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Leo S's story

8th December 2017

Thirty-one-year-old Leo, from Ponsanooth in Cornwall, had flu-like symptoms, an unbearable headache, fever, vomiting and sensitivity to light. She was persuaded to go to hospital where doctors suspected meningitis

Leo S's story

Tests showed it was viral but five years on Leo is still managing the after-effects of the disease.

However, she’s now defying meningitis and has signed up for next year’s London Marathon. She tells her story here.

“Five years ago in November 2012, aged 31, I contracted viral meningitis. My husband Jim was quick to realise I didn’t just have the flu, but I was stubborn and refused to go to hospital as I felt I needed to be home to care for my 1-year-old son, Oscar. He was getting over a nasty case of hand, foot and mouth which had put him in hospital for a week.

“At last my husband convinced me that I was seriously ill so I went to the Royal Cornwall Hospital in Truro, where a team of doctors immediately worked on me, suspecting I had meningitis. I was given antiviral and anti-bacterial meds intravenously immediately, had a lumbar puncture and was rushed for a CT scan.

In and out of consciousness

“I was incoherent and then drifted in and out of consciousness for three days. When I eventually regained proper consciousness my fantastic doctor confirmed that I had viral meningitis and that with a couple of weeks in hospital they thought I should be okay.

“After a week I started having real issues with my eyes. I had double vision every time I opened them. That resulted in me having to keep my eyes closed nearly all the time to ‘rest’ them. No one realised at this time that the virus had damaged my optic nerve.

“Desperate to see my young son and husband I foolishly discharged myself so I could continue to rest at home. The double vision faded but over Christmas my eyes started to suffer from rapid movement / spasms so straight after the New Year I was admitted to hospital again for three full days of tests.

Damage to optic nerves

“The conclusion was that I had damage to my optic nerves thanks to the virus and I needed to rest for eight weeks with no reading, TV or phone – not easy with a baby and a husband working away!

“Gradually my eyes healed, but then the other long-term effects started to materialise: headaches, exhaustion, anxiety, loss of ‘intelligence’, shift in personality, confused / fuzzy feeling, struggling to keep up my normal tasks at work. These effects have been truly horrible for me, and of course my husband too. Over time some are fading, others have become managed.

“However, I feel I will never truly be ‘over’ my meningitis. So many people say viral is the ‘better’ one to get. I am truly grateful I haven’t been left with physical damage, like so many who had bacterial meningitis and septicaemia, but I have found that people just don’t understand the long-term effects of viral meningitis and there needs to be better understanding and awareness.

“Five years on, feeling as recovered as I'll ever be, I have started running and I'm delighted to be running the London Marathon 2018 for Meningitis Now. Through my fundraising I have already raised awareness and have had people, who've had a similar experience, contact me for advice. It feels like great closure on my meningitis experience - doing something so demanding, so powerful, defying meningitis and the damage it caused and turning it into a positive experience.”