In January 2013, I was sent home from work as a colleague recognised that I wasn’t myself. The next day I was admitted to hospital, and four weeks later, after two drug-induced comas, countless investigations and a five-day treatment of plasmapheresis, I was discharged from hospital.

I have been extremely lucky. My husband was called in to say goodbye, and later was told to expect anything from a good recovery to severe brain damage. These words still send shivers down my spine. Now, almost six years on, I am back at work as a practice pharmacist, able to drive and fly to go in holiday again, and, most importantly, am able to be a wife and a mum to Jasmine who is now 8 and Jacob who is 4.

So what has changed? Post-encephalitis, I take medication to control my nocturnal seizures, have memory problems mainly affecting my short-term memory and am unable to drink alcohol but that’s pretty much it. 

I work as a practice pharmacist in two GP practices where I support the team regarding anything connected to the safe and effective use of medicines. I never doubted that I would be able to return to work but I needed to demonstrate that I am still clinically competent. Before returning to work in January 2014, I underwent psychometric testing. These memory tests akin to the Krypton Factor assessed all parts of my memory. Happily, I was declared fit to work. I also took part in another study as I am able to function at a higher level than my MRIs would predict. Not bad for someone who can’t remember if they turned off their straighteners most mornings!

To the outside world I look the same, but people who knew me before encephalitis may notice a difference. There are significant gaps in my memory for the 18 months prior to encephalitis, and I am not always able to make new memories, especially if I have only met someone or experienced something once or twice. This can be embarrassing, but my family, friends and colleagues accept this as part of me. 

As you’d expect, a lot of things have changed in six years. I’ve met several of my closest friends at the school gate, and they’ve only ever known me post-encephalitis. In many ways that helps me to feel normal - whatever normal is - as there’s no reference to memories that I no longer have.

However, meeting new people both personally and professionally is not without its dilemmas. At what point should I tell people about my memory? Too early and I could appear to be protesting too much, and too late and people may have noticed my memory deficit and may have thought that I wasn’t listening to conversations and considered me to be ignorant or judged my professional competence. I do have a picture of my MRI on my phone case which sometimes makes the decision of when to tell people for me - especially as it looks like a cross between a lion and something out of Star Wars!

Over time, I have become more comfortable with sharing my experience with encephalitis, and generally tell people much sooner than I would have done a few years ago. I rarely refer to encephalitis, instead I use the term brain injury. As a pharmacist I’m embarrassed to say that I hadn’t heard of encephalitis until I was told that I was recovering from it, and neither had the paramedic who looked after me after one of my seizures. 

Each year, World Encephalitis Day is a reminder to stop and remember what really counts in our lives and how lucky we have been and continue to be. We hope that sharing our experiences will not only increase awareness of the condition but offer reassurance for those in the early stages of recovery, that - with a few adjustments - life can return to normal, whatever that is!


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