Encephalitis: Liz

Liz had just finished her degree and taken the 'trip of a lifetime' shortly before contracting encephalitis. This is her story.

Published: February 2015. Date of brain injury: June 2011 (young person aged early 20s). Let’s set the scene…Growing up is like a roller-coaster. There are highs and there are lows, and this was most certainly the case for me.
I grew up in a Village on the edge of Dartmoor in Devon. As a family we always went out on day trips and I have very fond memories of my childhood. After leaving Secondary School I went on to study Psychology at Exeter University. After a few bumps along the way I managed to complete my degree in May 2011 and was as happy as pie having a loving boyfriend, lots of great friends and looking forward to building a new life in London. To celebrate finishing my degree, my boyfriend and I decided to take a trip of a lifetime to Grenada in the Caribbean.  This is when my life would change forever…

Strange behaviour

Liz Holiday
On my return from the Caribbean I started to portray some strange behaviours. I went through stages of uncontrollably crying for no particular reason, then laughing hysterically when nothing funny was happening. I became confused and vague, and answered every question with “I don’t know!” I was forgetting to take care of myself and didn’t wash for days, I would become blank behind the eyes like there were no lights on upstairs, I was suffering from insomnia and couldn’t seem to sleep at all. Then it started to get really strange; I was seeing faces in corners, hearing voices that weren’t there and smelling aromas that didn’t fit. It wasn’t long after this that I had my first seizure… this was to be the first of over 200 in the next 6 months. Maybe it was just stress? I had recently just taken my finals… maybe that was it? Maybe I was on drugs? I was acting like a druggie…maybe that was it? BUT what about the seizure? Surely this meant that there was something else going on?

Admission to hospital

The doctors tested for everything from malaria to rabies. I spent two weeks on the stroke unit having seizures, dyskinesias, echolalia, total fear of something no one else could see and deteriorating rapidly. It had got to the point that I was so out of it that I was pulling out my IV tubes and seemed to feel absolutely no pain. My temperature soared to 40, my heart rate went up to 200bpm. One story that I have been told about (as I have no memory of this time) was my attempted escapes. My parents had brought in a blue blanket so that it would feel more homely. One day I collected together my teddy, a photo of Daisy the dog and my book, wrapped it up in the blanket, put it over my shoulder and said “Come on Mum, let’s go home”. She had to stop me from trying to escape and this time I stayed, but shortly this would not be the case. In the days to follow I would make some drastic attempted escapes where it would take all the strength of two large security men to pin me back down onto my bed and make me stay there.

Diagnosis of encephalitis

Finally though, after many tests and a lumbar puncture the Dr House moment came… The test results came back positive for anti NMDA-r Encephalitis. Encephalitis comes from the Ancient Greek ‘Enceph’ meaning ‘brain’ and the medical suffix ‘itis’ meaning ‘inflammation’, Therefore, I was suffering from inflammation of the brain. But. Just to make matters worse and more complicated, my own body was producing antibodies (NMDA) that were attacking the brain and causing the swelling.  Not only did I have Encephalitis, I had managed to get one of the rarest forms out there. I had a head MRI scan, which showed three areas of swelling in the brain.  As you can imagine, swelling in the brain can cause many different problems.

A turn for the worse

Not only was I suffering from psychiatric symptoms such as delusions and hallucinations, which were making me behave in an extremely abnormal way, but my body was also starting to shut down.
Liz in hospital
I was having constant seizures, but that wasn’t all. My heart would stop beating. My lungs would stop breathing. I would stop living. There was one window of hope. After having so many seizures the nurses decided it would be safer to put mattresses on the floor. My Mum, Dad, sisters, brother and boyfriend had all come in to visit. I sat them down on the mattress floor and said “Isn’t this lovely. I love you all so much. We are such a happy family.” I then went into a horrendous seizure. This was the stage that the doctors decided I needed to be intubated (put into an induced coma), and a tracheostomy was performed as I couldn’t even breathe for myself, and placed on a life support system. After months of pulling out tubes, frighteningly high temperatures, off the chart pulses, attempted escapes, seizures, hallucinations, delusions, dyskinesias (abnormal movements) and managing to worry everyone sick, treatment started to work! Treatments including plasma exchanges (where they take out your blood, remove the plasma and then put in someone else’s plasma), Intravenous Immunoglobulin (IVIG), drugs such as steroids and immunosuppresants (and enough horse tranquillizer to put a whole rugby team to sleep), I was finally starting to make an improvement by August 2011. However, this was not to last. I had to be sedated again until mid September.

Slow improvements

By September the improvements started again. I was learning to speak, although I didn’t know it. I would get distressed saying “I can’t talk” – but obviously I was talking… I managed to say to my Dad “I love you Dad, I am your first birthday child”. It was at this stage that my family started to believe that I may be able to overcome this terrible illness. It was the first ray of light after a very dark Summer. They were starting to see the first signs of their ‘Elizabeth’ coming back to them. However, by mid-September I kept having more seizures and progress seemed to come to a grinding halt. It wasn’t until another plasma exchange that the real improvements started to happen.

Learning to write again

Liz's writing
Family and friends brought in pens and paper to help me learn how to write again, as you can see, my first attempts were worse than a child! Learning to write again was extremely important to me. When I awoke from my coma I was just like a baby and had to learn everything completely from scratch. I couldn’t write. I couldn’t talk. I couldn’t walk.

Learning to walk again

Although I do not seem to have any memories (other than a few patchy horrible memories which I believe are hallucinations), for some reason I can remember taking my first steps. After having pic lines in both arms, a hickman line in my chest (which later got infected and caused septicaemia) and a trachy I felt like a pin cushion. The central line in my neck for weeks on end had caused my neck muscles to spasm so even straightening my neck was painful. After not putting any pressure on my feet for such a long time the pain was excruciating. Having felt no pain at the onset of encephalitis I had become hypersensitive to the slightest discomfort. The physiotherapist had said that I could try to take some steps. We had been practicing my balance by throwing balloons to one another for the previous week. I took my first step. Then I took another. And another. And before I knew it I had walked around the entire nurses’ station (I have been back to visit since I have been out of hospital and it must be no more than 20 yards – but that is not the point!). To me it felt like I had completed a Marathon. I carried on improving, at a rate that shocked everyone. I moved to a Rehab Unit in October and here I made huge progress in my recovery. I learnt to start to do things on my own again; I took my first shower, cooked my first meal and even updated my status on facebook!

Returning home

Liz and Buttons
I was told that I would be discharged on December 14th. This would not do. My Mum’s Birthday is on the 9th December and mine is on the 12th December, I knew I had to be out for this. Amazingly enough on December 2nd 2011 I was discharged from hospital. I would be home for our birthdays and Christmas! I cannot begin to express the relief for both myself and all my loved ones that this day had finally come… AND I got the kitten I always wanted…BUTTONS!

Outlook on life

Life. It can throw you some pretty interesting paths to follow along the way. Everyone that has to live with a brain injury will look at the experience they have been through in a different way. I try to always look at the positives. After 14 weeks in an induced coma and six months in hospital of course my life had significantly changed. I had changed physically, mentally and emotionally. In a physical sense I was different. I had lost a huge amount of weight, my hair was limp, I had a puffy steroid face and horrendous steroid acne (I had even managed to grow an inch from lying down for half a year!). Mentally, coming to terms with what had happened was difficult. The hallucinations and delusions I had been having all seemed so real and it was hard to determine what was real and what was not. Emotionally I only really had two choices. I could think about how terrible life was, what I had missed out on and how unlucky I was OR I could think about how amazing life is, what I had to look forward to and how lucky I was to be alive. I chose the latter. So what could I do to make sure I stayed positive about this experience? The answer is: Give Back. Since I have been out of hospital I have been able to use the experience in a positive way in many respects.
Liz Running
Raising awareness about the illness and helping others has become my new ambition in life.  I also raise money for The Encephalitis Society and The Eden Dora Trust.  Running 10 miles for the Great South Run only 10 months after I had been discharged from hospital where I had been in bed for nearly 6 months was probably one of the greatest achievements of my life. I am a regional representative in the Devon area for the Encephalitis Society, which means that I can use my own personal experiences to help others that are going through something similar. This has become a key theme in my life more recently.

And finally…

Liz and friends
Having Encephalitis has, of course, hugely impacted my life, but, through the help and support I have been given by my family and friends I have been able to come to terms with what has happened and think more positively about the future. I can wake up happy every morning knowing that each day I try to make a difference in the world by supporting others. For me, it is integral to spend my time and efforts helping people to realise that there is always a positive to come out of any situation that life throws at you. Bad things happen, it is what you make from them that makes you who you are. If you would like to find out more about encephalistis visit The Encephalitis Society website here to find lots of information, advice and support.
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