The Reason for choosing the Encephalitis Society (My Story):

This story is probably the hardest thing that I’ve ever had to write.  Give me a document to write at work and I’ll get it done but trying to write something about myself has been almost impossible.  This is something that I have been promising to write for a long time (apologies Mum) so when my promise passed the 10 year mark I thought that it was about time to put pen to paper.

What does encephalitis mean to me?  Ten years ago I’d never heard of this word nor the illness that it represents.  I was in the final year of my University degree with about two weeks left before my final exams.  I can remember coming back from a friend’s birthday party early (unusual for me at the time) and felt like I was coming down with a heavy dose of the flu.  For the next two weeks I spent my time confined to bed at my student house, taking pain killers for a splitting headache and constantly changing my sweat drenched sheets.  I went to my GP who diagnosed me with having a viral infection, gave me some antibiotics and sent me on my way.  Luckily for me, my housemates (to whom I will always be indebted) made me go home to my parents to be looked after.

My last recollection of being at my parents was eating my Mum’s homemade fish pie (which is the greatest) up until my memory returning a month later when I was laid up in a hospital bed.  I was 3 stones lighter, had a number of needles stuck in me and had a very unusual full beard growth on my face!  According to my Mum I had had a seizure in the early hours of one morning and was rushed into hospital by the paramedics.  It was very lucky that my parents had heard me fall out of bed when I was fitting otherwise I would not have been here. 

It had been an eventful four weeks in the absence of my memory. The highlights included: 

1. Having to be sedated twice before being able to have a MRI scan
2. Asking my sister if she had seen the bears sitting on the window ledge during a particularly strange hallucination
3. Managing to pull out two drips, this from someone who has had a lifelong fear of needles and always thinks the nurse is lying when she says that it’s only going to be a “scratch!"

I was also very lucky (a word that I will use often when describing my brush with encephalitis) that the specialist who was looking after me had seen encephalitis before and prescribed me onto a course of the correct drug.  Some of the younger members of his team had to read up about it.

Following a month in hospital which consisted of getting seriously addicted to Wimbledon tennis (thank you Tim Henman,) drinking “power shakes” to build up my weight and strength (I recommend the vanilla flavour) and having a daily game with the nurses to make me get out of bed and go to the shower block, I was ready to be discharged. 

This was the beginning of the road back to my “new” normality.  At first my strength deserted me and it would be quite normal for me to walk down the stairs, say “Good Morning” to everyone and then head back to bed again.  I had also noticed some changes about myself as well; my sense of smell came and went as it pleased.  I now liked mushrooms, carrots and strawberries (the latter much to the displeasure of my mum and my sister) and I also found myself switching off for a couple of seconds – but I thought nothing of this at the time.

During my recovery I can remember one of my lowest weeks was when I found out that I couldn’t graduate with my friends from University.  I would have to sit my exams within two months of coming out of the hospital and I still didn’t have the strength to stay awake for longer than three hours at a time.  I would also have to rewrite my dissertation as I had failed this part of the course (the original one has been destroyed as on revisiting it, you could tell that I was suffering from encephalitis at the time as huge parts of it didn’t make any sense!)  I also found out that I wasn’t allowed a drink for six months (not that bad in the big scheme of things, but hard when having a warm summer and not being able to drink a cold beer!)  I also found out that my switching off sessions were actually epilepsy (a common after effect of encephalitis.)  This also meant that I could no longer drive until my epilepsy was fully under control by medication.

My full recovery took about 8 months in total from when I was first admitted into hospital.  During this time I was strong enough to see my friends graduate, I took up a course in GCSE IT to get the “grey cells” working again and to prove to myself that my brain could actually cope with going back to University.  Tests, blood tests and regular visits to specialists continued to ensure that my rehabilitation was progressing at the right pace.  During one of these specialist visits I was lucky enough to meet Dr Mandana (a clinical psychologist) who made various breakthroughs with me.  By performing special tests over a period of time, Dr Mandana was able to attain that the area of my brain affected controlled my short term memory and route/direction planning.  As many of my friends know, this has led to Cup Final tickets being left in hallways and passports being left behind in hotel safes whilst abroad.  It still amazes me that my partner – Emma, still allows me to navigate with the amount of times we’ve been lost down country roads with my new sense of direction!  Whilst under the care of Dr Mandana, she gave me a piece of advice which is still relevant now and to anyone who has suffered from Encephalitis.  She advised me to “forget about how I used to be able to do things.  Use what I could do now as a baseline and then anything above that in the future would be an improvement.”

I took this advice and everyday since 1997 has been an improvement from when I was ill.  I still get frustrated some days when I fall into the trap of remembering what I used to be able to do before I had Encephalitis.  I’ve read many articles on Brain Injuries over the years and whether or not it makes the person affected more determined in life.  If you were to ask my opinion I’d probably agree.  I still have good and bad days – the bad days when I could fall out with myself or on a day when my balance is bad.  Better news is that the good days are in the majority now.  In 2008, over a decade since I was ill I am a slightly changed person to what I was in 1997, I live each day as it comes and probably if it wasn’t for the illness I wouldn’t have travelled to New York, toured Australia and New Zealand, jumped out of a plane or ran the Great North Run.  I also returned to University and graduated from my degree course, I have changed careers completely to allow me to control my epilepsy.  Because of this and the correct medication I have been able to drive a car again. 

A word that I have used throughout this story is “luck” and I really didn’t appreciate how lucky I was until waiting for a Neurologist’s appointment and I picked up an old copy of the Encephalitis Society newsletter.  I read peoples’ stories of their battles back from Encephalitis and it made me realise how fortunate I was and this put into perspective how minor my after effects were.

This is the reason why Emma and I will be running in the 2008 Great North Run to commemorate 10 years since I overcame the illness and to raise funds for the Encephalitis Society.  This will enable them to continue to raise awareness of the illness and provide support to people whose lives have been affected directly or indirectly by Encephalitis.

Other people's stories: http://www.encephalitis.info/Resources/YourStories.html