Viral Encephalitis Lived Experience – Pete’s Story

Below, Pete shares his lived experience of Viral Encephalitis.

Pete’s Story

Viral encephalitis: the first seven months

‘Errr, I really don’t feel well. Errr, early start but must make it up to the Snow Roads Scenic Route – last day of construction, can’t miss that. And then back to the office for financial year end!’

Three days later, thanks to the smartness, persistence and care of my wife Lorna, I was in an ambulance heading north to a hospital. And then within two hours of arriving, I was being treated for half a dozen potential illnesses including viral encephalitis: two bits of brilliance in one day.

The next week is a blur of semi-consciousness, fantasy and nightmare. However, I do recall one doctor infecting me with her optimism regarding my recovery. Over the following two weeks, I was visited by more people than I remember knowing; all positive, all enthusiastic, all helping me more than they will ever know or understand. Then the stunning, almost literally ‘mind blowing’ news that the virus was gone and I could go home.

Pete recovering in hospital

Home, brilliant, exciting, joy beyond; then very quickly the harsh reality of the brain damage and the long, slow, challenging recovery. Without doubt, Lorna and my daughters, Rachel and Jo, suffered, supported, encouraged and on occasion just put up with the ‘new me’ in ways I’ll never really understand or be able to appreciate enough.

Kate at work cares. She cares about colleagues in a way not often found in HR, and she really didn’t want me back at work but I felt it was about my recovery rather than about earning a wage, so we agreed to try it. Weeks five and six ‘attending work’ were unbelievably challenging; it took minutes to read a three-sentence email and more to reply… if I could find the password to access my computer. The support of my team of nine was brilliant. It was my family who suffered again, supporting an exhausted husband and father returning home from work irrational and negatively emotional.

But with time, challenge and the amazing support of family and friends, it started to slowly get better and the challenges bigger. In June, a presentation to a regional conference. In October, an international conference. In November, on BBC Countryfile talking about the Snow Roads where it all started. All far from easy but all helping.

The best belief I chose to agree with came from another sufferer who said ‘when it’s really bad just pause and look back because today’s badness will be much better than last weeks’.

Seven months on I’m still far from ‘me’, but also know how unbelievably lucky I have been. Lucky to get outstanding treatment from the NHS, to have supporting friends and colleagues, but most of all to have a family that believes they can help the ‘new me’ get closer to the ‘old me’… without necessarily fully recovering that ironic, sarcastic sense of humour of old.

More information

Pete is a married father of two living in the Highlands of Scotland. He is Head of Visitor Services for the Cairngorms National Park Authority, managing a team of nine that works with partners to make a visit to Britain’s largest National Park an outstanding experience.

He recorded a video for the international conference Pete: Encephalitis Lived Experience (youtube.com)

Pete is on Twitter/X and discusses life and work outdoors, as well as sparingly highlighting his recovery and the work of EI. Follow Pete here. He captured a beautiful sunset at ‘The Watchers’ on Snowroads Scenic Route. Amazing footage of Cairngorms on BBC1 Countryfile. pic.twitter.com/rjiusrfxBO

And has oft been interviewed in Scotland for WED – STV here Facebook

Pete is currently a participant in the 3 month King’s College London Department of Psychology study into recovery from Encephalitis.

 

More information on infectious encephalitis is here.