How It Began… Part I

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 (sorry mum and dad) whilst holidaying in Mallorca with my dear/wild friend Katie.

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 (sorry guys) 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’ were the words that continued 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?

16 Comments

  1. Bec September 19, 2015 / 2:13 pm

    I loved reading your story. I identified with some of it, as I also got CFS/me aged 16, however I grew up in a strict religious family, who were also quite poor, so I didn’t have quite the social life you had at 16 ie going out a lot with friends (my friends had to be from the same religion) and holidaying overseas etc. So, in a way, that was good, physically, as I basically stayed in bed for 6 months when I got glandular fever (precursor to CFS). Basically I never recovered.

    I identified with being incredibly healthy and fit Pre-CFS. (Never got a cold). The difference between me pre and post CFS was staggering. It’s liKe keep I got a different body overnight.

    I too was in denial about having it (well it took a long time to Even get diagnosed). But I’m now 39, and only REALLY accepted that I had it, a few years ago. You sound lucky that it seems you’ve kept a lot of your old friends from high school. Unfortunately, my friends basically abandoned me after 6 months, when they realised u could no longer do the same things with them anymore.

    Having a support group is VERY important, to maintain your sanity. Luckily, my mum also had/has CFS/ME, so she’s always had my back and understood what it’s like. As I’ve gotten older, I’ve stopped trying to ‘explain/excuse’ myself/my behaviour, due to the limitations from the illness. If people don’t get it, that’s their fault, not mine. YOU know what it’s like, and that’s the most important thing.

    Just wanted to say thanks for sharing your story. It seems you’re really bad atm unfortunately. Keep listening to your body, and don’t push it, when it’s screaming at you to stop, is the best advice I can give. (And what I have to keep advising myself all the time!).

    • Emma Franklin October 1, 2015 / 2:25 pm

      Hi Bec, thank you for your comment. It is very interesting to hear how the same illness can have evolve so differently depending on a persons background/lifestyle.

      I have met many people who have developed CFS from glandular fever, it seems to be one of the most common ways of developing it? I think most people get hit with their trigger virus & become severe very fast but for me my CFS became severe over a number of years which is quite unusual. This is probably why it has taken me so many years to come to terms with how ill i am because it has been such a slow process.

      I am so sorry to hear that you lost many friends from this illness, I know that is common for many people. Unfortunately I’ve been house bound/bed bound for the last year so I haven’t seen friends or family for a long time but I feel very lucky that I still have many supportive people despite not being able to see them. I think meeting people online, especially those with the same condition can really help people to feel less isolated and alone. Like you said, you are also very lucky to have your mum! If she also has CFS then I’m sure she understands more than anyway else ever could about what your’e going through.

      If you ever need an online friend, I’m here!

      Take Care, Emma

  2. Xunae August 15, 2015 / 3:41 pm

    Thank you for stopping by my blog! It sounds like ME and Fibromyalgia are sister syndromes. In America Chronic Fatigue Syndrome is diagnosed as sort of a “lessor” version of Fibro, but they share a lot of the same symptoms and issues. Fibro cannot be cured or recovered from, only managed. Is there a chance for recovery from ME?
    Anyway, just wanted to say thank you for swinging by my blog and let you know I’ve read a couple of yours (naked saunas? eeek!). Take care! ~ Xun

    • Emma Franklin August 16, 2015 / 9:17 am

      Hi Xun, I think in the UK is it seen as the opposite. E.g. I have very severe ME, I can’t walk, talk, watch tv, or eat and I’m completely bed bound and have been housebound for the past year whereas my auntie has Fibro and she also can’t work but she can walk, talk, prepare food and bathe herself and she can see friends and family. I don’t think that one chronic illness is worse than another because everyone experiences them differently. I was diagnosed with Fibro recently so now I have both illnesses!

  3. Emma Franklin July 10, 2015 / 9:54 pm

    It sounds like you have a strategy that is working for you which is great 🙂 I allow myself one green tea a day and have no other caffeine but I really want to be able to live a sugar free life, I’m seriously addicted though and don’t know how to stop! I hope that one day you will be able to increase your activity beyond two hours without worsening your symptoms, oh how the smallest things in life can make such a positive difference when you live life with ME 🙂

  4. Emma Franklin July 10, 2015 / 6:48 pm

    I’ve never heard of anyone else who developed ME from swine flu before although I’m sure there are many others. Did you get it during the 2009 pandemic as well? Well done for building up to that 🙂 is that 2hrs at once or spread out over the day?

    • anjicat July 10, 2015 / 7:26 pm

      Yep, worst two weeks of my life. Then 3 months off work with Post Viral Fatigue Syndrome, part time from the September till the December while I continued to ‘build my self up’ but in actuality I was running my self into the ground. Crunch time came in May 2010 when I nearly collapsed at work after taking one flight of stairs. My doctor signed me of work and I pretty much spent the next three months in bed.

      Started off slowly, just making sure I got up on my feet 4 times during the day and pottering about, but timing how long I could manage. Once I had a couple of weeks recorded I worked out the average then made that plus an extra minute my target for the next fortnight, slow and steady and trial and error to find the things that put a dent in the plan (like the cold that my SO brought home from work, that he had for four days and I had for five weeks) but now I can do my 2 hours in one go if I need to, more with strategic abuse of caffeine and sugar though I liken that to spending on a credit card, it must be repaid WITH INTEREST

      • Emma Franklin July 10, 2015 / 7:59 pm

        That sounds exactly like me, I left university after my 2nd year to take a year out to ‘get better’ but I was still making myself worse. I didn’t realise how little it took to get worse and how much it took to get better. It’s awful how long the viruses/infections last isn’t it! I saw some family at the weekend who had a cold so I was extremely wary and they just said to me ‘your ill anyway so what does it matter if you get a cold as well’ and they said ‘drink some carrot juice and you’ll be fine’ it made me so angry how little they understood how seriously ill a ‘cold’ can make us. I suspect I have it now, I’ve had to cancel all my plans for the week and may have to cancel my holiday in two weeks time unfortunately. How come you have caffeine and sugar then if it makes you feel worse when the hit of energy runs out? Has it taken you 5 years then to build up to the amount of activity you can do now?

    • Emma Franklin July 6, 2015 / 5:52 pm

      I think you probably do know the answer Alicia… I will be writing what happened next very soon hopefully

  5. Julie July 6, 2015 / 3:09 pm

    What a determination to keep going Emma! That strength of character will stand you in good stead as find your way through your journey with ME. Wishing you hope and healing on this next stage of your “voyage”

    • Emma Franklin July 6, 2015 / 5:50 pm

      I should try and harness that determination and use it to get better but it seems to be making me working against me because I’m still constantly trying to battle with the illness and trying to do things, when I know I shouldn’t be!

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