Forty years ago, I came down with violent headaches. I couldn't bear light or noise and I struggled to stay awake (writes Natalie). The first GP we saw said it was a virus and that I would be running around in a week. I wasn't.  We saw a different GP who referred me to a paediatrician. I saw this paediatrician a few times and I was eventually diagnosed with Epstein Barr, also known as glandular fever.

During an appointment with a registrar, I was told I would need to see a neurologist. Having been affected himself, he recognised that I had encephalitis. It was then confirmed that I had viral encephalitis by two different EEGs, carried out six weeks apart. 

I was aware that I couldn't concentrate properly, nor could I read without struggling. I was off school for seven months before returning to full-time education the following term. In school, I'd switch off in lessons, then suddenly discover it was 25 minutes later. I still couldn't cope with bright lights or high noise levels. My memory - which had been brilliant before encephalitis - was also affected. I could not understand, much to my frustration, why I was unable to retain any new information. Within a year I was a bit more alert, but I couldn't work out what was going on in my head. 

I was formally diagnosed with clinical depression when I was 16.  I had to stay at home but after six weeks, our excellent GP referred me to a psychiatrist at a teenage unit. Unfortunately, that shut down and I spent at least two months in an adult unit where I was the youngest patient.  In total, I was in hospital for four months. At this point, we knew that the encephalitis was responsible but not how.  

Skipping on a few years I was ill again with a virus, and I ended up with an unceasing headache alongside cold symptoms. I was terrified. I had loads of tests and it took about three years to get me on the right medication to reduce the pain levels. When my psychiatrist retired, he transferred me to someone with an interest in viral links to depression. Here we realised that I had missed out on key neurological testing which concluded that I had an acquired brain injury. It was then explained to me that the neurological problems I had were not a result of my depression but of my encephalitis. 

In other words, I'd spent 17 years beating myself up for being useless, a bad person, lazy, and at fault when actually I had 'impaired abilities'. To say I was devastated is an understatement. It took years to get over this and I do resent being left in this position. I had refused to change the medication I was taking for depression since I was 17 because I was terrified of slipping backward. But now I had a good reason to change my medication. So, I was admitted to hospital for 45 days as I transitioned away from the old medication to new and better ones.  

All this time I have continued to suffer from chronic headaches.  This spring I got the diagnosis of Atypical Trigeminal Neuralgia.  I was put on new medication and for the first time since 1998/99, I get days without headaches.

Why Leave A Legacy? 

I was left for so long without a full diagnosis of the initial viral stage. No explanations, no help, no medical assistance after diagnosis except from my GP. 

Around about 2000-2002 I came across the Encephalitis Society website.  I sat there sobbing as I read through a list of encephalitis consequences, coping suggestions, etc.  Everything that I had struggled with, blamed myself for, and had to find coping strategies for was laid out in front of me. 

I cannot stress enough the difference this website made to the life of my parents and I. I'd say that every consequence and every issue we had was addressed on that website.  

It breaks my heart to discover that today, encephalitis survivors and their families are still not getting the help that they need except from the Encephalitis Society. 

I hope that the Encephalitis Society is always there for the people who have been left unsupported, for those who need some extra guidance, or those who simply need to pick up the phone. That's why I am supporting this charity with a gift in my will. 

It's so easy to make an inquiry about leaving a legacy. It's just as easy to arrange it. Please consider joining me in supporting the Encephalitis Society through your will. 

Leave a gift in your will to the Encephalitis Society

Writing a Will can feel daunting, meaning many of us put off this important task.

But, thanks to our trusted partners at Farewill and Moore Barlow, we are delighted to say you can now get it done for FREE. 

There is absolutely no obligation when using our free Will services to leave a gift to the Encephalitis Society.  

However, once you have taken care of your loved ones, leaving a small gift could one day make a huge difference to families devastated by encephalitis. 

Our free Will service is becoming a popular choice among supporters who want to ensure that the Encephalitis Society is here to help others today and for years to come. 

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