Well being and wank

I have an ambivalent relationship to the concept of ‘wellbeing’ and the connected advice and recommendations that go along. On the one hand, I recognise there are some compelling results from scientific studies that support the suggestion that taking time to engage in mindfulness exercises, or sport, or creative hobbies can have a significant impact on the maintenance of good mental health. On the other hand, I hear ‘mindfulness’ and I shut down, the working class chip on my shoulder grows so heavy it topples me over, and I snort at the suggestion I stop working and do that ‘pile of wank’.

The idea of taking time for yourself in order to ‘nurture’ yourself (I can’t even write that without scare quotes, this is how deep it goes!) and place your emotional, intangible needs above, say, doing some hard work, is one I am ill at ease with.  I’ve blamed this reluctance to acknowledge there may be something useful in all this “new age, wishy washy, hippy nonsense” on my working class upbringing. But perhaps that’s not all there is too it.

On the one hand, I come from a family who – rightly – value hard work. I was brought up to believe that you will find pride in yourself and your life if you work hard, and believe in what you’re doing. It’s an idea that’s guided me well, these 32 years.  I’ve pushed on and always sought out something to work on, and work for, in my life. It has rewarded me with pride in my accomplishments, and a sense of purpose in a range of different jobs – regardless of how they are regarded by others.

The trouble is, this isn’t enough.  You also need a sense of yourself which expands beyond your work, and which can’t be utterly destroyed if you fail, or lose your job, or can’t pull off the task you set yourself this time. It’s also not enough if working is the thing that’s made you exhausted and low.

Perhaps this is why it’s so hard for me to talk about my mental health, and my ‘wellbeing’.

Right now I’m on fixed term contracts, working two jobs, and staring down the barrel of unemployment/uncertain employment in September. I’m also riding out a low.  After a farcically bad Friday where I tried to socialise with friends and colleagues, and only succeeded in making a lot of people worry about me, I found I needed to confront ‘wellbeing’.

Friday night’s disaster was predictable. I’ve worked flat out for 10 weeks without a break – yes, I’ve even been working weekends. I was exhausted. What I needed on Friday was not socialising, it was time. I needed time before I put on my ‘nice’ clothes (somewhere in the classification of clothes above ‘clean’ but below ‘wedding guest’) and headed out the door.  I needed time before I had a rushed dinner and sent a message to say I was on my way to the pub. I needed time before I confirmed the time and place and invited more people to join us.  And yet I still did all those things. Still pushed forward and pushed myself to do the thing I knew I didn’t want to, and perhaps couldn’t. Because I most often view socialising as another job. Something you do almost mechanically, by numbers. And when I ‘tick off’ whatever it is, I trust I’ll get the reward of pride, or personal value, or wellbeing.

But cyclothymia doesn’t work like that.

On Friday night I couldn’t speak. And everything everyone said hurt. Being there didn’t work. Working hard at going through the motions, didn’t work.

Saturday, I slept. Then I walked. For three hours I walked. And on Sunday I slept. And then I swam. I need to do that more this week, I can feel that already. I need to not work – both ‘traditional’ work and my self-designated social-stuff work. This is wellbeing.  Getting head space, disconnecting from the internet, from friends, from work, from responsibilities and deadlines, and from pressures and insecurities of life. Taking time to feel my body do good things, taking time to notice spring exploding from the gardens and parks, taking time to feel something outside of my mind.

I need that space, the time, the not working. But I’m afraid to take it and admit I need it. Because if that works – if not working works – then where does my self-worth come from? Because if I can be emotionally ‘rewarded’ by not working, then will that make the value of work less? And if I lose that route to value, will I ever be able to find a way to gain a sense of worth again?

Wellbeing is, then, a terrifying spin of the wheel for me. A fear that gaining anything positive from not working will be cancelled out by undermining the positive things I gain from half-killing myself to work and socialise. I wish I could say that realising this has revolutionised my relationship to taking time for self-care activities like walking, exercising, and spending time in nature, but it hasn’t. Next week I’ll start working on articles and funding bids and job applications again. And I’ll likely reassure myself that this is the best place to get my sense of worth from, and Saturday’s long walk was just a blip, a one-off alternative.

Besides, I’m cured/never needed self-care/just got lazy.

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Coming Out

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Recently there has been an explosion of profile pictures appearing on my feed – all of them friends of friends so far – which use some combination of these ‘badges’.  They seem to resemble rather low-stakes bingo cards.  Personally, I’m pretty sceptical about how far posting a list of diagnoses on facebook does anything to ‘end stigma’.

There is something of a pervasive idea that saying “I have this thing” will cause stigma around mental ill health – and more specifically the behaviours and symptoms associated with mental ill health – to evaporate.

These mental health bingo cards seem to aim to show how ‘normal’ or ‘just like you’ people with mental health issues are; ‘surprise! we’re hiding in plain sight’.  But why should we have to make this argument or disclosure? Why should that huge responsibility fall to any of us as individuals? Indeed, will it do anything to change how these conditions and their symptoms are viewed in general? I think this tactic might be a backwards way of thinking about stigma.

Some time ago now, I wrote about what I think are good questions to ask yourself if you are deciding whether to disclose your mental health problems. That was focused on how coming out can produce identifiable, specific changes in your professional life or friendships.  The idea that ‘coming out’ to all of your facebook friends (and their friends) will alter the overall perception of mental ill health is, by contrast, a vague and massive aim.  Without context, without further information, how much can a list of conditions, some of them rare or relatively unknown, alter perceptions?

Let me put it another way: my brother has schizophrenia.  He has been sectioned numerous times, has been very unwell and exhibited all the classic symptoms including psychosis – with its delusions, hallucinations and disordered thinking and speech.  He was and has been immediately and unequivocally altered and recognisably mad.

I understand what schizophrenia means. I understand that my brother would never harm me or anyone else and I know the stats on people with mental health illnesses being more likely to be victims of violent crime than perpetrators. I know that the causes of schizophrenia are genetic and environmental.  I know my brother’s schizophrenia was hastened by use of illegal drugs.  I know his brain has been irrevocably altered by the severity of his illness.

Given all of the above, I’d class myself as not holding any particular stigma or fear of people with schizophrenia.  But I’m not any more enthusiastic to go and speak with the mad person on the bus who is talking to invisible friends or foe.  I’m not going to sit next to the person who looks terrified or angry or manic on the train. I’m not going to enjoy spending time with anyone, including my brother, who is in the grips of schizophrenia.

Knowledge of the normalness, of the ‘just like me’ nature of people who have schizophrenia does not lessen my disinclination to get up close and personal with some erratic, occasionally frightening, and often confusing behaviours.  Stigma around mental ill health is about more than knowing, it’s about something much deeper, and perhaps something which cannot actually be ‘defeated’ or ‘ended’.

Rather than trying to kick start some sort of ‘mad-pride’, isn’t it better to target misinformation about mental ill health (depression isn’t laziness, anxiety isn’t being too coddled, schizophrenia doesn’t make a murderer, etc etc) and encourage people to understand mental illness in the context of wider physical health?  ‘Stigma’ is amorphous and complex and to do with a lot more than lack of knowledge.  It relates to distaste, social norms of behaviour, comfort, the ability to actually have an inter-personal relationships.

From knowledge though, we might move towards compassion, empathy.  Even if that empathy can’t and won’t translate into spontaneous interactions with the person raving at the invisible people on the street corner, it will make things better in other ways.  It will allow people space, and perhaps alert people to the need for properly funded and resourced mental health services. It will help people realise that symptoms are just that – symptoms of an illness which can be managed or controlled.  Symptoms – source of stigma – are not the people – the ones cheerfully shouting ‘bingo!’ on facebook this week.

Most importantly, the work to address misinformation on mental illnesses can be done by anyone. Anyone can share links to websites like Mind and the NHS.  Anyone can look up information on these conditions and advocate for better understanding. It takes the weight of responsibility off us to turn ourselves into one-man-ambassadors and asks everyone to join together to better understand a range of illnesses facing many, many people.

We are not our illnesses.  Listing all of the diagnoses we have won’t change how people feel about the expression of the symptoms of those illnesses.  Explaining what those illnesses mean, can help change how people connected to those symptoms are understood.  But it won’t change more general, gut reactions to visual and social signs of mental ill health any more than a badge saying you have had food poisoning would make people feel warmer about vomiting and diarrhea.

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January 8, 2017 · 9:18 pm

Unwelcome noise

It’s been some time since I last blogged, happily this is largely because I have had a fairly stable period. Inevitably though, this has to end.

Over the last two months my moods have been – and I apologise for cliché – a rollercoaster.

I’m currently taking a break from Twitter as it seemed to have become primarily a platform for miscommunication rather than positive communication and networking. Initially I placed blame for this outside of myself – why did everyone assume I was being shady? Why did everyone jump to the worst conclusion? As always though, I endeavour to look inside myself with the same cynicism I regard others with and, perhaps inevitably, I found failings there too.

I realised the number one issue with twitter was that, as my mood plummeted and I communicated this, my friends and followers weren’t able to offer me what I wanted: a cure. People weren’t reading imaginary hostility in my tweets; I waa angry with them, with everyone.

I tweet with reasonable frequency about my mood – primarily because when it’s bad it’s the only thing I can think about. For this reason I suspect my followers are rather tired of hearing how wretched I feel – and as an aside, this really underlines how imperfect language is for expressing emotion. Whilst it looks boringly repetitive to anyone reading, each low has its own distinct flavour and texture. From the inside, it’s always new, always different, and frequently unexpected. Perhaps, then, it’s natural people have little left to say when I once again bemoan my low mood.

But I need something, and find myself desperately scrambling for a solution, a balm, a shortcut to lifting the cloud and moving on.

Which leads me to getting angry with my Twitter followers for not offering the cure I become inexplicably certain they are withholding. All these people seem to know how to be happy, to know how not to be alone, to know how to live – why won’t they share their secret? Why won’t they, in 140 characters, do what medication and psychiatrists couldn’t, and save me from myself?

And round and round my mind goes. Refreshing my mentions every few minutes, increasingly furious that nobody is proffering the solution. Increasingly paranoid, increasingly frantic.

So I stepped in my own way and took twitter out of the picture – you can’t be furious nobody is replying to a tweet you didn’t send, right?

Well, perhaps inevitably given we’re dealing with illogical thought patterns and, as of two days ago, that horrible anxious kind of hypomania, yes, you can still be angry. Why haven’t these people, whom I have unfairly decided have The Answer, not come to find me elsewhere online? Doesn’t that just prove I was unwelcome noise on twitter? Why do I have to do this alone? What did I do wrong? Why won’t anyone tell me how to fix myself?

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Stress Intolerance

A few months ago I saw an ad in the local hospital for a bipolar support group.  It said “having bipolar is like being allergic to stress”.  That’s about the most accurate description I’ve seen, I think.

I haven’t posted much on here in the last few months because I have been finishing up my doctoral thesis, then I took a holiday (my first in 5 years) and now I’m working on job applications.  It has been, in every sense, an exceptionally stressful few months.

It is perhaps curious, then, that it is only in the last week, a month and a half after I submitted my thesis, a month since I got back from a lovely holiday, and a week after I got a job application in, that the crushing anxiety, panic and low mood has really set in.

Whilst bipolar is an ‘allergy’ to stress, the reaction is often delayed and it can be hard to deal with that.  Immediately after submitting my thesis I braced myself for a downswing, cleared my diary and prepared to meltdown.  But it didn’t come. ‘Perhaps it’s not going to!’ I thought. ‘I’ll just get on with preparing for my holiday!’.  In the first couple of days of my holiday, whilst I was in Zagreb, I began to feel the black edging into the edges of my thinking – ‘ah! here it is! Best take myself off somewhere quiet to mope’.  But again, it never really came through – I travelled south in Croatia to Split and the sun was out and my troubles seemed to lift. ‘Maybe I really am cured!’ I thought.  ‘Perhaps the secret cure for cyclothymia is writing 80,000 words followed by sunshine!’

There was a nagging sense, deep inside me, that all that was happening was that the holiday was delaying the inevitable.  That low, that allergic reaction, was just waiting for me, biding it’s time.

Buoyed along by a busy schedule and post-holiday glow (literal and metaphorical, managed to get a lovely tan in 7 days in the sun), the week following my holiday was pretty solid.  But, little by little, I began to slow down. Waking later, sleeping longer, heating up meals from the freezer instead of creating culinary masterpieces from scratch.  It was coming.  Having terrible dreams, waking up sweating and gasping for breath.  The first signs of the inevitable reaction – the mental health equivalent of itchy skin, fuzzy tongue, sneezing.

And so, we come to today. Woke up, after another night of terrible dreams. barely able to walk in a straight line (anyone else experience low swing as significant impairment in physical-coordination?) Ate breakfast.  Fell asleep again for 2 hours.  Stumbled about for a few hours, tried to boost mood with music, ended up crying to Vivaldi, of all things.  Tried to work – read the same sentence of an article 4 times in a row before giving up.  Tried to sew – took me three times as long as normal to do a small section, abandoned. Considered visiting family, decided it wasn’t worth risk of an argument. Digestive system, which has been merrily melting down in response to stress since May, reaching it’s peak in pain.

Do I feel stressed? No. Do I have any urgent jobs, bills, or commitments? No. The peak stress is gone.  There are, of course, still various tasks and events on the horizon which will be challenging and likely stressful, but nothing in the immediate future. This is cyclothymia.  This is what stress does.  It goes in, gets absorbed, and then, when there’s nothing pressing, when there is time, it’s released throughout your mind and body, disrupting all the vital systems, leaving you on your knees amidst apparent calm.

I’m falling to pieces in a house well stocked with food, bills paid, jobs done.  I’m struggling to sleep in a large bed when I don’t have an alarm set for the morning and I couldn’t tell you the name of the thing that is worrying me half to death.

For people with bipolar spectrum conditions, stress is so like an allergen.  It’s a constant presence in life, ebbing and flowing with the season and the location. And it is almost impossible to protect yourself from – it sneaks into your world, leaking through the cracks in whatever plans you make or precautions you take.

Right now, it feels like the UK is in meltdown.  As the government and new Prime Minister push ahead on the disastrous Brexit plan, the main opposition party is in disarray and entirely incapable of coordinating a strenuous response to the inevitable public funding cuts, Brexit, and the terrifying rise in hate crime and hate speech.  This is stressful.  And, along with the undefined worries which already plague me, I can feel my mind absorbing it all, quietly storing it away, ready to top up my anxiety at any moment.

Sometimes it feels like cyclothymia disqualifies you from living in the world at all.

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Unpopular Opinion.

I’ve been sitting on this post for a long time.  Partly because it’s really personal, but partly because I know this is not the right ‘party line’.

I do not deserve to be loved.  Do not deserve a relationship.  This is because having cyclothymia makes me a bad person who is unpleasant to be around and takes a lot more than I can give.

Why do I think this? In a word: experience.

I had a fairly long term relationship whose ending was, in large part, hastened by my ex’s unwillingness to live with my mood swings any longer.  When we got together, she was concerned and upset to learn I had such low moods and used to do everything she could to help – offer me a compassionate ear, surprise me with little trinkets to cheer me up, hold me close as I cried.  As time went by, she grew impatient.  Why was I occasionally self harming ? Why did I wake up in the morning with a black cloud over my head with no explanation why? Why didn’t CBT ‘fix’ (her word) me? Why did I hate myself which such violence and merrily embark on an argument about how justified that self loathing was if she tried to refute it? Why didn’t I warn her I was going to be unhappy? Why did lack of sleep turn me into a bear with a sore head?

At the time our relationship finally ended, I didn’t have a diagnosis of cyclothymia.  I had been rigorously pursuing help via the endless bureaucracy of the NHS, I had been working to recognise what made everything worse and what helped, but I had come to realise it was going to be a matter of managing, not curing, whatever was wrong with my mood.  She was not willing to live with that.  So she went elsewhere and found a woman who wasn’t mad.  Months later, she finally broke it off with me.

I recently read Matt Haig’s Reasons to Stay Alive after seeing it recommended on Buzzfeed. I didn’t care for it – beyond the “on a long enough time line, it’ll get better” advice there wasn’t much in it.  What struck me was that the primary reason Haig has to stay alive is the unwavering and patient support of his now-wife.  She sits and waits for his depression to pass, she listens to him talk, she accepts that perfectly ordinary things represent overwhelming sources of anxiety and he can’t always face them, she supports him financially whilst he is unwell, she loves him without condition.

This seems absurd to me.  How can anyone ask that of someone? How can anyone accept that sort of support from their partner when they are being so utterly unloveable?

I’m single  I’ve been single almost constantly since the aforementioned relationship ended 6 and a half years ago.  I had one 3 month relationship and one 2 monther since then.  When do you tell a new partner you’re nuts? What do you do when your mood plummets? What do you do when, in the first flush of passion and excitement, you wake up one morning at their place feeling utterly wretched? (My solution has been to dress-and-run with vague excuses about having an appointment and then disappearing for a day or two).  When do you reveal that the reason you are single at 32 is because you are a dreadful human being so much of the time? A boring, argumentative, self-centred, miserable puddle of self loathing and hopelessness.

Because, when all is said and done, that’s who I am with cyclothymia when my mood plummets. My speech and thought is slow and circular.  Anxiety sometimes accompanies that low making me irrational, irritable and paranoid.  I wake up in cold sweats from nightmares (my ex used to complain a lot about my nightmares and sweats, and the sweats I got as a side effect on various medications) – not a nice person to be in bed with.

You have to be superhuman the rest of the time to make being with that depressed person worthwhile, and frankly, that is beyond me.

So, I am alone.

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The Not So Secret Life of the Manic Depressive

On Monday of this week, 15th February, BBC showed a documentary [still available to watch on iPlayer if you are in the UK]  following up on Stephen Fry’s landmark documentary on living with bipolar disorder, The Secret Life of the Manic Depressive, which was shown 10 years ago.  I remember watching that documentary vividly.  So much of what I heard and saw from the contributors resonated with me – I didn’t have a diagnosis of cyclothymia then, but I did have suspicions.

This blog is part live blog, part reflection on the show. In bold is the key event/moment in the show, the rest of the paragraph is my commentary which I hope will be intelligible even if you have not watched the programme.

Stephen Fry, post suicide attempt, decides to see psychiatrist – and then he sees one!  This is evidence of a BIG difference between private healthcare and dealing with the NHS. And he tells us he was immediately admitted to hospital. Again, wildly different than experience of NHS – with the enormous and unending cuts to NHS mental health services there are no beds. And in most cases there is no possibility of hospitalisation without a section – and a good deal reliable rumours suggest doctors are avoiding sectioning people who need it because they simply have nowhere to place them.  Stephen Fry’s experience is (absurdly given how essential mental health treatment is) one heavily inflected by his economic privilege.

Kids in the school talking about how “bipolar” is used as an insult really drill to the heart of living with bipolar spectrum disorder.  People do not like it.  It’s not charming, it’s not represented as ‘useful’ (however inaccurate that is) and featured in a regular show, it’s not cool.  It’s also something I reflect on a lot in terms of disclosing my mental health issues – I am always conscious that once people know my diagnosis they will rationalise or dismiss everything I do or say in reference to that label – enthusiastic? Nope, just bipolar.  Annoyed? Nope, bipolar. Inspired? Loud? Introverted? All symptoms.  You stop being a person.

Stephen Fry’s psychiatrist is talking about how difficult travel and crossing time zones can be to managing your mood. It reminds me of the difficulties I had whilst I backpacking round the world with my then-partner.  She would become furious that I was exhausted by our flights across time zones, and furious my mood would plummet with my exhaustion, and furious I could not explain why I was so unhappy so suddenly.  It made me anxious, guilty, furious at myself.  I turned her lack of understanding inwards and began to hate myself for all the things I wasn’t; all the ways I couldn’t be.  We split up many years ago now, and since then I have learnt a great deal about my needs in terms of rest and sleep – but those experiences burned me and I find it difficult to imagine being in a relationship ever again.  Who would live with cyclothymia if they didn’t have to? That’s what dating someone with cyclothymia means; you have it, we have it.

Narrator is talking about frequency of self-medication versus reluctance to take prescribed pills.  Sadly, the show seems to dismiss this as bipolar folk simply being unwilling to put up with side effects and preferring to manage our conditions in other ways.  This obviously resonates with me – I’ve written before about self-medicating and my attempts to manage my cyclothymia with lifestyle and other changes.  But, as I’ve also written, the choice between medication side effects and uncontrolled mood swings is nowhere near as simple as psychiatrists would have you believe, or this program suggests.  Medication side effects are brutal.  Not enough is done to facilitate good medication choices, not enough is done to help people manage the side effects, not enough is done to acknowledge how destructive side effects can be on every other part of your life.

I note that, in reference to Scott’s experience, the psychiatrist shrugs off his query/anxiety that he will be ‘like a zombie’ on mood stabilisers, exactly the conversation I had with a psychiatrist, and it proved completely inaccurate.  I was zombified.  It became untenable for me to live like that.  No follow-up on Scott after he doubles his lithium dose, I hope it works for him, I fear it won’t.  I note also, there’s no discussion of talking therapies or alternative approaches to treatment – it’s ‘medication or nothing’ on the NHS, regardless of how ill fitting that may be for an individual.  This issue – and the considerable weight of evidence which suggests medication-as-only-intervention is an inadequate way to manage mental ill health – is offered in response to the show in this blog by Richard Bentall, Professor of Clinical Psychology at Liverpool University.

Rachel’s story of experiencing her worst lows at night, alone, as a teenager resonates with me.  The difficulty for parents to identify more-than-average-teenage-melancholia is enormous. The story of medical services failing to identify her mania after she jumped from a balcony is all too common.  The discussion between Rachel and her CPN about sectioning her if she becomes a danger to herself in future is really concerning for me, because it’s evidence of fire-fighting rather than working on managing and improving her overall health through a variety of interventions (not just medication, which is all they say she has currently) now.  But I may be making too many assumptions with not enough information here.

It strikes me there is an enormous selection bias in this show towards people who believe it is easier now than ever to speak about mental health issues and receive a positive response.  Because if you’ve not disclosed to your friends, wider family, whatever, it’s because you are aware (or sure) of the potential for a negative reaction – so you’re certainly not going to blow your cover by contributing to this show.  If you’ve experienced negative responses you are not going to keep talking – this idea that ‘we’ can only combat stigma by talking is incredibly problematic for me.

When you are subsumed under stigma, you simply cannot speak, cannot contribute to some ill defined, under funded campaign to combat stigma.  Time to Talk Day came and went this year and I did not mark it on here.  Why? Because I didn’t talk about my mental health on that day to anyone who did not already know.  Had any of my friends who do not know about my cyclothymia asked how I was, I would not have disclosed my difficulties to them – not least of all because my mood was pretty good on the 4th of February, but also because a charity-sponsored day does not make people more prepared to deal with the mental vomit that is chronic mental ill health and the ongoing needs and demands that generates for me.

On Time to Talk Day  I asked all my friends how they were and made myself available to them in all the ways I always do.  But whilst starting a conversation may be a manageable goal, it’s continuing conversations about mental health that is the hard thing, and it’s continuing conversations which will actually start to change or erode stigma, and generate sufficient public feeling to pressure the government to actually invest in mental health services.

The ‘not so secret life of the manic depressive’? For me, save for this blog, it’s still a secret. Stigma around mental ill health is still enormous. And there is still so little out there to help people like me – and people, perhaps, like you – live with bipolar spectrum disorders including cyclothymia; regardless of well intentioned attempts of shows like this to change that.

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David Bowie, hypomania, itchy brain and grief

Those of you who follow me on twitter will know that the death of David Bowie (and it’s taken me 2 and a half weeks to be able to put the ‘d’ word next to his name) hit me hard. He was and is an idol of mine and, like so many others, I grew up with him – image, music, films, words – in my life.  I crafted myself, came to know myself, through and alongside him and I am still, as so many others are, trying to reconcile myself to a world, and a future, without David Bowie.

I have thought often, over the life of this blog, about what constitutes an ‘on topic’ post and what subject material is too tangential to include here.  David Bowie straddles that divide.

From a purely personal point of view, the very real grief I felt in the days immediately following the announcement of David Bowie’s death (still not comfortable putting that word with his name) was absolute and consuming.  Grief is an extraordinary emotion, utterly inescapable and totally consuming. Despite the fact that grief mimics so many of the emotions of various mental illnesses (insomnia, anxiety, restlessness, dysthymia) I never mistake it for that or fear I have crossed into the darker side of cyclothymic symptoms.  Grief is raw.  And it is exhausting.

So exhausting, in fact, that a week after David Bowie died I found myself spiralling up to the familiar cloud of hypomania.  It was one of those rare hypomanic periods were I welcomed the excess of energy and overriding sense of well-being.  I needed respite from my grief and my brain offered it’s own solution.   I was still immersed in my reflection on David Bowie’s life and work, but with a cushion between me and the raw pain of loss.

With hypomania, unfortunately, there must always come the crash.  The downswing.  And come it did, bouncing me out of the week with numb sadness and a listlessness which persists to today, despite the most crushing elements of sadness having largely dissipated.

Music has always been a refuge for me, a refuge from my thoughts, a distraction from my emotions and, most often, a method of illustration or enhancement of my feelings at times I struggle to find expression.  David Bowie, like me, had a brother with schizophrenia.  Like me, his proximity to such absorbing and total madness scared him.  He ran, as I do, from what he feared was inside him and experimented with the limits of his sanity.  Coming down, sometimes, in pieces on the wrong side of that blurred line.

During hypomania I often enjoy the excesses of The Rise and Fall of Ziggy Stardust and the Spiders from Mars.  I empathise with the isolation and paranoia expressed on Station to Station.  When I am in a downswing, the abstract soundscapes of Low and Heroes provide solace.  The quite reflection and acceptance of mortality on Heathen and The Next Day offer me reassurance without being brash and insistent.  But one album which I can never reconcile myself with is Aladdin Sane.

Today, as so often is the case immediately following or immediately preceding a mood cycle, I have what I describe as ‘itchy brain’. A sort of internal restlessness which differs from hypomania in that it doesn’t urge me to action, but tickles and scratches at the edges of my consciousness demanding something I can not understand or deliver.  I think of it as the sensation of homesickness when you are at home. A rumbling, restless stomach which seems to cry hunger after a large meal. A sensation that you have lost something and would miss it, if only you could remember what it was.

I hate this feeling.

I decided to give Aladdin Sane another try; perhaps it could offer the solution to the question I am not quite able to form, the lost thing I don’t remember having.  I listen to Aladdin Sane very infrequently and unlike all the other Bowie albums, I have never bonded with it, never kept it on repeat on my stereo for weeks at a time.  Never memorised each line.

Today, I think I finally honed in on what it is that makes me keep it at arms length; it scares me.  Aladdin Sane, the character, was, Bowie said, schizophrenic.  Such characterisation is thrown around carelessly – how often I’ve heard energetic, frenetic paintings or music described as schizophrenic, or wildly reasoned academic theories described in that way.  But for Aladdin Sane, I think it echoes a truth.

The discordant compositions and use of instrumentation across the album, spread across the tracks, catching you off guard as we switch from the melodic Prettiest Star to the frantic – and to me, impenetrable – Lady Grinning Soul are just two small elements in the landscape of unease which the album creates for me.  Drive-In Saturday feels close to stadium rock but then Panic in Detroit comes in and you’re wrong footed again.

Numerous reviews and retrospectives suggest that Bowie himself was losing his grip on his own sanity through the pressure of creating, sustaining, and embodying Aladdin Sane (and Ziggy) during this period.  I’m not surprised.  Delving into that album feels like letting go of my grip on my own mind.  The music is consuming, it seems to surround you and drag you down to the fractured and frantic world of Aladdin Sane. I feel trapped and I feel manic when I listen to that album.

Which brings me to a conclusion of I don’t know what.  Bowie made me feel less alone with my fear and fascination with madness.  He showed me the possibilities of letting go of your desperate grasp of sanity and the freedom which can come from allowing yourself to express emotions and experiences beyond the rigid boundaries of ‘sanity’.  But he is also a cautionary tale; Aladdin Sane was a step too far, a threat too great, a disruption too unstable.  And, for me, I think that the album scares me because it reiterates just how close one can come to falling over that line and getting stuck.  It calls to parts of my mind – which feel as though they are getting switched on and spun round, made dizzy by the compositions on that album – and it makes me aware they still exist, even though I may not listen to them, or awaken them often.

Aladdin Sane is the fear of madness writ large. It is exhilarating but terrifying journey through what might be, and through what is always nearby.

And I suppose, one of the greatest things I am mourning, is losing a man I am sure still has a lot to teach me about navigating ones own mind and ones own sanity.  Because I feel alone again.

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New Year, Same Brain

Happy new year blog readers!

I hope you all had a restful festivemas and enjoyed a break from work or study if you were able to take one.

It’s been a strange few months for me. I had an operation on a long standing (6 years!) shoulder injury at the end of November which meant a frantic month beforehand as I tried to get ahead of various deadlines I had expected to work up to in December and January. It’s the first time I’ve had an operation and whilst it all went smoothly from a medical point of view, I had a slightly distressing experience coming round from anaesthetic getting very confused and argumentative, and the overall recovery from the anaesthetic was very, very slow. Inevitably my mood went right down whilst I was laid up, and the fatigue post-surgery (which the nurse at my GP surgery assured me wasn’t unusual but also not common) and pain mimicked and/or caused so many symptoms of cyclothymia downswing (hypersomnia, lack of appetite, anxiety, spontaneous crying) it was hard to disentangle brain mood and body mood (the latter being how I think of low mood which has an identifiable or environmental cause).

As December drew to a close my mood picked up as my energy began to return and my pain began to ease up, I started feeling more myself and enthusiastic to get back to work. Just in time for my usual new year downswing…!

New year is a hard time for a lot of people, I think, so much expectation that you will launch yourself into a new year full of energy and ambition and achieve something monumental. Come new year there are always so many prompts to reflect on your year gone by, and somehow “survived” never seems a good enough achievement for 12 months of life. And of course there’s the vague fatigue which a week of over indulgence and under activity always seems to cause.

Which I suppose are all good reasons – body mood reasons, as I put it above – for the low mood and vague, self destructive impulses which are gradually swamping me this week. Cause is not the same as solution though, unfortunately. So what can we do to tackle the New Year Dip? All the solutions I can think of end up reinforcing the artificial importance of January as the month of resolutions and change. So I’m thinking small. This month will be more work, more productive use of my time (less mindless games on my phone!), more finishing the stuff I’ve started (like all those drafts stored up on this blog!) and more acceptance of the things I achieve as worthy in and of themselves, and not in comparison to what people around me get done in a week, month, or year.

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World Mental Health Day

I planned to post yesterday in recognition (celebration doesn’t quite fit does it?) of World Mental Health Day but my home broadband is on the blink.  Although, posting a day ‘late’ sort of illustrates what I want to talk about today.

I’ve always been a bit sceptical about specific ‘days’ for various causes, awareness raising or similar because what does it mean to say there is only one day you need to stand against homophobia? Or only one day on which bisexuals become visible? Or only one day on which we need to try and prevent suicide?

I like the idea of rallying people to a single day, bringing the energy together all at once for one big bang of impact.  I understand none of us have the energy to fight, full whack, every day, for each and every cause that has a day. But how many people think about these causes on other days? How many people thought about the importance of campaigning for better funding for NHS mental health services today? How many will think about it tomorrow? How many will act on it next week? Next month?

I don’t have much confidence in ‘awareness’ days. I don’t think they shift how people think of things in any significant way. And I think it’s too easy for politicians, celebrities, and anyone else with only a passing or superficial interest in these topics to ignore the ongoing issues of underfunded mental health services, and WCA-driven suicides (to mention just two of a hundred pressing issues) if they have paid lip-service to ‘caring’ and being ‘active’ on those things in the news and papers the day before.

Ultimately too, for me and for so many of you reading this, ‘mental health day’ is every day of our lives. Thinking about how my mental health is today (good, bad, hypomanic, depressed, stable, wobbly, neutral…) is the most consistent, basic way in which having a mental health problem has reshaped my life.  Even when my mood is fine – neutral, not at either end of a swing – contemplation of my mental health is the foundation of my day. How do I feel this morning? How much can I do? When will this stable mood end? How much can I do before then? What should I commit to now if I might be miserable next week. For this reason, days like World Mental Health Day seem like another reminder of my difference from the cognitively normal who get to neatly end their contemplation of mental health with the conclusion of the day.

What do you think? Does World Mental Health Day mean something significant for you? Does it achieve more than my cynical rendering acknowledges?

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The Problem With Pills

I’ve written a few times on this blog about my decision to manage my cyclothymia without meds. And I’ve mentioned how distressing, difficult, and inadvisable my experiences of coming off all meds cold turkey and without the support or supervision of my GP.  Today I’m talking about my experience of being prescribed the last meds I took for cyclothymia and why that experience has scared me so much I am disinclined to ever try again.

This isn’t an easy topic to write about and I think I’ve only ever spoken about my feelings around this once, to one person.  I also want to prequel this with my usual warning: I am not anti-meds, I advocate people making the right treatment choices for them, with all the necessary information when making that choice. I’m also not a medical expert; these are reflections on my experience and some pieces of information I’ve found which may, or may not, explain some of my experiences

I took anti-depressants without more than 6 months cessation from the age of 16 to 24.  I can’t remember a time when I had symptoms of depression for which I was originally medicated but didn’t also have hypomanic symptoms. I was always cyclothymic, I just never told my GP, psychiatrist, or CPNs this so it was several years before I was diagnosed and treated for the condition – cyclothymia – which I had.

By the time I was 21 I had taken 6 or 7 different antidepressants.  In that time, 2 of them had worked well.  I got fairly good results with the second one I tried – lofepramine – worked well for over a year, I chose to gradually reduce my dose in conjunction with support from my GP in order to be med free (and ‘recovered’, I thought) for my first year at university.  After about 3 months at university I felt I was becoming depressed again and visited my new GP. She was happy to let me start on lofepramine again; this time, however, it didn’t work.  I went through 3 more antidepressants and finally found mirtazapine.  I took it and was largely fine – I still experienced hypomanic swings but generally the grinding lows were alleviated.  Fast forward another 6 years in which I’d been consistently on mirtazapine but had attempted, unsuccessfully, to reduce my dose and come off entirely. 6 years in which I fucked around quite a bit with the dose and ultimately felt it wasn’t working at all any more.  I believe that getting through all of those types of antidepressants, coming on and off of them (with and without medical advice) may have caused me to experience something called tardive dysphoria (which is admittedly not clearly proven or understood).  Additionally, I think the long period of time I took mirtazapine may have had the effect of making me partly resistant to antidepressants; something called antidepressant tachyphylaxis.  Ultimately, I found myself desperate, unhappy and ready to admit I had more problematic moods than just low ones.  This was the first step in what became my diagnosis of cyclothymia which I’ve written about previously.

It’s what happened next that I want to talk about.

I was prescribed seroquel to take in addition to mirtazapine. I was anxious about taking it.  I asked the brusque I-haven’t-got-time-for-this and I-don’t-get-paid-enough-to-deal-with-stupid-kids-like-you psychiatrist if taking seroquel (an anti-psychotic) would make me a zombie.  This was a deep-seated fear; my understanding of anti-psychotics was entirely shaped by visiting my brother whilst he was sectioned in a mental hospital when I was 11 and him being so drugged up he could barely speak or walk. The psychiatrist laughed at my question (an all-too-common experience I have with mental health professionals) and said “No, no, we won’t make you a zombie”.

That was it.  That was the extent of the discussion we had about the medication I was being prescribed.

I went home and googled.  Because of course I did.  I learnt, immediately, that the 300mg I had been prescribed per day was relatively high, and that every site said that that dosage should be achieved gradually.  I had no means to ‘work up’ to 300mg, the tablets weren’t easily divisible.  So I simply started.

Seroquel was, and is, brutal.  It did quieten my mind and that was what I needed at that time.  But it took me too far beyond quiet.  It did precisely what I feared, precisely what was laughed off by the psychiatrist: it zombified me.

I was slow to think, slow to speak, slow to wake.  I piled on weight – something I had already done as a result of taking mirtazapine – and became physically heavy as well as intellectually and emotionally slow.  Everything stopped.

When I had a review a fortnight later with the psychiatrist he enquired after my symptoms, I reported my hypomania had subsided and I wasn’t depressed –  mostly because I couldn’t feel anything. He asked if there were any problems; I complained of the hypersomnia, mental slowness, morning hangover. He said they were all to be expected.

That was it. Consultation over. I never saw him again.

A few months passed and I asked my GP about the side effects which were becoming increasingly difficult to bear. He said he could not advise me because he was not an expert on that medication but suggested that as it was working I should keep taking the medication.

Nobody was interested in my quality of life.  Nobody was interested in taking the time to help me find the correct therapeutic dose.  Nobody cared that I couldn’t function for at least 14 hours out of every 24 in which I took my dose of seroquel and mirtazapine.

Months passed.  I moved house and GP.  I visited my new GP and requested assistance in coming off the seroquel as I had decided I could no longer live with the side effects. He asked me one question; “do you still have the symptoms for which you were prescribed this medication?”.  He phrased it in this way because he did not know why I had been prescribed it. He did not ask what specific diagnosis or symptoms I had. I replied yes, I still experienced dulled sensations of ups and downs. His answer was absolute; “I think if you are still experiencing the symptoms then you must stay on the seroquel. It could be dangerous to come off”.

No discussion. No alternatives.  Just a sense of brutal efficiency.

It is like being asked to cut down a tree; you are offered two tools, a hand saw or a nuclear warhead. And you choose the nuke. People appeal “but, the nuke will destroy everything around the tree and change everything, can’t you use the saw?” and the reply comes “why does it matter? You want the tree gone, the tree will be gone. You didn’t say anything about keeping the grass, the flowers, the soil when you asked us to rid the world of this particular tree!”.

I made the choice, the lonely difficult choice, to come off seroquel, and mirtazapine. I had lost all confidence in medication at this point. I did it alone. I did it cold turkey. And it hurt.  Nobody told me it would hurt, nobody told me it was dangerous. Nobody told me when I began taking either of these drugs that there were clear and specific issues which could be caused by withdrawal.  I was trapped. Nobody told me I was walking into a chemical trap when I began taking these pills.

Why are mental health patients not briefed on the side effects – long term, short term, and withdrawal related – of drugs? Why are we presumed to be incapable of making informed choices? Why is the medical opinion always that absolute cessation of symptoms is more important than quality of life?

I believe that I was given the wrong dose of seroquel.  I think it may have even been a mistake in how much I was actually prescribed versus how much the psychiatrist was intending to prescribe. I know of people with similar conditions who are prescribed not even one sixth of that dose and nobody cared to either check or resolve that mistake. It terrifies me to think I crushed my brain with a chemical that was entirely disproportionate to the problem, and which may well have damaged some functions permanently.

I think seroquel broke my body. I suffer chronic digestive problems and migraines now.  I suffered neither of these things before taking seroquel.  They both emerged within 2 months of stopping seroquel and have persisted for more than 5 years.

I think the treatment and lack of discussion I experienced in relation to going on, and coming off, seroquel have scarred me emotionally. I did not feel I had any control over my own health.  My own sense of wellbeing was utterly and completely dismissed.  I felt stigmatised by the GP who implied I may be a danger if I came off a medication which was suppressing hypomania, the GP who took no time to understand what it was the seroquel was being used to treat. I felt ashamed of this condition and I felt afraid of who I was on and off medication.  It’s taken a long time to work through that.

Ultimately, my trust in the mental health services in this country was entirely destroyed in the series of events which surrounded my time on and off seroquel.  And the worst thing is: it simply did not need to be like this.

All I needed was choice, information, discussion.  I needed responsive care which takes into account the needs and wishes of the patient.  A model of care which actually prioritises quality of care over efficiency of patients through the door and out in the world, drugged up to the eyeballs.

I needed information on the risks of trying multiple antidepressants. Information on the risks and consequences of going on and off medication with and without medical advice with regard to it making relapse more likely, and developing resistance to the meds.

I needed to be treated like a person. Not a chemical reaction which could be successfully neutralised.

All too often, pills are used as a simple solution to what is in fact a complex issue.  Too often pills are placed before the person. Pills are the absolute, the thing that is right and complaints from the person of pain, side effects, and poor life quality are inconvenient asides which can be shrugged off, swept away, ushered out the door.

I think there might be a combination of medication out there which could make my life better.  I am much too afraid to try again.  Terrified of even worse side effects, even more catastrophic long term consequences. I won’t try again. I live in fear of ever being ill enough that my choice to that end is removed.  And it should really, really never have been like this.

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