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Annette T's Story

21st May 2024

Annette fell ill in 2018 with headaches and photophobia. Her condition worsened to include altered taste and appetite, vomiting, confusion, erratic behaviour and foul language. The 58-year-old from Woodingdean in East Sussex was eventually diagnosed with viral meningoencephalitis, which has had a life-altering impact on her and her family, as she tells us here.

Annette T's blog frame

“I was suddenly this unrecognisable person who looked so well from the outside but was damaged goods on the inside.”

“At the end of 2017 I was suffering with trochanteric bursitis, which was causing a lot of pain and discomfort and many sleepless nights. So, when I started getting bad headaches and feeling generally unwell in the new year the GP diagnosed tension headaches.

“These headaches didn’t respond to any medication though and by the beginning of February I began to lose my appetite. Everything tasted awful, even the water, and I had to be persuaded to try to eat. A week into February the headaches ramped up a gear and I became photophobic, began vomiting and just wanted to sleep. I also became very confused and disoriented.

“By this time my husband had rung 111 for advice and an ambulance was called. After a night in A&E I was discharged with medication and a tension headache diagnosis. The bursitis was blamed.

A changed person

“By the next evening I was a ‘changed’ person. My behaviour was totally out of character. I couldn’t tolerate any light, I was swearing constantly and banging my head against the wall. So, back to A&E.

“This time I was given a lumbar puncture and a CT scan and immediately admitted. I was given a room on the infectious diseases unit and was started on intravenous antivirals.

“After a few weeks of hospitalisation, blood tests, scans (CT and MRI) and IV Acyclovir I was eventually given a diagnosis or VZV viral meningoencephalitis. Apparently the hospital only comes across a few cases every year.

“There are so many things that I’m still unclear about from that time and my memories come mainly from family members.

Advised to get on with my life

“After discharge I was advised to get on with my life. which I tried to do. But I wasn’t ‘me’ anymore. I was suddenly this unrecognisable person who looked so well from the outside but was damaged goods on the inside. I lost all self-confidence, became anxious and depressed, suffered from fatigue, was very emotional, impatient and angered easily. I eventually became suicidal and was put on antidepressants. It’s been a slow road to recovery and just as I felt as if I was gaining some confidence to get out and rejoin the world again … COVID struck!

“I count myself lucky to have survived when many don’t and to have only been left with an acquired brain injury and recurring migraines. My memory is not what it was, but I try to challenge myself every day and learn something new. It doesn’t always work though as retention is not good. I can keep secrets because I won’t remember them!

Family make allowances

“My family has had to make allowances for me in my new state and understand if I flake on them. I am affected by severe panic attacks which have had an impact on my hobbies. For example, I can’t be in a choir anymore because the attacks are triggered by noise and crowded spaces. I can cope one day but not function at all the next. I can’t settle and see a task through to the end. I’m restless and unreliable. I’m ‘lazy’.

“I’m beginning to accept the new ‘me’ and am living one day at a time. Two steps forward and one step back but at least I’m moving forward.”