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.

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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 http://drmyhill.co.uk/wiki/Brain_fog

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 vogue.co.uk)

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?

J.W. Anderson here we go again!

      So now I have finished my first year of university and I have the entire Summer ahead of me so what better to do than gain some more experience, working for free, YAAAAY. I already can’t wait for interning to be over so I can be in a paid job. Only two more years of uni to go and fingers crossed it will happen!
      I’m back interning at J.W. Anderson and this time we are working on the womenswear Resort 2014 collection and the menswear Spring/Summer 2014 collection. In the six months since I last interned here, they have moved to a much bigger studio and the staff have tripled in size. I thought this meant they were doing a little better and would be relying on interns less but this was not the case. As the company had grew, the demands became even higher than before and interning was even crazier than the last time.
      This week has been as I expected, long crazy hours running from factory to factory. Some people think I’m insane for working the hours we do but it is worth it when you get to see the collection go down the runway, taking the fashion world by storm. Some of the highlights of my first week have included going to Selfridges Head Office to deliver garments for a photo shoot which was exciting seeing behind the scenes of Selfridges and observing how it is run. Other bonuses include working in the studio next to the band, The Horrors and eating lunch with them on the studio roof tops but the best part of my week is continually seeing fashion designer, Simone Rocha around the studios !
      My favourite part was seeing the finalised Resort 2014 and getting to watch Jonathan and his stylist Benjamin Bruno do the fittings on German model Josephine Van Delden, which is where the collection really came to life. Johnathon is obbsessed with Japanese minimalism, using its wrapping and folding techniques. Jonathan continues to push boundaries but still makes the clothes relatable and wearable, which is where he finds his success.