Notes on being psychotic & proud

It’s not embarrassing to talk about psychosis. Thirty years ago people thought it was embarrassing to talk about cancer, now there are adverts on the telly and people can’t shut up about it. You’d think psychosis was inherently tumultuous but it’s often very tedious, predictable even.

This page was meant to be an in-depth look at my psychosis but I ended up going off on all sorts of tangents. For now, it gives a brief introduction to my symptoms, my medication. my relations with The Staff, my education and brilliant career, my adventures in homelessness and my heretical views on mental health and work (if you want to go straight to the latter scroll down to Burn the Witch!).

The following assumes people don’t have a high degree of knowledge about mental illness.

Note that I accept the diagnosis Schizoaffective Disorder, but I understand that a lot of people have problems with various psychiatric labels especially the term Personality Disorder. There are some links below.

Where did they let him out from?

I talk to myself. A lot. Often in public. In the past, I have suffered serious discrimination in housing because of this and some violence. The security types in art galleries and supermarkets play close attention to me. Often it’s better not to leave the flat. However, I would like to stress the situation is not entirely without humor. Several Summers back I passed filmmaker and bon vivant Michael Winner walking near Buckingham Palace. As I chatted away to myself he turned to his companion and said, “Where did they let him out from?”.  Odd maybe, but I’m quite proud of this. I had a similar encounter in Chelsea with John Simpson, world affairs editor for the BBC. I was strolling along, muttering away, when he gave me a startled look. Imagine the man who liberated Kabul being intimidated by a mental patient on the Kings Road.

My symptoms are fairly mundane: seeing things that are not there, believing people are listening to my thoughts and trying to control my thoughts using a force called sonic and a lack of motivation that is so profound that you could set the building on fire and I would stay in bed. Standard fare for someone with a diagnosis of Schizoaffective Disorder. Add to that the history of mania and depression and you can see why I have one or two issues.

I became very ill and quit paid work in Summer 2002, but was well enough to stop smoking in late 2003. I suffered varying degrees of illness until 2007 when things got very bad and stayed so until late 2010. Things improved a bit until 2014 and then went downhill again until earlier this year.

In January my Psychiatrist told me I was one of the most seriously ill patients being treated by the local Community Mental Health Team (CMHT). We even had a discussion as to whether I should give-up my council flat and move into supported accommodation (people normally hope to move the other way). Then things improved in March and I have remained relatively stable since, but utterly mental by most peoples standards.

Note that on the same day that my Psychiatrist told me about the seriousness of my illness, I had my assessment for the move from Disability Living Allowance (DLA) to Personal Independence Payment (PIP). The Atos assessor said I seemed fine apart from not making eye contact (you don’t if you think the government is trying to control your thoughts using a force called sonic) and my benefits were cut by just under £50 per week.

What I think about all this differs from day-to-day. Sometimes I feel upset about wasted years and not reaching my full potential. But then the anarchist in me believes our society is largely built on the idea that most people won’t be allowed to achieve what they might.

It’s said that psychosis is a cruel disease, but then lots of diseases are cruel. What’s frequently noted with mental illness is that peoples’ reaction to it is worse than the illness itself.

It often appears there are more explanations for psychosis than there are people who suffer from it. Debates get very heated. In my case family history plays a part. My sister has Bipolar Disorder and I had two mad great aunts (it seems madness, like beauty and intelligence, can skip a generation). The one mad great aunt was always in and out of Burntwood, the local old-style mental asylum. One time she painted the cat blue. No, not like Picasso, she literally painted it blue. Cornered the poor thing in the garden shed and went at it with some Dulux.

I worry about insight. My psychiatrist says, for the most part, I show good insight, but I worry about The Sonic Phenomenon. Sonic is my interpretation of the classic first-rank symptom of Schizophrenia, thought insertion. I believe people are trying to insert sonic into my head to control my thoughts. I can be wrapped up in this for days at a time, sometimes weeks to a degree. My insight is not always so great. This, combined with extreme apathy/lack of motivation, is what keeps me in a state of otherness and stops me engaging with the world.

Mind you, having said all that, I have been involved in the voluntary sector for over twenty years. I have met loads of people who are not engaged with the world and have clearly never had a day’s insight in their life. Hasn’t done them any harm.

Please stay on this page for the time being, but if you get the opportunity, a recent article in The Conversation giving an overview of some new thinking about schizophrenia and psychosis is worth reading. My Psychiatrist is interested in the role of inflammatory illness in mental illness. There was a recent article in the Telegraph about inflammatory illness and depression. I follow discussions about the relationship between peoples’ lives, trauma and mental illness. There’s an article on trauma informed care in The Independent by Dr Jay Watts (Shrink at Large on Twitter).

Has he taken his medication?

At one point I was doped up to the eyeballs and shuffling around like an extra in a zombie film. I faced the usual dilemma, what’s worse the illness or the treatment?

Things came to a head in December 2016 when I was admitted to hospital with a “kidney injury”. It showed up through a routine blood test and my fast-acting GP got me straight into the Chelsea and Westminster. I was there over Christmas and released on New Years Day 2017. It wasn’t all bad. In the bed opposite to me was the Nobel winning writer V S Naipaul. The nurses sang Christmas carols. Even the guy dying in the bed next to me got into the spirit.

The cause of the kidney injury was never fully established and my regular test results now show normal functioning. It was thought the antipsychotic Clozapine may have played a role.

Clozapine did give me some benefits, especially with my severe lack of motivation and apathy, a negative symptom of Schizophrenia. It also helped dampen down some of the textbook psychotic symptoms like thought broadcast – the belief that people are listening to my thoughts. But the benefits weren’t that great. I wasn’t, for instance, anywhere near improved to the point where I could start thinking about paid work. I still talked to myself like it was the height of fashion.

Added to that, while on Clozapine I had high blood pressure for the first time in my life and a cholesterol level normally only seen in people who do nothing all day but eat bacon sandwiches.

And then I kept falling over. I fell over twice in the street and ended up in A&E.

My Psychiatrist had already concluded that I have “treatment resistant psychosis” and that antipsychotics weren’t really helping that much. Apart from the kidney injury, I also put on six stone in weight while on antipsychotics and developed Type 2 Diabetes. I have since lost a lot of weight and the Diabetes is described as “well controlled”.

While I was lying in the hospital I thought, sod this, I’m going to try and go without this medication. Since January I’ve ambled along, psychotic and proud, doing the best I can under challenging circumstances.

Then a couple of months back a regular Electrocardiogram (ECG) showed up a heart arrhythmia, Long QT Syndrome, probably caused by taking lithium. Once the results had been double-checked by a cardiologist it was thought that there was only a slight problem, but I thought sod this, I’m stopping lithium. My psychiatrist wasn’t keen for me to stop taking lithium, but I wasn’t massively keen on Sudden Death Syndrome. A follow-up ECG shows my results as now fine.

I have been off lithium for several weeks now. I haven’t had any problems yet, but any day my mood could go off a cliff or I could start believing I’m the next George Orwell again (see below).

You’re probably thinking these drugs are a nightmare. They are, but I have benefited from some. Sodium Valproate has helped with my mood problems. I have what is referred to as rapid cycling, sometimes ultra-rapid cycling or even ultra-ultra rapid cycling. My moods can change dramatically from hour-to-hour, sometimes minute-to-minute. Another reason why I find it so difficult to get anything done and prefer not to leave the house. The anti-depressant Sertraline helps with the sadness aspect of depression and may help keep suicidal thoughts at bay. I have regular intrusive suicidal thoughts, but the main time I think about suicide is when I think about what would happen if I were found “fit-for-work” by the Department for Work and Pensions (DWP) or lost my PIP award.

Now here’s a thing, I have a very limited history with street drugs. I smoked cannabis on a few dozen occasions until the age of 19 when I went into an avid reading phase. I found that I couldn’t read while stoned so I quit. After that, virtually nothing. At times I have been surrounded by people taking drugs: heroin addicts in squats, ecstasy freaks on building sites, cocaine snorters while working in restaurants. I just haven’t got into it. I think it’s because I’m so neophobic. I’m 52 and I have never tried sushi. I bought my first ever pair of sunglasses in May this year and apart from trying them on in M&S I can’t bring myself to wear them.

I have stopped drinking alcohol. When I worked as a waiter I used to have to drink a bottle of wine after every shift just to calm down. It seemed like a lot at the time, but many women now drink more during an episode of The Great British Bake Off.

When it comes to using substances I should point out that I may have been the world’s most enthusiastic chain-smoker.

Update 20 October 2017: I may sound very negative about the antipsychotic clozapine. Many people benefit from this drug and other antipsychotics. There was someone on one of the benefits advice groups on Facebook saying clozapine worked miracles for her boyfriend. He was a completely changed person and had no side-effects. Experiences vary hugely.

The Staff

When I started my career as a mental patient an old-time schizophrenic took me aside and gave me some sage advice. Son, he said, if you think you’ll be in this game for the long-haul, do your best to get on with The Staff.

I used to make jokes about when you become mental they give you a budget and some staff to manage, but it’s not so far from the truth. The problem is that at the time that you most need help your human resources skills may not be at their best. The other issue is that they’re now taking our budgets and staff away from us.

The Staff currently comprise a Consultant Psychiatrist, a Community Psychiatric Nurse (CPN) and an occasional Social Worker (he helps out with the benefit claims and goes on about taking physical exercise). At times The Staff has also included various Support Workers and Therapy Types. I have a weekly carer come in and helps with cleaning but that may about to be canceled.

Christ, you’ll be thinking, this guy is high maintenance. I should stress it’s not the amount of time I spend with The Staff that’s important, but the regularity of contact – especially when things start to unravel.

I get on very well with The Staff and see myself as very lucky. I have been seeing my Consultant for more than 10 years. However, things haven’t always been so grand.

In 2002 when I entered my current phase of illness I was packed off to a Day Hospital in North London (I was in local authority temporary accommodation after being made homeless). I said to my Named Nurse that I wasn’t sure I was benefiting from the Day Hospital and that I thought I needed counseling (it was just a thought experiment really).

I was a witness in a criminal investigation and ended up having to be moved out of the area I had been living in due to death threats (I know that receiving death threats is more or less compulsory on social media now but things really did get out of hand). My Named Nurse more or less called me an ungrateful bastard, got me discharged from the Day Hospital and did her best to get me excluded from all mental health services. It was at this point that I began to question whether every mental health nurse is an angel.

Then I met Dr. Violet Elizabeth Strangecare. Dr Strangecare was a Therapy Type based at the mental health centre I now attend. It includes a specialist treatment facility for people with Anorexia, The St Vincent Ward. The first time I met Dr. Strangecare I assumed she must be one of their patients – I’m not entirely sure what I should make of it but during the three months I saw her she repeatedly kept referring to herself putting on weight while making the other Anorexics look chubby.

I’m sure this wasn’t related to her weight issues, but she went on to say what were easily the most offensive things anyone has ever said to me. I was referred to counseling to help me deal with the fallout of being a witness in a criminal investigation, the death threats etc. Amongst other things Dr Strangecare tried to get me to admit that the woman I was a witness against was innocent. With the best will in the world, this would have been difficult. She’d pleaded guilty over a year earlier. Dr Strangecare was keen that I understand the role of listening in therapy, as she talked continually throughout the whole of our 50-minute sessions. One time, as she was developing one of her themes, I looked at her and thought you are so fucked-up. I thought maybe I should make a complaint but then thought sometimes it’s better to just walk away.

But the therapy/counseling has largely been beneficial, both in helping me come to terms with things and simply developing life skills.

A couple of the Therapy Types expressed a concern about my appearance and wanted to help me smarten up (bloody women). It’s true until very recently, I dressed like a mental patient. I managed to get into my 50s without having virtually any concern for material possessions, including clothes. For years I wandered around with just a bin liner with a few clothes in it – I’d say a bin liner full of clothes, but I wouldn’t want you thinking I was living some sort of ostentatious lifestyle. All I really cared about was having money to chain-smoke. From the late 1990s, apart from money to chain-smoke, I wanted money for an internet connected computer, but that’s as far as my consumerism went.

Wouldn’t you feel better about yourself, the Therapy Types argued, if you were wearing some nice clean clothes? I think they meant instead of my iconic, shapeless, food-stained care-in-the-community wardrobe. My Psychiatrist was keen. The CPN did a lot of smiling and nodding. So I’m now outfitted by M&S (the cheaper, poor-but-making-the-effort range) and Tesco. The Therapy Types and Psychiatrist were right, dress more smartly and you blend in and don’t get noticed, especially in art galleries. An obvious point I suppose, but to me, it was a revelation.

Apart from the wrong-uns, I’m very concerned about The Staff. My CPN is a heavy smoker. The Support Worker who came with me to my PIP assessment is a diabetic who didn’t have time for lunch and had to get by on a Mars bar and some crisps. One of the Carers who comes and does the weekly cleaning fainted out of hunger – after she’d paid for childcare and London’s punishing transport costs she didn’t have any money left to buy some food. Now my Psychiatrist says she may retire as she has two daughters with serious disabilities. This would be a great loss to the profession as she’s open to all sorts of new ideas for treatment – it has to be said, some Psychiatrists aren’t.

A badly organised camping trip

I have an impressive homelessness portfolio, including rough sleeping, living in hostels and squats/derelict buildings and four years spent in local authority temporary accommodation waiting for a council flat. The latter was in Chelsea. I refer to it was my period of genteel psychosis.

The total time spent rough sleeping adds up to eight months. Bloody amateur. I joke that it was like a badly organised camping trip, but for a variety of reasons, most peoples experiences are not so easily found humorous.

I came to be a street person as result of manic episodes. One time I convinced myself I was going to be the next George Orwell. As you may recall, in Down and Out in Paris and London he has a terrible time but he doesn’t actually sleep on the streets. I thought I’d take to the streets and write about it. The problem was I didn’t spend my days taking notes and interviewing people, instead, I stumbled around Soho entranced by the bright lights and commotion: but haven’t we all?

It’s a long time ago now and I should feel secure, but with the ever-present risk of being found “fit for work” (when I’m not) and Universal Credit heading my way, I often wonder how far I am from being street homeless again. The government wants to remove the funding for supported accommodation so my downward slide could be very rapid.

The time spent in temporary accommodation wasn’t so bad. Apart from the brief stint in North London, it was in Chelsea, close to a lot of amenities and the Victoria & Albert Museum (V&A) was only a short walk away. On a voluntary basis, I did some of my best work writing fundraising applications for small charities while classed as homeless, this included a number of large-scale lottery applications. I also did some good web design. Thing is though, I’m a single man with no dependents and for better or worse I have virtually zero status anxiety. I usually go out of my way to celebrate that I’m a lowlife. Think how it must be to be a family living in temporary accommodation. Parents and children sharing the same room, often for years on end. Lives on hold. This is the fate of survivors of the Grenfell fire and tens of thousands of families in Britain.

I will be writing more about my diverse experiences of homelessness.

Can you read?

Through mental illness, I effectively left school at the age of fourteen. The school’s counselor tried to take an interest in me and she happened to be a geography teacher. I credit her with helping me gain my geography O level. I despise people who downplay the extent of their social and educational advantage so I’ll own up to also having a grade 1 CSE in Rural Science (technically that classes as an O level).

I made various attempts to do access to higher education courses, finally succeeding in East London where I did access to higher education by independent study. Apart from a couple of tutorials and a group project, you were left for most of the academic year to work alone. This suited me. I could go into the library and computer room on days I wasn’t too mental. I did my study on press regulation and the work of the now defunct Press Complaints Commission. It was marked by the law tutor. She said she was very impressed. It’s my peak academic achievement.

I was the first member of my family to go to university. Unfortunately, I was the first to drop out. I became completely psychotic, mental even by my usual standards. Sadly I had moments of lucidity. I can remember when I put some books down on the library counter, a librarian asking me why I wanted them. To read, I said, somewhat bewildered. “Can you read?”, he asked mockingly.

Thankfully the next generation of faring better. I have a niece who is doing an MA in Marine Biology in Swansea. She’s from Stoke-on-Trent. I’m not sure there’s much call for marine biologists in Stoke, but she’s happy and you should try not to discourage youthful enthusiasm.

The next stab at education was a Journalism BTEC qualification. I became psychotic and wandered off. They sent a letter in the post congratulating me along with a certificate (I don’t think for being psychotic), so I assume I passed though I didn’t do much of anything and certainly no writing. Never done any type of journalism, but the module on magazine production using design software proved useful and helped me gain some paid work.

Brilliant career

I was contracted by a charity to help produce some factsheets. After the paid work with them dried up I stayed on as a volunteer.

I think the idea was that because I’d done a journalism course I would be good at proofreading – I’m not, as you may have spotted. I was asked to proofread some groups fundraising applications. I’d sit there and think to myself, they’re not answering the question, they’re not addressing the funders’ criteria. For a variety of reasons, a lot of people in charities fundraise on a “fingers crossed” basis. They think they’re a good cause and deserve to be funded. Problem is, there are a lot of good causes they are competing with, 60,000 other charities in London. To cut a long story short, I started writing applications, they were successful and people started paying me.

Between 1998 and 2002 I did a lot of fundraising for local groups in the North Kensington/Notting Hill area. When I have been well enough in the intervening years I have done fundraising work on a voluntary basis. For some reason or other, I’ve ended up being heavily involved in carnival arts. I don’t especially like carnival arts.

I often wonder how well I might have progressed in my career had I not been so seriously disabled. Back in 2002 people were starting to say very complimentary things about my work. Most significantly perhaps, a number of funders were trying to recruit me to work with organisations they were funding. I could have ended up being one of these people you see profiled in Third Sector Magazine. I could have been in industry titan! The Guardian Voluntary Sector Network would reply to my tweets.

At this point, we need to tackle a tricky subject.

As you might imagine, some of the people who selflessly devote their lives to helping the needy were absolutely delighted when a local working-class man with an O level in geography and a history of severe mental illness and rough sleeping established himself as a successful fundraising consultant. No really. They were thrilled.

Burn the witch!

Before we go any further, can I point out that I have a friend who used to work for Mind, a friend whose son loves his involvement in the local Mind football team and at some point – mental health permitting – I may become involved in helping raise funds for a community building from which a Mind project operates. I know that Mind and other mental health charities do invaluable work.

All that said, I think Mind along with a number of mental health, homelessness and other disability charities have got their involvement with the Department of Work & Pensions (DWP) utterly wrong. More broadly, they are increasingly buying into the idea that everybody has to work – no matter how ludicrous and inappropriate this prospect is for many people with disabilities and serious illnesses.

I asked my Psychiatrist her opinion. She said that for some people being treated by the Community Mental Health Team (CMHT) work is essential to them, getting into work, returning to work. But she added that many people under the care of the CMHT are not going to be able to work.

The local CMHT treats just over 600 people. My CPN tells me around 10% do permitted work and roughly 1% are in mainstream work. The team has a specialist work advisor. Work, and especially permitted work, are primarily seen a way for people to overcome isolation and other problems associated with severe mental illness. It’s worth noting that there is no permitted work under Universal Credit. Instead, people will be “encouraged” to take on work. Many people with disabilities can tell you all about the DWP’s idea of encouragement. More than 70,000 people with disabilities and serious health problems have had their benefits sanctioned.

There are many people who are not being treated by their local CMHT who are not going to be able to work. They should be being treated by the CMHT, but CMHTs across Britain are in a state of meltdown and in some areas are little more than crisis intervention. Added together there are hundreds of thousands of people with mental illnesses who won’t be able to work.

The right for people to be financially supported when they are not able to work has to be fought for, defended and guarded. However, we have reached a point where stating people are not able to work has become heresy. As I’m writing this I can hear people scream Burn The Witch!

The DWP is now arguably the principle driver of the growing mental health crisis in Britain. The poorest communities, including the most vulnerable of the most vulnerable, are being terrorized. It looks like the DWP are treading more carefully in London because the political class and bulk of the media are based here, but around the country it’s warfare.

The mentally ill are not being offered “appropriate support” to find work, they’re being bullied, coerced, intimidated, hounded, harassed and persecuted. People are giving up. They don’t claim jobseekers allowance (JSA) or work-related employment and support allowance (ESA) and instead try to struggle through with their DLA/PIP. When they do claim JSA or ESA (work-related activity) they live in a permanent state of fear of being sanctioned and not having money to buy food.

Psychiatrists are increasingly diagnosing people with Kafefakelosphobia, fear of the DWP’s iconic brown envelopes. Therapy Types are devising CBT courses for it. People are assessed and endlessly reassessed for conditions from which they are never going to recover.

In small towns where there is a chance people might bump into DWP staff in the street, people won’t leave the house without wearing their “mental patient” clothes, women daren’t comb their hair or be caught wearing mark-up. All the progress in improving the lives of many people with mental health problems is being swept away.

But wait, a Celebrity Big Brother contestant was photographed coming out of a nightclub wearing a Time-to-Change t-shirt!

Mind and other mental health and homelessness charities continue to cuddle-up to the DWP. Yes but, Mind argues, Paul farmer, our Chief Executive, is forever flouncing out of meetings, calling for “urgent rethinks”, and “fundamental overhauls”. We’ve opposed this and opposed that, but we need to “maintain a dialogue” and “hold a conversation”.

Listening to Mind saying they need to maintain a dialogue with the DWP is like listening to Cancer Research UK  arguing they need to maintain a dialogue with Benson & Hedges. But then Benson & Hedges haven’t funded Cancer Research UK, have they?

There’s no point being coy about it is there? A lot of money is now available for charities to offer, “the right support”, to get people into paid work. I have no experience of working for national charities, but a lot of experience working for local ones. You’d be utterly astounded at the miracles some charities claim they can perform if they think they can get more funding.

Back in 1998 when I started fundraising there was a lot of talk about the economic value of volunteering. You rarely hear about that now. Many people with serious mental health conditions, who are unable to undertake paid work, still think their voluntary work is valuable.

I recently did a website for a charity on a voluntary basis. It took me five months to do what I should have been able to comfortably do in a couple of weeks. At one point I thought I should push myself to see if I could get anywhere near to the point where I could be paid. I did nine hours in one week, collapsed into a puddle of psychosis and then spent two weeks unable to leave the flat.

There are so many people like me. Hundreds of thousands of people.

But you have a website! You’re on Twitter!

I created this website by copying the charity website I did and just changed the logo and type of imagery. Don’t knock it, I have known web designers who built a career on this basis (note that very few people will see both sites together and hopefully I’ll do a fresh layout for this site in the Spring).

As for Twitter, people are being found “fit for work” if they are on Twitter or Facebook, but then three-quarters of children aged between 10 and 12 have social media accounts. Are they are fit for work?

It’s now become a cliche about people are being found “fit for work” in the most bizarre circumstances. There was a fellow interviewed on the news who was found fit for “work-related activity” while in a catatonic state on an acute psychiatric ward. Yeah, but with “the right support” some people in charities would argue.

In the past week, which was fairly typical, I was able to leave the flat twice. I went to a dentist appointment at Guy’s Hospital and I went to the Basquiat exhibition at the Barbican (it was touch and go as to whether I’d be able to attend and I spent the afternoon saying to myself, don’t talk aloud, don’t talk aloud). I had to get someone to help me with the shopping and other basic tasks. I was able to do a few hours writing on this website and finally finished this much-delayed page.

I’m not fit for work –  or work-related activity. My “job” is to do my best to stay well. That way I’ll save the taxpayer a fortune by not being admitted to hospital.

I’m obviously vexed on this subject. I will be writing more.

This page will be updated over time, additionally with the various topics expanded on through blog posts. To stay informed subscribe by email (box to the left) or follow me on Twitter.

1 October 2017

Featured image: The artist Francis Bacon with the writer and artist William Burroughs, downloaded from the site Awesome People Hanging Out Together.

This image isn’t directly related to the subject of being psychotic and proud. One of the things I do when I feel unable to leave the flat – which is a lot of the time – is exploring images on the web. I prefer looking at still images as I often get agitated looking at videos or even listening to music. As it’s mostly highbrow stuff I like to kid myself that I’m not wasting time. This image was my favourite on a day I was unable to do much of anything. I’m influenced by Francis Bacon and William Burroughs and I think the photo captures them well.

2 thoughts on “Notes on being psychotic & proud

  1. Well, you certainly can write Schizosomething.
    Agree about the clothes. Blending in is good when you feel marginalised. Work is happiness is getting a bit like a 1984 slogan.
    The old and ill are also being targeted. Nice pix.

    1. Hi Richard. Thanks for the compliment, but I should stress it took me a couple of months to produce this long page. Now hope to settle into a gentle routine of writing a few short posts a month and take a few photos for Instagram. Have an appointment at Chelsea & Westminster Hospital today so plan to take some pictures of their art.

      Yes, it’s not a happy time to be old or ill.

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