Like so many others, I had heard of encephalitis but didn’t really understand what it was. It was just another medical condition. So when I became ill in early February 2018, I just assumed that I was going down with a lurgy that seemed to be doing the rounds. I sent an email to a friend to confirm a lunch date, provided that my headache and chest pains were better. I had also been seeing my doctor since mid-December regarding odd pains in my rib cage on the left side and pains in the left shoulder blade which turned out to be trochanteric bursitis.

When I developed the mother of all headaches, it was not surprising that I was discharged from A&E after a night of observation, with the diagnosis of a tension headache. They had done a CT scan and a chest X-ray but results were normal. However, they had not really taken into account the fact that I was confused, light-sensitive and vomiting. I had lost my appetite and found drinking water difficult as everything tasted revolting and made me feel even worse. By the time I returned to A&E later the following evening, I was beside myself with the pain in my head. I have little memory of the whole experience but my husband and daughter tell me that I was banging my head against the wall, swearing profusely (something that is very unlike me), very confused and kept asking for the time.

This time I was given a lumbar puncture and was immediately started on intravenous acyclovir and admitted to the acute assessment ward. I still had no idea what was wrong with me and the doctors seemed confused too. After the test results were available, it was decided that I was suffering from viral meningitis caused by the varicella zoster virus, and therefore I was moved to a private room on the infectious diseases ward.

Annette 

By now I was experiencing more pain around my ribs, which turned out to be shingles, but I never did get the blistering! I thought that was it, but the doctors were still confused by my symptoms and after an MRI scan I was finally diagnosed with viral meningoencephalitis. The reason they were stumped was because they only see 3-5 cases like mine in a year. I spent just over two weeks in hospital being cared for by the most amazing team of NHS professionals, and by the end of my stay I was almost climbing the walls with boredom.

I slept a lot, cried often and worried about the future. Three months on, and I am still finding out what the side-effects of this devastating disease have been for me. I get tired, anxious and emotional. I have lost confidence in group situations, I have problems finding words especially when I’m tired and my memory is not what it was. However, I count myself more fortunate than some people as my taste and appetite have returned and I am gaining the confidence to drive again. My concentration is also improving and I can settle to tasks for longer. Everyone I meet tells me that I look so well, and that is the most frustrating thing because they cannot see how I am inside my head; I may seem like a swan gliding on the water, but they cannot see me paddling furiously below the surface.

PART TWO (UPDATED: MARCH 2023)

So, what has happened or changed in the five years since I developed Varicella Zoster Virus (VZV) meningoencephalitis?

Lots! It’s been an interesting and challenging journey which catches me out with its ups and downs.

First came the panic attacks. I suffered one whilst shopping in the supermarket, another because I had forgotten a voucher, another at a party, another at a family gathering, I missed a school reunion because of the fear of another.

Depression hit and I wanted to hide from the world, but I was privileged to own the most amazing dog, sadly now departed, who gave me a reason to go outside. Pre-encephalitis, we would walk for hours and cover miles and miles. After encephalitis, I started to do short local walks with her instead and dreaded meeting other walkers who might want to talk. I also found I was thinking increasingly of how no one would miss me if I didn’t return home. I began thinking of ways to achieve that, but she always saved me because I couldn’t bring myself to inflict that on her. Seeking help felt like a failure. Cognitive Behavioural Therapy didn’t work but medication did. I began to claw my way out of that dark hole.

I mentioned that I slept a lot and cried often. Well, that hasn’t really changed. I tire easily but try to fight it especially when I’m in company. My energy levels vary from day-to-day, week-to-week. This can result in me becoming easily distracted and failing to really engage in a conversation. More a case of the lights are on but no one is in. People tell me things which I have no chance of remembering. I then feel guilty in case they think I don’t care, which of course I do.

Things began getting better but then came Covid! The world shut down. Any progress I had made was wiped out. I can honestly say I loved being able to shut myself away without having to explain myself to anyone. Yes, me and the dog still went on our walks, but people avoided us. Perfect! My mother died and I felt nothing, I wasn’t able to cry, so I reviewed my medication and eventually found myself again.

I am often grumpy these days and can be very argumentative, my poor husband is a saint because I wouldn’t put up with me, but I have accepted that this is the new me. Sorry everyone, but encephalitis has changed me and it’s a case of two steps forward and one step back sometimes. I find it tiring being with my Grandchildren but I love them so much and won’t change that. I can be with them and then recover once I’m on my own.

The panic attacks seem to be returning but I recognise the triggers better and am now the proud owner of a pair of sound limiters which cut the noise levels around me. It’s about finding ways through. Migraines are also more of a thing now and are being treated. I must also mention about lack of motivation. I start projects but don’t always see them through and I get side-tracked very easily.

I sometimes feel like a fraud. That I’m using the illness as an excuse, that it’s just an age thing, others have suffered worse, there’s nothing wrong with me. Guilty about everything and that I’ll be found out eventually! But deep down I recognise that I must accept what happened and move on with my life.

Find out more about the different types encephalitis here.