So this is Christmas – and what have I learned?

[Content note: discusses suicidal thoughts]

Yesterday I was looking through some photos and came across pictures of Tom and I took in Bavaria last Christmas. Looking at them gave me a strange jolt. It suddenly felt like no time at all since we met St Nicholas (OK, it may have been the hotel manager in a bishop’s mitre) during our Christmas Eve dinner – yet at the same time this year has been so difficult, so gruelling, it seems to have lasted forever. In all of that hard slog, I had almost forgotten our trip.

There is a poignancy to recalling it. I remember that over Christmas I felt happy, that we built some remarkable memories. A torchlit walk in the dark, the burning pine sticks casting flickering shadows on the snow. A visit to King Ludwig’s Neuschwanstein, the inspiration for Disney’s castle. Hearing the group in the next room unexpectedly break into “Stille Nacht, Heilige Nacht”. Yet I was just days away from realising that depression had been creeping up on me, that I was already starting to think about taking my own life before it could really get a grip. It was a depression that would stick around, causing my first crisis of 2014, morphing into rapid cycling that did not lift until mid-April.

There has in fact been no point during this year where I have been fully well. Even during the summer, when I felt sure I was in remission, I now realise that I was simply marking time between crises. I have also had to acknowledge that my excessive energy (walking up to 15,000 steps per day, plus working out five days a week) and massively abnormal sleep (waking up every hour throughout the night for months on end), all while on 650mg of quetiapine, suggest that I was in fact a bit high. This was not at all clear to me at the time. Then came a September wobble that became an October crisis and I remain under the care of the Home Treatment Team to this day.

Not having any true stability is nothing I haven’t experienced in recent years. But the detail of my suicide planning and the incredibly disconcerting experience of rapid cycling have been new in 2014. I don’t believe I have been this bad for perhaps 13 years, when I attempted; Tom certainly feels that he has never known me to be so unwell in the decade we have been together.

If anyone had asked me during this year whether I felt I was “learning” from the experience, I would have been deeply offended. I am emphatically not of the mindset that pain is a teacher, that we emerge from it somehow spiritually more evolved. It would have felt a grotesque misunderstanding of the senselessness of condition. Yet I have learned some things from my experiences – some good, some neutral, some downright scary.

I have learned that as much as I try to pin my bipolar down, build up strategies to deal with my symptoms, it can contort itself into shapes I never would have believed possible. Shapes that I simply do not know how to respond to, that even Consultant psychiatrists have not known how to tackle.

I have learned that without an advocate (and Tom makes a pretty damn good one) it remains impossible into today’s NHS to get much done by yourself, in crisis, particularly when it comes to trickier cross-border referrals or payment authorisations. No one severely unwell could undertake the badgering required.

I have learned that all the times I thought had been really, truly suicidal were as nothing compared to the cold planning and sense of estrangement from myself and from others during the autumn of this year. This scares me; perhaps there is still worse I have not yet imagined. It reminds me of my second experience of childbirth, something I entered confident in the belief that I had done this before and knew how bad it could get. I remember being unable to stop screaming, and a detached part of me marvelling at the previously unknown scale of the pain. I feel like I have been screaming half the year.

I have learned that after being very resistant to the idea of Home Treatment Team I was probably cutting my nose off to spite my face. It felt like a massive to step to let them into my life – I certainly never dreamed I’d need them twice this year. But they have turned out to be the most amazing resource (with the exception of one or two nurses who need to zip their lips and engage their ears more).

I also learned that after twenty years of steadfastly refusing admission, I am capable of getting to a point where I am prepared to beg for a bed. I didn’t, because Tom took two weeks off to care for me and that just bought me enough time to drag myself some way out of the suicidal pit. But I would have. The sort of stubborn pride I once had about only having friends and family care for me is long gone.

I have learned that by standing up for myself calmly (OK, relatively calmly), it is possible to sometimes challenge and change a psychiatrist’s view of you, and yours of them. Earlier in the year I felt all trust between the Home Treatment Team Consultant and I was broken, that we could never have a therapeutic relationship. I’m not condoning his conduct in the spring; I still think it was awful practice. But expressing that, rather than withdrawing from services as I initially wanted to, has lead to us being able to work together.

I have learned that even if I have to take time out or hand back work – and I have loathed doing this, after working hard to build up my professional reputation – anyone really worth working with will continue to offer you opportunities.

I learned that Tom really will stick by me through anything. I am ashamed now by how meticulously I planned to leave him, and my children, and the world behind. I don’t know if he was just trying to appear as if he took it all in his stride but he certainly did a good job of seeming unshockable. I’m not sure I could have coped with being the one to hear such calculated ideation.

Does any positive learning or the interesting things I’ve done make up for the year I’ve had? I don’t think so. Nothing could make the past year feel like it was anything other than horrific, traumatic. I would not wish the experience of the past twelve months on anyone. So there is nothing left for me to do other than what I always do: look forward with hope and optimism to the New Year ahead. And hope for better.

Posted in Bipolar, Crisis care, Depression | Tagged , , , , , , , , , , , | 10 Comments

No desk to call my own: who exactly has “poverty of aspiration” round here?

Another day, another story about the Department of Work and Pensions (DWP) “workfare” schemes, where people are made to work at any old job for their state benefits, rather than being paid a wage. We already knew that forcing people into this kind of programme does not lead to improved levels of employment; today’s story is even more disheartening. A survey carried out by Mind found that for people with mental health issues, workfare actually makes it harder for them to become “work ready”, since 83% of participants stated that using the programme had actually made their mental health worse.

It is clear that as far as the Government’s ideas about “improving employability” are concerned there is an over-reliance on the idea that simple barriers stop people who are disabled by mental health conditions from working. Pretty much all the DWP schemes I’ve read about assume that we don’t have jobs because of a lack of something that can be fairly easily remedied. A lack of knowledge about how to carry out job searches or put together a CV. Lack of resources, such as an interview suit or travel costs. Or a “poverty of aspiration”, an odious assumption that we end up lying around in bed all afternoon or spending our time at a day centre because we just haven’t any goddamn grit and ambition and need to be sent to work in Poundland to develop these traits.

Except of course I know how to write a CV. I have interview suits (although thanks to antipsychotics I may not be able to squeeze into them now). I have all sorts of qualifications, so yeah, I actually have the ambition thing down, thanks. I job search endlessly, even when in crisis, tormenting myself by looking at posts I’d be perfect for – if only…

Here is a list of things that I still, almost four years since I first went off sick, cannot do:

  • Predict what my mood state might be next week
  • Cope on fewer that ten hours’ sleep a night
  • Get up before 9am without adjusting the timing of my antipsychotics so that I have to go to bed as soon as I’ve eaten (and before the optimal time for taking my lithium)
  • Guarantee to show up at a desk somewhere on regular days at regular times, even on a part time basis
  • Guarantee not to cry all day
  • Focus if I have brain fog or hypomanic distractibility
  • Work more than two full days in a row without showing signs of becoming unwell
  • Commute into central London where all the good jobs are.

I cannot make or will myself to get past these issues and force myself to be “work ready”. Disabled people’s organisations have long made the point that many workplaces do not or cannot make themselves sufficiently enabling, supportive and flexible to support disabled workers. And although I can sometimes work, and often want to, realistically I cannot see any organisation managing me around my bipolar. I do not think it possible that I will ever again have a desk to call my own.

Which is why over the past couple of years I have been self-employed. Being my own boss means that I can decide exactly what I am and am not capable of doing. It means that if I put in two hard days of training, I can block out the rest of the week to recover. It means I can balance work outside the home – like training, public speaking, meetings, field research – with things I can do from my sofa, such as writing articles or reports or reviewing documents. And because everything I do is for a mental health or disability organisation, when I’m really not well enough to complete something or attend something, the various people I work for understand. That doesn’t stop me from feeling terrible when I have to hand work back, even when I’m in crisis.

The downside to my current job is pretty huge: I don’t make enough money to live on, but I make way too much to be within the DWP’s “permitted earnings”. People see me tweeting or blogging or on television and often assume I must be making money from those things. I read somewhere that only 2% of people make money from their blog, usually through advertising, and I can assure you I am firmly in the 98%. Nor do I get paid to speak on the television or the radio, or to blog for a mental health charity. These are all things that fall into the category, “Stuff I do for free in the hope it eventually leads to paid work” and indeed much more paid work is coming in than last year. There is no way, however, that I will hit the tax threshold. I won’t even get close.

This means that without a partner who can pay the majority of the bills, I couldn’t afford to keep doing what I am doing. Even with tax credits it wouldn’t be manageable. I would have to give up doing work that I believe makes a difference, stuff like researching into people’s experiences of mental health services, or training people in Mental Health First Aid, or providing a service user voice at professionals’ conferences. I’d be back to a place where my bipolar would be a hindrance, not an advantage. I simply wouldn’t be able to wait and see if my business could grow to a point where I might be self-supporting ad become a taxpayer again. I would have to stop it all and decide whether to claim ESA this time or whether to go onto Jobseekers Allowance. And then I would have wait for the day when I was summoned on a course to teach me how to get a job, which would most likely be so unhelpful it would make my mental health worse (costing the state more in healthcare).

I know exactly who has poverty of aspiration for mental health service users, and for disabled people in general. And it’s not me.

Posted in Activism, Bipolar, Employment and benefits | Tagged , , , , , , , , , , , , , , | 13 Comments

Where there is no spring and no autumn: the world of rapid cycling

Seasons are funny things. If you live in a equatorial region, you may barely experience them at all; if you live in a polar region you probably live part of the year in unremitting darkness which eventually gives way to “white nights”. Living through a heat wave that has gone on for weeks, it can seem impossible that our streets and parks and fields were once covered in snow. Bizarre, even. Yet as we crunch over layers of ice, in that strange silence that comes only after snowfall, it is the sensation of heat and light, of long days and high pressure, that we cannot recapture. No wonder that so many films and novels play with the idea of perpetually cold environments, or create desert planets, or dream up worlds in which the seasons are very different to our own.

I think I’m on pretty safe ground in assuming many readers will have heard of Westeros. It is the continent upon which most of fantasy novel A Game of Thrones, the subsequent books in the A Song of Ice and Fire, and the TV series adaptation is based (even people I know who Don’t Do science fiction or fantasy seem hooked on AGoT, which pleases me). Just in case you are as yet unconverted, Weteros, as in our own northern hemisphere, is permanently frosty at the top of the map, and gets warmer the further south you go. The difference – and oh, what a difference it is! – is that on Westeros, seasons last not months, but years. When the series opens, a whole generation has grown up not really knowing what it means to experience winter. Autumn, however, is in the air, giving rise to repeated warnings (now become a full-on internet meme!) that “Winter is coming.” And winter on Westeros has the potential to bring very bad things indeed.

Right now, I feel like I live in my own alternative world – I haven’t made it up, I didn’t ask for it, but here I am. It’s pretty much the opposite of Westeros, because in my world the seasons change frequently, and without much warning, often with none at all. It is the world of rapid cycling, where there is no spring and there is no autumn, just a switch between extremes. Hypomania brings the summer. It is a period of light, of joy, of optimism about the future. It is a time for dancing, for working, for making hay (pitching for work, buying Christmas presents, cooking interesting food) while the sun still shines. Because I know that winter is coming. It is always coming; it is just a question of when. The sun will shine for no more than five or six days, and often much less than that, indeed sometimes it shines for just a few hours before the psychiatric storms brew and joy turns to irritation, to feeling overwhelmed, to craving rest. Then there is a point when I wake and my initial understanding of the world – just seconds into the new day – is that the first frost has set in. From there the psychological cold creeps over me, settling into my bones until I feel I can hardly drag myself around. My mind too is cold and can only hold chill, dark thoughts, thoughts like: I cannot survive another winter, no matter how brief. Like: maybe this time winter has set in forever and I will never escape. Like: I cannot cope, I need to not be here, not live on this constantly changing world. Once summer returns I will struggle to remember how this felt, how powerlessness against the cold. Yet once I’m again in the grip of winter, there is no imagining summer.

Rapid cycling is no way to live. When I finally had my appointment with National Affective Disorder Service last week, this is what I told the two doctors who assessed me. They fully understood; being specialists in mood disorders my ever-shifting world is something they have seen before. They were incredibly reassuring on several counts. Firstly, that people with bipolar sometimes just develop rapid cycling. It’s not something they’ve done, or failed to do. Sometimes there is an obvious trigger. Sometimes there isn’t. Sometimes it just happens. Secondly they were reassuring in their belief that a treatment plan could be developed which would better target rapid cycling than my current regimen of quetiapine and lithium. Furthermore, they were confident that there were options. They could suggest a first line in a new treatment plan, but if that didn’t do the trick it could be augmented, or replaced with another option. (The issue of specific therapy for bipolar was also raised, although unfortunately the post for the therapist that would provide this is currently vacant.)

I felt validated and much more optimistic than I had in a very long time, and that the appointment had definitely been worth the wait (although they apologised for all the bureaucratic problems). I was given the opportunity to choose my preferred option, and the doctors agreed to fax that over the Home Treatment Team consultant. The nurses and junior doctors at HTT were really pleased that I had finally been seen and had a new plan to work to (“We are all almost as excited as you are, we are so happy for you!” said one of the nurses, which I found very endearing).

I started my new plan today. It involves very, very slowly building up a new drug, the antiepileptic lamotrigine, in my system over many weeks, and not even attempting to reduce any of the quetiapine dose until the lamotrigine is at a good therapeutic dose. Even then the reduction will be done very slowly to avoid breakthrough of symptoms and/or physical withdrawal. I’ll be staying on the lithium indefinitely. I’m positive about this plan, because, well, quite frankly doing anything feels better than just staying as I was. But it is a fairly long-term strategy, and that requires patience, and patience is hard to come by when you dwell in the land of ever-changing seasons. For now I remain under HTT for support, I continue to use diazepam, I continue to tweet and I continue to blog. That’s all I have to keep out the worst of the cold.

Posted in Bipolar, Depression, Hypomania, Mental health, Rapid cycling | Tagged , , , , , , , , , , , , , , , | 13 Comments

A guest at an awkward party: a service user observes the acrimony between psychologists and psychiatrists

Last year I went to a barbeque with some friends, taking my partner and kids. It was a warm, golden evening. We sat out on the patio sipping wine and chatting while the children milled around, shooting each other with Nerf guns and water pistols (for which it turned out my teenagers were by no means too old after all), gravitating back to the table occasionally when they wanted more burgers.

Yet the evening wasn’t a pleasant one. I was aware the couple had been having problems, but I hadn’t appreciated how bad things were. As the wine flowed, so did the increasingly barbed comments, with no regard for the fact that the children could hear every word. At one point things degenerated into the adults addressing one other through the children (“Well, if your father had fixed the trampoline, you’d be able to play on it, wouldn’t you?”). The whole evening was incredibly awkward and I felt that the people the evening allegedly focussed upon – my partner and I as guests, the children we had all agreed we should get a chance to play together while the weather held – were essentially ignored, forced into witnessing acrimony we had no desire to see. Like the children must have been, I was sad and felt torn; I considered both husband and wife to be my friends. I did not want to be forced to take sides.

This evening has come to my mind several times this week. In May last year the fifth version of Diagnostic and Statistical Manual version (DSM-5), often referred to as the “Bible” of psychiatry (in the USA, anyway; Europe tends to make greater use of the World Health Orgnaisation’s International Classification of Diseases, now in its tenth incarnation as ICD-10), was launched. At the time, this was represented in the media as psychiatry drawing a line in the sand, and an ever-encroaching line at that, taking in behaviours/experiences that had not previously been pathologised. The natural enemy of this “mission creep” was reported to be psychology, with its tendency to question the biological basis of many psychiatric conditions and challenge the scientific validity of medication as frontline treatment. Psychiatry and psychology were pitted against each other in a way that many of the clinicians I knew did not feel reflected the reality of professional working relationships.

Here’s a pretty representative article from the Guardian, headlined “Psychiatrists under fire in mental health battle” it has the byline, “British Psychological Society to launch attack on rival profession, casting doubt on biomedical model of mental illness.” I found these warfare metaphors deeply unhelpful; my concern was that it gave service users the impression that members of the multi-disciplinary teams that were meant to co-ordinate to help them were at each other’s throats. Anyone receiving both medication and talking treatments might justifiably wonder how a psychiatrist could have faith in the therapy s/he referred them to, or whether the clinical psychologist delivering the therapy was secretly sneering at their use of psychotropic medication.

At the time, therefore, I went to great lengths to talk down all this “battle” bombast by sharing my personal experiences of medically and psychologically trained staff working together for my good. I was cheered that some of the psychiatrists and psychologists I followed were similarly concerned at all this talk of a split, and pleased to be asked to take part a three-hander article for a special issue of Clinical Psychology Forum in which I was able to put the questions that concerned me as a service user to both a psychiatrist and a psychologist (a piece which the editor tells me was well-received).

Except eighteen months on, I’m beginning to feel that either I was wearing rather rose-tinted contact lenses last year, or that rather than the talk of war blowing over, a wider and wider chasm has opened between psychological theory and that of psychiatry. The Twitter conversations I witness are becoming more and more bitter and biting, particularly following this week’s publication of the British Psychological Society’s 175 page report entitled, somewhat cumbersomely, “Understanding Psychosis and Schizophrenia: Why people sometimes hear voices, believe things that others find strange, or appear out of touch with reality …and what can help.”

With my mental health as poor as it is, I’ve not been in a position to read the whole report, yet I’m already sick of it. Why? Because the instant it was published, so were psychiatric critiques, most notably this one from the Mental Elf (although it should be noted one of the authors of this particular document is a psychologist). Just as last May psychologists jumped all over the DSM-5, psychiatrists were poised to take on the BPS’s report and look for its flaws. There is nothing at all wrong in dissecting an important document, but just as last year I was left feeling that psychologists were taking rather unseemly pleasure in attempting to demolish the medical model, psychiatrists are now doing the same regarding this report. This bitterness has spilled out into vitriolic Twitter exchanges with talk of camps and parties, of critiques held sacred by some and rejected as “predictable backlashes” from others.

I am sorry to say that from the position of a humble service user, the ostensible “guest” at services’ party, I feel ignored. It is, frankly, embarrassing, watching so-called professions trying to undermine each other. I freely admit I count a number of psychologists and psychiatrists as online friends, but from where I’m sitting it looks like each profession’s desire to be “right” has now eclipsed their focus on patients. Just like at that barbeque, I want to get up and walk away from the acrimony and the awkwardness – only I can’t, because I need the services of both psychiatrists and psychologists.

I get how closely-held these principles can be. I honestly do. Were it not for my bipolar I would have been a midwife, and as a trainee I clung passionately to a desire to facilitate and support normal birth. I was a paid-up member of the Association of Radical Midwives, whose emblem was the low-tech Pinard stethoscope, symbolising philosophical objection to practices such as bed-bound continuous electronic foetal monitoring. Yet I pride myself that I never attempted to dissuade a woman from choosing the birth she wanted, be it a home water birth or planned C-section. It would have been wrong and ego-driven to insist on my preferred model of birth. Yet still I see clinicians publically stating that psych meds are harmful, or that if a person refuses drugs they will/cannot be helped.

I want nuance in my care. I want psychiatrists to care about my childhood trauma and the content of my delusions. I want psychologists to recognise that my bipolar is not just a construct, that with childhood onset I had clear symptoms for many years before I had even heard the words “bipolar” or “manic depression”, let alone met a psychiatrist. Yes, there is a strong anti-psychiatry/survivor movement among people with mental health problems. Yes, there are also plenty of true believers in the brain chemistry/biological determinism camp. But most service users are like guests at the party. We don’t want to see you fighting; it diminishes our confidence in you as caregivers. We don’t want to be made to take sides. Many of us are essentially pragmatists when it comes to our healthcare. We don’t want to sign up to a theoretical model, we just want to be able to access the things that work for us.

This is me, a service user, drawing my line in the sand. Professional debates about what is best for us are actually closing us out. You can’t insist on being right and provide flexible care. You can’t vocally and brusquely undermine another clinical group and then expect us to trust in your referral to that profession.

There are guests at the table. Behave.

Posted in Activism, Mental health, mental health debate, Mental health services | Tagged , , , , , , , , , , | 12 Comments

The lonely life of the outlaw

***TRIGGER WARNING*** Suicidal thoughts/plans

Please take care of yourself and don’t read on if you are feeling at all vulnerable

In the six years I was a frontline probation worker I spoke with all kinds of people about all manner of crimes. Some were one-offs, people “of previous good character” as the Courts like to put it, often helped along by alcohol. Some people’s offending was made up of many smaller crimes that they hoped would never be discovered, repeated petty frauds, habitual minor shoplifting or other theft. The financial gain might have been small, but perpetrators often had much to lose; I will never forget the dinner lady who stole repeatedly from the school safe to fund her online gambling, nor the trainee barrister who lost all hope of practicing law once convicted of fiddling timesheets at the office where she temped.

Towards the end of my frontline career I worked with a different kind of offender entirely. I was the specialist Probation Officer for a group of mostly men (40 individuals, of whom just one was a woman) identified as causing a disproportionate amount of local “acquisitive crime” – thefts from cars, street robberies and, above all, burglaries – committed to find their use of heroin and crack cocaine. Unlike the dinner lady and the trainee barrister, these were people who had very little to lose. Most had a history of what would once have been called “delinquency”, a pattern of teenage behaviour including low-level crime, dabbling in drugs and the kind of disruption and absenteeism which saw them excluded from the school system without qualifications. Their family relationships were tenuous; many had been in care, and it was not unknown for them to have been introduced to Class A drugs by their own parents. Printed out, their criminal records ran to many pages. With little hope of a legitimate job and no secure accommodation these clients frequently went on benders, committing burglaries or robberies daily, simply to fund the next day’s drug use. When the police finally caught up with them it was my job to coordinate with a drugs worker, a housing worker and specialist police officers to try and get them into treatment, into housing and under stricter supervision.

I usually met them after their latest arrest in a glass-walled interview room in Wormwood Scrubs. My job was to tease out of them exactly what had happened this time, where and how things had unravelled until they’d reached a point of what felt like no return. Sometimes these men would describe “going off the rails” to such an extent that they no longer felt in control of the situation and were in some way relieved to have eventually been arrested, to have been stopped in their tracks before they could do more harm to more victims. In more than one case a client actually phoned a police officer from my team and asked to be arrested. If they were going to give up and be cuffed, they’d rather it was by someone they trusted and knew.

This former caseload of mine has been much in my mind of late. As my suicidal plans grow and develop, becoming more defined as I have undertaken detailed research, I feel more and more that I am the one now off the rails. I feel, as my clients sometimes seemed to, that I am only partially responsible for my actions because my bipolar bender has taken on a life of its own and I no longer know if I can stop it. A few weeks ago when first in crisis, I wanted to be stopped. I gave up, voluntarily, information that would allow someone to step in and stop me. I didn’t much care if that was a relative or a professional. I didn’t care if I had to be admitted. I wanted to be the one to be told, “This is where it ends. Enough. Come in, before it gets worse.”

The difference now is I don’t know that I want to stopped. I feel that the “seductive suicidal voice” has the upper hand, just as my clients sometimes felt their addictions did. Certainly my suicidality, like an addiction, is making me self-centred, horribly concerned with my own needs and my own needs only. Certainly it is causing me to do things that do or might hurt people I love. The suicidal inner monologue is constantly running, while at the same time I continue to do ‘normal” things that “normal” people do – discuss Christmas plans, choose a new kitchen appliance, worry about a relative’s health, plan work several months away. It’s not that I am feigning interest. Part of me really is invested in the future, but part of me… isn’t. Maintaining this duality is very tiring. Most probably it’ll soon get to a point where I hold my hands up, confess everything I’ve been doing, buying, thinking and reading, acknowledge that I am very ill, but I’m not there yet.

My biggest protective factor at the moment is my appointment at the National Mood Disorders Service, which is now just four days away. It would be beyond ridiculous to wait seven months and end up in hospital and unable to attend. So I’m struggling through each day, telling my inner monologue that no, it doesn’t have to be now, it doesn’t have to be today, nor tomorrow. I know that I need to cease doing the things that make it more likely I’ll put my plans into action. And I know the best way to do that would to be tell somebody the truth, Tom, or the nurses at Home Treatment Team, or maybe the junior doctor.

But I’m not there yet. I’m not ready to give up and give in, to ask somebody to stop me. I’m being referred back to the Senior Psychologist attached to the HTT. Maybe he can help me make some sense of it all, of my twisted motivations and conflicting desires. In the interim I daren’t even tweet my thoughts any more, for fear some over-zealous “helper” will try to involve the emergency services. I feel like more and more like an outlaw, far out on a limb, someone whose thoughts or deeds set them apart from normal, decent people. And that’s such a lonely place to be.

Posted in Mental health, Suicide | Tagged , , , , , , , , | 4 Comments

Hypomanic hangover

One of the unexpected benefits of being on antipsychotics is that I’ve not had a hangover since 2011. Being that bizarre hybrid creature “an extravert with a degree of social anxiety”, in the past I often used to find myself drinking more than I meant to at parties or on nights our as an attempt to allay my nerves. I can’t do this now; anything more than a couple of units of alcohol begins to mix with the quetiapine in a very unpleasant way which has put me off having more than one drink in any given evening.

After those occasions when I’d have one, and then another one, and then another, I’d go to sleep fairly easily but at some point in the early hours I would jolt awake, palms sweating and pulse racing, feeling like Uma Thurman in that scene in Pulp Fiction when she’s given an adrenaline shot to the heart. From that point, I would be consumed by a sense of doom. Things I had done or said that at the time had seemed witty, interesting, or fun now looked like the behaviour of an embarrassing “mature” woman who should know better. A sense of sick horror about the way I had conducted myself mingled with the inevitable nausea, pounding head and craving for bacon, and it would often take a day or more to stop beating myself up about my drunken behaviour. And every time I was in the grip of a hangover I would make fervent promises to myself that I would never put myself through this again. (You can guess how that went.)

Today I am suffering from a different kind of hangover. I am consumed with the same kinds of guilt and shame, a sense of horror at how I’ve behaved, and a bunch of recriminations and promises to do better next time. Only it’s not drunken behaviour I’m regretting – it’s the things I have said and done while I’ve been hypomanic.

I was hypo for most of last week and at first it was very pleasant. Recent dread about Christmas (is it just me, or have the Christmas adverts kicked in even earlier this year?) had seen me crying to the Home Treatment Team nurses about how I couldn’t even cope with the idea, but now this miraculously lifted. Suddenly I was ALL ABOUT CHRISTMAS. In November! I knew intellectually that the big day was some weeks away but I felt very driven from within to shop for it, and to shop for it now. I scoured charity shops in two towns looking for suitable fabrics for some Christmas craft ideas and searched Pinterest for inspiration. That wasn’t going to be enough, though; I had a strong sense that I must also shop for ready-made decorations because my Christmas tree must have a whole new look this year. Before I knew it, I had spent at least £75 on baubles and ribbon and the like. While I was in shopping mode I also bought a new-to-me sparkly charity shop dress for the Mind Media Awards (of which more later).

Most of the time this shopping was lovely. I felt a huge sense of reward every time I found a decoration or a bit of fabric that was exactly what I wanted. Everyone that dealt with me was pleasant and congenial. I found myself popping into places for a straightforward purchase and lingering for ten or fifteen minutes, chatting to staff. I was tremendously satisfied with all my purchases, right down to the bag for life that protected my new glass baubles.

Whilst in this buzzy mood I had been thinking a lot about the Mind Media Awards. Although I ended up enjoying my first Awards I had found arriving at the very noisy and crowded foyer of British Film Institute quite overwhelming and had almost run away. This got me thinking about people who might be coming for the first time and/or on their own and how to make arrival easier than I had found it. I was also keen to connect with a number of online friends and perhaps meet them beforehand so I didn’t have to walk in by myself. And so I took it upon myself to try to organise something. This, dear reader, is the story of my hypomanic life. If there is something to be volunteered for, I will stick my hand up. If I see a gap, I will undertake to fill it. If someone is struggling, I will want to rescue them. And so I tried to make myself a kind of focal point for people on Twitter to connect in real life, inviting various people I knew were likely to be there to join me for a light meal immediately before the Awards.

There had been a slight irritable edge to this hypo all along, but as the week wore on that unpleasant aspect become more and more prominent. I snapped at poor Tom after he’d had a crappy day yet still managed to get the supermarket to fetch dinner, provoking a needless row. In one charity shop the volunteers refused to see me an item for £1 despite me having picked it particularly because it was on the one pound rail. What started out as a calm assertion that consumer law said they were obliged to sell at the advertised price quickly escalated into me haranguing them about their need for training, the pathetic nature of their understanding of consumer law, and a threat to report them to Trading Standards whilst telling everyone in the borough never to shop there. Overkill, much?

The following day I found myself unable to ignore one of the frequent email “invitations” I get offering me the amazing opportunity to blog about someone’s non-mental health product to boost their business for free. I was particularly irked by the writer’s purported love of my blog given the fact he’d got the name wrong. I knew it was pointless but I felt compelled to send a scathing response asking him to leave me alone. This resulted in two further emails from him and a eventual blistering response on my part involving lots of profanity and a warning that if he persisted in contacting me again when he had already been specifically asked not to, I would begin a file on his harassment of me. Just after I hit send on my final email I held the door open for my downstairs neighbor, who was talking on her mobile and dragging her little dog along. She didn’t acknowledge me, and I found myself calling snottily after her, “THANK YOU. That’s what it’s customary to say when someone HOLDS THE DOOR OPEN FOR YOU!”

As soon as I got in I realised how overwhelmed and overstimulated I was, and that being hypo really wasn’t fun anymore. Feeling physically exhausted I went to bed quite early but struggled to fall asleep as brightly coloured, constantly-changing pictures kept forming in my visual cortex, a kind of exhausting manic kaleidoscope. I didn’t feel I could take much more.

As it happened, I didn’t have to worry about taking more. Over the weekend my mood crashed, as it so often does after a hypo. And with the crash comes the inevitable hypomanic hangover. Why did I behave the way I did? What was I thinking, spending so much money on something so frivolous and unnecessary? What did I hope to gain by behaving in such a sneering, vindictive, self-righteous way? It certainly didn’t give me any pleasure. Why did I buy craft materials I would now feel guilty about my inability to use? Why did I make myself unofficial organiser of the Mind Awards tweetup? As soon as I got up this morning, I know I couldn’t go and be among all those people. I loathed myself for suggesting the idea, picking a venue and publicising it and giving people my mobile number. What was I thinking?

In about half an hour the Mind Media Awards will be getting started. I’m sitting on the sofa in my pyjamas and a huge cardigan. My special outfit has been shoved to the back of the wardrobe and my hair’s unwashed. Tom’s out so it’s just me, my ready meal for one, and the shame and guilt and remorse and self-hatred of another hypomanic hangover.

Posted in Mental health | Tagged , , , , , , | 9 Comments

A matter of opinion: are all views on mental health equally valid?

A couple of weeks ago I took Guardian journalist Hannah Jane Parkinson for the headline, “Samaritans Radar is a crude tool for flagging suicide risks – but it will save lives”. I baulked at the word “will” in the face of the app’s newness and its hugely problematic nature, and asked where her was evidence for this statement. Parkinson tweeted back that she didn’t need evidence, because it was an “opinion piece”. I understood that, but Parkinson wasn’t sharing her opinion; in using the word “will” she was making an assertion (as distinction she didn’t seem to be able to make).

Opinion: a view held about a particular issue; a judgement formed or a conclusion reached; a belief; a religious or political conviction

Assertion: The action of declaring or positively stating; declaration, affirmation, averment (source: Oxford English Dictionary)

If you’re asserting something, I continued, you need to be able to back that up. A few other people jumped in on the evidence issue, but Parkinson wasn’t for turning. In her view, her opinion (or “assertion” as the pesky old OED would have it) simply didn’t need evidence. Because everyone’s entitled to one of those and should be allowed to publicly air it.

Right?

Yesterday I learned that in the opinion of someone called Turhan Canli, “Major depressive disorder (MDD) should be re-conceptualized as an infectious disease” perhaps caused by “parasitic, bacterial, or viral infection”. It’s a startlingly left-field statement, not least because Canli is an Associate Professor of Psychology and Radiology (with sidelines in Humanities, Compassionate Care, and Bioethics) and not a specialist in psychiatry or, um, parasitology, bacteriology or virology. What evidence could he have for such an attention-grabbing headline?

Clicking through to the full article, his conjecture rests on little evidence. First there’s his point that depressed people exhibit “illness behavour” like low energy. Well, prescription drugs can reduce energy, as can other chemical issues like low blood sugar, or factors like insomnia, all without the involvement of pathogens. He also says that people with MDD display “inflammatory biomarkers”. This is based on two meta-analyses (a compilation of the findings of a number of studies). The first merely notes: “depression is accompanied by activation of the IRS” (inflammatory response system)” – there’s no speculation as to the nature of the association, so for all we know it’s the depression that causes a rise in these markers. The meta-analysis found levels of a different marker “were significantly higher in MDD patients than controls” but notes that “age, samples source and ethnic origins may play a potential role in heterogeneity”. In other words, the findings could be explained by something unrelated to the depression.

Next, Canli points out parasites, bacteria and viruses can alter people’s emotional behaviour. This is true. But so can drinking alcohol, listening to music, getting into an argument, becoming a parent or watching the John Lewis Christmas advert. They’re not form of infection (with the possible exception of the John Lewis Christmas advert). Lastly, Canli looks at possible inheritance of this depression infection. Maybe, “parasites could also add exogenous sequences to the human genome through the process of horizontal gene transfer” or perhaps we should look at the “estimated thousand species of bacteria reside in the human gastrointestinal tract” which could be passed during childbirth or through children living with their parents.

Wait, what? How am I supposed to have passed the depressive infection to my son, again? Is it in my genes, or did I give my child depression in second stage labour, as a woman with Strep B (group B streptococcus) might? Why didn’t I infect my daughter, then? So, big surprise, no real evidence for Canli’s theory (or set of theories) – but plenty of unwarranted inference and wild leaps of the imagination. Opinion as assertion, giving credence by publication in a journal.

This week the Maudsley Hospital held one of its regular debates on a mental health topic. On this occasion the issue up for a mauling was “Whatever happened to the stiff upper lip?” Batting for Team Psychiatry was Simeon Wessely, President of the Royal College of Psychiatrists. Captaining the Celebrity Pillshamers was novelist Will Self. Yep, that’s right. A novelist. Whilst I generally dislike debates, I do understand that for some there is a certain pleasure to be taken in putting forth an outrageous position purely the purpose of generating passionate argument. But a novelist? Really? Against the President of the RCP? What is his opinion on psychiatric prescribing worth, and why should it be worth any more than anyone who has taken psychiatric meds?

It seems there is a current trend to be so obsessed with the concept of “balance” that personal opinion opposing the prevailing view is often treated with as much dignity and weight as that founded on evidence. Programmes like Newsnight and Question Time pit politicians and experts in their field against people with no real credentials other than holding a strong opposing opinion on the evidenced stance. This has the effect of implying that all contributions matter equally, and that all opinions are similarly valid, whether you have spent decades studying the issue or are known simply for being “outspoken” on a topic.

Does this matter? Not in every topic of debate, perhaps. But when the topic are those that affect the lives of millions of people with mental health conditions, setting up assertion as opinion or treating spurious assertions as just as valid as an informed positions then yes, I think it matters. It especially matters if, like the examples above, the deliberation is about the issues affecting services users, without their involvement.

It matters if the ridiculous notion that depression is an infection is treated seriously, because it reinforces the unlikely notion that mental health conditions have purely biological roots and gives false hope that we will one day find a “vaccine”. It matters if someone is allowed to assert that that Samaritans Radar will save lives, because it steamrollers over huge level of concern within the mental health community that it will do no such thing without providing any evidence to the contrary, again potentially generating false hope as well as providing a skewed picture to those new to the topic.

It really matters if we say that, just for fun, we’re going to allow the opinion of a novelist to be pitted against the most senior psychiatrists in the land, because it reinforces the idea that in mental health, anyone’s opinion goes. Giving credence to the idea that meds are A Bad Thing may be a bit of entertainment for those who see medicine as intellectual exercise, but it feeds into and reinforces the uniformed opinions of those who thing pill-taking does more harm than good. And that harms real people, people who have to live with family, friends or colleagues who are mistrustful of drugs, who think we are weak for taking them or that we’re being turned into zombies with no authentic emotion. Besides which, debating the effects of psychotropic meds without the input of those who take them seems to be missing the entire point, something like judging Masterchef without asking the view of the people who tasted the food.

In my informed opinion.

Posted in Mental health, mental health debate, Mental health services, Pillshaming | Tagged , , , , , , , , | 13 Comments