Today has been exactly 1 year since I ended up in A&E. It's been slightly longer since I started getting excruciating headaches; the first signs of what was about to happen next. They were so intense that I couldn't move, talk or breathe whilst they were happening. They'd only last 30 seconds or so, but it took every bit of energy I had trying to stay conscious for those half minutes. I meant to mention them to my neurologist at a routine review I had the week before I started hallucinating, but I forgot. Thinking back, I forgot lots of things in the days before the infection properly took hold - the best example was just not turning up at a hugely important IT training session for the eHospital system Addenbrooke's rolled out in Autumn 2014. Something so significant just didn't stick in my mind. My back and neck were very painful, but I'd been moving house so I put it down to a muscle strain. There were also early behaviour changes; relatively harmless situations would make me a tearful mess.
So much has changed in this year, but in many other ways most things are still the same. Being ill is still my default thought and, as you can probably tell from the above paragraph, I'm still coming up with new "what if?" and "why not?" scenarios on a daily basis. But also, when I think of being in hospital and the months of recovery afterwards, I'm only able to recall 'false memories' of things which I have a photo or blog post about - and even then it feels like I'm thinking of someone else. It's possible the heavy doses of opiates and anti-convulsants I took/take has something to do with this, but I think it's far more likely to do with the avoidance and disassociation strategies commonly used by people with PTSD. Without doubt, admitting the dangerous state of my mental health and getting appropriate help for this was significantly harder than all aspects of my physical recovery. Although I no longer feel constantly at risk or on edge, I still have to make a conscious effort to keep my mind occupied at all times to stop it wandering back to an unhappy place.
I've been fortunate enough to be able to choose which areas I work in as a HCA, and I've been drawn towards neuro departments. In some ways this has given me a lot of closure, but seeing the specialist NCCU (neuro critical care unit) and neuro re-hab at Addenbrooke's also made me angry that I wasn't able to be treated and recover there. The more my neurologist in Cambridge (I was his patient before all of this kicked off) explains what my scans and LP results mean the more my anger towards Kettering grows. I was mismanaged from the start: I should never have sat in the waiting room at A&E (I honestly think the triage nurse thought I was drunk), it shouldn't have taken 20 hours to have a brain CT, I should have been told about the hydrocephalus before I forced their hand by threatening to self-discharge, and I shouldn't have found out I had transverse myelitis by reading the 'diagnosis' section of my discharge letter. In Northamptonshire neuro-rehab was neuro-rehab: it was the same unit whether you'd had a car crash, a stroke, a disability present from birth, or an acute illness like I did. At Addenbrooke's (as it's the regional major trauma centre for the East of England) there are separate units for each of these areas, so I would have been 'living' with other people of a similar age and starting point. It's easy to say "I would have chosen that option" now I know I've completed my training and it's not a decision I have to confront again, but I honestly think I would have given it far greater thought had the Addenbrooke's option been there.
My 25th birthday happened between my illness and now. It seems 25 is the magic age where you stop being 'young, free and single' in the eyes of friends and relatives and edge into 'potential spinster' territory, so casual enquires about my love life are regularly slipped into conversation. I started 2015 in an extremely unhappy state for all sorts of reasons, but over the course of the year I've changed lots of things and now I really do love my life. I don't think a relationship would create any additional happiness, and nor do I think 'the one' is currently in my life. I think meeting someone new would re-trigger anxiety about explaining my health and history: trying to balance conveying how much meningitis messed me up vs not making my health a factor in destroying another relationship. I think I'm years, not months, away from being able to trust another person to not leave me when I'm at my lowest - and that's fine.
But, positives, because there are plenty. Looking back at what I've achieved in 2015 so far is quite satisfying. I walked out of a wheelchair, and got rid of my walking stick. I admitted - to myself and those close to me - that psychologically I was breaking down, and got the right help to get me back on track. I've qualified as a midwife. I've earned myself a first class BSc. I worked abroad. I trucked across Africa. I've moved to a new city. I've made myself a complete and happy person. I'm very grateful for all of these opportunities, and I'm overwhelmingly glad I put the hard work into getting better to enjoy them all.
Love Emily x
