“Winning at Life!”

I was always the work hard / play hard type. At work, I excelled in everything I did, always striving for and often reaching “perfection”. But it was never good enough in my own eyes and I would work harder to “prove myself” – working long hours, weekends and wearing it like a badge of honour. Working in the fast paced chilled food industry, this behaviour was revered and rewarded and so I continued.

By 2012, from the outside, I appeared to have a thriving and enviable life. I was excelling in my career and had risen to be one of the most respected Commercial Managers within the company. 12 years into my career and I was flying high, getting multimillion-pound deals, and doing it really well. I was “buzzing” on the outside.

I had a brand new shiny big house (with a big shiny mortgage to boot) and the pressure to keep earning my big salary was strong. So, I worked harder and longer hours, to “prove my worth” (ironically when I look back some of the other managers were watching sport on their laptops all day – I had nothing to prove!) and also to pay for an expensive lifestyle that I created. With the shiny big house came a self-imposed pressure to entertain friends and family and be the perfect hostess.

I was pushing my body to the limits as well – in the gym 5 times a week – as I slimmed down to fit into my “Dream” wedding dress. I found the adrenaline rush of exercise helped me block out all the stuff that filled my head from my long working days. It also helped me burn off the booze and food I was using to help manage my emotions and overwhelm.

Me at the peak, leading up to burn out. Putting on a brave face and “living my best life”

I honestly felt I was ticking all the boxes of “winning at life” and thought it was completely normal to be busy every night of the week with work, socialising, exercising. Downtime just wasn’t a thing I needed. It was for other people, not for me. I started getting excruciating “ice pick” headaches, but I just took pain killers and carried on, taking my laptop to bed because I truly believed they couldn’t cope without me!

Its just a cold!”

January 2012, I got a head cold. It was bad; I had to stop and cancel plans that weekend. Thank goodness it was the weekend though, it meant I didn’t have to “let work down”. Miraculously it cleared in 2 days, so at 5am on the Monday morning I started my 3 hour commute to a senior management meeting 200 miles away.

I can’t recall any of the next week… I think I got through on the adrenaline that had served me so well up to this point. I was most definitely on auto pilot (but then most of my life was on auto pilot back then). The following Saturday I woke up and literally could not get up. I physically couldn’t lift my limbs. The only thing I can liken it to was flu (x 1000). I had to crawl to the loo. The act of getting to the loo and getting back into bed meant I had to go back to sleep for an hour to recover from the “exertion” (the bathroom was en-suite, no stairs, no nothing – what the hell was going on?!)

My body had finally won the battle (but not the war!) to make me listen. I finally stopped (because I didn’t have a choice!) and I didn’t “push through” on Monday morning. I couldn’t, my body, that had been screaming at me in the form of ice pick headaches, had finally taken control of this crisis… and floored me.

For the next couple of weeks, I was bed bound. The symptoms, as I remember them now were:

  • Fatigue that left me bed bound
  • Pain all over my body and particularly in my legs (felt like ants crawling in my calves) 
  • Feeling wired all over (fight or flight feeling) 
  • Head so foggy that I couldn’t think straight. Such a thick, horrid feeling 
  • Tinnitus and ringing in my ears
  • Really bad sore throat (I suffered with tonsillitis throughout university and this was worse)
  • Sensitivity to light and sound (couldn’t watch tv, had to have the curtains shut) 
  • Sensitivity to touch (the lightest touch made me scream with pain)

Basically, it was like the worst flu I had ever had but a whole lot worse!

Conflicting medical advice 

Over the course of the next two to three weeks, I saw a few different GPs and received different advice from all of them – one told me to rest (good advice, which I half listened to) and one (who frankly treated me like I was just trying to get a sick note – me? The girl who couldn’t wait to get back to work?!) told me to push myself and go to the gym because I was going to stay tired until I did something physical – obviously this is the advice I lapped up as I was desperate to get back in the gym (this was bad advice). Of course, I went to the gym and it floored me – back to bed I went!!

Eventually I just about recovered enough to return to work – but boy, did I struggle! I didn’t feel on top of my game at all. I would just about make it through the day but then I would get home and collapse into a heap. Every now and then I would not be able to get out of bed at the weekend. I was finding myself resting all the time when I wasn’t at work, just to give me enough energy to get through the days/ weeks. This no longer felt like winning at life.

So, I soldiered on when I got back but I kept being floored by the fatigue. It sounds melodramatic but I honestly thought I was dying. It was not normal at 34 to be feeling like this. 

A few months later one of the multiple GPs I saw said they thought I had “post vital fatigue” and told me I needed to learn to “compartmentalise it”… What the?! How the hell do you compartmentalise a complete and utter all consuming fatigue and pain?! Clearly this woman had never experienced what I was going through. I got in the car and I cried and cried. Why was no one taking this seriously?!

“Rest and put on a brave face

Remember that stressful job I was doing? Yep, it was still stressful… My boss was understanding and allowed me to work from home most of that summer. I was doing the bare minimum and when I had a customer meeting – I painted on my thick makeup, travelled to London with headphones in (to drown out the noise sensitivity) and lay down in the back of a taxi to and from the meeting. I got through every meeting without anyone noticing I was ill (even though inside I felt awful and had to concentrate a hundred times more than I had ever had to before) but then I was back in bed for a day or two. All this time my body felt like it would break at any time, with that fight or flight feeling continuing along with other symptoms on and off. 

A summer at home helped a bit, enough to get me back into a routine from the Autumn. That routine was to sleep all weekend and get in bed at 6pm every night. It was a routine but it wasn’t a life. I didn’t host Christmas for the first time in 5 years. I felt like a failure. Entertaining was a massive part of who I was back then and I just couldn’t do it. 

Finally! A diagnosis!

Fast forward to the following spring (this is over a year since that viral trigger) and I found a GP that was willing to take me a bit more seriously. She was willing to give me some time and to listen. I saw her a few times within a few weeks and together, pretty much, (with the help of many google searches on my part) we came to the conclusion that I had Chronic Fatigue Syndrome / Myalgiac Encephalomyelitis.

I was referred to the Lincolnshire CFS/ME service… The waiting list? Six months from referral to initial assessment. And that’s a quick referral in a well resourced county. In other words, I was one of the lucky ones – 18 months from the viral trigger to official diagnosis by the CFS service…I didn’t feel that lucky! But at least now, my long and bumpy road to “recovery” could begin…