After encephalitis left me fighting to recover from ICU, I had to relearn everyday tasks and rebuild my confidence, discovering a changed outlook on life along the way.

Life before encephalitis

Before everything changed, I was a bubbly outgoing person who loved my job, holidays and family and friends get togethers. I would always go out of my way to help anyone. I was always booking getaways, holidays and days out with family and friends. Loved going to visit my mum 1 day a week and we would take the dog to the beach.

The first signs something was wrong

The first signs that I knew something was wrong were that I had flu-like symptoms for two months, including severe headaches, body aches, weight loss, forgetfulness and feeling weak. I didn’t seem to get any better; if anything, I was getting slightly worse each day, but I tried to get on with daily tasks and did my best to forget about it. It was a massive struggle every day. During that time, I was admitted to hospital in December with Hepatitis A and gastroenteritis. I was in hospital for a week and was sent home as I was feeling a little better. Unfortunately, as the days went on, I started to feel very unwell again. I made an appointment to see the doctor, but after doing my observations and seeing that my numbers were fine, she told me to go home and said I should feel better soon. That wasn’t the case, as I could barely walk. This was about two weeks before my partner found me unconscious on the floor at home. It was a good job he came home when he did because a few people couldn’t get hold of me, so he knew something was wrong. He rushed me to the hospital in the ambulance. Luckily, he works for the ambulance service with his dad, so they both managed to get me down the stairs on a sheet and onto the ambulance. As soon as they got me to the hospital,  I was sedated and put onto a ventilator within 30 minutes. I was then taken up to the intensive care unit (ICU) and was on the ventilator for 9 days.

Waking up and receiving a diagnosis

When I was finally awake and had a few days to come around, the doctors did explain to me what has gone on but I found it difficult to take in and understand information but as time went on I did understand a bit of it.

A neurologist consultant told me I had encephalitis. I didn’t quite take it in at that point. As time went on, other consultants and neurologists did explain but I could only take in so much information at that point. They are still to this day not sure if it’s Autoimmune Encephalitis or Hashimoto’s Encephalitis, that was caused by some sort of infection. I was also diagnosed with Graves’ Disease at the same time.

Care in hospital

I received brilliant care from all of the doctors, nurses and health care assistants. They were all brilliant and I couldn’t fault them one bit. They always had time for me. I was on a lot of different medications, fluids and feed.

The most difficult moments

The most frightening and difficult moment was waking up on ICU. I saw my Mum and partner when they took me off the ventilator and I was told that I had tears running down my face. The doctors didn’t know if I would wake up, remember anything or anyone. But I remembered the most important people on my life.

Although it was such a difficult and emotional time, everyone from the hospital staff to family and friends helped me to cope as best they could.

Recovery and rehabilitation

The first signs of improvement were when I was able to move my hands and arms.

I was surprised and shocked at how much I couldn’t do, such as; sit up, walk, the use of my hands. I couldn’t believe that I had to learn to use a bush, toothbrush, cutlery or walk, sit and stand. I thought I could do it all, I was so very emotional that I couldn’t do it, it took months before I could do all of those things.

My memory was a bit of a blur, and I don’t know or remember anything that happened or even going to bed the night before. It definitely knocked my confidence; my speech was different and took a couple of months to sound myself again.

Emotional impact

I felt that some people thought I could do everything and get back to myself within a month or so, this effected my mood and I was very emotional for a good 10 months after.

A changed outlook on life

This experience has changed me, I have a different outlook on life completely, you have to live life to the full and do what you want to do. Enjoy and live every day like it’s the last. Never take anything for granted.

Please contact our support line if you would like to talk to us about encephalitis.

Story published August 2026