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Emily's story

29th April 2015

Sixteen-year-old Emily, from Exmouth in Devon, contracted a severe case of viral meningitis in February 2014

Emily's story

It had been a normal day until a really bad headache forced the teenager to go and lie down.

As well as this symptom she had a stiff neck, high temperature, muscle pain, cold hands and feet and was unresponsive and drowsy. Emily takes up her story.

“It was a normal day and then at about 3pm I began to get a really bad headache. By 5pm it was getting worse and the lights were beginning to hurt my eyes. When I looked at a light my headache became a lot worse.

I went back to my Nan’s house and lay on the sofa with my eyes shut and by 9pm I was subdued, I couldn’t stand, and I couldn’t move my body. My mum rang 111 who sent an ambulance.

I was in Worcester hospital for five days in my own individual room, as I wasn't allowed on the ward. I was unable to walk or stand and talking was a real effort; my mum had to carry me to the toilet, shower me, feed me and speak for me.

Any time I ate I had to then sleep for a few hours as I was so exhausted. I would sleep practically all day and was awake for probably a total of two to three hours a day, if that. I went home to Devon six days after I contracted the virus and at this point I couldn't even hold my head up, sit up, walk or finish sentences.

When I got home my brother was carrying me to the toilet. My step-dad is a nurse and felt we were unsafe at home and the next day I was taken in another ambulance to Exeter Hospital; where I stayed for two days."

Allowed one crossword a day

“My bedroom had been moved downstairs so I didn’t have to be carried up the stairs and it was easier for my family to check on me. I was using a Zimmer frame to get to the toilet and back and other than doing that I stayed in bed.

On day 11 I went outside for the first time. My Nan pushed me to the beach in my wheelchair and I was so exhausted afterwards. I didn't attend school for the rest of the year and I had to miss my GCSEs, which for me was a really difficult decision as they were really important to me. However, I had no choice.

I was given crutches at the beginning of April and I then began physio every week. At this point I was allowed to do one crossword a day but I was to have no other mental, physical or emotional activity.

Using my crutches I taught myself to walk again and by the end of May I was able to walk unaided – it was the most amazing feeling!

I thought that I was conquering it and that I had beaten it, but it was just the start. When I was first ill my consultant told me that my body would heal more quickly than my brain, and she was right. My body was getting there, yes, I was weak and tired, but it was improving. My brain, on the other hand, was very, very slow."

Felt like the end of the world

“It would take me ages to reply to someone’s question and to have a conversation was still a huge struggle even at month three. I had severe body fatigue and literally no strength. I had terrible confidence issues and would hate even leaving the house. I relied solely on my mum, who did everything for me. I was scared and I was very emotional most of the time. I can't even count the times I said ‘I can't do this any more’.

Everyone told me I was one very lucky 16-year-old and very lucky to be alive and be getting better, but when all my friends and my boyfriend were off having the time of their lives and I was stuck in bed unable to function it honestly felt like the end of the world. I felt like I wasn't normal and that I’d never be normal again.

Everyone treated me differently and looked at me differently, but I got used to the staring and the questions, however hard they were. I went back to school in September, which I can see now was the wrong decision. It exhausted me and was too much, the stimulation of the people and then having to even attempt the work was an incredible amount for me to deal with and I couldn’t cope.

I decided in late November I would be home tutored instead as it was far too much for me. Over a year on now and things are still not that great, I can't smell or taste, I can't hear out of my right ear, I'm quite slow, I still have physio every week, I see a counsellor every week as I have up to seven horrific nightmares every night all about me dying – my journey is nowhere near finished yet.

I still wonder if things will ever return to how they were, probably not, but I'm more than willing to try.

I couldn't have got through any of this without my amazing family and boyfriend, who has stuck with me through it all. I'm such a lucky young girl.

Meningitis Now has helped my mum understand what is going on. It was also good for me when I was a bit better to understand that I wasn't the only one going through this.”