Emily Stringer's story

17th January 2016

Headaches, seizures and drowsiness were the first signs that 24-year-old Emily, of Rushden, was suffering from meningitis

Emily S letterbox
Emily spent two months in hospital before she was eventually discharged.

She tells her story here

“I was 24 when, in September 2014, I started showing signs of meningitis.”

“I initially started having the most excruciating headaches - words can't describe how painful they were. I also started developing a very stiff back and neck, but I'd moved house the week before and just thought I'd been a bit too enthusiastic lifting boxes!”

“I'm normally an incredibly organised person so alarm bells should have started ringing when I forgot to turn up to work one day, but I ignored these changes in behaviour, reasoned I'd been under a lot of stress, and went to stay with my parents for a few days.”

“On my way to my parents I started feeling drunk, and by the time my mum saw me I couldn't talk. I was trying to tell her how awful I felt but just couldn't, which was one of the scariest parts of my illness.”

I started hallucinating

“She and my dad carried me to bed to let me sleep it off and, knowing something wasn't right, they stayed with me. I'm so glad they did because I started hallucinating. I was telling them I could see my eyes from the outside, I was a yellow snake with black splodges and my cat had swapped my legs with fat ones!”

“I then had a seizure, but I'd had some before so they weren't necessarily the warning sign they might have been for other people, but I know my parents feel guilty for not getting urgent help at this point.”

“In the morning I was no more alert, so my mum took me to the nearest GP surgery. As she was trying to get me into her car I noticed I was struggling to control my legs but I was still too drowsy to communicate this.”

“It didn't take long to see a doctor: he told my mum he thought it was ‘psychological’ but to ‘go to A&E to have some blood tests done to be sure’. By this point my mum was wasting no time and got me straight to hospital. I was triaged, and I honestly think the nurse who assessed me thought I was drunk.”

I was deteriorating quickly

“We sat in the waiting room for two hours, but I was deteriorating so quickly that I could no longer sit on a chair and needed to lay on the floor to know which way was up. After another hour or two I was moved to an acute medical ward, and I can remember being surprised by this - I thought I was going to be sent home!”

“Nothing really happened when I got onto the ward. I still couldn't walk, I hadn't passed urine for 18 hours, and my legs were in an extremely strange position - I've since learned that this was 'decorticate posturing', and was an extremely worrying sign.”

“I was catheterised, and a CT head scan was arranged in view of my legs, but there seemed to be no urgency.”

No one knew what was happening

“Over the next 12 hours I became more lucid, although still no more mobile, and was shocked to learn that the CT showed left sided hydrocephalus. I remained stable for the next few hours, but then had another agonising headache, followed by another seizure.” 

“As I came round there was a laryngoscope in my mouth. I lashed out at the anaesthetist doing it, which boosted my GCS score and meant I didn't need intubating.”

“This intermittent drowsiness and lack of mobility carried on for another month. During this month I had central lines, several crash calls, lumbar punctures, lots more scans and intensive physiotherapy - but still no-one fully knew what was happening.”

“Lumbar puncture results showered there was an infection in my cerebrospinal fluid, but no-one could quite say what it was, or what needed to be done about it.”

“My parents were having meetings with the neurologists, physiotherapists and nurses looking after me, but no promises - no matter how tiny - were made to them about my prognosis or recovery.” 

My body had gone into overdrive fighting off meningitis

“A full spine MRI later showed a lesion at the level of my belly button and I was diagnosed with transverse myelitis. My body had gone into overdrive fighting off meningitis and accidentally attacked healthy tissue, creating an area of scarring which caused reduced movement and sensation from my belly button down.”

“Eventually, in November 2014, I was discharged from hospital. I still needed a wheelchair, but could walk by myself for short periods of time. My catheter was removed several times, but re-inserted because I couldn't pass urine. This function hasn't returned, and over a year later I'm still self-catheterising.”

“Psychologically I deteriorated very quickly, but after about six months I could see light at the end of the tunnel and started feeling happy I was alive, not anxious that I would die. Now, I don't think you could tell how ill I was. I have a slight limp because of the spinal lesion, but I'm able to walk, cycle and rock-climb as much as I like, so it doesn't get in the way of much!”

“I'm prone to bad headaches, but they're nothing compared to the ones I had when I contracted the disease. Sometimes my left pupil becomes non-reactive to light and my speech is slurred, which can be very scary for someone I'm talking to if they don't know my history, but it doesn't happen very often - and resolves itself when it does.”

"I feel extremely lucky to have pulled through largely unscathed and want to urge people to learn from my mistakes. Trust your instincts: you know you better than anyone else, and if you think something isn't right then it probably isn't.”

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  • Matthew

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    Within 15 minutes he had gone as white as a ghost, floppy and developed a temperature. We rushed him in an ambulance

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    I was given various medicines and a lumbar puncture and then taken to intensive care

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    I went to bed thinking I just needed to rest