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Jenny P's story

12th July 2018

Jenny from Nottingham, contracted viral meningitis in April 2018

Jenny P's story

Here, she shares her story in the hope that people will understand that viral meningitis can be just as traumatic and life-changing as bacterial meningitis.

"I was working a 12-hour shift when I felt a very mild aching pain in the top of my head. I was due to have the next three days off, so I decided to rest.

"On the second day I felt so ill I rang 111 and they made me an appointment with my local walk in centre. I explained everything to the nurse but he didn't seem too bothered by my symptoms, and although I told him I was very unsteady and dizzy, he didn't take my blood pressure or any other observations. He offered me pain relief tablets and I went home.

"The next morning, I woke up with a pain from my head down through my whole body. I couldn't physically lift my head off the pillow, turn any lights on in my house, or even open any curtains. I was also so hot I was sweating, but I felt like I was freezing.

"I decided to ring my mum who came to my home within 20 minutes and took me to A & E. I had a blood pressure reading of 158/97, and a pulse of 120. My temperature was 40.8 so they sent me straight to an admissions ward. For three days nobody knew what was wrong, thinking it was a migraine. Staff wanted to send me home, but then I started to deteriorate and I was vomiting constantly.

"The room was spinning; if I was standing up I would fall down, and my temperature and heart rate remained very high. I personally don't remember much of the next three weeks as I spent it in intensive care, with no mental capacity of who or where I was. My family have since told me that I became aggressive and was hallucinating. When I finally woke up and started to come back to reality, my family were there in masks and aprons.

"Doctors originally thought it was bacterial meningitis because it had affected me so harshly, but further tests showed I had viral aseptic lymphocytic meningitis. Later that day I realised that I had a catheter in and all these wires were coming out of my feet - I now know that was because I pulled them out of my arms. I wanted to stand up and take myself to the toilet, but quickly realised that I couldn't walk anymore and I certainly couldn't see properly. I had black dots floating in front of my eyes and everything felt like it was magnified.

"After waking I left Intensive Care and went to HDU neurology for the next two weeks. I still had a lot of pain in my head, so the doctors decided to do a lumbar puncture. They did eight and couldn't get as deep as they wanted with me awake. For the ninth one I was put to sleep. Doctors found that I had inter-cranial hypertension (build-up of pressure around the brain), which they fixed in theatre.

I was later sent to an eye specialist where they found uveitis, an inflammation of the middle layer of the eye. "The reason why I wanted to share my story is because I have read in so many places that viral meningitis isn't as dangerous as bacterial - but to me it's changed my life completely.

"I've been out of hospital for a few weeks now. I'm still learning to walk again, my vision isn't right, and I still have to self-catheterise because my bladder is in paralysis. Maybe I was unlucky, but it's hit me hard.

"My mum didn't know what was going to happen to me at one point, and I had no knowledge of who I was. Months later I still have appointments for physiotherapy, urology, eye clinic, neurology, and I regularly see my doctor. At just 26 years old and embarking on my career in adult mental health, viral meningitis has certainly changed my life."