My story

On June 20th 2011 my life changed.

“Life before”

my-life-before-encephalitis

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.

My Brother and Sisters

My Brother and Sisters

I grew up in a Village on the edge of Dartmoor in Devon. From the kitchen window you can see the moors and I have always loved being able to amble out of bed and go for a potter on the moors or pop in the car and be on one of the most beautiful beaches in the Country in under half an hour. As a family we always went out on day trips and I have very fond memories of my childhood.

School life

School life

I went to the local Primary School up until I was old enough to go to the local Comprehensive for ‘big school’. During these years my main priorities were finding out what the most recent gossip was and boys. Needless to say, education was not on the top of my priority list.

Somehow, with a huge amount of support and guidance from my teachers I managed to scrape through and get ‘the grades’.

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…

Holiday of a lifetime

Holiday of a lifetime

“I don’t know”

On my return from the Caribbean I started to portray some strange behaviours.

I giggled constantly for the whole 9 hour flight back home (which at the time my boyfriend put down to me having too many sweeties!). Once I had returned home 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!”

One morning I came downstairs and walked into the kitchen where our cleaning lady Trish (who had been coming to the house once a week since I was little) was cleaning…this is how the conversation went:

Trish: “Good morning.”

Me: “Who are you? Why are you in my house?”

Trish: “It’s me, Trish.”

I then got very distressed and left the room…five minutes later…

Me: “Here is your coffee Trish, milk and one sugar.”

In just a short amount of time I had gone from not recognising her at all to remembering how she took her coffee…

Then other strange things started to happen…

I forgot to pack my gym kit when going to the gym and had to do my workout in my dress, 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.

Was I going mad?

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.

Where is my Dr House?

Was I mad?

images

According to Wikipedia

Schizophrenia (/ˌskɪtsɵˈfrɛniə/ or /ˌskɪtsɵˈfriːniə/) is a mental disorder characterized by a breakdown of thought processes and by impaired emotional responses.[1] Common symptoms are delusions including paranoia and auditory hallucinationsdisorganized thinking reflected in speech, and a lack of emotional intelligence. It is accompanied by significant social or vocational dysfunction. The onset of symptoms typically occurs in young adulthood, with a global lifetime prevalence of about 0.3–0.7%.[2] Diagnosis is based on observed behaviour and the patient’s reported experiences.

This seemed to fit the bill.

A 22 year old girl. Impaired emotional responses (hysterical laughing and crying). Hallucinations (seeing faces in corners). Delusions and paranoia (thinking things that weren’t true). Disorganized speech (not making sense). Lack of emotional intelligence (blank behind the eyes).

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?

The doctors tested for everything from malaria to rabies. I spent 2 weeks on the stroke unit having seizures, dyskinesias, echolalia, total fear of something no one else could see and deteriorating rapidly. My mother thought that at the rate of deterioration I was sure to die. 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 what it was like (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.

That is how I managed to end up looking like this…

Frances A 1482

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.

As my Dad always says though “Elizabeth always has to do everything to the extreme…”.

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.

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.

I was having constant seizures, but that wasn’t all.Frances A 1480

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.

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.

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!

IMG_9517 IMG_9516


IMG_9512 IMG_9511 IMG_9504 IMG_9503

IMG_4329

 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.

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.

one-small-step-for-man-one-giant-leap-for-mankind-facebook-cover

I carried on improving, at a rate that shocked everyone. I moved to Plym Neuro Rehab Unit in Mount Gould 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!

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!

047

Moving on

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 6 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.

Raising money for the Encephalitis Society. So far I have managed to raise over £2000 for the Encephalitis Society by partaking in both the Great South Run in 2012 and the Great North Run in 2013.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.

 image (1)384221_10152148561182619_258058662_n403461_10152148438902619_1971511604_nimaging

 

 

 

 

 

I also helped my sister to organise a bake sale in our village where over £800 was raised for the Society.  By fundraising for the Society I have been able to achieve goals that I thought would never be possible.

Recently I have become 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. Raising awareness about the illness and helping others has become my new ambition in life.

http://www.encephalitis.info/support/local-support/regional-representatives

photo

Liz Oldershaw – Devon/Cornwall

“Two years on from contracting anti NMDA-r Encephalitis and spending 6 months in hospital I am very much looking forward to joining the great team of Regional Representatives at the Society. I look forward to working as a volunteer to share experiences and help others that have been through something similar and therefore being able to help others that need support in such a difficult time.”

This has become a key theme in my life more recently.

As well as repping for the Encephalitis Society I am also involved in many other voluntary positions and this year have brought about another challenge, to raise £2014 in 2014 for The Eden Dora Trust through many different mini challenges.

10314488_10153277131527619_5368516323099603950_n

I find that by using my time to help others I am able to feel like I am giving back…

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.

Even having a relapse in the Summer of 2013 has made me more determined to achieve my goals.

Summer 2013 462

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.

July 2013 101 End of Summer 2013 322 September 2013 004

LIZ PHOTOS PHONE 078

15 thoughts on “My story

  1. Wow- that is so so incredible. Sorry if I’m being really silly but why did you get the swelling on your brain? Was it from going to the Caribbean ? I didn’t quit understand that bit. I’m travelling at the moment and I can’t imagine ever ever going through what you’ve been though. It’s women like you who make me think wow, I need to appreciate life more. Xxxxxx

    • Hello! You are not being silly at all, no one knows why my body started to attack my own brain, they know I have antibodies which lead to swelling in the brain but as of yet have not got to the reason behind the antibodies! Sorry I could not be of more help, in my section on NMDA I may explain it a little better?x

  2. thank you for being an inspiration!
    You had a relapse summer of 2013 but when was the first time you were diagnosed? How are you now? 🙂

    Btw my 5 year old son was diagnosed with NMDA encephalitis too just last month February 2015. Stayed at ICU for 8 days and almost a month in the hospital.

    God bless you!

    • Thank you that is very kind. I am so sorry to hear about your son, how is he getting on now? I was first diagnosed in June 2011 and have had two relapses so far. I think I have written about it in the ‘my story’ section. Have you been in touch with The Encephalitis Society?

    • Sorry I am only just getting back to you! I have been a busy little bee.

      I was first diagnosed in June 2011 and spent 6 months in hospital then. I am so sorry to hear about your son. How is he doing now?

      My thoughts are with you, your son and your family x

  3. Dear Jewel Sunga Reyes:
    I was very sorry to hear about your son. How’s your son doing now? My nephew’s been diagnosed with NMDA recently. He’s 5 years old as well. His parents are very much worried, and so i am. Could you please tell me how your son is doing now?

  4. Hello, I just wanted to say I think it’s amazing that you can talk about your story the way you have – inspirational! I had Encephalitis 14 years ago and I’ve just started being open about it. Silly really, but being 7 when I had it, I was playing catch up with everyone else around me. Recently I have noticed my mood swings have slightly worsened and I’m definitely needing to rest more again. What would you say an encephalitis relapse is? Feeling like I need a chill pill some days.
    Also thought I’d let you know John from the Society recommended your blog to me 🙂

    Best wishes,
    Megan

    • Hi Megan, you’re not alone so many people find it difficult to talk about! I just find writing down my feelings to be a great way to get them out there and I hope other people can relate to what I say!
      I think the feeling that everyone else is carrying on with their lives is one of the most difficult to come to terms with, just hang in there and take each day as it comes.
      In terms of relapsing I think everyone is different so it’s probably best to tell someone how you are feeling and maybe speak to your GP. The encephalitis society have lots of great information which can help GPs to understand more about the after effects as often they don’t know as much as you would like.
      If I can be of any help just let me know! Are you coming to the encephalitis family weekend this weekend?
      Liz

      • Thank you for your reply. Maybe I’ll start writing things down. I just had a really bad couple of days the other week and it really hit me how encephalitis effects me (confusion, memory, concentration etc). I’m normally too busy to even think about it, as it was 10 years ago it slips my mind that I had a brain injury. So I’m trying to get in with events held by the society and stay in touch with a few people. Although I am unable to join everbody this weekend, which I’m gutted about.
        I hope I’m able to join everybody soon.

        Megan

  5. I am a physio student and have just read your story. Wow you are an inspiration and I hope you don’t mind if I reference you in future exams and assignments as you have certainly helped me get an insight into a problem I knew very little about. Thank you.

    • Hi Louise. Of course I do not mind. That is so kind of you to say and I am so pleased that I have been able to help raise some awareness. Good luck with your exams and assignments. With love and best wishes x

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s