I was admitted to Ninewells on the 3rd May 2011.
The events, as I have already mentioned, that led to this included the private consultation at Fernbrae on 28th April. As was now usual, I attended the appointment and presented in a relatively calm state. At worst I was detached and non-communicative, certainly not the raving lunatic I had become over the past few weeks. The very tentative diagnosis given from this appointment was ‘dissociative disorder’ but I was referred back into the NHS for further investigations.
Following Nova’s frantic calls to out of hours in the days leading up to the 3rd and the Neurologist’s request for further investigation I finally found myself in the hospital ward which was to become my home for the next 3 months.
The four weeks that followed are the most difficult for me to write about as I entered the most critical stage of the illness and came close to not making it through. Fragment-me became engaged in a battle of new proportions and my memories are both terrifying and scrambled. I remember many things but the order of them is lost to me. Using my medical records and Nova’s recollections I can piece together the sequence of events but the reality of those four weeks was a total disintegration of who I was and a trip into the darkest parts of my mind and soul.
I remember my first evening in the hospital. It is hazy, but I remember having a shower in the little cubicle next to the bay I was in. Despite the fear in my heart I said to Nova, ‘this is where I’m meant to be’. That sentiment did not last long!
On admission to hospital I am recorded as staring into the distance and not answering questions. They were unable to complete the formal examination. It was on this day that Nova met the man who was to save my life. This Doctor, who I will call Dr N, listened to Nova describing what had been happening over the past 2 months. A light bulb went off in his head as he thought he had heard of something similar. He got authorisation to send for a test, an expensive blood test which had to be sent to Oxford and would take several weeks to come back.
I had my EEG and the results came back normal. I had an MRI brain scan and this came back normal too.
The MRI scan is a particularly distressing memory. As I was taken to the department I became utterly hysterical. I truly believed I didn’t exist, it must have been a hallucination. I screamed and screamed for a mirror so I could see that I was still there and the nurses dosed me over and over with sedatives until I had taken the maximum they could give. Nothing worked and I was still hysterical. They had to get me this scan though, so I went into the machine. I remember seeing Nova and as I moved in to the plastic tunnel I lost it completely. I fought like a maniac and got my way out of it. The second time I managed to stay still for long enough for them to complete it. That night, probably as a result of maximum sedation, I was the most lucid I had been for a long time. My dad and Nova were there and my friend, Lucie, came to see me. I remember that Lucie had a job interview the next day and she was asking me about GIRFEC (Getting it Right for Every Child, a national strategy around child protection and early intervention. I had been somewhat taken with this approach when it was first launched and Lucie, as a member of the team I managed, had been drilled with it!). I actually managed to string a few sensible words together which felt amazing! Almost like the old me.
Six days from admission the doctors had found nothing at all to help them with a diagnosis. They wanted to discharge me back into psychiatry with the previous diagnosis of dissociative disorder. Nova was not happy. They said there was only one more thing they could do, a lumbar puncture to check my spinal fluid. Nova and my family told them to do it. On the 9th May I had the lumbar puncture.
I remember the lumbar puncture in vivid detail. The first attempt failed and after what felt like ages another doctor was called to try again. Fragment-me appeared at this point and I remember sobbing and crying to this female doctor, ‘I used to be a professional like you’, over and over. She must have been totally bemused by my agonised words. Fragment-me just saw a woman who was a similar age to me, doing her job and that part of me that loved my job and so wanted to be back to that person broke into pieces at the sight of her.
We were sent home. Just as we pulled up outside the house and walked to the door, Nova got a phone call. It was the Neurologist. They had found white cells and elevated protein in my spinal fluid. AN INFECTION. They told Nova to bring me straight back as I needed treatment.
Back we went. I remember leaving the house and honestly thinking I would never return. I was so deeply sad. By this point I had started to develop a paranoia that Nova and the doctors were in a conspiracy together to either kill me or lock me up in the hospital forever. The paranoia was to get much much worse in the weeks ahead.
Once back they put me onto a course of IV drugs called Acyclovir as they were now working on the theory that I had a late presentation of viral encephalitis. It didn’t work. I was on this drug for nearly two weeks and it made no difference at all.
My brother stayed with me that first night back in hospital. What an angel. He slept on a chair in the room and gently blocked my way when I made to try and escape. He was a solid, comforting presence and as before, I held on to that.
During this two week period my behaviour escalated into violence and suicidal ideation. This was the new battle of fragment-me. There was no normal brain function now, no logic, no reason, just pure instinctual fight or flight from the depths of a mad mind. Fragment-me worked towards two main ends. To escape or to die. I could take no more.
I remember lying in the bay, which was mercifully empty of other patients at this time, and looking at the metal runners which draw the curtains round the beds in a hospital. They were twisted and contorted around each other in a horrible mangled mess (of course they weren’t and this was a hallucination) and I felt the same inside. Everything was twisted and mangled and jarring and WRONG. I screamed at the nurses that they had stolen my dreams, I cried and sobbed, they had stolen my dreams. Nova gave me a necklace, an Egyptian ankh which she wore always, the symbol of protection. She put it round my neck and told me to hold on to it, that she would be back soon. It was the only thing left to hold on to in this terrifying, mangled dark world I was now in.
I tried to escape. Fragment-me could not understand that my own free will was now gone. I couldn’t just get up and leave. I tried to run and several nurses rushed at me, holding me back, restraining me. Of course I now understand why that had to happen, but at the time it was one of the worst things I’d ever experienced. Being restrained. To this day I can’t handle it if I feel I’m trapped or if someone puts even the slightest pressure on me physically. I freak.
On the 16th May they did a CT scan of my chest and abdominal area and found the 2.5 cm dermoid cyst on my right ovary. The cyst was to prove to be the source of this nightmare, just a simple ovarian cyst.
On the 18th May the positive result for Anti NMDA Receptor Antibody came back from Oxford. Finally we had a diagnosis. This was the end of the ten week journey from hell to get to this point and the start of the Anti NMDARE journey into the unknown.
By this stage I had stopped eating and drinking and my weight had dropped to a dangerous level. I think I weighed around 6 stone at my lowest, bearing in mind I’m a healthy 9.5 now. I was on maximum doses of anti-psychotic medication and sedatives and my liver function was failing. I was slipping closer to the end. The hospital applied for extra staff to be with me 24 hours a day as I was a danger to myself and others and eventually I had to be treated under the Adults with Incapacity Act to enable them to keep me on the ward. My absconding habit was about to flourish.
The nightmare was far from over but the turning point had come. We had a diagnosis.