So it begins…

My English teacher wrote in my leavers book a quote from Of Mice and Men ‘the greatest plans of mice and men oft go awry’, then the advice ‘make sure yours don’t’.  I always remembered that advice and tried to make sure I didn’t let myself get steered off my chosen track (well actually I never had a track as such. I just knew I wanted to get good grades, go to university and ‘make a difference’)   Nice and cringy like many 16 year olds I suspect. I knew I wanted success, although I wasn’t sure what that looked like yet. I studied biology, majored in Plant Science, realised I was passionate about the environment and set myself on a path to ‘save the world’. I can’t say I’ve quite achieved that but I have worked my way through a variety of voluntary positions tracking bats, some exotic expeditions undertaking questionable science tracking lemurs and counting the number of bird species we could identify (looking back I am unsure we contributed much to worldwide biodiversity knowledge but we did manage to learn how to bake bread on an open fire which is always an important life skill), obtained a Masters and worked my way up the corporate ladder to a well paid, challenging and exciting job at a major infrastructure company.

On expedition in Madagascar when I was 21
The last date night before I got sick

After many years of playing the field I met and married the most amazing man I’ve ever met and had two wonderful if feral children. We own a lovely house, have fantastic friends, go on exotic holidays, basically live the dream right? Well we did.

I’ve never been much of a worrier. Never seen the point in it. If it’s something I can change, I change it. Or at least figure out a plan to change it. If I can’t then there isn’t much point worrying.

I never worried about falling ill and not getting better. Why would I? I’d always been a bit of a sickly child, get alot of colds and viruses that make me feel shit for a few days but from which I soon recover. I had a crappy experience with glandular fever when I was at university which dragged on for months (I blame the fact I thought I was better, embarked on 4 days of non stop drinking for freshers week then was advised that my liver wasn’t actually functioning properly because of the illness and hadn’t anyone warned me about that? No, they hadn’t). But I recovered. Then one day, a year or so after the birth of my second child and 6 weeks after returning from maternity leave, ready and raring to go, I got ill.  At first they thought it was labyrinthitis, because of the dizziness. Then a UTI because of pain and a raging temperature. Then just a vague ‘virus’ since I tested negatively for a UTI.  During this time I was horrendously ill.  I struggled to eat, to talk, to perform the most basic tasks. My body would randomly ‘shut down’ leaving me unable to move or speak at all. The first time it happened my husband thought I was having a stroke. I think I did too. I had no idea what on earth was wrong with me and spent weeks dragging myself back and forwards to the doctors surgery and on occasion the hospital, desperate for them to find out what the problem was. How I prayed for a clear, positive result for something- something treatable obviously but at least if I had a diagnosis I could tell work what was wrong with me, get some medication and hopefully start recovering.

But as the weeks slipped by and test after test was performed, I got further and further away from a diagnosis. Eventually I got referred to an infectious diseases consultant who performed even more tests and I finally got a positive result. I tested positive for a bacteria called chlamydia pneumonia (no, not that chlamydia).  It usually affects the lungs and can make you poorly but wouldn’t explain the debilitating fatigue, the brain fog, the ‘ shut downs’ (which, by the way, not a single doctor tried to explain. When I described what was happening they would stare at me blankly and quickly move on to ordering tests. One asked if it could be anxiety. No it wasn’t fucking anxiety). The consultant informed my he’d run all the tests he could and that I most likely had post viral fatigue and I would probably just recover. If I didn’t I could try some CBT to help with pacing. So I was sent on my way, to rest and just recover. Great.

At that point I had utter faith that this would eventually pass. The fatigue would reduce, my brain would start working again, I would be able to participate in my life. To be honest I don’t have many memories of this time (memory loss seems to be a symptom too) but I pretty much ‘checked out’ of life- I couldn’t work, couldn’t look after or play with my kids, barely spoke to my husband and rarely left the house. My mum was coming down for half the month to help with the kids (I had Friday’s off with them so needed to find a way to function at least a little but we mostly stayed around the house and watched alot of tv). When required, I could force my body to do something and appear relatively normal. I went to a wedding in this time and even a rock concert I had been looking forward to for a year but spent the whole time trying to survive it then suffered a massive crash afterwards. I realised that alcohol made things worse but every so often I would have a drink as it produced a false feeling of ‘wellness’ so I could pretend to myself I still had a life and could socialise. This definitely wasn’t a good idea but neither was sinking into depression so needs must.

I had an amazing time at this wedding, despite feeling utterly awful

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