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!