Comfort and loathing in Ninewells

I had survived surgery and had the IVig treatment and initially, in the first week or so after the surgery, there was a big improvement. I stopped being violent, aggressive and paranoid and became much calmer. As I explained in the previous post however, this progress did not continue. I was calmer but disconnected and still lost in an inner world like no other.

My mind, the little bit operated by the fragment, was able to process some occasional thoughts and, as I will describe, grumbled and fizzed silently at some of what was to follow in the next few weeks. I would be raging inside but, exhausted and numbed by drugs, I complied to a certain extent.

The electrical current still pulsed through me but there were some moments when I felt peace. To have been in such torment meant these precious moments were like heaven to me. The first thing that brought me peace was my mum and her reiki. Mum worked in the hospital so she would come and see me every morning and often in the evenings. She would sit and hold my hand as I lay, rigid and silent, on the bed. As she held my hand she would give me reiki and after a time I would begin to feel a calm and peace flow through me. I would beg her to stay till the lights went out and I was given my sleeping tablets, the scared and lost part of me needed that so badly. And she would stay. For hours, just holding my hand and bringing me peace.

The other time I remember this feeling is when Nova would come to see me and, exhausted by the nightmare she was going through, would climb onto the bed with me and we would fall asleep in each others arms. I rarely slept without the help of medication so to drift off like this, wrapped up and safe, was just pure bliss.

What I have been remembering lately is how the relationships I had with my family and friends at that time took on a whole new form. Any emotional baggage, grown over the years, was gone. It was stripped away. In my time of desperation and utter dependence these relationships took on a form of pure love. Nova, my mum, my dad and step mum, my brother and his girlfriend, Nova’s mum and my sister in law, Jamie, our friends who stood by us all the way, I didn’t care one tiny bit about any difficulties we may have had over the years, any perceived failings or past hurts. Nothing mattered except the fact that they loved me and I loved them and they were there when I needed them most.

My dad tried to visit as often as possible but he was suffering a nightmare of his own. My step mum, Gill, who I loved with all my heart, was losing her fight against Myeloma. I was unaware and it devastates me that the last time she came to visit me is a memory I have lost. In all the things I remember, I don’t remember the last time she spoke to me, put her gentle hand on my arm or kissed me goodbye. It is the part of my story that breaks my heart more than any other.

When my dad did come I was glad. He would sit, in his lovely dad-ish way and tell me that he was going to get me better. We would get me better, he promised. I believed him.

My brother was already someone who’s strength and belief I held on to for dear life. He never gave up on me and his presence was a gentle, solid comfort. When his lovely girlfriend, Domi, came to visit me, she seemed like a shining angel to me. So lovely and so gentle. I remember telling her that I was trapped in the hospital forever and she softly reasoned with me that that wouldn’t happen. I could barely communicate with any of them but their presence meant the world.

Nova’s mum came and she brought fudge doughnuts. I still wasn’t eating and there was a constant stream of delicious treats in my room to try and tempt me. She sat with me through one of the plasmapheresis treatments which were soon to come my way, hours and hours that treatment took and she sat by my side. The support she was providing behind the scenes was, I know, invaluable to Nova and although I wasn’t aware, to me. She put up with a lot from me and saw some of the worst of my behaviour but she too, never gave up on me.

My sister in law came. She had featured often in the early days, looking after me and once I was in hospital, helping to keep me there. During an escaping-spree she was with me and blocked my way out. I went to punch her and she just looked at me and threatened to sit on me. I thought better of it and went back to bed. She brought me chocolate chip and pumpkin cookies. My favourite thing that she used to make.

Lucie visited and she brought Mars Planets and Haribo tangfastic. I barely spoke and sometimes turned away from the people who came to see me but it was because of the electrical current. It sometimes got worse when I had visitors, I don’t know why. I wanted to see them and I wanted them there but sometimes my body reacted this way and I would be locked in the fight against the vibration and tension, unable to say what was going on. Later on, Lucie was one of the first people who managed to get me to engage in an activity. She got me to play snakes and ladders and after months of the blank nothingness this was a bit of a miracle.

A childhood friend came to see me regularly and she would do my nails. She would give me a manicure and once she brought me earl grey tea and china cups. I liked to listen to her telling me about her family and what they were up to even if I couldn’t do the same.

Friends and family that couldn’t be there sent cards and little gifts. I know that there were people who wanted to come but Nova kept it to a minimum, knowing I wouldn’t have coped or wanted them to see me this way. The cards meant a lot and I did register them, deep down with fragment-me. One friend sent me a balloon because I wasn’t allowed flowers on the ward. This friend is a very successful business woman and when I was alone fragment-me would look at that balloon, with it’s little card attached and was convinced that it contained a message about how to escape. The reasoning was that this friend was so clever she was bound to know how to get me out.

I played a game with myself that was to do with the cigarette burn I had inflicted on my hand all those weeks ago. I had a nasty scar and I told myself that when that faded I would be well again. I looked every day, hoping to see it disappearing.

In amongst all these people and actions which kept me going, were also many, many things which brought me distress and discomfort.

The noises of the ward drove me mad. There were always trolleys being wheeled past and I was confused about the sound. It was loud and rattled and I couldn’t work it out. The man in the room next to me moaned and screamed a LOT. It was a horrible sound and resonated with my soul. He died at some point during my stay. I hope he found some peace. Sleep was a precious thing to me, it brought the only total respite from the constant electrical current and the weird world around me. I raged silently every morning when I was woken up by a nurse bringing fresh water into my room. It wasn’t their fault, they were just doing their jobs, but I raged to be woken back into the nightmare each day.

Being woken up would be followed by the utter delight of the breakfast regime I had been put on by the dieticians. Because my weight was so low they had prescribed some vile drinks and cooked breakfasts for me. I know it sounds ungrateful but these were not the most appetising. I could barely manage to feed myself in these days, I didn’t have the strength, motivation or co-ordination to manoeuvre food from the trolley-tray by my bed into my mouth. Each morning I would manage the white roll they brought and would then fish around in the congealing breakfast for something vaguely edible. The breakfast was served in a round pot. A one-pot breakfast. The eggs and bacon and beans all swimming about in layers. I never really managed much.

I was given my vast amounts of medication at various points throughout the day and fragment-me hated this. Every day I would plot how I would refuse to take it but the numbness would flatten my plans at the last minute. It felt like I took about 20 pills each time I was handed the dreaded plastic cup which contained the medication. I HATED it.

I hated having needles constantly stuck in me too. I would get bloods taken all the time and every evening would get the detested fragmin injection. The fragmin was to stop blood clots from forming and was one of the many things I had to endure as a counter to the medications I needed to take. That injection really bloody hurt. I was always given the choice of arm or stomach and I always chose arm. Into my shoulder it would jab and fragment-me would spit inside at the pain.

There was more to come that would spark the fragment-rage as my treatment moved forward. The next stage was to be the plasmapheresis and a whole stream of psychiatrists, neuro-psychologists and occupational therapists. The fight would soon start to come back to me, not in the violent way it was before surgery, but in a stubborn, determined and deeply frustrating way for my family.


From the black hole to the dream world

The cyst, the tiny, evil monster that had caused all this horror, had been discovered. Dr Dalmau’s leading paper on the treatment of NMDAR suggested that the removal of the cyst should be the first step once it had been found. Methylprednisolone (steroids), IVig (immunoglobulin) and plasma exchange should follow. From all the research and case studies that Nova read once we knew what we were facing, it seemed that this was indeed the best way forward.

The doctors, however, wanted to start with the IVig but they didn’t have a licence to use it to treat this illness as I was the first case in Ninewells. They thought it would take around two weeks to get this in place. Nova was concerned that by the time two weeks passed and I got the IVig, I would be too weak physically to undergo surgery. I still wasn’t eating or drinking, on maximum doses of heavy duty medication and seriously weak. Eventually the doctors agreed that it made sense to get the surgery done while we waited for the licence. The two gynaecologists who then got involved were an amazing support for Nova. They acted really quickly and researched the complications associated with surgery and the illness I had. There was a team, including two anaesthetists, standing by ready to perform the operation. They took the decision out of Nova’s hands about the surgery as it was a possibility that my ovary or more would have to be removed. Knowing my longing to be a mum, this was a huge relief for her.

I was totally unaware of all this medical progress with my case. I continued living in my dark, mangled, blurred and nightmarish world but from a few days before my surgery I entered a black hole. This is the only point in my illness where I remember nothing apart from one tiny moment. There is about a week and a half of nothingness. I have no recollection of going in to surgery or coming out. Apparently it took a lot longer than anticipated but was successful and I returned to my little room to recover. The only memory is of waking up briefly in a rush of light and asking for more morphine. I must have been taking this orally as I remember drinking it and sinking back into blissful oblivion.

The next memory I have is of being at home. My surgery took place on the 1st June and I was given a pass to go home for a couple of nights on the 10th. The memory is of being in the bath and suddenly seeing the dressings on my abdomen. I had no idea why they were there and was very confused. I’m sure Nova tried to explain but I don’t think I took it in at all.

Following the surgery I was given 5 days of IVig. Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand blood donors. I was starting to grasp tiny pieces of information about what was happening to me and in this case I remember my mum telling me that this was going to help make me better and that she would be with me until the treatment was finished. She stayed true to her word and together we watched those bags slowly drip their promised magic into my body.

Prior to my surgery I had been in a deeply dangerous, fierce, paranoid and desperate state. I now moved into a new phase and a new state of being. This was the dream world. The raging fragment me was exhausted, totally spent. It was still there but the fight was gone. I suppose, looking back, that it was a combination of the extreme trauma my body and mind had been through over the last few months coupled with the removal of the source and the high dose sedatives and anti psychotics I was still being fed. Rage and terror were replaced with nothingness. A dead, flat, and complete nothingness. My mind was calmer and working for small moments and fragment me flickered to life from time to time but I felt nothing. No emotion, no connection and no sense of being part of this world. It was like floating in a dream world.

I still wasn’t eating or drinking much and had no motivation or ability to do anything at all. I didn’t really walk, I shuffled. The hallucinations had stopped and the drop attacks but the electrical current remained. It wasn’t quite as acute as before but I still don’t think there were more than a few occasions when my body would actually relax from it’s tense, rigid and clenched state. I could feel no emotion and feel no peace. A strange combination. I had also begun to notice the effects of the medication and they tormented fragment-me. I suddenly became aware of a vile outbreak of acne all across my face and chest. This was caused by the steroids. I also realised that if I lay on my side I would drool out of the side of my mouth and there was nothing I could do to control this. So I didn’t let myself fall asleep unless it was night and I was given sleeping pills.

I was so thin that none of my trousers would stay up, even the smaller clothes nova had bought me were ridiculously big. I would shuffle around holding them at the back to stop them falling down. I had horrendous acne. I drooled constantly. I rebelled against the shower on the ward. I was disconnected and numb. I barely spoke. I lay in that bed for hour upon hour staring at the walls. Fragment-me was demented with the empty hours but had nothing left to give. I watched the clock. Listened to the sounds of the ward and waited, waited for my devoted family and friends to come, even though I couldn’t talk to them, and they did come. They sat with me for hours and my next post will pay tribute to the many memories of their love and kindness. I waited for the days when I was allowed home on pass and waited for something, anything to change.

To escape or die

  • Expressing suicidal ideation on ward – 12/5/11
  • Absconded from ward -13/5/11
  • Agitated and violent on ward -15/5/11
  • Punched me! – 15/5/11
  • Police on ward on several occasions

So reads a slide from the presentation delivered by my saviour, Dr N, in the months following my recovery.

The psychiatrist’s notes read –

‘Overnight Sophie had been absconding from the ward. On Saturday night she was very agitated as well. On Sunday she was violent and aggressive and assaulted the Specialist Registrar (Dr N) by punching him in the ribs. Last night she absconded from the ward and was brought back by the Police at 4am having made her way to Dundee Airport’.

It hurts me now to see my violence and aggression written down in black and white. It is so far from how I normally try to conduct myself that I feel ashamed to share it. I know that it wasn’t me behaving in that way, but as I’ve tried to describe, it was tiny little fragment me waging a war of fight or flight in the only way it had left.

I spent my time focused on two things, how to get the hell out of the hospital and how to end my life. I was somewhat more successful with the former, obviously.

I would lie on that hard hospital bed, medicated up to my eyeballs and barely able to function on any level, but my mind and eyes would be searching out potential methods and means by which I could kill myself. My notes record the nursing staff finding me with some sort of tubing from the equipment in the room wrapped around my neck. I told the staff, with absolute certainty, that I was going to kill myself. That is recorded in my notes too, along with how worried they really were for me. I looked longingly at the window of my room which opened no more than a few centimetres, wondering if I could somehow get it open further and jump out.

I watched, the day they took every item they could move out of my little room. To protect me but fragment-me saw yet another loss and indignity.

Hooked up to the IV for 3 weeks, I discovered one day by accident that if I ripped the IV out of my arm a lot of blood would flow out. I discovered it as I stumbled to the toilet in my room, forgetting I was hooked up, and pulled the drip out. Blood spurted all over the floor and I called for the nurses. This gave me a new trick though and one day, in a suicidal frame of mind, I decided to pull out the drip, hide my arm under the covers and try to bleed to death. A doctor was sitting by my bed doing a routine check. As he got up to leave I said to him, dead pan and matter of fact, ‘I’m bleeding to death under here’. The poor man. He pulled back the covers to reveal a pool of blood and once again, the long suffering nurses came to my aid.

I believed I was trapped forever. I really did. I thought it was never going to end and I was never going to leave the hospital. This was not a self-pitying or logical belief, it was deep and terrifying. My paranoia was getting worse.

My absconding tendencies were growing too. I had taken to running for freedom whenever I went for a cigarette to the point where even that was banned. They put me on patches and fragment-me raged. Many times the nurses had to sprint after me across the hospital grounds or through the corridors . Despite my horribly weak state I found an incredible strength and speed when it came to my break-outs. I remember tearing through the main concourse one day, hotly pursued by two nurses, when all of a sudden I came face to face with a friend from way back in my school days. I hadn’t seen him for years and here I was, flying at speed through the crowds in my jammies, hair wild, ghostly thin and screaming, ‘they’re trying to keep me here, they won’t let me go’. I remember the poor guy saying something like ‘I’m sure they have good reasons’. He came to see me some weeks later as he worked in the hospital. That meant a lot.

My first major escape happened on the 13th May. You hopefully have, by now, a picture of the state I was in physically and mentally but somehow I managed to drag my thoughts together enough to plan what I did next. Nova had been in to see me and it was late in the evening. I don’t remember it but I must have been watching and waiting for the moment when the nurses had their backs turned as their station was directly at the end of the corridor which was my only route. Again, in my jammies and bleeding from ripping yet another IV out of my arm, I made it to the front door of the hospital. I went to the taxi rank and, god only knows how, I managed to persuade the second taxi driver I spoke to to take me home. I had no money but told him I would pay him when I got to the house. As much as I am ashamed of how I was at that time a part of me is impressed at how fragment-me pulled this one off. I couldn’t even do my own teeth but the determination was so great that, in a swirling, blurry effort I found myself on the road home.

I now know that Nova had not even got home from visiting me when she got a call from the ward to say I had gone missing. Knowing my suicidal state of mind she instantly panicked that I was heading for the Tay Bridge, something I’d mentioned often. Nova phoned Lucie who came straight over to the house for support.

I arrived shortly afterwards and made my way in, telling Nova I needed £40 for the taxi. I was so happy. I had made it home, my beloved home.

I don’t know how long I was there and I know I kicked up merry hell when Nova insisted I had to go back. I was so very ill that I would die without treatment. Lucie and I were in the garden at one point and I remember spotting that part of the IV was still embedded in my arm, I wanted to get it out. Lucie was begging me not to pull it out, ‘please don’t pull that out of your arm’, but I did it anyway. I ripped that thing out, oblivious to the pain and blood. It must have been awful to watch.

After a long fight Nova finally managed to get me back in the car and on my way back to my prison cell.

On the 19th May I made another bid for freedom. Just like I would plot my demise I would obsess about ways to get home. On this occasion I decided that if I could get to Dundee Airport a friend of ours, who works there, would take me home in her car. Again I managed to escape and in my now-usual attire of jammies and blood I made my way to the airport. I remember walking into the terminal and going up to the desk. I asked if my friend was there and the stunned looking guy on the desk said that no, she wasn’t. I turned and walked out, heading into town but devoid of a further plan. It wasn’t long until a police car pulled up beside me and I didn’t resist as they put me in the vehicle and took me back.

It wasn’t long until the 24 hour staff (guards!) were in place and I was never alone. I hated it with a passion and fragment-me spat venom at the poor people who had the misfortune of being at my door for hours on end. I took a particular dislike to one male guard and would give him the finger every time I saw him. He used to wait until I was in the toilet to rush in and make my bed to try and escape my wrath. I was not even so much a fragment now as a raging, snarling, dark shadow self.

Despite these unbelievable displays of strength and cunning I was deteriorating further and growing weaker. Nova, my family and the doctors were reading up on Anti NMDARE as fast as they could and it seemed that removing the cyst, the source, was the next step. The cyst was a teratoma. It contained different bodily tissues and those included neurological tissue, a little tiny bit of brain. My body had produced antibodies to fight it and somehow the link between the neurological tissue in the teratoma and in my brain caused the antibodies to launch the attack on my brain. This was what was causing all the symptoms. 

Moving my treatment forward wasn’t to prove so straightforward though until two amazing female gynaecologists stepped in to the picture and I faced the next challenge in my journey.

The end and the beginning

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.

Compulsions, alternative healing and the turning point

I had survived a month of this hell. We hurtled into April and nothing improved, it only got worse. I was completely in the grip of this monster, fragment-me was virtually a speck now.

As I raged about the voodoo being performed on me, Nova, increasingly desperate and at a dead end with the conventional medical route, looked to alternatives that might hold the key. I remember going to homeopathic appointments, sitting in my vacant, staring state, hearing the words but lost in the haze of my mind. I was prescribed some homeopathic tablets and I recall the battle Nova had to get me to take these. The instruction was ‘don’t chew them, let them dissolve’…I found this tricky but I tried my best! Friends all over the country were sending me Reiki and my mum and Nova were giving it to me directly. Mum gave me Reiki hand to hand, something she continued through the long months ahead in hospital. It brought me comfort and some peace in the nightmare with no end. Other friends skilled in alternative healing made me tinctures to take. I remember one in particular. It had a label on it which said it was for me and I was to finish it all and then ask for more when the bottle was done. I held on to this little bottle and its label, anything to have some hope. Nova fed me manuka honey and aloe vera, juiced all sorts of carefully researched fruit and veg and added oat tincture to my list of remedies. Some of these I really detested but nothing compares to the nettle soup which came later in the illness! A very dear friend and the woman who had taken me half way through a course in Shamanic practice before I fell ill performed her ceremonies for me and as usual, I held on. I wonder sometimes if this bombardment of healing had something to do with the completeness of my recovery?

On the 5th April I had a psychiatric review and they pushed for my CT scan to be hurried. On the 6th the psychiatric team decided my symptoms were not within their range, they thought there was a physical cause. I was too far gone to know this but at last the doctors could see I wasn’t just going mad. My CT scan was on the 13th and the results came back normal. I only have a vague recollection of going for the CT scan. I remember being in the hospital and speaking to the nurse but Nova tells me that by this point I couldn’t even tell the nurse my own name.

From the onset Nova had been requesting a referral to Neurology and the psychiatrist finally agreed. Nova was then told the referral was not being treated with any urgency and would be possibly ten weeks. TEN WEEKS. I had already survived  weeks in unimaginable torment and I can only imagine what my family had been going through. Another ten weeks of this? Nova made the decision to go private and on 26th April I saw the consultant neurologist at Fernbrae hospital in Dundee.

During the weeks of April all the symptoms I have previously described continued. One that I haven’t described in much detail so far is that of the compulsions. I have talked about how these would be thoughts that would come into my head and I would be compelled to act on them with no rational thought at all. I have several memories of the compulsions, some make me laugh to think of now while others were so traumatic I still find it hard to talk about them.

One compulsive episode that I can now laugh about is the one we call ‘tea and fags’. With this one I had a cup of tea and a cigarette and in a rush of heightened sensation I realised how damn good that tea was and how perfectly the cigarette went with it. I wanted more, I was compelled to have more. I think at one point I had three or four cigarettes in my hand and had drunk my tea like a madwoman and moved on to Nova’s. It went on like this for ages, I was crazed with tea and fags. Eventually Nova had to hide the tobacco as I just wasn’t going to stop.

Another faintly amusing one was the compulsion to throw myself head first into the cat litter tray. Thank the actual lord there was nothing horrendous in it at that particular moment but can you imagine how fragment-me felt?

I also had a compulsion on seeing a yellow and black sticker which we had on our fridge. Suddenly my brain registered yellow and black as signalling danger and, yelling ‘danger, danger’, I hurtled through the living room and flung myself against the wall. I didn’t hurt myself too badly but had a minor artex injury, worse was to come.

This is the memory I find deeply traumatic but I am going to share it with you. I was coming out of the bedroom upstairs and as I stepped out of the door a compulsion rushed into my head. I saw the bannister which runs along the small landing we have at the top of the stairs, the stairs spiral down to the ground floor and there is quite a drop from the landing to the floor below. In a split second my compulsion said ‘I have to go over that’ and in a truly terrifying rush of movement and spinning, fragmented, splintered images in my mind I was over it and falling. It was like being in a tornado, a twister. I felt like I was being spun and thrown round and round. I hit the wall just before I hit the ground. I lay, winded, as Nova came rushing through to see what the noise had been. My whole body hurt with a heavy, dead sort of pain but I could not say what had happened. Nova thought I had slipped on the stairs and fallen down, step by step. She didn’t know until months later, when I was well again, that I had actually thrown myself. I sat up and Nova cleaned up the *artex gouges from my arms and legs. I carried on as before.

At the beginning of May things escalated to a new level. Desperate, Nova called out of hours. The record of the call states:

‘Ongoing viral symptoms for last 7 weeks, advised symptoms psychiatric. Caller (Nova) thinks symptoms neurological. Due for MRI and EG scan next week. Seen recently by private dr. Dr advised patient should have previously been tested for meningitis or encephalitis. Hysterical today. Saying things like ‘I don’t exist’ and ‘I don’t understand’ over and over. Caller states at wits end’.

This was when Nova made the dictophone recording on me. The hysterical screaming and repetitive chanting had been going on for three days without a break.

I was finally admitted to Ninewells on the 3rd May and was soon to reach my turning point.

* The artex in the house is now almost completely gone!! Nice smooth plaster is much better 🙂

Holding on

Are you still with me?

It’s not a lot of fun is it?!

In previous posts I have spoken of how I held on to many things. I’ve talked about fragment-me and the fight I put up from deep within the illness. In this post I am going to talk some more about how I held on. I am sure, now, that fragment-me is the reason I remember so much because that little part just would not let go and succumb fully to the assault on my brain.

There are lots of memories of different times I tried to hold on, sometimes I only managed this for a moment or two and other times a bit longer and often it was different people who inspired the different ways I clung to reality.

In the first few weeks I spent many many days with Nova’s mum, either at her house or with her at ours. The days would start, sometimes with a hysterical crying session as I talked about in the last post, and then there would be a battle to get me to eat something for breakfast. Nova tried all sorts of combinations of tasty things to tempt me to eat but the ones I remember being successful were porridge and toasted nuts with honey. Some days I was so bad that Nova would have to just bundle me in the car, still in my jammies and dressing gown with wild bed-hair and drop me at her mum’s like that, fragment-me felt ashamed of being in that state in public. Other times I would try to get myself ready. I remember often getting into the shower and after a few minutes something similar to ‘world stops’ would happen. A great, big barrier would descend on my mind and I would completely forget what I was supposed to do. I couldn’t remember how to shower. Once I got in the shower fully clothed and at other times Nova had to shower me herself. So humiliating. Half-washed I would go to dry my hair. A few minutes of success followed by the barrier and downstairs I would come, a few strands of dry hair and the rest a tangled, wet nest. Fragment-me was trying so hard but couldn’t compete with the barrier.

Many days went like this and off we would go to Nova’s mum’s house where I would usually head straight upstairs to the bed that was mine for those horrendous weeks. I would lie there, jarring, for hours until fragment-me would have a burst of determination and I would push myself to get up and sometimes ask for something to eat or have a cigarette. Hours of bargain hunt, or so it felt, and staring vacantly at the TV waiting for Nova to come and get me. Nova’s mum played a big part in the early stages. She took me into her home day after day and saw a lot of my worst episodes. She researched the symptoms to try and find an answer as to what could possibly be happening to me and joined with Nova in the fight for answers. She also witnessed one of the worst of my seizures and some of my most horrible behaviour.

Once I came up with a formula. On this occasion my brain had begun to do the splintering and dissolving and I had somehow managed to hold on. I had stopped it, gained control. Frantically I wrote down what I had done. My writing was feathery and shaky, like a very old lady’s writing. What I wrote is this –

‘Think of situation over last few weeks – Novs, Kai, Mum, Lin, Natalie, Vivi, Lucie, Carol – right up to feeling well and then losing and again going to drag into hell forever, can’t stop. Was the worst thing for all and my doing. Then have to think of the best thing without letting mind wander. Back to work, focus on best bits of life and back to normal life’.

My heart goes out to fragment-me because this little formula, which I really believed would work each time, only worked once. But still I held on.

Once a friend came round with her kids. I was in my bed and Nova and she were outside. I went to join them and one of the kids came and asked if she could have the TV on, the Disney channel. ‘I’ll do it’ said fragment-me, determined that I could carry out the simple task of putting on the TV and finding the channel she wanted. I got as far as putting on the TV and then my brain dissolved. It was literally a feeling of dissolving, my thoughts would melt into liquid and I could go no further. I handed her the remote control and went back to bed, defeated and ashamed.

On another occasion my dad and step-mum, Gill, came to see me. They took me out and wanted to find the local garden centre to go for lunch in the café. Fragment-me tried so hard to appear normal for them, I didn’t want to hurt people and so often, through the haze, I could see the hurt and worry in my family’s eyes and it broke my heart completely. That’s what I meant in my little formula when I wrote ‘was the worst thing for all and my doing’. I was doing this to the people I loved, hurting them and I couldn’t make it better. Dad and Gill were relying on me to direct them and, predictably, we went on a slightly alternative route! We made it eventually and as we wandered through the garden centre some neighbours of mine approached. My heart sank, I was going to have to try to appear normal. Generally my approach to these types of situations was to stay quiet and smile. That is what they must have seen but inside I was grappling with the dissolving, holding on and holding on with all my might.

I held on to people too. During this terrible time in our lives the most amazing devotion and support came our way from our friends and family. Friends rallied, they did our shopping, looked after the dogs, scooped up K at difficult times to keep his life as normal as possible, spent hours and hours with me and stood beside Nova on this journey. As I already said, Nova’s mum, Nova and my mum did the bulk of ‘watching’ me but my dad and Gill, my brother and sister in law, Jamie also helped whenever they could. These people and all of our friends who helped in the background during the ten weeks at home where also what I held on to. Most of all I held on to Nova, she was the rock in the storm.

I mentioned the trip to Ninewells A&E before, when I had a ‘world stops’ episode in the back of the ambulance. Nova had called the ambulance because I had had some sort of seizure and my face had contorted in a way that could not have been within my control. The paramedics found I had a raised temperature and I was taken to Ninewells, Nova followed in the car. We arrived at the hospital before she did and I was put in the waiting room. At some point I decided to take off. It was a compulsion and I didn’t know where or why I was going. I wandered off into the hospital and found myself in a waiting area somewhere else, but this department was closed and in darkness. I lay down on the waiting room chairs and after about ten minutes set back off on my travels. I remember coming round a corner and at the end of the corridor I saw Nova. My heart sang, I knew then that I was safe and I ran into her arms. That hospital visit didn’t go well. I had a huge electrical current seizure but they couldn’t see it. They felt it was psychiatric and I had enough support in place. We left and on the way home I told Nova I was sure someone was doing voodoo on me or that I was possessed by an evil spirit. I needed someone to stop the voodoo and get rid of the spirit as soon as possible.

Please make it stop

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.


Seizures, the world stops and the first great escape

My last post detailed the first visit to Stratheden Hospital on the 28th March which ended in me being released into Nova’s care. The story continues that day with me acting on a horrendous compulsion and being rushed back to the hospital. That evening Nova and I were sitting outside in the garden when suddenly I held a lit cigarette to the skin of my hand for what felt like several minutes, it was probably only seconds. It did the damage though and as usual the action was completely separate from any logical thought. I could not explain why I had done it and Nova was justifiably freaked out. After a lengthy debate she persuaded me to go back to Stratheden and off we went in the car again. Once there I remember being in a room with no windows and having, yet another, series of tests performed on me. I really thought this was it. I was going to be sectioned, my worst nightmare come true and I would lose everything. Fragment-me knew how this must look but I had no power to describe what had come over me. I remember begging and begging them not to section me, not to make me stay there and then the immense relief when I realised that once again I had escaped the devastation of a section. Somehow I must have agreed to come back the next day and stay for a 72 hour assessment.

The next day came and we set off for the hospital. It was on this journey that the electrical current seizure got worse, I hadn’t thought it could, but it did. Now not only my whole body was jarring but the whole world around me was vibrating and fragmenting. A bit like the earlier experience when the rain fragmented for a second or two. My teeth were clenched and my body was rigid. I couldn’t speak for the sheer effort of surviving the sensation. It was a bit like how I imagine it must feel to have a dentist with the biggest drill imaginable drilling straight into your brain. I couldn’t cry or scream, I was just silently rigid. It couldn’t be seen by anyone on the outside which was one of the cruellest aspects of the seizures I mainly experienced. They were so intense and I would be staring desperately at whatever doctor was treating me at the time, praying they could see, but they never did, it was exhausting.

I did have other forms of seizures which were more visible but I will get to these in future posts.

This seizure went on as we went into the hospital and I was shown into a bay with several beds. I was given the one nearest the door (big mistake!) and I lay on the bed, gripping Nova’s hand, as the seizure went on and on and on. Eventually it calmed down and I remember going with Nova to the outdoor area of the ward where several other patients were milling around smoking cigarettes.

This is when I experienced what I call the ‘world-stops’ episode which also became regular occurrences as the illness dragged on. The ‘world-stops’ went like this – in my mind I would suddenly feel, or know, that the world was about to stop. It was going to end. This was not actually a scary thought as at this time I would have welcomed it. I would hurtle towards this moment when it would end and then, instead of the world stopping, I would become suspended in time as everything continued to move around me. This is probably one of the hardest things to describe but I would end up completely motionless and silent and it truly felt as if everything had stopped. I had one of these episodes once in the back of an ambulance as I was taken to Ninewells a few days later and I honestly could not get a word out or move a muscle. The paramedic was looking at me like he thought I was taking the utter p***. But to me, the world had stopped.

Anyway, there I was, in the garden area of the psychiatric hospital suspended in time and reality. I know from talking to her after I recovered, that leaving me in this place was one of the hardest things Nova ever had to do and she stayed with me for hours that day. She tidied that garden area and chatted to other patients while I stared mindlessly in to space, a vague smile on my face as I knew the world has stopped, I knew the truth. Eventually Nova had to go and she took me back through to the bed that was to be mine.

It can’t have been more than ten minutes after she left that fragment-me kicked in. Deeply unimpressed by the fact that my bed had no covers and was simply a bare mattress and that no staff member had been to check on me or even speak to me, fragment-me knew, absolutely knew, that this was not the right place for me. As much as I was terrified I was going mad I knew something was different to the other people I saw in that ward. I decided to go home.

It was easy to get up from the bed and walk the short distance to the front door. No-one stopped me and I was jubilant. I found my way out of the hospital grounds and made for a path I knew which linked the hospital to the road home. I was so determined and I also had a plan. I knew that a friend’s house was on my route home and I would stop there for a glass of water to keep me going. I still had my mobile phone at this point and I phoned Nova to tell her I was on my way home from work. Yes, from work, as if that was a perfectly normal thing to say.

As I continued on my merry way Nova was frantically driving round the area trying to find me. She and her friend eventually tracked me down a couple of miles from the hospital. We went back to our friend’s house and I sat with a cup of tea while Nova was on the phone to the ward having a few choice words. Our friend’s little boy was there that afternoon and I remember being amazed that she seemed ok with me being around him. She was so sweet to me and I couldn’t understand why Nova looked so sad and upset. We didn’t go back to the hospital but I was given a diagnosis of ‘acute and transient psychotic disorder’ and they suggested that I may also be suffering from a conversion disorder. “A conversion disorder causes patients to suffer from neurological symptoms, such as numbness, blindness, paralysis or fits without a definable organic cause.” There were a few other attempts at diagnosis thrown my way before they finally got it right, another several weeks from this day.

Aliens, numbers and other nightmares

Around the same time as these first symptoms were developing, the compulsions, electrical current, drop attacks, brain melt and jelly swamp, I was also plagued with insomnia. For weeks I did not sleep for one minute and every night was a long drawn out nightmare filled with the constant electrical current and a jarring, rigid body. I would despair every morning when I heard the birds start to sing and the sun come through the curtains as I knew another night had passed with no rest. My skin was stretched tight over my eyes and I no longer looked like me at all.

It was during the night that I remember one of my most terrifying hallucinations as these became yet another symptom to add to the list. The hallucinations took several forms and this one involved numbers. Imagine in a film when you see a huge hi-tech computer screen on the wall and it is filled with ever changing sequences of numbers, so fast that your eyes can’t keep up, this was my number hallucination but the numbers weren’t on a screen, they were in my head. The numbers flooded my mind and I believed that somehow I had to keep up with them. If I could get a hold on the numbers I would beat this thing that had a grip on me. I really believed that and as the numbers whirred I couldn’t possibly keep up, everything spiralled out of control and I fell into a spinning whirlpool of numbers. I was screaming and screaming. The fear was immense.

As the symptoms all got worse and I got weaker night times became a battleground of a different kind. During the rare times Nova managed to get some sleep, thinking that I was also asleep, my desperation for it all to stop became stronger. Many times I found myself prowling around the house looking for ways to end it all. I tried, through my chaotic thoughts to make a plan. I knew there was medication in the bathroom, some old painkillers from a previous dental trauma and I often went there to find them. I was so ill though that I couldn’t even co-ordinate myself to open the packets let alone physically swallow the pills. I plotted getting my hands on the car keys and escaping to a place where I could jump from a height. Yet another impossibility, there was just no way. And so I paced and plotted and screamed and jarred through night after long long night.

Another hallucination I recall is of my mum coming to visit me. I think at this point I must have been in the mute phase as I remember lying in complete silence as she just sat with me. She left a card and a bunch of daffodils beside me which I only noticed once she had gone. It was Easter. I thought I had died and she had come to visit my grave and lay flowers.

Then there was the incident of the aliens in the garden. One day the drains outside the house had become blocked, a fairly regular occurrence with our old Victorian drains. Instead of the usual emergency insurance call out a friend offered to come and help. She had a set of drain rods and she and Nova set to work unblocking. Evening came and darkness fell and they had to use torches to see. I decided to get out of the bed where I now spent most of my time and for some reason came through to the kitchen. I saw the lights in the garden and instantly became convinced the aliens had landed. I didn’t scream, I just shuffled back to bed feeling slightly more confused than had become normal.

In a previous post I mentioned the first referral to Stratheden for psychiatric assessment and it was during this visit that I had one of my most vivid hallucinations. I remember the assessment and the questions I was asked and I remember agreeing to stay for a period of time in the hospital so they could observe me. Almost as soon as I made this agreement I stood up and made to leave. The Doctor looked surprised as I made my way determinedly out of the consultation room saying I was leaving now. My memory is a bit vague but I know shortly after this I took a bit of a sprint out of the front door of the hospital and was off across the car park. I heard Nova and some of the nurses chasing me and as soon as Nova shouted my name I dropped like a stone to the ground. Once there, on the grass, all hell broke loose in my head. I could see into the earth and there were mad, flickering lights running from my brain deep into the ground. The lights were red and green and blue and flashed like electricity. There was sound too, beeping and crackling, also somehow linked to electricity. It was the most intense feeling and was as if I was being pulled downwards. It wasn’t necessarily unpleasant but it was beyond bizarre. As I lay there a patient from the hospital walked past me and said sympathetically, ‘is it the meds love?’ while another had to be guided away from me as he was becoming distressed to see me on the ground.

I didn’t stay at Stratheden that day, they released me into Nova’s care and there was no confirmed diagnosis. My next trip to Stratheden was just as eventful and brought the first of my great escapes.

Drop attacks and a visit to the pigs

In the two weeks following the onset of the illness, as I have already described, I was experiencing a range of terrifying symptoms and only had rare moments of normality. A symptom that developed in this time was what Nova and I came to call, affectionately, drop attacks.

The drop attacks took a number of different forms. The one I experienced most often was the version where I would be doing something, walking somewhere, and suddenly I would drop to my knees or end up sitting on the ground. These must have been so bizarre to observe. A particular memory I have is of a day when my amazing brother had come over from Edinburgh to look after me. We were out for a walk in the woods opposite our house and, what felt like every two minutes, I would do the knee-drop and end up sitting on the forest floor. What I remember about these episodes was that it was linked to the electrical current which was now constantly running through me, my whole body felt like it was on edge and jarring literally ALL THE TIME, it was actually unbearable, there was no rest from it. I would get to a point where I could take it no more and the thought would come to me that if I just collapsed it would stop. It was almost like a full stop to the electrical current’s sentence. If I fell down it would stop…and so that’s what I did, except when I hit the ground it wouldn’t stop, it would be just the same, the only difference being that the fragment-me would know deep down I must look like a complete basket case. The torment of knowing you must look insane and not being able to stop it. The knee-drop-attacks happened many many many times.

Another form of drop attack was similar but the sensation was different. With this one I would get to the point of screaming with the electrical current and all of a sudden I would feel like I was falling into an abyss. It was a dark, swirling feeling, I imagine something like when Harry Potter apparates. I would fall, feeling like I would never stop and it would all be over, a blissful feeling and one I craved, until I hit the ground and then, boom, I would just be on the ground. Nothing stopped it, nothing, and the disappointment was excruciating. A memory of one of these attacks again involves my brother. It was in the early days and he was coming over, I think for the first time since I fell ill. He must have been so worried and just before he arrived I had a swirly drop attack. He came through the door to find me lying on the ground, I think I remember Nova saying, ‘this is what happens’. What a horrendous sight it must have been for him and all I remember feeling is again, what must I look like, how can I convince people I am ok when this shit keeps happening. That evening I remember sitting on the sofa beside my brother and him saying over and over to me that I couldn’t be going mad, he’d only seen me recently and I’d been fine. So many people believed in me and fought for me but this one memory is strong because a cord of light connected me to his belief and I held on to it for all I was worth, it was actually a cord of light that I could see. There were so many things I held on to.

One last type of drop attack I kept largely hidden. This kind must have been some sort of black out because I would be in the bathroom or bedroom, on my own, when I would suddenly wake and find myself on the floor. One of these happened as I tried to get out of the bath one evening and the thud I caused as I hit the ground brought Nova rushing up the stairs. I was completely unable to articulate what had happened.

The visit to the pigs happened around the time of the first visit to Stratheden. Nova decided to drive back by the back road to our house and along that road where a family of pigs which we had often gone to see. We stopped and got out of the car to see them and the worst series of drop attacks yet began. I was falling to the ground over and over again. On this occasion I was driven by a deep desire to be close to the earth, I don’t know why, it was a compulsion. Over and over I fell until Nova managed to get me back into the car. The compulsion escalated to a dangerous level as my desire to be near the ground drove me to open the car door and try to throw myself out. Again, over and over. Somehow Nova got me home but she was hugely stressed, fragment-me could see that. Once we got home I sat in the garden, after a few more drop attacks, and smoked a cigarette while Nova was on the phone to a friend. All of a sudden I came back, I CAME BACK. I screamed to Nova to come over, that I was back and in a rambling, excited speech I told her that I knew my name and where I lived, I was ok.

That short time of sanity lasted for a little while and Nova and I sat and talked and even had a laugh about some of the bonkers things I had been doing. I had a stone that someone had given me which had the word ‘faith’ painted on to it. I held tight to the stone, believing it would help me hold my brain together. Nova took a phone call and was telling the caller about my ‘ return’. All of a sudden everything started to splinter again, only this time I was sinking as well. I was sinking in to a clear, jelly swamp and I was deep inside it. I could see Nova looking at me with terror on her face as she realised what was happening and I could see her crying. I tried to speak, to say ‘it’s ok, I’m ok’ but the words couldn’t get through the swamp. This was the beginning of the mute phase which lasted for at least 2 weeks.