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Tilly B’s Story

17th March 2023

Tilly from Lewes, East Sussex, was ready to enjoy a summer festival when she developed a fever. Having been told she had heatstroke she was eventually diagnosed with viral meningitis. She tells us what happened next

Tilly B’s story

“I arrived at Boardmasters festival in Newquay in August 2022 for what I thought would be the time of my life but it ended up being the scariest week ever.

“Having felt a bit off the day before, I woke up with a painful headache but I went to the beach with my friends anyway. While I was sunbathing, I started to sweat and shiver uncontrollably. I couldn't stand the sunlight.

“My friends and I didn't know what was wrong, but we called 111 and were told an ambulance would be sent for me. We camped out in a cafe for hours where I laid on a bench. My whole body was shaking and burning up although I felt freezing.

‘Only heatstroke’

“Paramedics from the festival told me, 'It’s only heatstroke, you'll be fine.' But it felt like my whole body was shutting down. Unfortunately, the ambulance was cancelled after waiting for four hours so we had to get a taxi to Truro hospital.

“We then waited for two hours in A&E where I had to keep my sunglasses and hat on because of the lights. I couldn't stop shaking.

“After seeing a nurse I was put on a drip and had some pain medication. I then waited to see a doctor who diagnosed me with meningitis. As they didn't know which type it was I was put into a side room in A&E where I stayed for three nights constantly on a drip.

“I had an X-ray for my chest, a CT scan and finally a lumbar puncture. I was then told that I had viral meningitis. I stayed in hospital for two more nights and was then discharged as there was nothing left to do but rest and complete a course of antibiotics.

On sofa for two months

“I was told I would be better in a couple of weeks but I was on the sofa for two months with constant headaches, body aches, brain fog, waves of sickness and chronic fatigue.

“I found it difficult to socialise and go out for any long periods of time which led to my mental health declining. For a previously healthy 19-year-old this meant missing out on lots of social occasions and summer holidays.

“My parents helped so much by looking after me every day, helping me at first with simple things such as walking up the stairs and cooking, to then going on walks with me to build my confidence back up.

Emotional burn out

“I moved up north for university and struggled with my health. I had another chest X-ray, two more rounds of antibiotics and blood tests, which came back fine.

“I was given no support or referrals and had to do everything myself which was very daunting.

“I felt very emotionally burnt out and found social situations hard because I wanted to be involved but after a few hours felt too tired. My brain would be so foggy I was unable to concentrate.

“Moving somewhere I've never been before for university was extremely daunting but I’m very proud of myself for pushing through and meeting new people while still recovering.

Chronic Fatigue

“Seven months on I struggle with my chronic fatigue and energy levels. I particularly struggle with mornings when I feel sick and dizzy as I’m getting ready for university, which has been really hard.

“I got told so many times that it was ‘only viral meningitis' and that I’m lucky. Of course, I know I am but I’ve struggled with no one realising how hard recovery was (and still is) and how long it has taken. No one prepared me for that.

Educate others

“I think viral meningitis should be taken a lot more seriously by healthcare professionals and more should be done to educate people.

“I want to use my experience to educate others and show how serious viral meningitis can be and how much your life might be impacted, but also that there is a light at the end of the tunnel and with time (a lot more than I expected), things will start improving.

“I now have had to be more conscious of my health and not to push myself. I make sure I have enough rest and that am doing all that I can to help my recovery.

More confident

“I have struggled with my mental health as my experience has left me feeling very isolated and alone from friends and family who, although they massively helped me through such a hard time, I felt sometimes didn’t understand what I went through.

“Now I feel a lot more confident and more positive about life. I still have days where everything is overwhelming and emotional, but the good days outweigh the bad days now. I am now able to do lots of things again that I couldn't do for months. I feel in a much better place both mentally and physically.