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.


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.

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