Meningitis in your words

Kate Ogden's story

  • Location: England
  • Categories: Bacterial meningitis
  • Age: Teenager
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Other
Kate Ogden

When I was 19, at the end of my gap year, I went from finishing a normal day at work to fighting for my life in hospital within 24 hours. 

Late in the evening on 21st September, I noticed joint pain in my shoulder and elbow. I remember an area about the size of a tennis ball aching near my shoulder and spreading down my arm. The pain didn't feel like a normal strain, but I assumed I'd pulled a muscle and didn't want to make a fuss, but it became so bad I could hardly drive home from work, and went to bed feeling very tearful. The next morning I was feeling nauseous, stiff in my joints, and had an extreme headache. I thought I had the flu, and my family were out so I was home alone. I hadn't been to the doctors in years but thankfully my then girlfriend insisted on taking me there, where I was told I had a virus and should rest and take paracetamol. 

Back at home I had a shower and noticed a rash. That was the first time I considered meningitis. I phoned my mum who came over straight away and did the 'tumbler' test with a glass. Some of the spots faded, and some didn't which confused us. The rash wasn't alarming; it was very pale, like pin pricks. My other symptoms hadn't got any worse, but I decided to call the doctor again anyway, just to be sure, and was told not to worry, a rash can appear with a virus too. But somehow I knew I felt different to any other time I'd been ill. 

Later, still not convinced, I called the Meningitis Research Foundation helpline and told them my symptoms. At this stage I was still very alert and aware of what was going on around me. They were very reassuring and told me to get other people to keep an eye on the rash, watch out for any behavioural differences, a dislike to bright lights and if I became vacant. When my Dad got home he found me in bed with the curtains closed and I'd started vomiting. My head was pounding like no other pain I'd ever experienced. I was getting rapidly worse, so he called the emergency doctor. The doctor asked me to put my chin on my chest and bring my knees up to my chest and I couldn't do either. He then asked Dad to drive me to the hospital, as it would be quicker than waiting for an ambulance. That was when I began to worry because it was obvious every second counted. Once in A & E I was still getting worse, starting to have fits, and the last thing I remember is being unable to take my hands off my head because of the pain, as I was sick over the side of the bed. I then drifted into unconsciousness. 

I was taken into intensive care with suspected meningitis although I was too ill for them to have time to do a lumbar puncture to know for certain. My family went through a lot of stress in that time, being told I was critically ill, faced with the possibility I may not survive and likelihood of brain damage. I stayed unconscious in ICU for the next four days and was looked after incredibly well. If I, and the people around me, hadn't been so insistent that this was not just a virus the consequence would have been very different. 

The first time the doctors tried to bring me round I was still too ill so was made unconscious again. I was on so much morphine I remember hallucinating and having terrible nightmares. The second time I was brought round it took seven hours and I remember waking up to see my whole family around me. When I was told I was in hospital I swore, which reassured my family I at least had some awareness! I had no memory of what year it was or why I was in hospital. I didn't believe my sister when she told me I'd been on a round the world trip or that we'd reached the millennium. My family were incredible and stayed by my bedside showing me photos and telling me stories to help me piece my life back together. It was not until 10 days later, after performing a lumbar puncture, the doctors confirmed I had meningococcal meningitis Type B. 

"I cried walking back through my front door thinking I may have never made it back there. "

I spent the next week in a regular ward recovering. Once the doctors were happy that the meningitis bacteria was under control I just had to get my strength back. I was told I couldn't leave the hospital until I'd walked the length of the ward and eaten a meal. I was so weak this was a struggle but I'll never forget the moment I walked from my bed to the TV lounge and how much it made me smile, or how much I cried walking back through my front door thinking I may have never made it back there. 

I'm extremely lucky but I did have to deal with some distressing after effects. Although meningitis can be treated with antibiotics, doctors less talk about the long-term effects. I had consultations in the hospital for two years but once most of the physical after effects had calmed down I was discharged. Six years on I have been treated with acupuncture and cranial-sacral therapy for the terrible headaches and fatigue, and counselling for post-traumatic stress disorder as well emotional problems and memory loss. At 19 you don't expect to have a close encounter with death. It's a huge shock, and that's why the psychological and emotional effects can be so difficult to deal with. I felt a huge sense of loss even if it wasn't apparent to anyone else. My experience had a huge impact on the people around me, and I was told by many that they realised what was important in life and changed their priorities, which made me think positively about it. 

I went back to college on a part-time basis to take an A-Level English but failed first time round as I just wasn't ready. However a year later I re-sat the exam and passed, and went on to study creative writing and drama at university and now work doing creative activities with children with disabilities. 

I started volunteering for the Meningitis Research Foundation whilst at Uni, raising awareness amongst students. I have talked to schools and colleges about spotting the signs as well as appearing on local radio for Meningitis Awareness Week, which is also the week in September I became ill. With the help of my family I held an auction for my 21st birthday and raised over £5,000. My Dad donated all profits from every toothbrush sold at his dental practice one year, which raised another £2,000 and I and other family members up to 70 years old have completed several runs from 5k to full marathons, in aid of the Foundation. It's great to be inventive with new fundraising ideas. 

One thing this has taught me is how vulnerable the body can be, however careful you are. Sometimes even with the quickest action and the best medical care, meningitis still proves fatal. I send my thoughts and sympathy to those families who have lost loved ones to meningitis. I'm incredibly proud of how all my family and friends pulled together to get me through it. I'll never be able to thank them -  or the doctors that saved my life - enough for what they've done. 

Know the symptoms, listen to your body, trust your instincts, and manage the minutes. It could save a life.

Kate Ogden
June 2009

The symptoms of meningitis
The symptoms of meningitis
Meningitis and septicaemia can kill in hours - know the symptoms.