Herpes Simplex Virus Lived Experience – Rachel’s Story

Rachel's lived experience of herpes simplex encephalitis

Rachel talks about her lived experience of Herpes Simplex Encephalitis:

It was Saturday night, and I’d been out to see a friend’s band play, usually one of my favourite things to do. Anyone who knows me knows I love music and I love to dance. I remember towards the end of the night every chord jangled in my head. This wasn’t normal!

I had a restless, sleepless night, adrenaline racing through my system. The next morning I felt like I had a monster hangover. I’d been sober, but I told my best friend Jem that I felt like my drink had been spiked. As the day wore on, I became increasingly anxious. Couldn’t put my finger on why I felt ‘weird’ – little did I know my brain was simmering.

Luckily, another close friend was on hand to take care of me too. Kate accompanied me to the out-of-hours GP service the following day, where I explained my sudden onset of unease. I was issued with some sedatives and told to return if the symptoms didn’t go. I returned the next day.

By then I was beginning to have visual hallucinations: not elaborate visions but the colour of the world around me began to change, everything was yellow-tinged, and my sense of taste and smell was off. Concentration became an issue, and my mum has told me I constantly asked her what the time was. I thought I was going crazy. I was given antibiotics and told to return the following day if there was no improvement. There wasn’t. The GP then instructed me to go hospital with his letter of explanation.

In hospital

If the first few days were a blur, so were the next… but I have a couple of patchy memories.

I was running a high temperature and had ice in rubber gloves placed around me. My friends tried to make me laugh by turning them into puppets. Anything to lighten the situation! I knew I was really poorly, but when the consultant gently explained that they wanted to perform a lumbar puncture as they thought my brain lining was inflamed, I was shocked. I thought they were just being very thorough by doing the CT scan and MRI earlier. The clank of the MRI is a sound that will be with me forever, I thought my head was going to explode!

The test results came back and, sure enough, I was diagnosed with viral encephalitis. A scary name that I couldn’t even pronounce properly. I had a PICC line fitted, which for those of you who don’t know, is a ‘peripherally inserted central catheter’, meaning I had an intravenous line inserted into the top of my arm, which was pushed along towards my heart until it reached the central veins. This allowed the antibiotics to work their magic quickly and efficiently and was less troublesome than a normal cannula.

Family and friends tried to hide their shock and worry when they came to visit. I will always be grateful for that. My mum was always cheerful when she sat with me, and when your mum says ‘You’re a fighter, you’ll be home soon’, it’s good medicine. Jem and Kate took me down to the hospital cafe in a wheelchair for a hot chocolate, to lift my spirits. My heart fell when it tasted horribly bitter. I didn’t want to tell them. On a particularly bad day, Jem painted my toenails to cheer me up ‘because you want them to look nice when they’re sticking up out of bed looking at you’.

All my amazing visitors brought thoughtful gifts. Chocolate, magazines, things to make hospital life easier, and most importantly, I was overwhelmed by their love and positivity for me to get well again. Those who couldn’t visit sent cheery messages to make me smile. I had no appetite, the chocolate remained untouched (not me at all), the kind catering staff gave me pureed meals because it was all I could manage. The encouragement from one of my nurses meant a lot because her son was recovering from encephalitis. I slept. Lots and lots.

After a couple of weeks I tentatively picked up a magazine. I was frightened. What if I’d lost my ability to focus on what I was reading? What if I no longer derived pleasure from reading? I have always loved words – what if I was lost for words now? I started off slowly, a short article or two. I was constantly tired. Slowly I began to feel as if I was re-emerging. I remember at that point, after two weeks in hospital, chatting with the Spanish nurse in his native language (I’d moved back to the UK only two years earlier after living in Spain for 12 years), and joking, I told him how I’d wanted to pretend I hadn’t known a word of Spanish before my brain injury.

Returning home

I desperately wanted to go home. I have an elderly mother and a young daughter that I needed to be with. Family and friends had rallied round magnificently, to take care of them for me, but I felt it was time for me to recover in my own environment. I pleaded with the consultants, and they advised I would be able to leave hospital after the five-week course of antibiotics was up. As that date approached, I became more apprehensive. We all live such fast-paced, multi-tasking lives… Would I be able to cope?

I met with the outreach team: it was time to see what I could do. Shower, dress, climb the stairs, sit cognitive tests. Make a sandwich and a cup of tea. I remember the elation I felt posting a photo of my cheese and tomato sandwich on social media – I could still do it! When the consultant came to see me before I was discharged, she told me that they were very pleased with the progress of my recovery. She said the neurology specialists had been very concerned with the results of my scans because my brain had suffered significant inflammation, and they were especially worried due to my relatively young age (thank you for that!)

The first couple of weeks at home were dark times. My fatigue made one day merge with the next. This was my lowest point. One day my skewed sense of smell was so overbearing that I cried when freshly laundered washing smelled sour. My old favourite spaghetti bolognese tasted acidic. Then suddenly, as if the illness had made a last-ditch attack on my senses before leaving, my sense of taste and smell returned. I was so grateful and savoured the normality of everything I ate, and even bad smells smelt good, because they were true!

One year later

Nearly a year on, encephalitis has changed me, but I will not let it dictate my life.

I am very lucky to be surrounded by a network of fantastic people who always make me feel confident and safe, so I am able to get back out there and enjoy all the things I love. I have regular visits from an occupational therapist and neuropsychologist. These ladies are invaluable in helping me remain positive, and they stand by me in the new direction my life has taken. I have strategies to deal with the problems I have remembering times and dates. I know that when I start to feel nauseous it means I need to rest. Most of the time my fatigue is manageable. What happened has taught me to enjoy everything while you can, even if your world has changed. I am extremely fortunate to have a second chance.

More information on Herpes Simplex Virus Encephalitis

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Page Created: 11 December 2023
Last Modified: 5 July 2024
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