My story – living with the lasting effects of meningitis encephalitis
I was 24 when my life changed completely. For days, I had been feeling extremely unwell. I thought I was suffering from a severe migraine - the pain was excruciating. I couldn’t keep anything down, I was constantly being sick, weak and had severe sensitivity to light. It was during the height of COVID-19, so I was reluctant to go to the hospital. I kept convincing myself it would pass.
Eventually, after speaking to a healthcare professional, I was told to go straight to A&E (accident and emergency). When I arrived, my temperature was dangerously high, I was confused, in agony and completely disoriented. Because of COVID restrictions, nobody was allowed in with me. I felt terrified and utterly alone.
I spent a total of two weeks in hospital and was diagnosed with meningitis encephalitis. During my stay, I was delirious - I couldn’t tell what was real and what wasn’t. I would make up stories, fully believing them to be true. It was an incredibly frightening experience, made worse by the isolation. My husband was only allowed to visit for one hour a day, and everyone around me was in masks and full PPE (personal protective equipment), so I couldn’t even see the faces of the nurses or doctors caring for me. I couldn’t eat, and I was constantly being sick. A steady stream of student doctors visited me - some even asked to write their dissertations about my case because it was considered so unusual.
When I was finally discharged, the ordeal was far from over. I was left with significant after-effects - memory loss, difficulty walking, blurred vision and floaters, severe fatigue, and constant headaches and nausea. I would sleep most of the day and even simple tasks felt impossible.
Over time, new challenges have appeared. I now experience episodes where I pass out, caused by autonomic dysfunction. My body overreacts to everyday situations and I constantly battle dizziness, especially when changing position. My diagnosis, treatment and recovery have been an ongoing journey.
Even now, I find it difficult to talk about. Meningitis changed me. I’m not the same person I was before - my confidence has taken a knock, and my brain doesn’t feel as sharp. I struggle to retain information like I used to. It feels like my life was split in two: before meningitis and after.
But sharing my story is important. Meningitis and encephalitis can happen to anyone, at any age, and early treatment is vital. If something doesn’t feel right - seek help. I’m grateful to be here still, but the road to recovery is long and full of challenges. I hope that by speaking out, I can help others recognise the signs sooner and understand the lasting impact these illnesses can have.
Despite the constant battles, it encouraged me to take life more seriously. My husband and I travelled to Australia and got married; we have been making the most of seeing the world. Just because my life has changed, it doesn't mean that I am going to let it stop me from doing things because of the fear of my episodes.
I am now getting back to doing what I was supposed to do before this illness, which is primary school teaching. I now just have to adapt it to suit my new life.
To acknowledge the fact that I am still here, I have planted 1000 trees to give back to the Earth!
My experience with meningitis was terrifying and life-changing. Recovery has been a long, emotional journey, but I’ve learned how important it is to talk about it. Speaking openly helps you heal and reminds others they’re not alone. There is hope - things can get better with time, support and understanding.