I was first diagnosed with schizoaffective disorder in 1986, though it took a little while to decide what the diagnosis was. This is often the case with schizoaffective disorder which at times looks like schizophrenia and at other times bi-polar disorder. It was eventually established that in my case bi-polar seemed to be the stronger thread. This was established both through my symptoms and through the medication I responded to.
After a move of house three years ago my psychotic symptoms became worse and now I take a small dose of antipsychotic medication as well as the mix of anti-depressants and mood stabilisers that I have taken for twenty years.
I was under a lot of stress before I first became ill. A boyfriend of several years, who I was very attached to, had died in a motorbike accident, I had started a teaching career which was stressful for me and my personal relationships had got complicated. In the weeks leading up to the first episode I had come home from overseas with nowhere to live, resigned from teaching, taken up a new job, been asked to leave where I was staying, rented a house alone and got involved in a couple of casual affairs. Although I had never smoked much cannabis previously, I started smoking regularly at this time.
I also overspent, buying $500 worth of records in one day. For someone who hates making mistakes and is very careful with money this provoked enormous embarrassment and shame when I recovered.
In those days there were no CATT teams, so my family and friends had to find their way through my first episode, shocked, afraid and unguided. Fortunately one friend had had some relatives with mental illness and took me to an understanding GP where I was persuaded to admit myself to a Psych unit, in a major hospital, voluntarily.
I had a short hospitalisation of two weeks in 1985 and a much longer one in 1986 where I had a long course of ECT. Because of my vulnerability, my family was consulted after I had agreed to it. They agonised about it before giving consent and I agonised about it more, after the event when my sceptical mind started thinking again. In the long term, I think it worked well for me. I was very frightened, isolated and shut down whilst in the hospital and always co-operative with the hospital staff. I did not like my psychiatrist however, who was convinced I was much sicker than I thought and was certain that my diagnosis should be schizophrenia. This freaked my family and myself out further. The diagnosis was not correct but he was right that I was much sicker than I imagined.
I took the most part of a year off from my teaching job but found that being home alone was too depressing and quite unbearable for me. I was eager to resume my former life and did not want to stay with my parents. I filled my time with some volunteer work and returned to teaching the following year. The stimulation of teaching kept me ‘high’ but not psychotic. This was how my friends experienced me as normal. I had been on the manic side all my life. Over time it became clear that I did not have a ‘well’ or neutral position – I was either manic or I was depressed.
During this time I was referred to a psychiatrist in the mental health system. He was the first person who understood me and I trusted him as far as I was able and felt safe with him. Still, learning to feel safe telling the truth about my thoughts and actions was going to take a very long time.
The clinic offered me a number of groups as well. One was a relaxation group that offered a little social interaction and introduced me to Feldenkreis Awareness Through Movement lessons. The Feldenkreis exercises have stayed with me through the last twenty years and are a most effective way of dealing with the extreme imbalances and tensions in my body. I am a person who never relaxes when alone and the Feldenkreis, yoga and Les Mills Body Balance have become a regular part of my self-management.
Around this time I became friends with some consumers who were really at odds with the mental health system and who worked hard to make changes. I felt quite different because I experienced the mental health system more as a saviour than something to fight against. Weekly therapy with a psychiatrist has been my emotional focus over twenty odd years. I have been dependent on my psychiatrist all that time and I have been given a lot of extra support and attention to my needs. As I grow towards independence I have become more accepting of my psychiatrist as a person who makes mistakes, despite his best intentions and of myself as a consumer who can’t always communicate my needs.
My second hospitalisation had been such an horrific experience, I was determined to never go back there. This made me very cooperative and compliant with the medication regime that was gradually developed for me. Lithium didn’t do a lot for me by itself, so carbamazepine another mood stabiliser was added as well as an SSRI antidepressant and temazepam for sleeping and reducing anxiety. Recently I have found small doses of an anti-psychotic to suit me better than the temazepam.
I did stay out of hospital with the assistance of a family who cared and could act as a half-way house when the going got too tough. I was living away from home when I became ill and continued to do so even though at times it put too much burden on my friendships some which lasted and some which didn’t.
During the next years I put a lot of energy into finding out as much about the illness as I could, starting to identify triggers, early warning signs and in general ways to take the edge off my mania. An example of an early warning sign is that in the early days, I became obsessed with colours when I was manic. My sister came to know that I was unwell whenever she found me wearing a certain very colourful scarf..
Recognising my first delusion and being prepared to talk about it to my psychiatrist was a major turning point in my recovery. The delusion was about becoming a star, and there was another one where people from various parts of my past were joining together to look out for me. Both of these had something to do with being ‘special’. I discovered that my need to imagine stardom for myself came as a way of avoiding the bottom-line feelings that I was really hopeless and worthless. After a while, I learned to focus on the manic thought and work out the underlying depressed feeling that I was trying to avoid. This could bring my bring my mood down, or flip it from mania to depression.
Some signs of mania were persistent over the years, such as not sleeping and overspending. I used to get around the overspending by going to the $2 shop whenever I had the urge to spend and giving myself permission to buy what I wanted. Often the indicators changed over time. I was attracted to sexual encounters to start with but the need for them dropped away. Other manic indicators might be singing out loud, being constipated, telling people that I am in terrific health (usually the day before I broke down), being overly generous and eager to please, taking on too many activities, feeling overwhelmed by what I have to do, being forgetful, having lots of ideas and creativity. I find that despite my attention to early warning signs, my identification of mania usually comes after the event.
As preventative measures I avoid caffeine and take alcohol with care. I keep a regular routine, lead a quiet life, exercise and go to bed by 11pm.
My history is that I am more often manic than depressed. Depression is easier to identify than mania with its thoughts of being worthless and hopeless. With depression I identify foggy thinking, crying, and unstoppable crying (usually when I am angry). Loneliness has been a longstanding burden. Living alone although good in one way was very difficult in others, especially during the years when I was socially isolated When depressed I can’t’ cook at all and to avoid the danger of not eating proper meals I began to buy frozen boxes from the supermarket. It’s hard to motivate myself when I’m depressed and my body feels very heavy. I’m likely to be very critical of my appearance and weight. The best thing I ever did for my depression was to get a cat, to distract me, to talk to, to cuddle (and to scratch my furniture!)
A major trigger for a mood swing for me is the absence of my psychiatrist. I often feel angry when he goes away despite my rational acceptance of it. Other triggers are arriving home to an empty house, family friction, being yelled at or having anger directed towards me, being judged or criticised, worries about money, work stress, crises, disruptions to my daily routine, moving house or even receiving a letter written in a punitive style. I am extremely sensitive and even a small blow can affect me quite deeply. I work to get over these instances more and more quickly. I can find myself plummeted into depression if I spend too much time alone or make a big mistake.
Paranoia has been by far the most difficult delusion to understand and acknowledge. There is a general paranoia that underlies my thinking and view of the world as well as more outstanding instances that provoke the more ‘out of reality’ response.
Severe stress and body tension is the precursor of the paranoid response. Then I usually get a fright or shock of some description. This may be being put under pressure or noticing that something out of the ordinary has happened. Things start to move very quickly. It‘s impossible to be cool and logical in the throes of panic. For example at work I might feel that I am being watched and that several people are planning together about me.
Another factor is the circumstantial nature of things – where I link two events together that have happened side by side, as if they had some purposeful or meaningful relationship – fitting them into the delusion.
Then I notice that every slightly odd event that has happened within memory gets linked together as if they all relate to the single current happening. This whirlwind of frightening thoughts gets bigger and bigger until it is all pervasive.
The more general paranoia involves my relationships with people. I am often quick to notice fault in others and less quick to notice I have those same faults with in myself. It is easy to dwell on someone else’s failings, be judgemental and lose sight of the big picture.
I remind myself that people are a mix of qualities these days. It has been rewarding to develop a small number of intimate friends who I love and who give me great pleasure.
Everyday communication can be quite stressful still, for example handling and moving through conflict and accepting my mistakes. My anxiety often interferes with my ability to speak up for myself and negotiate effectively.
It has taken me a long time to really believe that I am okay; that my achievements don’t make me good and my mistakes don’t make me bad. My goal is to keep moving towards more independence and self-management; a little step forward, a hiccough, a fall, get up and move on. I expect it will always be this way and that this, neither my soaring fantasies nor my prolonged depression, is the process of life.