This is probably the last post that will follow any sort of logical time frame. The first week and a half of the illness really kicking in saw me descend rapidly but there were still many lucid moments. After this week the madness began in earnest and although I remember many, many things I am not always confident of their exact order. This post is a description of the last week in which there was a tangible part of me left before I became a tiny shard of myself, locked deep inside the illness.
Following on from my previous post, I went back to work on Tuesday but found myself in the same state of panic as nothing was making sense. It was the most terrifying feeling, I was intelligent wasn’t I? I’d done this job for years….what was going on? I went home that lunchtime and by the time Nova came home in the evening things had got significantly worse. The record of my call to NHS24 that evening states I had rigor for an hour (A rigor is an episode of shaking or exaggerated shivering which can occur with a high fever. It is an extreme reflex response which occurs for a variety of reasons), was feeling dizzy and lightheaded when standing and was losing my balance. I can’t describe how scared I was, lying on that sofa shaking uncontrollably, completely unable to stop myself. We went to an out of hours appointment and they diagnosed a urine infection. The doctor assured me this would explain the sense of confusion and disorientation I had been feeling as well as the crazy shaking. Bathed in relief we went home armed with anti-biotics. I wasn’t going mad, thank god.
The next couple of days saw no improvement and by Thursday morning I was being sick, shaking again and completely hysterical, it was hard to breathe. Nova rushed me to A&E and by the time we arrived I could hardly stand. A nurse flew in with a wheelchair and I collapsed into it. By some cruel twist of fate however, and one that was to reoccur virtually every time I saw a medical professional, I had returned to normal by the time the doctor saw me. They did all sorts of checks, including a series of questions which I imagine was to assess my mental state. I passed all with flying colours. Sent home again with a confirmed diagnosis of a urine infection despite Nova saying she was concerned about meningoencephalitis (I wish they’d listened to her).
Friday arrived and with it, the original GP appointment I’d made the week before. I decided to go and wrote down a list of all my symptoms to take with me. It reads as follows – abdominal pain, nausea, extreme tiredness, lightheaded, dizzy, balance is off, disorientated mentally, out of body, panicky, uncontrollable shaking, total loss of appetite, tightness across chest, whole body feels rigid. Quite a list. The GP told me the urine test results had come back clear and advised me to stop taking the antibiotics.
At this point I was clinging desperately to my sanity. I could feel my brain dissolving and with it went reality. I begged the GP for something to help with how scared I felt and he prescribed respiredone. Desperate to hang on I went back to work, that didn’t last long and I found myself at home once again.
The next few days saw me almost normal again and we even went out to a friends for the evening. I decided to go back to work on Monday but by lunchtime my colleagues made me go home. By this stage things had changed in my brain. Words came into my ears or eyes, if I was reading, but the normal process by which meaning is attached to those words, had stopped functioning. Words were just words, they were empty and hard, they meant nothing. For me, an avid reader and writer, this was torture.
I went home and over that afternoon the dissolving turned to splintering. I could actually feel my brain break apart in pieces that didn’t fit together any more. Logical thought had gone and was replaced by the compulsions which drove me for the next 5 months. The compulsions were not driven by anything, they would simply come into my head and I would have to act on them, I had no control. When I had my rare moments of sanity the memory of these actions was horrendous. At home I paced and paced and along with the first compulsion came the beginnings of the electric shocks. I now know that these were probably seizures but at the time they felt like someone constantly sending an electrical current through my body. It didn’t hurt like a burn hurts or a cut, it hurt like it was such a wrong sensation. For weeks and weeks I would cry to Nova, ‘please make it stop, it hurts’ and she would try to find out what hurt. I couldn’t tell her, all I could say was ‘everything’. And I wasn’t kidding. If only I could have said that it felt like electrical currents, maybe that would have helped the doctors but my unspecific, ‘it hurts’, was pretty unhelpful, it was all I could manage.
As I paced, the poor cats watched me in surprise. Suddenly my first compulsion came over me. I had to make it stop. I want you to understand that this compulsion had nothing at all to do with emotional pain or any logical thought, it was as if something outside me was driving me. I made an attempt to harm myself. When Nova got home that night I told her, in a completely matter of fact way, what I had done. I showed no emotion and I felt no emotion. Through my melting brain haze I watched her total distress, I knew I had done something bad and she was suffering, but I could not connect with it at all.
From this point on the compulsions got more and more bizarre, the electrical current was almost constant and I deteriorated into the nightmare. I could no longer be left alone. Between them, my mum, Nova’s mum and Nova watched me 24 hours a day.