Life is very different for Lesley Hart since she had meningitis nearly 10 years ago.
“I’m no longer Miss Independent. It’s impacting more and more as time goes on. But I live each day as I want to.”
Lesley is one of nearly 2,500 people who develop bacterial meningitis and meningococcal disease each year in the UK.
The Meningitis Research Foundation says the right support is key for people like her.
To mark Meningitis Awareness Week, it has released a survey showing that, while many know the condition can kill, very few are aware it can cause ongoing side-effects.
In the poll of 2,000 people, 87% underestimated – or did not know – that people who contract bacterial meningitis can be left with long-term problems.
And 90% didn’t know deafness is a common after-effect of meningitis.
Meningitis causes swelling in the lining of the brain. It is caused by a viral or a bacterial infection.
Viral meningitis usually gets better on its own. And while most of those with bacterial meningitis who are treated quickly will also make a full recovery, it can lead to serious long-term problems. One in 10 cases are fatal.
In Lesley’s case, she sought medical help when her usual migraine symptoms failed to improve.
She was admitted to hospital – and at one point her parents were told she had just six hours to live.
Lesley, who is from Hereford, says: “‘Meningitis is an infection I never thought I would get.
“My after-effects are wide and varied including a brain injury and short-term memory problems. I can struggle with holding information and I have tinnitus.
“I have nerve damage and I don’t feel hunger or thirst. I struggle to keep my feet warm. My skin grows funny on my feet and so I have deep-tissue dermatitis.
“When I was discharged I did not receive aftercare automatically, I have had to fight for every single appointment.
“Once I was referred to the brain injury team they were amazing though. He was finishing my sentences about what I was struggling with.
“It was great to be finally listened to and validated.”
‘I may have broken bits but I’m me’
She says she wants people to know that “adults get this too”.
“People see me and think I’m fine, but they don’t see the medications I take, the pain, the frustrations I go through.
“I didn’t have septicaemia but I have been left with nerve damage amongst other after-effects and the nerve damage needs strong medications just so I can move my arms and legs, still with pain but not like someone is sticking pins in them constantly.
“I would also love people to know that I’m still me. I may have broken bits but I’m me.
“Also ask me, I will happily tell, if I’m asked, rather than looked at for appearing ‘well’ but lazy.
“I have come to live alongside my broken bits and accept that it could of been a heck of a lot worse and it’s thanks to Hereford Hospital that it wasn’t.
Lesley now lives in a bungalow controlled by smart text, and has meals delivered, which she can heat up. “I have forgotten I am cooking things and leave them to burn”.
But the illness didn’t only change her health.
“My relationship has ended. I have two amazing friends, but I lost most as I couldn’t go out clubbing, and alcohol has a very negative impact on me. I was no longer deemed as ‘fun’.”
Lesley now works two days a week. “The brain injury team suggested giving up work completely, but I’m too stubborn. I also couldn’t cope with my own company every day.”
Vinny Smith of the Meningitis Research Foundation said: “While many are aware that meningitis costs lives, fewer people know about the damage the disease can do to people’s long-term health and their future.
“The cost to people can be immense and sadly some never fully recover, so the right support is essential.”