Nicola Balfour's story

I had meningococcal meningitis with septicaemia when I was 14. All I can remember is being sick; I started feeling unwell on Christmas Eve 1992.

When my mum called the doctor I couldn’t stand the lights being turned on or being touched, and my temperature was through the roof. The doctor told my mum she was fussing, I had really bad flu and to strip me down so I could cool down. If I wasn’t any better in two hours she should call back. My mum didn’t know the doctor was on his last call and his shift was finishing, so instead of doing his job and taking me to hospital he asked her to phone back.

Not long after that doctor left, the next doctor on call came straight round to my house with an ambulance behind him. It took my mum, dad and two ambulance drivers to hold me down and give me penicillin before taking me straight to hospital, where my mum was told that if she’d left me for two hours I wouldn’t have made it. 

I was out of it for over a week; I remember it was like floating down a really bright corridor towards a bright light until my mum’s voice woke me up. That’s when my fight began. I had no memories of my childhood and when I finally got home my whole life had changed. There was a wedge in between me and my family.

This horrible disease has been one big fight and I don’t know when it’s going to end, but by the time I went back to school it was just starting. I had to come home during lunch breaks as I would get too tired. I was pushed out of school; I’d missed so much they said I was a skiver and made me sit in the corridor. Even though all the teachers knew I’d nearly died, they didn’t believe me or my mum.

I ended up leaving school at 15 and a half as I couldn’t put up with spending the only time I had at school in the corridor. If that wasn’t bad enough I also got pushed out of air cadets as they didn’t want responsibility of me during camp in case I got sick again. I got a job in a hairdresser’s and thought my luck had finally changed but no such luck, I had to leave there too as I got asthma from perm lotion. 

Meningitis didn’t just take my memory, it’s taken my whole life. It’s changed all my dreams into nightmares, and as it’s always been hard for me to connect with people it’s taken the chance of love and happiness. The only good thing that’s ever happened to me was having my daughter at 18, but even our relationship has grown apart as I’m so unwell now. It’s been 23 years since I had meningitis and I’m left with so many health problems – I have fibromyalgia, sciatica, depression, low levels of B12 and restless legs syndrome. I’m in pain and exhausted 24/7, it’s uncontrollable. 

My memory is so bad that my mum who is in her 60’s can remember and do more than me. I have to go through this on a daily basis; chronic pain 24/7 is one thing but the fatigue and weakness can be even more debilitating. I have to lay down when the weakness comes on as it feels like my whole body could shut down or my heart will stop, it’s actually quite scary.

When I’m out I sometimes forget where I am or where we’re going and that’s scary too. I sometimes forget simple words that I use on a daily basis which makes me feel stupid, and I get really bad headaches that can last from a few hours to a few days or even weeks. I get really bad brain fog and have nerve damage in both ears which affects my hearing sometimes. Just my luck, where they’re damaged there isn’t anything that can be done – a hearing aid wouldn’t touch it, it would just amplify what I can already hear. I also have a fear of doctors and dentists and pass out over small things. 

It’s not a life I’m leading, I’m just existing. But I’m thankful that I’m still alive. I need help to get my life back on track, or at least try and claim some of it back. Anyway, meningitis is such a horrible illness and it has taken so much from me. I’m going to claim my life back. I’m fundraising to get a service dog because I think that would help me a lot.

Nicola Balfour
September 2015