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…
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.
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.
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…
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, Goop.com, 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.
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.
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?
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.
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”.
SHE CALLED MEEEEE LAZY?!?!?
ME – LAZY?
WAS SHE EFFING SERIOUS?
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?
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.