She has recently (June 2016) come out of hospital again, having been diagnosed with Mollaret’s meningitis – the name given to a recurring form of meningitis – following her original episode.
Meningitis has left her medication dependent for life and also damaged her hearing, meaning she now has to wear an aid. Her sight, heart and other organs in her body have also been affected by her ongoing battle with the disease.
Amanda-Jayne recounts her meningitis experience here:
"I had felt unwell for some time, but I was never able to pin point exactly why. Then on a Wednesday afternoon I started to feel cold and was unable to get warm; then came the most excruciating headache accompanied by a horrendous sick feeling.
I tried everything to get warm from using hot water bottles and extra layers of clothes; to sitting in a very hot bath. I went to bed early as the pain in my head and neck was unbearable. The next thing I remember was being violently sick, not being able to see a thing and my head feeling ready to burst. Four days later I woke up in hospital to be told that I had contracted viral meningitis.”
Prepare for the worst
"I found out that my brother had found me in my home and had called an ambulance, with a rash down my back that I hadn’t noticed. They turned on the blue lights and rushed me to hospital where I underwent blood tests, a CT scan, an MRI scan, and two spinal lumbar punctures.
The medical staff told my family to prepare for the worst. They said I had viral meningitis so severe, they had not seen a woman of my age with it so bad.”
The aftermath
"After I came around, I was without my sight for about three weeks. I was in the hospital for almost two weeks on various intravenous fluids and anti-viral medication. They eventually let me home as I was not the best patient; and I longed to go home. After being home for a while, I had a relapse in January and was again put back on the anti-viral medication but in tablet form.
I am still battling to get my life back. At my worst I slept all day, every day, and was virtually lifeless; but after a while my sight came back and I was able to go back to work part-time.
I suffer from extreme fatigue and severe headaches which continue to scare me; but I am not going to let this take over my life. I feel very lucky to be alive and am so grateful for everything the Norfolk and Norwich University Hospital and ambulance crew did for me. Without them, and my brother, I would not be alive today to tell my story.
Meningitis does not only affect the victim, but it affects the whole family and it is something I feel there should be more awareness about; I had no idea what was happening to me, I believed I just had a headache.
I am one of the lucky ones, but the disease has left me medication dependent and I’m living with this for life."
