Monthly Archives: March 2014

The irresistible draw of madness

My very real fear of one day losing my sense, losing my connection to reality, losing my mind, is always and forever connected with an absolute fascination with stories of madness.

My favourite Shakespeare play is perhaps Hamlet (and I say that cautiously given my deep love for Measure for Measure, Henry IV part 1 & 2, and The Tempest).  Aside from the tremendous social commentary and brilliant first tv role of David Tennant, Takin’ Over the Asylum remains one of my favourite mini series’.  Crime and Punishment, A Scanner Darkly, The Outsider, The Yellow Wallpaper, and so many more which focus on the descent of madness on a mind, dominate my list of favourite books.

I often wonder what it is that draws me to such texts.  Recently I read Flowers for Algernon, which whilst it doesn’t deal with madness as such, does examine the sensation of a split mind, of watching one’s own intellect slipping away.  Madness and intellect are linked, for me.  Which isn’t to say I believe uneducated people exist in a state of madness, rather that I associate sanity with the ability to trust my own judgement, be assured that my logic is solid and reasoning rational and allows me to learn, and express myself in intelligible ways.  One of the difficult things about coming to terms with cyclothymia has been the feeling of not trusting my own judgement when hypomanic.

I’m not sure how other cyclothymic folk experience hypomania, but for me, it’s often a sensation of knowing two contradictory things at once. Namely, that taking an impulsive and occasionally dangerous action is a good idea, and, simultaneously knowing that my ability to make that decision is being influenced by an irrationality uncharacteristic of me in normal life.

I also know that I can’t trust everything my eyes and ears tell me; I don’t experience auditory or visual hallucinations as such, but something about the heightening of the senses that hypomania brings on ends with me continually whipping round at something I thought I saw out of the corner of my eye, or turning off the tv in order to hear again the chirp, or scream, or ring I’m sure I noticed on the very edge of hearing.  There’s never anything there.

Stories of madness offer me a comforting point of recognition in these experiences, they also caution me of what may wait around the corner, of what is looming.  For every story which romanticises madness as freedom and a new, truer way of seeing (Prozac Nation, The Bell Jar, I’m looking at you) there is another offering terrifying isolation, disenfranchisement from everything that once mattered, that does matter.  I seek an answer from these media – where is the line? When do we cross it? How can we tell? And it is the latter which I seek most vigorously.  Instead, what the stories portray is how narrow the line between madness and sanity is, they show that we more often dance on it than cross irrevocably from one side to the other.  

I think that’s what I’m coming to understand about cyclothymia; it’s a state of continually dancing on the line, of often feeling that all that separates us from the oblivion of insanity is letting go, giving in, releasing ourselves to our most overwhelming impulses.  Peculiarly, this state of being categorises us all as suffering a ‘mild’ mental health issue.

Psychosis sees no incongruity between perception and reality, sanity sees perception and reality as being mutually constructed but equal and never at odds.  Cyclothymia offers both and neither.  Continually shifting between confusion and clarity, happiness and confidence and doubt and misery.  Fluctuating between a sense of seeing the heart of life and finding it horrible when depressed, and feeling the world can be bent to my will when manic.  And somewhere, in the middle, trying to hold these shifting perceptions together, trying to balance and order and understand it all, is my ‘sane’ mind, the one that emerges between the downswings and the upswings, the one I think of as me and not cyclothymia.

But what all the texts and films and stories tell us is that true madness emerges when we fail to integrate the parts of ourselves, so am I all of these things – madness, sanity, balance, or none of them?  I keep looking for an answer, I think that’s why I’m still drawn to such stories.  Whilst I live in such a liminal space I think I will remain restless to understand which way the chips will eventually fall, or if they will fall at all.

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Love me, love my cyclothymia

A question that seems to linger in my mind, year after year, is ‘where do I end and my cyclothymia begin?’

I think it’s a question that plagues most people with mental health issues.  We understand so much of who we are as being about how we respond to things. Personality and emotions are so tied together, both in how we describe people and how we understand why we, or others, act.  And if, as this logical chain insists, if we are no more than a collection of symptoms then we are less of a person than a psychologically ‘typical’ person.

So I begin to stack things up in two piles; things I do because of cyclothymia and things I do because I’m me.  In the cyclothymia pile is shopping sprees – I hated shopping for most of my life and still do the majority of the time, but every now and again I pass like a whirlwind through the high street and online with an anxious, hypomanic glee.  In the ‘me’ pile is academia – I’ve always been bookish, I’ve always worked hard, thoroughly, even obsessively at school, sixth form and university.  Academia asks for a lot from you and offers little back (more on this another time, read this until then), it has to be passion or it’s nothing and often it punishes you with self doubt and uncertainty.  Back to the cyclothymia pile we’ve got ‘quick temper’.  Although is that where it belongs?

This is the thing about symptoms of psychological disorders, they so often cross over into what we think of as personality traits.  I remember having a furious temper all my life, so was that an early signal of cyclothymia or is that just the person I am?  This slippery slope analysis doesn’t stop there.  I try and list the things I love, am passionate about and wonder why I care about them.  Queer theory work in academia, Francis Bacon in art, Manic Street Preachers in music.

But the way I relate to these things is, inextricably, tied up with cyclothymia.  Queer theory can be difficult and complex and cross-disciplinary, when I’m hypomanic I enjoy the detail and complexity and run away with ideas about how to overhaul the discipline.  Francis Bacon’s work scares me when I’m both hypomanic and depressed, but in different ways, and I find I can never look away.  It’s as though the bodies he distorts are rearranged in the same way the whole world looks to me.  Manic Street Preachers offer me solace in sadness, they offer a point to become obsessive over when I am anxious, depressed, or having that very specific type of hypomania which makes the inside of my skull itch and I’m scared of everything and need to have one thing to cling to and be absorbed by.

I don’t know where cyclothymia ends and I begin.  I’m not sure it possible to disentangle the two.  It’s going to remain a topic I dwell on, not least of all because the spectre of all-consuming mental illness always looms, threatening to rob me of myself.  Does it matter?  Perhaps at the heart of my anxiety around this is the belief that cyclothymia is something bad.  And that leads me to ask if the way to release myself from the tangle of asking who I am and what cyclothymia has made me, is instead to embrace the different ways I look at the world, the different relationships I have with the things I care about because of the fluctuating chemicals in my brain.

I don’t subscribe to a belief that mental illness can offer a more accurate or inspired perception of the world, but perhaps it’s time I let go of the belief that cyclothymia is somehow holding me back from being me.  Me and cyclothymia are a package deal.  In order to love myself, I need to embrace everything that comes along in that tangled mess, and so does anyone else who I might meet – although that latter one might be harder to come by.

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Things I want you to know if you have cyclothymia

When I was first diagnosed with cyclothymia in 2009, I followed the advice of the psychiatrist – along with heeding his dire warnings of the inevitability of developing ‘full blown’ bipolar – and dutifully began a lengthy course of anti-psychotics (Seroquel) and anti-depressants (Mirtazipine).

They hit my body hard – I put on about 2 stone and tottered on the edge of being clinically overweight.  I slept 12 hours a day and when I missed a dose I felt like I had bugs crawling around in my skull.  After about a year battling through such fog, fatigue and feelings of ‘fugliness’ I decided to come off the meds and give self management a crack.  I approached my GP for assistance with this. but he refused to assist as I – foolishly – admitted I still had all the same mood symptoms which had prompted the psychiatrist to prescribe them.

So I did it alone, cold turkey.

I sometimes wonder, 2 years on, what damage I did to my brain chemistry in coming off meds like I did – I certainly wouldn’t recommend anyone else end their usage in that way and I think the ‘bounce back’ effect such a sudden removal of chemicals had on my brain, caused the 6 months or so following that decision to be extremely difficult.  It really underlines the need for better patient advocacy and support for mental health patients.  Nonetheless, here I am.

A combination of life events and going completely med-free for the first time in many, many years, caused a number of physical symptoms and illnesses to arise and I now suffer from a small number of physical problems relating to anxiety and stress which were diagnosed after rounds of physical investigation and tests.  Management of aforementioned physical ills can be done through drugs or through lifestyle changes and self management.  After experimenting with medication, as I did with psychiatric drugs, I found a more holistic route to managing my physical ailments.

What would I tell someone else looking for advice on how to live with cyclothymia based on my several years accumulated knowledge?  A few things;

  • As ever, remember – tell yourself, your family, your friends, your doctor – this is not a mild condition, it is a milder form of a very serious condition.  It destroys lives and rips apart relationships. Do not let anyone, or yourself, underestimate it.  But don’t fear it.
  • Cyclothymia kills – when you wake up depressed you lose all sense of perspective, you believe you’ve felt this way for days, weeks, months, not hours.  You can only remember any other state as being terrifying, free wheeling mania and, because you are depressed, all you feel is anxiety and guilt over the times you were manic.  People with cyclothymia – as with other psychiatric, depressive conditions – make stupid, short-sighted, snap deicisions.  And some of those decisions you don’t – can’t – come back from.  Never let being told you have a ‘mild’ condition stop you from picking up a phone/walking into A&E/screaming for help.  Do not become a victim of cyclothymia.
  • You probably won’t get better from cyclothymia or ‘get over it’.  But you will, very likely, find a way to manage it.  Sometimes the highs and the lows will be worse than others, sometimes they will be better.  Cyclothymia is a living thing – it waxes and wanes, grows and shrinks.  If you can work – alone, with friends, in therapy, with a CBT workbook,anything, to find a way to identify what exacerbates or contributes to periods of acute depression or unending mania then do it – in the long run it will help you tremendously.
  • You will not definitely get ‘full blown’ bipolar.  Psychiatrists do not have crystal balls, they have not met every person with cyclothymia and followed them for the whole of their lives, they cannot know how your mental health will unfold over the next 10, 20, 50 years.  Do not let them bully you into decisions because they are telling you to be afraid.   Ask for an advocate – such as from the charity Mind – to be present at your meetings.  If you have sympathetic family and friends, ask them what they think about you taking meds; my friends helped me decide it was the right choice for me when the psychiatrist told me I needed to take anti-psychotics and anti-depressants, my friends also confirmed what I suspected when I felt I was ready and able to live med free.
  • Don’t believe that living ‘med free’ means living ‘medical help free’.  Sometimes I get to a point where I haven’t slept for a week, or I haven’t sat down for 48 hours, or I can’t stop cleaning the kitchen because the little anxious ticks have blindsided me and I’m useless.  When that happens I seek out the help I need – sometimes that is sleeping tablets or anti-anxiety medication (although I recognise I abuse meds and alcohol, so I choose the least addictive, least easy to abuse option) and sometimes it is a talking therapy session.  I am lucky in that I am currently enrolled at a university so I can use their counselling services for free and at short notice.  If you have a good GP and/or CPN you should be able to quickly access short term talking or counselling therapy on the NHS.  If you have money, you can always go private.
  • You haven’t failed: sometimes I go months without acute mood swings – I recognise they are there and I feel the ebb and flow of the ups and downs but they don’t inhibit my movement or life – sometimes I get the very worst of the ups and the downs for a few months in succession.  Whilst I am not able to recognise it in the midst of the black – and most likely you won’t be able to either – I try and reflect back on those times afterwards, see if I can identify what contributed to such a bad period, or what I might be able to do differently, but I also do something nice for myself – buy a new cd, have a long bath, take a day to myself watching my favourite movies – you don’t fail when cyclothymia symptoms become pronounced, you succeed when they fuck off again.
  • You are in control; ultimately, how you handle the ups and downs, how you respond to other people/how you treat them (it might be an explanation, but it’s not an excuse for being rude/evasive), and how angry you feel about cyclothymia ‘picking’ you, is up to you.  Let it consume you and it will.  Focus on it and you will see nothing else in your life.  Kick it in the arse whenever you can, forge strong and meaningful relationships and friendships with as much or as little explanation as you want, make plans to help yourself – I give myself permission to nap after work when I am particularly low, I set a ‘2 day’ limit on time off work without a doctor’s note for when I am so anxious or unhappy I can’t face myself in the mirror.  Yes it is hard, and yes sometimes it does feel like a unending battle, but it is all I know and sometimes, albeit only sometimes, I’m pretty sure I’m a step and a half ahead of where I was in 2009.

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Cyclothymia is not mild

The first thing I did when I received a copy of the letter from the psychiatrist to my GP was to Google this strange new diagnosis; cyclothymia. I had been in the mental health services system since I was 16 with anxiety, then ‘disordered eating’ and, most recently and for the longest time, depression. Deep down, I always knew I was only ever telling GPs, therapists, counsellors, and psychiatrists half the story; it wasn’t only feeling unhappy that made me afraid of my own mind, sometimes it was being unstoppable, unsilenceable, inspired, frantic…manic.

Every result I found on Google described my experiences up until then; often undiagnosed or misidiagnosed as unipolar depression due to the fact people can make allowances in their life and ‘get by’ with the manic end of cyclothymia, alternating periods of high and low mood with no more than 6-8 weeks without any symptoms, quick temper, hypersomnia and insomnia, easily distracted, lack of concentration…..but again and again, in page after page the same word kept cropping up; “mild”.

‘Mild’ was like a kick in the teeth to me. I had gone to my GP on my knees; I had maxed out my credit cards in a 4 hour spending spree, had a pregnancy scare after unsafe, impulsive sex with a stranger, I’d been sleeping 4 hours a night and my head had been so noisy with thoughts, ideas, self-recrimination, and I had had enough. He had scribbled it all down and got me in to see a psychiatrist who prescribedanti-psychotics on top of the anti-depressants I was already taking. The anti-psychotics were like a hammer to my exhausted mind but I luxuriated in the quietness of my mind.  ‘Finally!’ I thought, ‘I know what’s wrong with me; bipolar is a real illness, with real, famous sufferers who nobody blames for their inability to get out of bed some days, or stop talking on others!’  Later, finding out, on site after site, that what I was suffering was ‘mild’, and frequently undiagnosed as people with it are busy getting on with their lives rather than going to their doctors, the triumph went out of my relief; was I just weaker than all these invisible, untreated sufferers?  Was it just something fundamentally unpleasant about me that meant I found it so hard to maintain relationships rather than, as had thought for a while there, the impact of dramatic and unpredictable mood changes?

Eventually though, after looking at a lot of websites, I started finding small online communities of other people with cyclothymia.  They told stories that I recognised myself; alienating friends, family and partners through their unpredictable changes of mood, being unable to hold down a job or work reliably because some days depression might body slam them back onto bed when their alarm goes off or because on a manic day it’s better to drive to the other side of the country or take a short break in Europe than go into the office.  They were telling each other something important; cyclothymia isn’t mild, it is a milder manifestion of bipolar symptoms.  Bipolar is to cyclothymia as a rock shattered in a massive earthquake is to a rock worn down to dust by steady, reliable, constant erosion; either way it gets worn away*.

The problem with the classification of cyclothymia as a mild mood disorder is that it gives rise to any number of misconceptions about what sufferers of cyclothymia, like me, experience. Trying to explain anything about the unpredictability and disruptiveness of your moods when they are officially ‘mild’, sounds like posturing and attention seeking. My depressive periods may only last a week or two at a time, but in the middle of them I can’t see the end, and I can’t remember ever being better. My manic periods might be read by people who don’t know me so well as hyperactivitiy or enthusiasm, but they leave me exhausted, embarrassed, and frequently poorer.

And the saddest, most dangerous thing about calling cyclothymia mild is that not only do some mental health professionals not take it seriously (I was advised it would eventually become ‘full blown bipolar’ and more help would be available to me then, but to get on with things until then) but some people diagnosed with it begin to believe they are exaggerating, or overstating their troubles.  I frequently remind myself that it is acceptable to shout for help when nobody is listening – that when a depressive mood takes a particularly viscous hold, or I have racing-negative thoughts, or I am so manic I can’t sit down or sleep – that those things are as real, as urgent and serious as any other manifestation of a mood disorder and I, just like everyone else with cyclothymia, deserve to be helped.

* This analogy was borrowed (with permission) from this great post

This post was originally published on the Mind blog, on Tuesday 26th March 2014 but has since been deleted in their site overhaul so the above link is via the Wayback Machine

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