NewsSurvivor Lesley, 40, wants to warn others that signs of the life-threatening condition aren't always obvious
Thursday, 19th September 2019, 14:22 pm
Every day Lesley Hart wakes up thankful to still be alive. She cant hear as well as she used to, has to use crutches to help her walk, and relies on meals being delivered to her to eat.
But its a small price to pay for what could have happened to her had the illness she was struck down with several years ago really taken hold.
One in ten cases are fatal but according to a survey released by the charity The Meningitis Research Foundation this week, almost 90 per cent of people are unaware that those who do survive the can suffer long-term health problems.
I didnt know it either, Lesley told i. I thought meningitis killed you or led to you having to have limbs amputated but thats not always the case. I didnt know you could get it as an adult either but it can strike at any age. And there isnt always a rash. Symptoms can vary from case to case and can easily be mistaken for something else, so people need to be more aware.
Lesley was 32 when she developed bacterial meningitis but at first she mistook her symptoms for a migraine.
It was a Thursday evening in May 2010 and I was working for a housing association at the time, she recalled. I remember Id booked the Friday off as it was a bank holiday weekend so I was looking forward to a nice break.
But when I got home that night after picking a friend up from the train station, I had a shower and was really cold afterwards. It was summer time but I couldnt get warm at all and was shivering. I put on a jumper, hoodie, and socks and went to bed but couldnt sleep.
After taking her friend back to the train station in the morning, Lesley noticed that her right leg was numb. Having suffered numbness in her face and hands before with a migraine, she assumed it was one coming on.
When I returned home my head was pounding and I started vomiting so went and lay down in a dark room, cursing my bad luck for getting a migraine during my long weekend off.
I had no idea then that it was something much worse.
No improvement
When Lesleys symptoms didnt pass, she knocked on the door of her neighbour, a nurse, and asked him to get her a cola drink and something to eat from the shops. He remarked on how terrible she looked and asked her to let him know how she was doing the next day.
But by at 3am Lesleys symptoms hadnt improved. Freezing cold and still vomiting, she called NHS Direct and was passed over by the operator to a clinician after explaining her symptoms.
He said, Im going to ask you just one question after you throw up does the pressure in your head go away for a while? I told him it didnt which was unusual as it normally did when I had a migraine. He replied, 'Im calling an ambulance for you. Its not a migraine, its meningitis.
I thought he was overreacting. In my mind there was no way I could have meningitis. I didnt even have a rash.
But as Lesley discovered, not all cases of bacterial meningitis present as a rash. The rash occurs when septicaemia, or blood poisoning, results in bleeding beneath the skin and happens in the most serious of cases. Lesley however, hadnt developed it.
Instincts
At hospital I was given a painkiller and anti-sickness tablet and told that if it didnt work in half an hour, I had to be taken to accident and emergency, she said. It did work but my instincts told me to lie and say it hadnt. I knew by then it wasnt a migraine.
Lesley was taken to a room where a nurse began putting her on an intravenous drip to administer antibiotics. It was the last thing she remembered before slipping into unconsciousness.
They rushed me in for a CT scan which showed white spots on my brain. It meant I had meningitis and the infection was close to my brain stem, Lesley explained. If it got to my stem it would kill me.
With no time to spare, the doctors put her on a high dose of anti-biotics and painkillers to get the infection under control. Lesleys parents were called to her bedside and told she might only have a few hours to live.
It must have been so awful for them, Lesley said. "just waiting to see if their daughter was going to live or die."
Successful treatment
Luckily, the treatment worked and after four days Lesley began to come round. Two weeks later she was discharged from hospital and sent home to Hereford. But she had no idea of the impact of her ordeal.
I still have short-term memory problems and nerve damage and have to take strong medications just so I can move my arms and legs
Lesley Hart
"It became clear pretty clearly that I was in no fit state to manage on my own at home," Lesley said. "I kept forgetting things and felt very confused and was so tired I was sleeping for about 20 hours a day.
"I didn't feel hungry or thirsty and would go for hours without anything to eat or drink, not remembering to do either. I had a constant ringing in my ears too.
"One day, I was actually cooking something and completely forgot about it. If it hadn't been for my neighbour knocking on the door and asking what the burning smell was I probably would have burnt the house down."
Lesley was also struggling to walk and kept losing her balance. In desperation, she contact the Meningitis Research Foundation who told her her symptoms were normal for someone recovering from meningitis.
"They were there for me at 3am when I couldn't sleep and was crying because my head hurt," she said. "I was so grateful for their help."
Adapting
Determined to regain her independence, Lesley went back to work after a month but soon realised she couldn't cope. Exhausted, she'd come home and sleep for the rest of the day. After changing to a new GP practice, she went to see a doctor who signed her off sick and referred her to the local brain injury team.
"That changed everything," she said. "For the first time since my illness I felt like someone actually understood the way I was feeling and why. The consultant who led the team explained how all my symptoms had happened. Basically, the disease had damaged parts of my brain. He told me that meningitis could leave people with long-term, sometimes permanent health probems because of this."
Lesley was sent for a scan which confirmed brain damage. All she could do was wait and see if her brain repaired itself after three years - the usual amount of time it takes for the organ to recover.
But, in 2015, she had to give up working full-time, reducing her hours to two days a week. Unable to manage at home, she was re-housed in a specially adapted bungalow and given a Smart device to manage the locks, heating, and lighting in her new housing association property.
It's been almost nine years but I still have short-term memory problems and nerve damage and have to take strong medications just so I can move my arms and legs
Lesley Hart
"I realised I couldn't carry on as I was. It wasn't safe for me to do my job full-time any more and had taken so much time off sick. I would forget to close or lock the doors at night or turn the heating off and had to have meals delivered to me I could then microwave so I'd remember to eat," Lesley said.
Now her life couldn't be more different to how it once was.
"I don't really have a social life any more as I can't drink and it's a struggle for me to be in noisy places," she said. "I will never be able to go back to work full-time and still use crutches as my balance hasn't returned.
"It's been almost nine years but I still have short-term memory problems and nerve damage and have to take 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 don't feel hunger or thirst and struggle to keep my feet warm. My skin grows funny on my feet as well so I have deep-tissue dermatitis. They are just a few of my issues."
Warning
Relationships are difficult too. Lesley did meet someone but they split a while ago because she said he couldn't cope with her condition.
"Other people just don't understand why certain things are difficult for me because I look fine on the outisde and when I tell them I suffered brain damage after having meninigits they are shocked," she explained.
"I guess I was the same. I never thought in a million years I would ever contract it. I was in my 30s and other than suffering migraines was fit and well. But it can happen to anyone, at any age, and have lasting consequences. I really want to warn others about that."
Lesley also said people should act quickly if they develop any suspicious symptoms.
"I waited 46 hours before I sought help which was stupid but I was one of the lucky ones," she added.
The Meningitis Research Foundation says the right support is key for people like Lesley. In its poll of 2,000 people, 87% underestimated or were not aware that people who contracted bacterial meningitis could be left with long-term health problems. And 90% didn't know deafness was a common after-effect of the condition.
Chief Executive of the charity Vinny Smith 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."
Bacterial meningitis (BM) is a serious, life threatening illness. Unlike viral meningitis, which is almost never life-threatening, it can lead to sceptaecemia and requires urgent medical treatment. Bacterial meningitis is caused by bacteria, viruses or fungi that invade the body. Although there are vaccines which prevent some types, not all causes are preventable so its vital to be aware of the symptoms.
The first symptoms are usually fever, vomiting, headache and feeling unwell. Limb, joint or muscle pain, pale skin, and cold hands and feet often appear earlier than a rash (if there is one) and other signs include neck stiffness, dislike of bright lights, confusion, shivering, becoming breathless, feeling very sleepy, becoming confused or delirious, and seizures.
Septicaemia can occur with or without meningitis and is also life-threatening. It is indicated by a hemorrhagic rash anywhere on the body. This may be a reddish discolouration, or a cluster of tiny blood spots that look like pinpricks in the skin. If left untreated, these dark dots gradually get bigger and begin to look like fresh bruises.
Not everyone gets all the symptoms of BM and they can appear in any order so it is important not to discard any and call 999 if you are in any doubt.
Continued here:
Woman with meningitis urges testing after she thought she 'just had a migraine' - and ended up with brain damage - iNews
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