What was your ME trigger?

Post by Emma Franklin a.k.a @myblondevoyage:

The specific cause of Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis is currently unknown. Despite this, there are numerous triggers and variable factors that are known to often play a part in the development of this chronic illness. One of the most common triggers is a viral infection. You can read more about how viruses can trigger ME in a post that was previously written by Bill (the founder of this website) here.

I believe that a viral infection was the trigger for me to develop ME although I suspect I would have developed it anyway at some point down the line. Here is an edited extract from my personal blog, about the beginning and possible causes that went on to my development of ME…

Type A Personality: ‘A temperament characterised by excessive ambition, aggressioncompetitivenessdrive, impatience, need for control, focus on quantity over quality and unrealistic sense of urgency.’ Oh boy was that me. Type A Personality DEFINED who i was. Bearing that in mind…

June 2009: A typical 16-year-old schoolgirl… fearful GCSEs looming ahead, influential friends and teenage boys causing havoc consumed my what seemed so important life when I was struck down with the dreaded swine flu. Remember that? When the government claimed we would all contract this deadly virus and a mass pandemic would take over the country, killing us all! Not true. Never happened. Never was going to happen. I’d never had the flu before so feeling this ill was a first, I had been an extremely healthy child and proud of it! Unfortunately i fell ill during my GCSEs and was unable to revise for weeks beforehand due to being completely immobile and bed bound. I recovered though, perfectly fine, at least I thought I had. Within a month, sadly my nana passed away and I had experienced a severe and traumatic leg injury whilst attempted to steal (borrow) a jet ski whilst holidaying in Mallorca with one of my dearest yet wildest friends.

September 2009: The dreaded lurgy began to creep up on me slowly yet surely as I continued into 6th form and completed two of the hardest years of my life (at the time I thought A Levels were going to be the most difficult task I would EVER face, if only I knew what was to lie ahead). As I gradually caught virus after virus and infection after infection, another bout of flu took hold of me during my AS Levels, what were the chances?! Three weeks off 6th form, housebound and bed bound. I had been partying non stop over Christmas so maybe that was it? My parents assumed I was ‘overdoing it’ and would get ‘really sick’ if I didn’t slow down. I just assumed my parents were being typical nagging parents (apologies) just like everyone elses. Why would I get sick? All my friends were fine. Oh how naive I was…. Another loss of a beloved grandparent and a ski accident followed a month later, leaving me delirious and disabled for three days in an Austrian hospital with severe concussion. I recovered as I always did and carried on the school year, celebrating the end of exams with trips to Mallorca, Corfu and Kos as well as an annual weekend at V Festival. Numerous trips to London left me bed bound in each and every hotel, I seemed to pick up literally EVERY virus/infection that was going. I was pushing my body into over drive and making myself more and more sick with everything I did, if only I had known it.

September 2010: During my second year of 6th form, a back injury I sustained in Year 8, seemed to instantaneously and drastically spiral out of control until I could no longer walk or stand during my Theatre Studies A2 Level. The pain was unbearable, how had this come on all of a sudden? Why me? Why now? These were the questions I continued to ask myself over the years. I should mention that during my GSCEs, AS Levels and A2 Levels I needed sick notes from doctors for the exam boards to explain why I couldn’t revise and why I was unable to move for the latter (movement is a huge part of the marks in Theatre Studies). We didn’t really think anything of it, I believed I was just unlucky. That summer, a virus once again left me house bound, my mum ordered me to stay in the house but a quick sneaking out and a car crash left me with whiplash and bruising throughout my body (you are probably now beginning to see the tell-tale signs of how this disease can develop). On a positive note, school was out forever!!! This was the happiest moment of my entire existence to date and I celebrated appropriately with two months in Mallorca, partying non stop. Oh those were the days…

September 2011: Fast forward to college = the best year I’ve ever had. Going from a strict grammar school to studying an Art and Design Foundation Degree was comparable to moving from a convent to 1970s San Fransisco (a lot of hippies, a lot of radicals and a lot of illegal substances, everything we did was considered ‘art’). We went out most nights of the week, often with our tutors and at weekends exploring cities all over the country to find our favourite and usually the grimiest clubs. We took inspiration from our tutors attitude to attendance and came and went as we pleased. Oh how I was reeling in the freedom of college, let’s just say a private grammar school didn’t work out well for me, I think a rebellious attitude to authority is the most pleasant way to describe my time at that school, which landed me in plenty more trouble than my parents could handle. As the weeks went by, it seemed like I was spending more and more time at the doctors; after numerous nights out, I was there, once again, at the GP, unable to talk due to the agony and shooting pains pulsating through my throat and unable to breath due to the constant chest congestion. Each and every time the doctors told me ‘I had another virus’ or ‘I had another infection’. How many viruses could one person get? Seriously guys, enough was enough! I look back now and know that my frequent naps on the table tops at college weren’t the effects of the late nights, it was something much deeper and much darker. Only time could tell what was to come and it wasn’t until I fainted for the first time at a family party that Christmas after working three jobs simultaneously over the break that others started to suspect something was seriously wrong with me. Even when I overheard my tutor asking my mum if she was proud that I got into University for the Creative Arts and her response was, “Yes, it is amazing. I hope we get her health sorted out first though”. I thought she ought to be in a loony bin, ‘she must have been delusional for thinking there was something wrong with me’ are the words that continue to run through my head.

Throughout college, trips to Berlin, Amsterdam, Dublin and Mallorca kept me occupied and distracted me from what was really happening. I stormed through the Summer at a hundred miles an hour, making the most of it before the real hard work at university began. Global Gathering, V Festival, Paris, Mallorca and Cyprus were some of the highlights and somehow between my travels, I had found time to complete a 10K run. Post 10K, I still began each day with 10K so why when we climbed Snowdon that same summer was I struggling more than my friend who literally NEVER exercised. Life was so unfair. Things were worsening at an ever-increasing rate. My body shut down when we reached the summit and I slept for over an hour whilst everyone else saluted to our victory. Not long after my confusing climb of Snowdon, I was on my way to Paris when a quick stop at my future university left me unable to eat, talk or stand and overnight I developed a serous case of mumps, lasting for almost a month. I had given up but for my mum… that was it, the last straw! We returned home and my parents demanded for the GP to find out what was wrong with me.

Every single test came back NEGATIVE?! Referrals to haematologists and other specialists showed that there was clinically ‘nothing wrong with me’. I had resorted to sleeping in the stock room at work and taking naps in the toilet as often as I could get away with. I was barely able to stand at the fitting room and manning the till was so overwhelming, my brain just wouldn’t work. See you later Topshop. I quit. There the doctors were, telling me repeatedly that there was nothing wrong with me, how was this possible? I must have been going crazy, did that mean my parents were going crazy too?

I think it’s pretty interesting to discover how other people developed ME so leave a comment below about your ME trigger!

3 Comments

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  1. A very interesting read Emma. Thanks for your openness, I’m sure many here will recognise many similarities.
    I look forward to reading more from you soon.

    Ian

    1. Thanks Ian!

      It’s taken me many years but finally ready to be honest with myself and others about being ill. Some people develop ME very suddenly but for others it happens gradually so I’m sure those who were gradual will identify with this. Will share about my diagnosis in my next post!

      Emma

      1. I can appreciate that Emma.
        It’s hard to tell yourself “NO”

        Awaiting your next post already.

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