Revolt from Recovery (Radical Recovery) by Jeremy Gluck

Victim Of Dreams by Jeremy Gluck

A friend who has written extensively on mental illness sent me the following piece of writing, and I felt I wanted to share it here. I’m very interested in finding other examples of pieces of writing others might feel appropriate to publish here – as I think it’s the individual voices of those who endure and suffer that should be heard – not politicians who do not value our lives and cause immeasurable further harm and suffering, and not those who work in the field necessarily, who perhaps haven’t experienced severe mental distress first-hand. I care about hearing the diverse, intuitive, intelligent, often radical and often acutely insightful pieces of writing the mad and the ‘mentally ill’ write, collate and construct though perhaps don’t share. In my own life, it is my writing which has found its way largely into a public arena, that has saved me from a premature death or a life of madness and reliance on a mental health system unequipped for my needs and disinterested in my unique experience. I imagine the immense power of what this clamouring of voices could sound like – those people locked up on PICU units and sat in endless appointments where they are told to think differently, that their experience is not normative, and their approach to solving their own problems is problematic for a world in which productivity and functionality are the two qualities that we are told are paramount to our belonging in the world. Often, those who don’t fit the neat diagnoses and discourses, and who resist treatments they know will cause them harm or who are unable to live in a world as a functioning machine with a uniform set of ideas, values and needs are maltreated, bullied, abused and supressed. To me, the question of care has nothing to do with the idea of a functioning system, either in the individual or the larger and rapidly deteriorating mental health system and the government who choose to bolster or destroy it. It’s about the individual, and how we can all make every person feel valued, and not based on our own ideas of normativity. That inevitably means listening to individual people. There is no common understanding amongst the mentally ill and never will be – no coherent message that each and every person would be happy to endorse – it’s completely unique from person to person, what they want and need, how they view the world and their treatment. There’s immense power in this, so it’s essential that every single person in mental health care throws away entirely the idea of a base-line normativity the mad have to get back to in order to fulfil the wants of larger society. Some will opt for medication and drug treatment, others will resist and refuse (as I have) and many will never be able to access or afford to access any kind of therapy or any kind of adequate support – so what do we have, each one of us? We can endeavour to vocalise our experience until we are heard. Writing it down is so vital. Reading others’ experiences is also vital, and powerful. Sometimes writing can give us permission to be who we are and permission to allow ourselves to voice our own concerns. If anyone would like to contribute to this blog in any way please let me know.

But for now, I welcome to the stage, Jeremy Gluck…

“Outside of society, that’s where I want to be.” Rock’n’Roll Nigger, Patti Smith

Revolt from Recovery (Radical Recovery)

To solve the problems of mind, and therefore mental health, we must go beyond the mind. No matter how well-intentioned or in some ways and cases effective, conventional – even at its margins, as in the current mantras of more adventurous “recovery” – ideas will be futile. Everything developed and delivered in terms of the mind – “mental”, therefore – will ultimately prove pointless. There must be freedom, not halfway houses and compromises and hypocrisy and inverted, converted self-pity and skewed self-regard. Everything now standing to do with “recovery” must be demolished and nothing put in its place and the unknown given freedom to manifest.

I don’t care how much better or more helpful the “recovery” movement and practice in services and for service users has proven. The radical is required. Something literally unthinkable because to go beyond mental illness we must go beyond the mind. Ideas, identities, all of it; in the sale of the soul everything must go. It is possible to be rid of mental illness: by having no mind. This is the absolute position. This is literally the unthinkable, the perspective without comparison or convention to moor and ground and pollute it. It is the pure and peerless place. Why don’t I want to be involved anymore and identified anymore with mental health and mental illness, even to help? I am in direct and radical revolt against it all. Against being “mentally ill”; against “recovering”; against it all. I am…sick of it…from it. The tame tyranny of drugs, the kindly and hopeless concern and sympathy of others, even of empathy and fellow-feeling. I don’t want to be human, a person, an idea, in your mind or my own; I want to not know mind. I want to destroy “me”; the idea of me, who is this person, who has and suffers and thinks and understands, who feeds their own ideas with more ideas and is sick and makes themselves sick and seeks freedom and escape from sickness. I am supposed to be grateful for my recovery. Why do I feel grateful for being more of who and what made and makes me sick? The entire being that is recovering is sick with itself, with what it is, which is a lie, sick or not, mentally ill or not, recovering or not.

I want nothing more to do with myself as “sick”, “mentally ill”, “recovering” and I radically reject and revolt from all such descriptions and self-descriptions. I am breaking with it all. I am not being held by it. Yes, there are drugs in my body that poison my brain, but my body and brain are not what I am. Yes, I am diagnosed and medicated, but the being to which those things happen is not created or recreated by them. I radically reject, destroy and transcend all these restrictions upon being. I factually don’t care any more for them. I am so much greater and more exalted than such descriptions. I have allowed myself to be enmeshed in it, and fed it, and made sick and somehow satiated with it, but it is ending. There is no more mental illness; no more recovery. There is nobody to which they happen.

I do not “accept myself”: there is no self to accept.

I do not “recover”: there is no recovery required; no being was sick.

I do not “heal”: all is instant and spontaneous.

I do not “reflect”: there is nobody there.

I do not “support”: all is free and empty; windows, no walls.

I do not want wellness: there is no sickness.

I do not regret anger: under the great sky the wind blows.

I do not seek help: Nobody wants it.

I do not reject or accept descriptions of me: Nobody here to receive.

I do not fear madness: Fear is madness.

 

You can read more of his work here:

 

Parenting and Bipolar

Yesterday I gave an interview to a trainee clinical psychologist for her thesis on parenting and bipolar disorder. I had been very nervous about it as I didn’t know what she would ask and what it might bring up for me, but it was a positive experience and it made me do a lot of thinking.

I thought I would write a little bit about what it’s like to have bipolar I diagnosis and be a parent. I have two children, one is thirteen and one is six, nearly seven. Both my children are doing very well at school, exceeding or matching grades in all subjects. They’re described as happy, kind, outgoing, capable and talented, at school. They are generally very well behaved and thoughtful, they have empathy and they’re creative in their own ways. Obviously, I am very proud, but I’m not trying to boast. When I said these things to the psychologist, I realized that despite this enormous issue: bipolar, we have all managed to get through it, and carry on.

The psychologist asked me about any difficulties parents with bipolar may face. There are endless difficulties. I said I thought being a parent with bipolar was almost like another form of bipolar in itself, as it has a whole other dimension. I’ve been a parent since I was seventeen, that’s thirteen years, and my eldest child has been through a great deal with me. When she was born I was very ill, depression mainly, and agitation. I also had racing thoughts and I self harmed regularly and habitually. I was suicidal. Basically I was going through a severe mixed episode. I fed her, cared for her in every way I could, but inside I felt so bad there aren’t words for it. This carried on for three years, then I was hospitalized and properly medicated, though I couldn’t say I had ever ‘recovered.’ At this time, I should have already been in services but had received a letter two years previous from my care co-ordinator to say she simply had too many people on her list and would have to pass me onto someone else, though she couldn’t say when this would happen. It never happened. This was gross negligence. The way I suffered during those years is not something I could wish on anyone.

When I was in hospital, my mum had to take care of my daughter. I was in for long periods of time, and when I would see her she would often go blank, and it was painful for both of us. She resented me for leaving her. I was ill constantly for all the years up to 2010, medications not working, and having my second child. After he was born in 2006 it was a downward spiral, and I felt it had no end. In 2010 I made a decision to commit suicide.  I had an elaborate plan, and it would have been devastating, but I was in so much pain I felt I was being tortured and I wasn’t rational, and I couldn’t think clearly about anything other than going through with it. My psychiatrist had been writing up a referral to a specialist bipolar unit and having tried all the medications they had to offer I felt completely defeated.  I wanted to give medication one last try, for my children, and thankfully, Depixol injections worked. They completely flattened my mania, my hallucinations, my agitation. Lithium has helped me to stop self harming, very effectively, and has stabilized my mood alongside lamotrigine which I believe has helped with depressive symptoms. I tell people I’m ‘stable’ but in reality it is a daily challenge and I have had to limit myself in so many ways to stay well enough to be a good parent. This past three years has been about building on all our strengths as a family, supporting each other and for me, keeping a routine and being focused on writing as my work and therapy. My psychiatrist asked me recently, do you think you’re a good mother, doing everything you can for your children? I could categorically say YES.

When I was manic my thoughts would race, colours and senses would be more intense, I would have a pressure to talk and talk, I would want to do lots of things and have lots of energy. My thoughts would be grandiose, and I would do anything for more stimulation, which for a lot of people would involve drink, drugs, sex or spending money, but in the case of a parent who has to stay and look after  children, I would ring people on the phone incessantly to talk, about anything, I would pace around the house feeling insane; I would need diazepam, and at one point, I was taking so much of it I was completely hooked .My body would be restless, I would need to move, I would shake, and not be able to lie down or sleep, and I would self harm because I couldn’t cope with the intensity of it. I would feel as though I was crazy; I remember a psychiatrist asking me what I wanted them to do and I told him I wanted them to take the top of my head off. When you’re with a toddler, or a teenager, it is the same: they are so over-stimulating, especially when you’re stuck in a house with them (and to be honest taking them anywhere in this state isn’t a good idea), it is overwhelming. My husband has had to take lots of time off work in the past to help me cope. A lot of people don’t want to be around you when you’re ill so you find a lot of your support is cut off. In hindsight, it can be understandable, because you’re irritable, you say things you wouldn’t normally say, you become enraged easily, you snap, you can’t hide your emotions.

When I was low the problems seemed endless: being so tired and sad, not having any motivation, crying, sleeping too much or too little, ruminating, self-persecutory thoughts and voices, hallucinations (when very high also), feeling a void inside nothing will ever fill. Pure despair. You have to cook, clean, get them to school/nursery, sort finances, sort shopping, go to parent’s evenings, after school events, wash them, clothe them, play with them, give them affection; and you think of nothing else all day but your own death and how you might accomplish it, how everyone would just be better off without you, how your husband will meet someone nicer who will make a nicer mother for your children (yes, this is how irrational you’ve become), but you’re too lost and exhausted to try. Either high or low, agitation and psychosis is something that would cripple me, and often, my husband would have to medicate me on chlorpromazine, which is a very old anti-psychotic but the only thing that ever worked, and lorazepam or diazepam, and put me in bed. When I’d wake it would begin again, the tension mounting, the anxiety, the agitation, the breaking down.

These episodes don’t last days, and even when I was ultra rapid cycling and very ill (mood-swings lasting hours and changing very erratically) it would go on for months. You’re probably wondering how the children coped. I tried hard to be there for them, talk to them, be open with them, and not let them down. But I have an acute sense of failure and every time I so much as had to go to bed to lie down, I woke up feeling like I had failed them and I couldn’t stand it and it fed into my bad feelings about myself. I believe very firmly that children are entitled to know what’s going on and should be allowed to be upset as it is a normal human reaction, to a parent going into hospital, or mummy getting upset, or being drowsy, or not being able to play, or being irritable. I found that others tried to pretend everything was alright, and gloss over things or sugar-coat them, to protect them. This, I have always thought, is damaging. Of course, you don’t want to devastate your children or upset them, but their natural emotions and reactions are an important part of their wellbeing, and shouldn’t be stifled. There are ways to comfort children, and be open and honest at the same time.

I believe that there needs to be centres for parents with severe enduring mental health problems, where they can take their children, receive treatment, and be around others in the same position. We need this provision, it is sadly lacking, adult mental health services have a huge chasm because they don’t make provisions for families. They make provisions for families whose children are suffering from mental health problems, as they did for me when I was a child, but not families in general, families who may feel very isolated and alone. I think that every family who goes through a parent suffering from mental illness should be offered family therapy as a matter of course. I also think that specialist personal assistants should be used in mental health services, especially for families. Practical support given for people who maybe haven’t got the support they need and need help doing practical things, while they are unwell. I think this could be even more beneficial that therapy in the long run, keeping families together and parents at home. It could save a lot of money on lengthy hospital stays, children having to go into care temporarily. Not once can I think of an instance when being a parent with bipolar was catered for or treated as an important thing, for me.  Even simple things like providing books and toys for waiting rooms in mental health clinics would make a difference, to people having to bring their children in with them. Otherwise, these places are blank, clinical and unfriendly. It’s almost as though professionals pretend your kids aren’t part of the picture, until they feel a need to involve child social services, which often isn’t necessary.

I recently took part in a computer-based bipolar support package, where I was filmed answering questions about parenting which would be made into a film which could be accessed online, to help other parents going through the same thing. I think this is marvellous, based at the Spectrum centre at Lancaster university. If anyone wants to know more they are on facebook. There are people out there trying to listen and make a difference, but as we all know, it all comes down to funding essentially, and I think we all know the situation there.

The psychologist asked me if there were any positives in being a parent with bipolar. Children are the best distraction the world has to offer. If I am agitated and I go walking with my son, who will talk to me about Spiderman and maths and Harry Potter, I feel ok, I get rid of some energy. We play scrabble, and although it is hard to stay focused, it keeps me focusing on something. We cook, we bake, we read books, we draw, we listen to music, we just get along. I have to stress that when it is severe none of these things are possible, but on a daily basis the children keep me in a good place with these distractions. My daughter and I have great conversations, about everything. I get so much joy from them, from seeing them happy, it is the biggest motivation I could ever have in my life. I write because I love them and want to do well at something in my life, and I stay reasonably stable, not just because of the medication, though it has helped enormously, but because I have them in my life and they are my purpose. The psychologist said she’s finding that a lot of people like me, as parents, are telling her similar things, that their children are flourishing, being labelled, ‘gifted and talented’ and are sensitive, kind and mature for their ages. I feel like I must have been doing something right, though obviously, these children have not been without their fair share of heartache over this. But I believe that children need experiences, and the emotional support and backing of their parent (s) or carers so that when they get older and things happen in their lives, they are prepared in part, and will learn quickly how to adapt and cope.

My daughter went to school one day and told the students and teacher in her Personal, Social and Health Education class that her mum has a mental illness. Later on, one girl sneered, oooh, your mum’s mentally ill! To which my daughter replied, ‘some people are. And?’

Is Mental Illness Ever A Gift?

 

4OD are showing a series of five minute films this week
posing the question Is mental illness ever a gift?, and it has prompted me to
answer the question for myself.

I’ve been asked this question before, very recently, by
someone who doesn’t have bipolar and said they found it hard to imagine what
bipolar is like. I think it is almost impossible for a person to imagine what
bipolar is like by explanation; I always feel like words are simply not enough,
you can run through the symptoms verbally but it doesn’t mean anything and if
you have never been slightly depressed or slightly high you could never imagine
how much worse being a manic depressive is.

So. I am a writer. I write virtually every day and have done
for the majority of my life. I’ve accumulated a lot of garbage and got rid of
most of it. I am happy with a percentage of my work, mainly my book A Body Made
of You which I wrote while experiencing a debilitating and life-threatening mixed
bipolar episode. Sometimes I try to pretend to myself that I was fine when I
wrote the book, that I just didn’t sleep because I didn’t need any sleep, and I
went into hospital because I was exhausted, not ill. But the reality is I was
off the scale and while most of the time this made it impossible to concentrate
enough to write, there were flashes of divine inspiration which I can read in
my words. Sometimes I feel that I
would do anything to have that back again, so I could write with that same
spark, but in reality without the medication that grounds me and keeps me
stable I might not even be alive never mind able to write good poems.

I am very proud of my book. I am proud that I have survived
and have written a book. I am proud of writing it under the conditions that I
did and it not just be a jumble and a mess, and I feel that it is the best
thing I have achieved.

But if you were to ask me if it was all worth it, for my
little first collection, I would have to firmly say no. And this is why:

When Dr. Prince at the child and adolescent psychiatric
outpatients unit told me I have bipolar I don’t remember at any point
understanding what he was saying. It meant nothing to me. I had been seeing
psychiatrists for a couple of years, hospital stays and being out of school
attending a child and family psychiatric unit. I was suffering, but I didn’t
know what it was. I thought it was all my fault, I thought I was being punished
for something or that I just wasn’t normal like everyone around me seemed to
be. Dr. Prince told me a few things. He told me that if I used class A drugs it
would take 48 hours for me to become addicted to them. He told me that I should
always swot up on science and maths lessons and be one step ahead of the
teacher and that I should become a doctor because it was the best profession
there is. He told me to always give a firm handshake. What he didn’t tell me
was that I’d end up pregnant at sixteen and in and out of hospitals until I was
28, losing people around me like flies and barely managing to stay alive
through it.

He didn’t tell me that I would get myself into situations
out of my control.

He didn’t tell me that I would have ideas that I simply
couldn’t realistically follow through.

He didn’t tell me that suicide attempts would do nothing but
hurt the people that love me.

He didn’t tell me that making it this far meant that I had a
far stronger survival instinct than I had imagined.

He didn’t tell me I’d waste a few of years of my life inside
institutions.

I have a weak handshake, I’m not addicted to class A drugs
and I’m crap at maths, so nothing he told me really was of any use to me at
all.

How can I say how bad it really is/was/might be? How can I
even say. I remember being drugged up to the eyeballs on a women’s ward for
weeks just sat shaking in the lounge room my thoughts and hallucinations just
humming around my head constantly, painfully, and me occasionally getting up to
smoke, and to cry and heave with agony in my room, and to take my pills. And one
day I just had a lucid moment, and I stood up, and it was raining outside and I
felt like someone punctured a hole in my heart and the bleeding wouldn’t stop.

I am struggling to find examples of the worst times because
mostly they’re too horrible for words and you really wouldn’t want to read
about them.

I’ve seen people devastated by mental illness. It’s more
pain than a person can imagine. I understand that for some people, the
creativity and the ideas and the passion and the motivation and the
intelligence and the daring can mean the world to them. I know that there are a
lot of people who wouldn’t come back without their illness.

But I would give anything not to have these regrets, these
memories, these scars. I regret my youth, I don’t have many good memories about
my past, moodswings were so profound in me that I struggled to cope with
everyday living. I feel like I have literally dragged myself through my life to
be here, where I can say that I am no longer manic, and I am no longer
depressed. I miss that tiny window of opportunity when I was high but not over
the edge and I could write, and boy could I write. Every week I wonder what it
will be like if I don’t go for my injection. I imagine myself full of life and
wit and inspiration and writing a new book. But in reality I would be
hallucinating, sleep deprived and suicidal.

So they can take my mental illness and shove it up their
arses, just for the record.

I know people who would argue that for the highs alone it’s
worth all the misery and the depression. But I don’t buy it. Even when euphoric
I wouldn’t give anything for a life of euphoria and elation. The highs damage people, if
not yourself then the people around you. You can’t function like that, you
become out of step with the world. I suppose with me the highs used to come on
so fast and when mania hit it wouldn’t be long before I spilled over the edge,
and my symptoms became mixed, which is worse than mania or depression because
the world can’t keep up with you but you’re in agony, not happy, not productive
just wild and suicidal.

If only we could take the parts that we like and if only our
medication would only medicate to a point and still allow for glimpses of
brilliance. But life’s not like that. Now I have to suck it up and take the
medication so that I can give me and my children a calm, structured and
wonderful life. I never want to be ill again. My triggers are stress and sleep
deprivation, so I take sleeping pills every night and I build my world around
the strong foundations of my family and dig my heels in. I’m a lucky girl, and
a stubborn one and I would not go down without a fight. But that’s what it has
been; a fight. I’ve won for now.

I used to say, I just want to be left alone, be ill and just
have people accept that that’s who I am, but you’re not allowed to be crazy,
even if you’re not hurting anyone. I was young, and I didn’t realise how much I
had hurt people. I often stopped my medication and I often became too depressed
to do anything at all. I thought that I was myself, that there was nothing
wrong with me it was all them. That
it was unreasonable for people to want to medicate me. I felt like this for
years and the price I’ve paid for it has been severe.

I know people and have seen people with their lives
completely ruined. So many people. I would hate to think that a message should
go out to people that people with mental illness have somehow more creativity
and amazing experiences and would want
not to change. To celebrate madness as though it were desirable, exotic in some
way. Because I believe that only a minority of cases would want to celebrate it.
Maybe I am wrong, I would love to know what other people think; not just about
bipolar. I’ve had this whirlwind life, full of drama and pain, and I wouldn’t
wish it on anybody. If I had to do it again without the illness I feel I would
have achieved more. Now there’s a deep dark well inside, which I’ve climbed,
and it has taken me years. But it’s still there, and I know if I slip I’ll fall
back in. All those years I’ve been fighting I could have done so much more. To
even imagine that at some point in the future I might have to go through it all
again is unbearable to me. It’s horrifying.

I don’t think it’s a part of who I am, it’s a separate
entity, a ghost, a shadow, it tags along sometimes, it trips me up. Who I am
remains more or less intact when you take it away. I’m sensitive, I care about
people, I love, I have compassion and empathy, I can express myself through
writing…I’ll celebrate that instead. I’m not a genius, or a high-flier or a
great success in life, but I’m here. Part of me still plays devil’s advocate: maybe
it has made me stronger, maybe it has made me more mature, more empathic, maybe
it’s given me the ability to write at all. When I look in the mirror I see how
the stress has aged me. I feel how the stress has aged me. What I wouldn’t give
to be young again without moodswings, able to enjoy my life. I’m an intelligent
person, I could have done a lot more with myself. It makes me sad.

I’d love to hear your story,

Thanks for stopping by x

 

 

Only The Tip Of The Iceberg…

This morning I attended the depot clinic where I get my depixol antipsychotic injection every Wednesday. The nurse I see there has been making me feel bad. One week she ‘forgot’ to close the blinds so people could see me outside. One week she was telling a student nurse that sometimes thin people come to the clinic and she’d need to judge for herself how deep the needle should go, but that she didn’t need to worry about that with me. Last week when she asked how I was feeling and I said I felt low she said, what’s up with you is it the anti-climax after Christmas or are you just not keeping busy enough? This week I told her I was better because I couldn’t be bothered and she said, there, you see, everyone has their ups and downs, that’s life. The most condescending thing you can ever say to a manic depressive.

It’s not just at the depot clinic. I was referred to the Community Restart team a while ago for someone to come and see me to help me get access to local community etc. I said I’d do it but I really didn’t need them to come round. When one of the women got here she immediately started to comment on what a nice house I had, how big it is and what nice possessions and ooh you have a piano and it’s better than my piano and ooh a nice telly. Each time she came round it was the same thing, with a frowning kind of, how can you afford to live like this… as though I should have nothing, I should be living in an untidy house in disrepair, my house should be full of rubbish, I should be swimming around in my own filth. I really should empty the bins out all over the floor before they arrive. I felt as though I had to justify myself, we won the telly in a fantasy football competition etc. Of course, I’m mentally ill, mentally ill people should have nothing, should not have better than what anyone else has got, should fail, should be bullied into attending inappropriate community events and should be suspected and should be the underclass. Should be phoned up and checked up on to make them feel completely useless.

No?

I feel degraded. I feel like the system has swallowed me up and had its fill of me and is about to spit me back out. There’s a pyramid system of allocating care now, the more stable you are the further up the pyramid you go until you go back to being under GP care. This is wrong, people with bipolar can go from being stable to manic in days, not weeks, can dip and keep dipping to the point of suicidal thoughts and those with a history of them will experience them very early on in onset of a depressive or mixed episode. This isn’t something you can go to your gp about. My care-coordinator must have hundreds of people in her care and admits that a great many are scheming their way to benefits and aren’t ill, and a lot don’t really warrant a care coordinator. So people are getting pushed out of the system. At the moment I am prone to thinking, well I don’t really need their input at the moment. But the nature of my illness is that it is unpredictable at times, erratic and  severe. I don’t want to have to work my way back through the system the next time I need its support, which is to be honest, almost a certainty. And people who don’t know will say if you expect something to happen then it will. People with bipolar know that you don’t get off scot free just because you take a load of pills and drugs that paralyse your system and do things to your brain that no-one’s really sure of. Some people are lucky, but most aren’t. Even medicated, moods break through and stress and life events can set the rollercoaster rolling again at the drop of a hat. It is almost impossible to drug someone and ‘level them out,’ most people end up having to function below ‘normal’ in a mild depression. There are people more vulnerable than me that won’t get the right help, because they don’t realise when they’re ill, because they come off and on medication and don’t access treatment because there is no-one there to help them do it or tell them when their behaviour becomes a problem. There is no easy solution. Continuity of care is a must. It is possible to get on the right track but it has taken me fifteen years to reach a period of reasonable stability. A lot of people don’t survive that long. People with mental health problems are stigmatised and are degraded and let down and I’m sure it is easier to get away with than most other branches of medicine.

 But I have to be grateful for the time being and suck it up and put up with this stuff. I have been feeling low, and it has been hard for me, but I’m not edging toward any extreme at the moment. I can feel it when it’s really hitting, and it normally collapses in a matter of days when I’m heading for a major depression. I know a lot of people in the profession desperately want to help, but there’s so many government targets that have to be met and real care is becoming so scarce. There aren’t enough hospital beds when people really need them, that is unequivocally true. The Crisis Team was an attempt at saving money but in my experience and from what I hear of other peoples’ experience, it can’t replace hospital admission and in too many cases lets the patient down. I can’t count how many times I felt let down by them. People not turning up, people not wanting to get involved after a self discharge, the phone ringing and ringing and no-one there to pick up, or someone at five in the morning when you’re high as a kite telling you that anyone can live off two hours sleep a night or to just go back to bed. They can’t intervene successfully.

I have had good, positive social workers/CPNs and I have had appalling ones. I have had care and support and I have been left reeling from bad experiences. I have so many things to complain about that I barely have the will to even start. Unfortunately for professionals who are doing their job, these bad experiences often far outweigh the positives. When I think about complaining, or voicing my opinion like this, it is like coming up against a giant in a boxing ring…

New Book Out!

This week I started group therapy. It’s almost completely user-led so I’m sure it will take some getting used to, but I’m going to stick with it for the next couple of weeks, at least. It’s good to be reminded that there are other people out there suffering the same diagnosis, listening to them, responding, generally feeling like other people can understand. I felt vulnerable at first but it was easy to open up. I sat with my name badge on and as we all took turns introducing ourselves I said, without any idea of what I was about to say, My name’s Melissa and this is the first time I’ve been stable since I was fifteen. And I got so choked up I didn’t think I’d be able to stay in the room. And I haven’t been able to cry for a year, so all of it was like a huge accumulation and it just had to be released. I couldn’t believe what I’d said, and the truth in it was just too much to take. But saying it to people who all nodded their heads and understood. Well it was so much more than what I’m used to, and it was so welcome.

I’ve been writing more fiction, some of which is ok, and have been enjoying working with characters and plots. My new Chipmunka book, Bite Your Tongue When You Give Me My Name came through the post this morning, it looks really good, shiny black paperback cover with a beautiful image by Eli Regan. All the work was written at various times when I have been ill, and I have tried not to censor it. The book is charged £10 plus postage, and will be available to buy from virtually every online bookstore you can think of; Amazon, Tesco, WHSmith, Blackwell’s. I must add, even though it’s twice as much, buy the paperback, the ebook is just for promotion but is nothing like the finished paperback as I had a lot of time to work on it afterward.

I’ve been incredibly happy. Drowsy, sleepy, but happy. I’ve been listening to y la bamba and reading Emily Dickinson, Lachlan MacKinnon and Elaine Feinstein. I’ve been sleeping so well, I’ve been eating well, I’ve been feeling well.  It’s not very interesting is it, stability. I’m joking.

Here are some quick links, take a look if you have five minutes

http://chipmunkapublishing.co.uk/shop/index.php?main_page=product_info&products_id=1748  Paperback Bite Your Tongue…

http://yesbutisitpoetry.blogspot.com/  Christodoulos Makris muses on the form.

http://www.we7.com/#/music/  Free music streaming, radio, very cool if you’re desperate to listen to that one song you seem to have misplaced.

http://pennedinthemargins.blogspot.com/ Tom Chiver’s blog site for Penned..

http://susannahrickards.blogspot.com/ Susannah Rickards, whose new short fiction collection has just been launched, winner of the Scott Prize..

http://www.theshortreview.com/  With Author interviews and exclusive reviews of short story collections, a comrehensive guide to short fiction collections.

So I’m going to get on with a story I began yesterday…

x

Anti-SkyRockets

I’ve seen a number of articles regarding anti-psychotic drugs, and I feel they don’t give a balanced view. Whenever I read about them it seems it’s a way to get at pharmaceutical companies, and although I agree that they are producing billion dollar industries, it is the medical profession that over-prescribe very potent major tranquillisers and anti-psychotics. The pharmaceutical companies just supply on demand.

Despite all the irresponsibility about how these drugs are prescribed and what for, and stories I’ve read about people having extreme reactions to them, including fatality, outbursts of uncharacteristic violence, severe confusion etc. there simply is a need for these drugs in psychiatry.

I often hear that these drugs are just bad, that they have so many terrible side-effects, that they turn you into zombies, that they make you apathetic. I have a history with these drugs, I have taken them since I was 20, I’m 28 now. It has taken eight years for me to find one that is suitable. I’ve taken respiridone, olanazapine, abilify, chlorpromazine, haloperidol, and others. The fact is, if you really are going to have to take them, you will have to live with side-effects, because they all have side effects and come with the appropriate details of any side effects you might get in the packet. It’s not hidden. There are rarely few side effects with anti-psychotics, it is highly likely or even certain that you will have some form of side effect.

Most people who need to take an anti-psychotic will stop and start them, or refuse them. They are not pleasant medications. There’s a high risk of weight gain (and mostly we’re talking stones, not pounds), restless body movements, bodily tics, agitation, and can become severe enough to have to stop the medication. The other main difficulty is drowsiness, with the exception of Abilify, these drugs will make you tired, to what degree depends on the person and the dose.

I needed to take them.

I take mood stabilisers, lithium and lamotrigine, but without the depixol injection I would be completely tense, rapid cycling moods, usually with mixed symptoms prevailing (the worst manifestation of the disorder), and hallucinations. Depixol is an anti-psychotic depot injection and it has saved my life. I have gained a lot of weight which I find hard to manage, I have drowsiness, restless legs and feet. That is far preferable to this time a year ago when every minute was agony, and there’s no melodrama meant, things simply were that awful.

I have interestingly been able to cope with the older drugs rather than the newer. Abilify (the website for abilify writes in bold ‘A medicine to help you move forward’), had me so wound up and hyperactive and hyper-alert that I wanted to throw myself under a truck. Olanzapine and respiridone were the worse culprits for weight gain and drowsiness, but they did work on the mixed symptoms. Chlorpromazine was always the choice to knock me senseless and put me in bed for the afternoon when I was just too high.

I don’t doubt that these drugs have taken years off my life. I don’t doubt that they’ll account for a worse health problem in later life. I often think, I would be so much happier without depixol, and I wish I could just be crazy and people not interfere but really I was begging them to give me something just to be able to calm down. I remember someone saying to me, they put all this money into the drugs surely they can come up with something that doesn’t fuck you up so much. I hate my body and my appearance, I hate my size, my skin, my lethargy. But I’m far from apathetic. I have all these nasty chemicals in my system but rather that than be dead, as I’m certain would be the case. I couldn’t have held on any longer even for the kids. Put like that, I suppose I’m saying that I can only be pleased that these drugs exist, and that I hope they are getting to the right people, and keeping them well. If you are taking anti-psychotics I can only sympathise with what you must be going through, and have been through, and it shouldn’t be happening, and I’m so sorry that it is.

The Essential Handbook…

I was in the library the other day and I picked up a book on display, something like The Essential Guide to Bipolar Disorder. It was white with rainbow coloured text and was quite thick. It looked like some light reading, like a cookery book. I had a look, of course all the usual details were there, symptoms for depression and mania and advice and medication etc. and I felt quite annoyed by it. This is something I feel a lot of the time, so bear with me. It looked sterile. It was a handbook, like you can buy a handbook to go to Rome but the experience far outweighs the facts a handbook can offer. I thought that people reading the book could have no sense of what it is like. Of course, having these kinds of books may help some people to get a better perspective but I also think that if someone can’t empathise, then they never will. Some people just don’t have it in them, and no book will bring them round. There is a new glossy magazine out now called Uncovered. It deals with issues around mental health. I think it’s a good thing to raise awareness but then I also hear from people working within social services that they are overrun with people trying to feign mental illness for benefits. I think that things like Uncovered can work for example with Post-Natal illness and Anxiety and Depression because it often takes a bit of a wake up to realise that you do need some help. But frankly, if you have bipolar or schizophrenia, you certainly won’t need a magazine or a book to tell you there’s anything wrong, or tell anyone around you, it will engulf you. 

Books don’t help me. They would however help younger people being diagnosed, struggling in school and needing psychiatric care. That’s when children can’t understand, and feel abnormal. I don’t believe mental illness should be normalised, how can you normalise something which clearly isn’t normal…but kids need it putting out there so they know they’re not alone. A book helped me when I was fifteen and had been given a diagnosis, nobody in the family bothered to read it.

What really gets to me is all the stuff that people don’t see. What it’s like on a psychiatric ward, the noise, the aggression, the sadness, the tears, the threats, the apathy, the suicidal, the self-harm, the drugs, the degradation, the humiliation, the bullying, the relationships, the madness, the psychosis, the dirt, the pain. And all the many millions of pills and injections. That’s why I back chipmunka, people should read about these experiences, these real experiences, not handbooks. We should encourage kids to write about their experiences, to put them into words, to shout out loud.

Nobody can write about despair in any way which other people can imagine. Despair goes along in silence, it atrophies, it corrodes. There is no language for it. When people talk about the 1 in 4, normalising mental health problems sometimes I wonder what kind of an image that creates. Is it really one in which people can be more tolerant. At the clinic I go to for my depot there is a big board with posters up of famous people and successful people and there are quotes…and they all look so well, and are we to believe then that everyone should be able to for example be a boss of a company or a celebrity and also suffer from severe enduring mental health problems. It is not possible for everyone to find a level where they can continue to work or find gainful employment and still manage their symptoms. Some people are not ever well, through no fault of their own. Some people find the answers and the strength and the insight after many years of suffering and can make good of it. I am well for the first time since I was about ten years old and I’m getting to a place where I can achieve and I can go out and I can speak out. When I see the patients waiting in the depot clinic reading the posters, then staring at their feet and shuffling their legs and wringing their hands and trying hard to stay awake, I think, there’s nothing pretty about this, and I think that these are the people they should be putting on posters. I think, what must it be like to have these people that haven’t been slashing their arms all their lives and haven’t been sectioned and haven’t been on smack and crack and drinking their livers to mush and failing at relationships, friendships, life, love…what must it be like when you’re that down you don’t know what the next day will bring and you live with a severe enduring mental health disorder and you have these people shoved in front of you, Ruby Wax, Stephen Fry. I know that the majority of people reading this will think I’m wrong, and cruel and not appreciating the huge awareness campaign there’s been over the past few years. I just want it to be real. Not glossy magazines, not handbooks. Not posters, not glaring out at misery.

If anyone reading this is suffering, write it down, someone one day will want to read it. Be real. Be loud. Don’t be sterile.

I suppose there is a balanced way of looking at it, that there is awareness (even though I don’t believe awareness ever affects the people who need to be more aware but helps those who want to try and understand) and that being 1 in 4 sounds less lonely than you being the only person you know. There are conditions that people need to feel confident about approaching their doctor about, like anxiety disorders and depression, which are common and which can be treated either with medication or other support. I think it’s especially prevalent in men not to seek help and suffering needlessly. I believe that if there is something wrong and you can take something for it then you’d be stupid to go on suffering when it’s available to you. Awareness is helpful. Awareness probably saves lives, people who are so alone they commit suicide, awareness and support does save lives. I think I just wish that people knew. I mean really knew. How I’ve survived this long I’ll never know. I hope Uncovered is a success and that handbooks continue to explain all the things that they are capable of explaining for family and friends. But I still feel that the stigma hasn’t gone anywhere, it’s just getting shoved around the room.