So far I have taken you on a bit of the journey through the first few weeks of the illness. It has been a mere glimpse of what actually took place and it is incredibly hard to describe how it felt to be trapped in a nightmare that seemed to have no end. Every second of every day for ten long weeks I fought to survive the seizures, black outs, hallucinations and the intense fear. There would be hours and sometimes days when I would cry hysterically as I was in such torment.
Around the beginning of April, Nova began to keep a note each day of things that had happened. At this point it was still a battle every step of the way to get me a diagnosis and the right treatment. In her notes Nova mentions me having ‘bad episodes, terrors and shaking’, being dissociated, ‘collapsing, terrors, spasm’, hysteria, being distressed and confused. I had some particular phrases and things I would say repetitively, many times a day, every day when I was in these states.
‘Please make it stop’
‘Why is this happening?’
‘Where am I?’
‘I don’t understand what’s going on’ (this was a favourite)
‘Am I real?’
‘Have I disappeared?’
‘Do I exist?’
‘Am I alive?’
‘It doesn’t exist’
Many mornings I remember waking, when I had managed to get some sleep (the sleeping pills helped!), sobbing uncontrollably as I realised I was still in the nightmare. Nova notes this with me ‘weepy and upset on waking, ‘is this nightmare over, am I here” and ‘very upset on waking, slightly hysterical, ‘I’m still in this nightmare”.
I was lost and terrified.
The following is an audio clip taken from a dictophone recording that Nova made of me in the last few days before I was finally admitted to hospital. What you will hear was typical of the episodes of terrors that I have described above. This particular time it had been going on for, literally, days. This was Nova’s last ditch attempt to get the doctors to listen and take it seriously. It is only a 30 second clip….multiply it by 72 hours and you start to get near the reality.