Amanda was diagnosed with Herpes Simplex Virus (HSV) encephalitis in 2024. She spoke on BBC World Service as part of the World Encephalitis Day campaign 2025. Here is her story:

I think the illness and difficulties started early in February 2024, I thought it was post-menopausal memory loss, or plain old age! The week before I was taken to the hospital, I confused many people I had contact with and I just thought I had a cold. I was at work and my colleagues told me that I was saying strange things and not acting like my usual self. I picked my daughter up from school in my car on the Thursday but had to stop several times to be sick, this made me assume I had an upset stomach. Following this I was bed bound for the next 4 days. The only thing I remember from this period is speaking to one of my family members on the telephone on the Monday whom I mistook for one of my clients. After our conversation he spoke to my mother about our telephone call, and he said I did not sound like my usual self. Then 111 was called, they sent an ambulance which took me to hospital, this was on Monday 26th February. I do not remember much from this time but have been informed many times by my family about the events.

I do not have any clear detailed written record of my time in hospital apart from my discharge letter which was vague at best. My memory of my time in hospital is very hazy, However, I do have a note book I attempted to write in after about the first week of my stay, but my handwriting was almost illegible. The few things I remember about my hospital stay are firstly my mother coming to visit every day. I recognised her and knew her name, but often did not know the name of my children and even forgot I had a son! Fortunately, my memory of them did return to me quite quickly as my daughter came to see me with my mother all the time.

I do not remember the names of the staff that supported me, but I remember the ladies who organised meals each day trying their best to support me choosing food. I struggled to remember the flavour and names of foods and forgot what I liked. My family informed me what I used to like and if I would like a banana bringing in but I could not remember what a banana was, which entertained them lots!! Unfortunately, I was sick after most of my meals. I was constantly very thirsty and drank a lot of water each day.

My daughter, who was 17 at the time, helped me have my first shower and change my clothes, fortunately, her re-training me paid off well and I was able to shower myself soon after. The effort to shower made me very tired. I seemed to have needed a great deal of sleep throughout my stay at hospital. I do also remember feeling constantly cold even though I had a dangerously high temperature throughout the first week which eventually came down to normal levels before my discharge.

The first couple of months at home were a period of extreme tiredness and I slept many hours at night and also had a great deal of rest time during the day. One of the difficulties besides memory was my loss of language, even English. I have learned many words again but have not been brave enough to start my foreign language classes. The difficulty speaking was obvious when I was taken down to visit my colleagues at my workplace. I found it very difficult to speak clearly and remember many everyday spoken words. Friends, family and work colleagues started taking me out places as I became more able. A memory that stands out in my mind for this time is when a work colleague took me to my uncle’s house. My energy did not last long but I was pleased to see him again as I used to drive him places and take him shopping. Luckily, I am now well enough to visit him on my own regularly but I am still unable to drive. My driving assessment is now booked for the 4th of February to assess my ability to drive again.

My daughter and I are still living with my parents who have been amazingly supportive during my recovery time. They know me well and have encouraged me with cooking cleaning and gardening enabling me to be able to enjoy the outdoors as much as I did before the illness.

 

March 2025 update:

Great news today! I haven’t driven since February last year. I went to an assessment center today for people with disabilities and have been given permission to drive again!

Thank goodness my dad kept me active on his small farm driving tractors!!

 

Story published March 2025