although they needed me to work full-time and I couldn’t commit to that, so I had to pass on my first internship offer unfortunately. Although deep down a wave of relief came over me; at this starting point I was already terrified of how/if I would cope with an internship as well as uni whilst having ME. If you are a Made In Chelsea fan then you may have seen them filming at The Bluebird before, if not see for yourself this staggeringly stunning space. (images from Google)


January 2013: My next internship opportunity arose after I scrolled upon a friends Facebook status, shouting about how she had managed to secure internships at both Topshop Head Office and with the upcoming designer J.W. Anderson. She had no experience in fashion (unlike me), had never worked in retail (unlike me) and was in her first year at a notoriously bad fashion course in the North of England (unlike me). I had no idea you could get internships with so little experience/qualifications as I had been relying on contacts thus far so if she could do it then so could I. (Feel like a bitch for writing that but just observing the facts!) Considering she had already secured the internship, I kindly asked her for the contact email address at J.W. Anderson and suggested how exciting it would be if we interned there together. Unfortunately for her, she thought otherwise. She refused to give it to me and claimed she had spent days looking for it, her answer was strictly NO. What a BITCH. She was supposed to be my friend. Screw her… I’m going to find this email and get this internship myself! Within five minutes I had an internship with J.W. Anderson (not even exaggerating) and was hysterically screaming down the phone to my boyfriend, “I got my first internship!!!!!!!!!!!!” “I didn’t even know you were applying for internships?” he replied. “Neither did I until five minutes ago!”.

It turned out that my ‘friends’ university wouldn’t let her take time off to go to London to intern so I guess some call that Karma? Further down the line she had the audacity to come to me asking for my internship contacts and what was my response? Strictly NO. Double Karma?

Below I’m with the other J.W. Anderson interns on our way to the Womenswear Autumn/Winter 2013 show at London Fashion Week. (spot the blonde, that’s meeeee) You can read a blog post I previously wrote about interning at J.W. Anderson here.


At that point in time, the only people who knew about my ME were my immediate family and closest friends. I didn’t tell anyone at J.W. Anderson about it as I didn’t want to be treated differently to the other interns. I guess I was trying to contain it to my inner circle so if people didn’t know about it, it didn’t exist? Yes, I was still in denial and quickly became skilled at excuses and little white lies to cover my ME footsteps. It began on my first day of interning when I discovered we were expected to stay at the studio until 1/2/3am each night, only to return at 9am the next day. This was a highly unrealistic goal for me to achieve so I began to alter reality with ‘lies’ that couldn’t be mistaken for excuses as to why I couldn’t commit to these astonishing hours. I didn’t want to appear as if I didn’t care or that I wasn’t willing to work hard because I was, probably more than anyone, my body just wouldn’t let me. Deep down I must have been acknowledging the ME because of the adjustments I had begun to make to suit it, I just wanted to keep it my little secret.

June 2013: The severity of ME is measured by your functional ability level (see below). This is how I know whether my ME is improving, maintaining the same level or in this scenario, worsening. It had been six months since I first interned at J.W. Anderson and I found myself interning there once again. Looking back now, a significant deterioration must have happened in that period of time because this time around, I found interning almost impossible. I went from functioning at 70% to 60% and I continued to tell no-one at J.W. Anderson about my M.E. My inner circle was as tight as ever, the secret was bound by strong ties and I continued to blog showing no clue to what was going on behind closed doors.

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click on image to enlarge

In my blog post about interning at J.W. Anderson the second time around, I initially wrote about returning to J.W. Anderson to work on both the Menswear Spring/Summer 2014 collection and the Womenswear Resort 2014 collection but only one collection was mentioned in my post.

After the Womenswear Resort 2014 collection was complete and the lookbook had been shot, it was time to move onto the Menswear Spring/Summer 2014 collection. I had worked at J.W. Anderson for the lead up to fashion week before so I knew what was expected of us. Mentally I was ready for it and physically I thought I could only assume I was ready for it. It had only been six months since the last show so surely I could do it again, couldn’t I?

As show day drew nearer, the nights got longer and with every twenty-four hours that went by, I pushed my body, I forced it to function and I demanded from it every ounce of strength it could give. We worked from 9am until on average 2/3 am, seven days a week with not a minutes break (you ate lunch on the go) and it got to the point where the staff were even asking us to stay on their sofas, not far from the studio in Dalston so we spent less time travelling back and forth from our own places.

I knew things were coming to an end when one evening I was told I had to sprint to the nearest Tesco (it was midnight and about to close) because Jonathan wanted cigarettes and he wanted them NOW. But Jonathan wasn’t in the studio working was he, he was out to dinner with friends at a local Dalston restaurant. Were they serious? Were they actually asking me to do this? I didn’t have time to think, I had to leave there and then to make it in time and god forbid what would have happened if I didn’t. Fired maybe? There was an army of interns at the front door desperate to take my place (yes the fashion industry really works like this). Upon arriving at local hipster restaurant, I expected some sort of gratitude for doing this, especially considering I was doing this for FREE after all! But no, I didn’t get it and I didn’t even get an acknowledgement when I put the cigarettes right in front of him. He continued his intimate conversation with super stylist Benjamin Bruno as if I hadn’t almost killed myself to do this for him (of course he had no idea of my ME, that is beyond the point though). I walked straight out and never went back! Well, actually I wish that was the case – It seemed the iconic fashion film ‘The Devil Wears Prada’ was becoming my reality.

My friends and family called my experience of interning ‘slave labour’ and couldn’t understand why I was doing it to myself but I knew that is how most interns in the fashion industry are treated and if you didn’t do it then you would be replaced almost instantaneously, have no experience on your CV and you would never get a real-life paid job (yes they do exist). I found myself in a familiar territory, torn between my career and my health. I didn’t have to make the decision though because my body decided for me when it took ME to a whole other level. When I woke the following morning and placed my feet firmly on the floor, the excruciating pain shooting through them up and around my entire body was indescribable and unbearable to the point where I couldn’t stand and most certainly couldn’t walk. What on earth was happening to me??? The pain had been building up over a period of weeks, as was the difficulty I found walking. I really thought I had somehow seriously injured my feet and knew that this was the final straw. I dosed myself up on painkillers and hobbled to the studio, collapsing on arrival whilst explaining my injury and how I could no longer intern there. I packed up my London life once again to return home and found with complete bedrest the pain was completely gone within a week. There was absolutely nothing wrong with my feet, it was my body telling me it couldn’t take anymore, it wasn’t just the final straw for me, it was the final straw for my body and it told me this by not allowing me to walk. I had been masking pain for over a year, by taking on average twelve-fifteen painkillers in order to get me through each day until my GP explaining how dangerous this is so don’t do it fellow spoonies! (A spoon is anyone who suffers from a chronic illness, explained here). I now know that pain is a warning sign if you have ME, it is a dialogue between you and your body, listen to itThese are some of the wisest words I have ever heard when it comes to ME but hindsight is a wonderful word and will feature many times in the life of ME sufferers.

You are not going to believe what I am about to tell you but I’m going to tell you anyway. Just two weeks had gone by since I had left J.W. Anderson and moved my entire life back home to Staffordshire when I received a phone call from my friend (well another contact made through my mum and the golf club) she was Head of Marketing and Social Media at Religion Clothing and asking me to intern for them. I am crumbling whilst writing this… you probably know me well enough by now to know what I do when an opportunity of this sort arises. Do I say NO or do I say YES? Writing this blog has helped me piece my ever so complicated ME puzzle together into a journey I now understand and looking back, all I’m thinking is what the **** **** **** was I thinking?

I’m actually shaking my head to myself whilst writing this. You can read more about my experience interning at Religion Clothing here. Feeling very angry at myself right now!

I will try and keep this one short and sweet because I’m starting to sound  like a broken record! I am proud to say that I approached this internship differently to the last by negotiating my hours to ensure that I would ‘only’ be working 9am-6pm, I would have the weekends off and I would solely be working in the Head Office and not running around London. I even told them about my ME (big move here guys) so i wouldn’t have to do anything strenuous in the office. The first day could have been a sign for what was to come but for once I can happily say that it wasn’t (SMILEY FACE). As soon as I arrived at the office, I was asked to return to my new home in London to retrieve my laptop… for anyone else this wouldn’t have been a problem but for someone with mild-moderate ME the thought of walking another ten minutes was absolutely dire so I ran home in five, got straight into bed for another five, before hauling myself back to the office. There was no way I was going to cope if this was only the first day but by some sort of miracle, I actually lasted three months at this internship! This was a HUGE achievement for me, smirking, proud faces all around.

At Religion I worked in the sales showroom, learning how to sell the collection to buyers (including my personal favourite ASOS). There was just one other intern and two paid staff working in the showroom so there was much more opportunity to ‘prove myself’ compared to J.W. Anderson where I had fifteen other interns to compete with to ‘stand out’. I swiftly rose to the challenge, beginning by inputting orders into the system, moving on to observing how the collection is sold to the buyers, then to assisting the meetings and then onto actually taking the meetings myself, which I’m sure wasn’t part of the internship role! The opportunity to do so came about when my boss hired another intern who he met in a bar (not even joking) and then began dating her, whisking her away for lunches, which turned into afternoons and days off so I was left to take his meetings with the buyers! I used this opportunity to my full advantage and learnt more than I ever expected to but when the three month mark came by, I realised that I was actually doing his job, the job he was getting paid to do and I wasn’t. There comes a point whilst undertaking an internship when you realise there is nothing else you can learn from it and this is the point where you decide to move on. I am delighted to say that I left this internship by choice and not by the choice of my ME.

September 2013: Shortly after meeting super Sherron, she sent Storm Model Management my CV inquiring about internship opportunities for me, which I had no idea about until they emailed me asking me when I wanted to intern for them………… Can you imagine my face when I received this email. I actually thought it was a mistake because interning at Storm is HUGE. There was a year-long waiting list and a rota of two new interns each week, most who got on the list due to the ever so important term ‘contacts’, which is exactly how I got on the highly esteemed ‘list’. A year later and it was my time to shine. I was lucky enough for it to be during London Fashion Week, which for obvious reasons is the most exciting time to be at a modelling agency.



The day-to-day tasks in the Storm office (images above from Google) were as expected; updating the models’ portfolios; online and offline, as well as assisting with their polaroid shoots. It was fashion week though so I spent most of my time multi-tasking, eaves dropping on the conversations happening around the office for all the insider fashion week info! As London Fashion Week was coming to a close and it was time for the models to move on to Paris Fashion Week, the office was sent into a state of frenzy when Cara Delevingne lost her passport and missed her flight to Paris for the Louis Vuitton show! The entire office was in meltdown, everyone had to stop what they were doing and ring everyone Cara knew, this was a code red EMERGENCY. It turned out that she had left it at Adam Levines house, WHAAAAAAT?? Who knew they were even friends (or more) ??

Cara is a BIG DEAL at Storm, she is the money maker and probably the most coveted model in the world right now. Each day we received hundreds of deliveries of goods for Cara to endorse, so much so that the entire office was bursting with boxes for her and the interns had to make regular trips to her home to deliver her goodies!

There was one moment during that manic week, which really stood out as a moment of pure happiness. The Burberry show was being live streamed into the office, the entire Storm team crowded round, each one of us filled with the same excitement only fashion lovers can understand, whilst Storm models were front and centre, gliding down that oh-so-important runway. Burberry is the most important and established show at London Fashion Week so when Sarah Doukas and her brother Simon (partner of Storm) returned from the show to tell us every little detail and Simon went on to discuss with me one-on-one, Christopher Bailey’s (Chief Creative and Chief Executive Officer at Burberry) aesthetics for the season, I knew that is where I was meant to be, I had never felt more at home.

I am sad to say that the fun at Storm didn’t last long when once again I was struck down with a nasty bout of flu. Catching a virus or infection when you have ME is one of the worst things that could possibly happen to you as the effects can be extremely detrimental to your already severely impaired body. The last time I caught a virus was in July 2015  after I had been spending time with family members unaware that two of them had what healthy people would consider, “just a cold”. When I found out, I went into extreme panic mode as I knew how sick a virus could make me (if you have read my previous blog posts you will understand). I was horrified when the person with the cold actually had the audacity to say to me “just drink some carrot juice and you will be fine, that’s what I did”. I could not believe these words actually came out of their mouth. I was raging with anger but had no energy to explain to them how what they said couldn’t be further from the truth and they should never say that to someone with ME ever again. Two weeks later and where was I? In an ambulance, being rushed to hospital because my ME had become so severe I lost complete use of my arms and legs, partial temporary paralysis is what was happening to me.

Let’s rewind quickly – As you can imagine, after the virus hit me whilst I was at Storm, I didn’t last much longer. I ended up becoming a fly on the wall, unable to talk, think, move or make any sort of impression whatsoever. I doubt they would ever take me back or even remember who I was. This is the first dream ME took away from me and I was down to a level of functioning at just 50%.

There were brighter days ahead though so lets fast-forward a few months after Storm to December 2013:

HELLO AUSTRIA! As soon as the Christmas holidays arrived, I hopped on a plane to the winter wonderland ski resort, Bad Kleinkirchheim (BKK) to visit my ski-instructor boyfriend, who spent the Winter seasons abroad living out his ski-ing dream. During the four weeks that I spent there, I saw enormous improvements in my ME to the point where I was able to walk for miles from our tiny hamlet Rottenstein (see below) to the centre of BKK almost every day and feel good for it! I could even ski for a couple of hours each day without the same levels of cruel payback which I had experienced the year before whilst visiting him in Canada. I wonder why I made such a huge improvement at this point in time? Does anyone have any ideas?

image_1 image_2 As always, I decided to take advantage of this so I applied for the next round of internships as we were coming up to the London Collections: Men, also known as mens fashion week. I managed to secure an internship at the then up and coming urban label KTZ, which I was more than excited about after taking a few months break from interning. Typical ME though and I was struck down by another virus as the New Year was ringing in, leading me to white lie once again, telling KTZ I couldn’t make it back in time to work for the week before the show and I would only be able to attend show day (due to weather and flights etc blah blah), when I actually needed to go to bed for a week in order to make it through show day! I somehow managed to drag myself through show day, read more about it here by desperately counting down the minutes until I could crawl back home and collapse into bed. I even turned down an invite to the after-party, what on earth was my life coming to, turning down a fashion party?!?! This virus pushed me even further down the CFS Functional Ability Scale, just as I was about to embark on the adventure of a lifetime… an 8 month university exchange to the opposite side of the world, the wonderful land of OZ. Can you predict what happened next?

Thanks for reading my blog (WordPress seriously needs to get emojis so I can insert a huge smiley face here!) I know that this is a lengthy post, I’m trying to catch you up to the present day as fast as possible. By then the posts will be short and sweet I promise. I’ll be back with the next chapter as soon as soon as my body lets me!

How It Began… Part III

August 2012: There I was, feet firmly placed on the ground, anxiously glancing from one side to the other… which road should I dare to choose at this unpredictable crossroad that lies ahead? A crystal ball would have shown me the consequences of this dire dilemma I had come to face, if only they existed; if only seems to be a phrase I often use when it comes to ME. I thought I knew what I was doing, I thought I was making the right decision. Some say it is the worst decision I ever made, the consequences are worse than you would want to imagine. Others say I lived the dream… until now that is. Those are the ones who believe the consequences are worth it. I ask myself, what does it really matter what others think when I am the one who has to live with the consequences of my decision every single day and potentially for the rest of my life? The frightful consequences are a constant reminder of the crossroads I once faced and how different my life could be if I had taken one step in the opposite direction.

How It Began… Part I and How It Began… Part II will lead you up to this moment in time.

September 2012: Less than one week after my ME diagnosis by Professor Powell, I began the gruelling, treacherous journey (you think I’m about to climb Mount Everest or something of a similar difficulty don’t you) leaving my tiny countryside hamlet, Whiston in Staffordshire to venture into the unknown… the big bad Kent. I’d never been to the South East before, no further than London anyway, unless we passed through Dover/Folkestone on our way to Calais to our beloved holiday destinations on the other side of the Channel. If you’re from the Midlands or from the North as people down South say we are… BTW we are not from the North! We are from the Midlands! When you think of Kent, you picture an abundance of vineyards, sun-filled seaside holidays and refined country estates (expectations definitely too high). The Medway towns, where my university campus was based couldn’t be further from what I imagined. OH DEAR! what had I got myself into?! Don’t ever go to the Medway towns, you will regret it. (Feel like people will think I’m a snob if I explain why so not going to explain why I’ll leave well alone there). There were a few perks of the town though, it wasn’t allllll bad. The Dickensian Christmas Festival was nothing like I’d seen before, this overwhelmingly extravagant Victorian style parade shut down the town, literally. The people there seriously loved/worshipped Dickens, he was born there after all. Upon the big move to Uni, I must have had great expectations to live life-like Charles Dickens did. I definitely need help – expectations of life continue to become far too unrealistic to handle.

Dickensian Christmas Festival

Dickensian Christmas Festival

Upon arriving in my new town and my new home, I was faced with my first ME obstacle. ME Specialist Powell had advised me to “avoid climbing stairs” as they had recently started to worsen my symptoms. Four flights of stairs to the top floor, aka my new home and no lift in sight, uh-oh… thank the lord for wonder women aka my mother who unpacked the car and all my worldly goods with a workout she could be proud of. I guess I didn’t have a choice but to ignore those wise words of Powells… not like I would have listened to him anyway! I was on a path to live an ME life MY way, actually it was more like I was on a path to live a life without ME.

When the immunologist, Powell diagnosed me with ME, I made the decision to ignore his words, ”don’t go to university or you will get severely sick” and soldier on, not letting ME affect my life like he said it would. I thought I had a choice in the matter and I could control IT, I later discovered that IT controls me. ME takes over like a parasite, sucking the life out of its host, slowly but surely, ensuring it’s causing pain, suffering & cognitive malfunction along the way until the host merely resembles a poor relation of the creature it once was. Later on in my story, you will see the results of how ME has manipulated my existence. It isn’t entirely bad though, countless positive experiences have happened a long the way!

I was due to begin the coveted Fashion Design course at University for the Creative Arts, also known as UCA. I have absolutely no idea how I was accepted onto this course, it must have been a miracle. Why was it a miracle??? During my interview, the interviewer (Fashion Design Course Leader) merely glanced over my portfolio and howled, “This is not fashion!!! What are you doing here? Why did you even apply for this course?!!! That’s enough… I don’t need to see any more (checks buzzing phone with urgency) Do you have any questions for me?” Err no… and I ran for it. Well, I calmly strolled out of the interview room in a nonchalant manner then when I was out of sight of crazed interviewer, I legged it with tears rolling down my face as far away from UCA as possible with plans never to return. I had spent almost a year preparing for this highly anticipated interview during my Foundation Degree in Art & Design, an interview which lasted a total of two minutes after a nine-hour journey disaster of a journey to get there. This was the art school where Tracy Emin shined, Karen Millen and Zandra Rhodes’ designs were born. What the hell was I thinking when I applied here. This is why I assumed a mistake had been made when UCAS notified me of my offer. I later learned that interviewers at art schools are known to ‘rip prospective students apart’ in order to test their resilience. The words “You won’t make it in the fashion industry if you can’t handle high levels of criticism” were later regularly drilled into my head by the fashion tutors.

Despite being accepted onto a Fashion Design course, I have never wanted to be a fashion designer. I quite simply suck at it and I don’t believe it’s something you can be taught, you are either born with it or you are not, and I am most definitely not. I only applied for that course because I knew that being close enough to London gave me the chance to make the contacts I knew I needed to, in order to ‘make it’. Another bizarre twist of fate happened when within minutes of meeting my new flat mate Rachael and learning about her course Fashion Promotion, I knew it was course meant for me. Fashion Promotion is about styling and photography, fashion film, fashion forecasting, visual merchandising (VM), fashion writing, public relations and marketing, social media, event management and creative direction. I was already working at Topshop, excelling at styling and VM so after another round of interviews and new portfolio submissions, I was accepted onto my new course! Lots of YAYS! followed this thrilling news.

During my first year of university, I managed to keep my mild ME symptoms (exhaustion after mild exertion, virus upon virus and flu-like symptoms) under control by solely focusing on university work. I was there to acquire the skills I needed to break into the fashion industry. I wasn’t there to make friends; I didn’t have enough energy to keep up with the ones I already had and I definitely wasn’t there to party. I’d been doing that since I was fifteen, and five years on, the Medway clubs were the last place I wanted to be. Even if I wanted to carry on with wild nights out, I was no longer able to. I tried it once during freshers week; I lasted two hours before severe exhaustion kicked in and my intolerance to alcohol became more apparent than ever before. Another night out a few months later at KOKO in Camden Town saw me falling asleep in the smoking area before realising I had to leave if I wanted relief from the unbearable exhaustion. After leaving early, I unfortunately saw texts from a ‘friend’ to the kind friend who had left the club with me saying, “Emma is such a wimp, she needs to man up. Come back to the club if you can.” This was the same so-called friend who had been saying to me all night, “don’t leave, just sit down for five minutes and then you won’t be tired anymore.” That is not how ME works. This was the first time I experienced how hurtful it is to encounter the wrath of those who are so ignorant when it comes to ME.


That’s me on the left and Chloe on the right, attempting to beat ME and last through the night!

My limited capabilities for a social life charged my dedication to work even more and my time at university became a rollercoaster of work versus rest and sleep. My career was my number one. I was the ‘geek’ of the course, fashion was my speciality and this is where I thrived. Ironically I had won the award ‘most likely to drop out of university’ at our 6th Form Leavers Ball. That was probably due to my track record of skipping weeks of school at a time (academia wasn’t for me) but at university when at the end of the year, the course leader arranged us in order of attendance, I was front and centre, 99% attendance, star pupil and very annoying to the rest of the class.

Attending a creative university was nothing like attending your usual British universities. This was different, it was fashion and ‘mean girls’ was real life. I didn’t know bullying existed in adulthood until I unfortunately became the target on three separate occasions, in three separate terms with three different bullies.

Bully: It’s not fair, you haven’t been at university for two months (due to ill-health) and you got an A and I’ve been here every day and I’ve got a B. This is so typical. The tutors always give you As.

Me: (hear whispering and my name being mentioned) What are you guys talking about? Bully: What grade did you get Emma? Me: An A. Bully: I’m happy for you that you got an A but you don’t deserve it. I can’t believe they gave you an A. Me: Why, what grade did you get? Bully: I got an A too, it’s just unfair that you got one.

Bully: Staffordshire! Staffordshire! (throws ball of paper at my head) Are you coming out tonight? Me: No, it’s not really my scene going out in the Medway towns. Bully: Maybe that’s because of the people you choose to hang out with or maybe it’s a reflection of your personality… Me: or maybe you’re just a bitch. Bully: OOOOOO no you didn’t! Your’e gonna wish you didn’t say that. (sidekick stands up swearing at me) Let’s take it outside. Now! Come on, get up! Me: I’m not going to fight you. Bully: (still trying to fight me, beginning to realise HE is making an embarrassment of HIMSELF). We could have been friends you know so you better watch out because I’m going to make your life a living hell from now on (later found out HE and HIS posse beat up their flat mate and she dropped out of uni after they threatened to do it again if she told anyone). Yes that was a guy who tried to fight me!

How could these people be so horrible to me? What had I ever done to them? I quickly learned that everyone was in it for themselves. Jealousy and competition fuelled the burning fires and developing a thick skin was the only way to survive the brutal environment I found myself in. “Ignore the bullies, they will not succeed. You will see them struggle and fail. I doubt they will even make it through to the next year. Stick with the group you have. You and a handful of others are the only ones who will make it, you will see.” These unexpected words from the most agreeable, calm and peaceful tutor ensured that I stuck to the few friends I had like glue.

Brain Fog has now set in and it could be days or weeks before I am able to write again so I’m going to finish this post with a hint to the next. There was one more piece of the puzzle left for me to conquer and it proved to be my downfall with ME. Let the battle of the internships begin

Brain Fog is a common symptom of ME and is described by Dr Sarah Myhill as, ‘What allows the brain to work quickly and efficiently is its energy supply. If this is impaired in any way, then the brain will go slow.’ 

What she means by brain fog:

  • Poor short-term memory
  • Difficulty learning new things
  • Poor mental stamina and concentration – there may be difficulty reading a book or following a film story or following a line of argument
  • Difficulty finding the right word
  • Thinking one word, but saying another

You can read more about it here

I hope it doesn’t last too long and I can share the next part of my journey with you soon!

How It Began… Part II

Not every case of ME begins in the same way… I know of others who have woken up one day and out of the blue, are unable to move their bodies, becoming bed bound for days, weeks, months or years and in the worst cases, for life. I realise that this sounds extreme but unfortunately it’s the truth and that’s sadly what so very few people understand, how severe ME can really be. With no gradual symptoms, which I now know are a warning sign, these ME sufferers seem to be the unluckiest ones. I hope more than anything that after reading my last post How It Began… Part I you will now recognise some of the signs and symptoms of ME as it begins to make itself apparent in someones life. I desperately wish that someone close to me had known about ME at the time I began to get sick so I could perhaps have been diagnosed sooner. The faster the diagnosis, the higher the chance of recovery and now I fear that it is too late for me.

August 2012: You are probably wondering how my diagnosis occurred after the constant set backs from NHS healthcare professionals telling me ‘there was nothing wrong with me’.  Our determination to find an explanation to my spiralling symptoms led us to changing GPs on numerous occasions until someone finally gave us an answer that justified our queries. I would like to say it was the answer we were looking for but I guess any diagnosis isn’t one you were searching for. My latest GP suggested that I may have ‘ME’ (Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome ‘CFS’), which I nor my parents had ever heard of. She referred me to an ME specialist; a recognised immunologist (that’s someone who studies the immune system). Google became my friend, for the new terms I was faced with along the way.

I can’t remember much about that day but it is that day and that day only that haunts my life since I started “living” with ME. It was the turning point and whether I chose the wrong turn, ending with the dead-end I find myself in now; I am continuously debating. That day was a bit of a blur to say the least; less cloudy day, more hurricane storming through my existence sort of day. I successfully blocked it out for the first two years since the appointment, as it is only in the last year I have finally acknowledged what he said to me. ‘I am 100% sure you have ME. You are a classic case. You should not go to university. You will become extremely sick, much more ill than you are already.’ It took him 30 seconds, that was it, 30 seconds to diagnose me with this nightmare, known as ME.

I was done before he had barely even started. That was it for me. I didn’t hear anything else he had to say. I didn’t want to. How could this man, who didn’t know anything about me tell me what to do? Who the hell did he think he was, telling me not to go to university? I wasn’t going to throw my life away just because HE said so. I instantaneously detested him and everything he stood for, wow I was really going in on this guy! (In my head of course. His outlandish comments were met with cute smiles and grateful gestures in real life). Anyway I’d never heard of ME so how serious could it really be? Surely if it was that serious, a doctor would have picked up on it sooner? It is only now, 3 years later that I have had the wretched experience of knowing the answer to that question.

On a more positive note and we certainly need one… arrives my fashion story… my personal cinderella experience. Day-dreaming of fashion was something that has occupied my time since the early age of 11 when I would frequently scroll through catalogue after catalogue, dreaming of having some sort of tangible association to the shiny girls, in the shiny clothes, in those magical shiny pages. I guess I have my dad to thank for my dream, as he was the one who provided me with a vast array of catalogues (NEXT (oh dear) and Littlewoods (seriously OH DEAR) but the French charm of La Redoute was always my firm favourite. The only colours entering my wardrobe at the time were a strict palette of baby pink, lilac and sky blue, no other colour was deemed acceptable, apart from a knitted cream poncho I shamelessly wore EVERYWHERE, there was no stopping me. It wasn’t long after when I began to realise what I was going to do with my life. If there was one thing that I was put on the planet to do, it was to make my way into the fashion industry. At the age of 13, subscriptions to Vogue, Elle, Grazia and Look Magazine were my only form of access (before the internet and all, am I really that old?!). Almost 10 years later and the Vogue subscription is still going strong. Fashion wasn’t a hobby for me, it was a subject, something to study, learn and absorb. It was something to be good at and I wanted to be the best (Type A Personality here you go again). At 14 I would go through an entire issue of Vogue and name every single model in every single ad campaign, editorial and advertorial; the modelling world was the first sector I wanted to try out and 7 years later I got my chance when I scored an internship working for my idol, Sarah Doukas, founder of Storm Model Management, also known as the women who discovered Kate Moss (my other idol) at JFK airport in 1988. Here are a selection of my favourite Kate Moss for British Vogue covers, ranging from her latest, December 2014 to her first, March 1993. (images from

Throughout Year 11 and 6th Form I attempted to worm my way out of school as often as I could during a specific four weeks, twice a year, ever year. Why? Fashion month. Day by day I blasted my face with a hair dryer (little tip there) and claimed I was ‘ill‘ until my mother left for work, which was when the fun really began. I lived my fashion life in secret, watching live streams of the fashion shows from New York, London, Milan and last but by no means least, Paris!!!.

When Christophe Decarnin opened Paris Fashion Week with this collection for Balmain, my adrenaline levels flourished. This show, is the one I will always remember, the standout moment when I became set on making my dreams into a reality.

Back then, very few shows were live streamed so my life revolved around the little access I had to these spectacles and the mystical realm I was consumed by. I never told anyone my little secret, I feared no one would understand as I had never met anyone with a love for fashion as deep as my own. Oh how it bothered me when others claimed, ‘I LOVEEEE fashion too’, when what they really meant is ‘they like clothes’ or more often ‘they like shopping’!!!! As you can see, fashion came first in my world, it always had and it always would, nothing would ever compare and to this day nothing has so when this so-called ‘doctor’ (I tried to convince myself that he wasn’t really a doctor and he was a member of a crazed cult uttering nonsense) told me to not go to university, he shattered my one and only dream. The path I had chosen to follow for my entire teenage life had led to this moment and the Fashion Promotion degree I was about to embark on (exactly one week after my diagnosis), I firmly believed was my only way in, or so it seemed. Which path would you have chosen? Would you have listened or would you have followed your dreams?


What began as a casual evening out at the American themed, taxidermy filmed Shady Pines Saloon bar led to a rather astonishing discovery my friends have kept hidden under their belt for quite some time now…

I bring you (well, they bring you)… TZUKURI

The world’s first pair of sunglasses that you can purchase with a promise that you will never lose them – ever. You may wonder how this works? Well Tzukuri have that all figured out.

Each pair of sunglasses is embedded with a custom designed beacon which is connected to an iPhone app. If you leave your techno sunglasses behind, your iPhone will simply alert you as well as letting you track where they are on a map.


The designs were created by 3D analysing thousands of faces in order to develop a fit which fits with a broader range of facial structures.


The result is six pairs of glasses in three different sizes, specially refined to bring out the best in every face. All this technology might sound a bit much right? You might think that the design aesthetic might be comprised for the technological advances but I assure you that these designs are some of the most wearable yet modern designs around. Did I mention that they are also hand crafted in Japan?


Time magazine online has already featured Tzukuri, which is a sign to quit the worrying about whether investing on an expensive pair of sunglasses is worth it or not because you ‘always lose them’; now there is no need to worry about them going missing and therefore, no excuse to not invest.

Tzukuri sunglasses will be available to order later this year (I’ll keep you informed) but for now check out their website for more info:  Tzukuri Website  and like the Tzukuri Facebook Page to keep updated with the latest Tzukuri news.