Was I mad?
According to Wikipedia
Schizophrenia (/ˌskɪtsɵˈfrɛniə/ or /ˌskɪtsɵˈfriːniə/) is a mental disorder characterized by a breakdown of thought processes and by impaired emotional responses. Common symptoms are delusions including paranoia and auditory hallucinations, disorganized 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%. 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 weeks on the stroke unit having seizure after seizure 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 food tubes and seemed to feel absolutely no pain.
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…
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.
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).
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!
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 a pick line in my neck for months on end, even straightening my neck was painful. After not putting any pressure on my feet for such a long time the pain was excruciating.
The physio had said that I could try to take some steps. We had been practising my balance by throwing balloons to one another for the previous week.
I took my first step.
Then I took 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 100 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 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…