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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Thinking about chronic mental ill health

I’ve been reflecting recently on the way I view my own mental health.  I write often on here, and on twitter, about hitting a ‘hypomanic period’ or a ‘depressive period’ because, as I leap from one to another, I think of them as separate events.  But not only does a hypomanic ‘period’ inevitably lead into a depressive one, they aren’t isolated incidents.  They are, cumulatively, cyclothymia itself.

It’s been useful (necessary?) for me, up to now, to think of them as separate events which I pass between and through rather than thinking of them, along with my ‘stable’ periods, as a whole, and a connected manifestation of cyclothymia.  I needed to think of them as distinct periods which had clear starts and ends because then I am not always ‘within’ cyclothymia – I didn’t know how else to conceptualise it, how else to describe it without suggesting it defined my entire life.  Increasingly, this kind of thinking has made me feel more despairing about experiencing highs and lows; why can I never stamp those emotions down permanently? Why do those feelings keep resurfacing when I beat them down last time? What am I doing wrong that I can’t win the war?

I’m thinking, today, about the language of chronic illness.  I found this article an interesting read: 5 ways you’re not ‘living’ with chronic illness which recommends some shifts in how we think about our own chronic ill health in order to prevent it taking over/directing one’s entire life.  When I decided to stop therapy and come off meds I believe I addressed the first point – stop looking for the why.  There are many, many theories from genetic to social and beyond that propose reasons why individuals develop cyclothymia and other conditions; none of them offer me a solution. So why was I pursuing treatments which offered me little help but were founded on one or more of those theories?  As I’ve said before, med free is not the right choice for everyone, but I got so little from the various drug treatments I tried, walking away instead of pouring more energy into finding the ‘miracle’ cure for me was the right way to stop living under cyclothymia and start living with it.

Point 2 is also something I’m fortunate I’ve been able to achieve.  

Point 3 gives me pause though; you’re not living with chronic illness if you’re hating yourself.  Self-loathing is both symptomatic of cyclothymia and caused by it.  I, like many other people I have spoken to with this illness, have lost things and people that mattered because of some of the ways cyclothymia manifests itself in both action and personality.  And, as I mention above, I come to hate myself for not being able to fix myself, for not being able to simply step out of this restrictive jacket of cyclothymia and into a life of cheerful ease.  Which leads me, as it does the article, into point 4; you’re not living with chronic illness if you’re fighting it.  This doesn’t mean stop trying to improve my health and manage my illness; it means accepting a paradigm shift from thinking of it as something to be ‘cured‘ or ‘fixed’ to thinking of it as something to be managed, contained and yes, as the article’s title says, lived with.

I am not failing because the ups and downs keep coming. I am not [and I struggle to write this, but I must try to explore the idea] unlovable because I have mood swings.  I am coping.  I am managing to get through my life in lots of ways that are great, and celebratory.  I am not a fighter – I am resilient.  Winning (if we must persist with the language of a fight) with chronic illness like cyclothymia, means carrying on each day and finding and using new ways to make life easier, moods more manageable, and life more fulfilled.

For example, right now I’m once again in a particularly brutal down-swing.  And I find myself compulsively harming myself; simply to contain my emotional extremes, in order to, for example, prevent myself from crying on the bus home, or from weeping during a party.  If I think of each down-swing as a separate event, I have no explanation for my self injurious behaviour.  

If I think of all my down-swings as part of a single experience of mental ill health (which of course, is precisely what it is and why my entire emotional experience is diagnosed with a single condition) then my current behaviour is simply a resurgence of a symptom I have less frequently than some others. It’s just a ‘flare up’ of one of the least pleasant elements of this illness. And if that’s true, it’s not that I’ve totally failed to maintain my previous progress, it’s just that, this time, the down-swing is particularly intense and as long as I keep moving forward (point 5 from the article) after this, and keep thinking of what I can do to make those symptoms less destructive and emerge less frequently (perhaps by identifying what has pushed me that bit further this time – stress?) then I am living with cyclothymia. I am still in control.

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Sleep

I am obsessed with sleep.

How much did I get last night? What’s my average this week? This month? How many times did I wake up last night? What arrangement of pillows gives me the best sleep? Did I sleep too much? Do I have a real headache or have I slept too much/too little? I could go on and on.

Sleep – too much or too little – both reflects my current mental state, and dictates it.  When I’m on a fairly steady keel I find I sleep a solid 8 hours, usually waking once, invariably waking groggy (I’ve never been a morning person) but rested.  Running into, and during, a depressive period I sleep terribly but frequently – upwards of 10 hours at night and often napping during the day – and walk around in a fog of exhaustion and anxiety.  During manic periods I sleep little, sometimes as few as 3 or 4 hours a night

I have a sleep tracker on my phone and have been coveting a fit-bit ever since I learnt they too track your sleep. Right now my sleep tracker tells a sad story – more than a week of sleep below my ‘ideal’ 8.5 hour line punctuated by 1 night of 11 hour sleep followed by an especially miserable 5.5 hours.  The mood cost of this? Anxiety, exhaustion, slow thinking, poor attention span and a niggling feeling the world is about to fall down.  Am I sleeping badly because I’m in a low or am I in a low because I’m sleeping badly?

There is quite a bit out there in internet-land about the importance of good sleep patterns if you have bipolar [spectrum] disorder.  A few online sources suggest that lack of quality sleep can trigger a manic period.  I’m not sure my own experience corroborates that and one might also question presumption of cause and effect implied in that conclusion (i.e. does sleep deprivation trigger a [hypo]manic episode or is the first sign of a hypomanic episode reduced need for sleep?). As I say above, I find lack of sleep corresponds with the beginning of a depressive period (although again, is it lack of sleep, or is it that I don’t sleep much because I’m hypomanic and then I, inevitably, have a depressive period?).

What I have found, conclusively, is that maintaining a reasonable sleep pattern and getting enough sleep (8 hours) each night is the best method I have available to maintain a stable mood.  I usually make it to about 3 weeks feeling ‘normal’ if work/life stress is average and I get a regular, uninterrupted, 8 hours.  It’s not much, it’s the time I live for though. The time I think least about whether I am happy or sad and, therefore, the time I am happiest.

Right now, I’m under quite a bit of pressure at work and over the last month have spent more time sleeping on friend’s floors, hostel beds, hotel room beds and buses than I have in my own bed.  It’s getting to the point where I’m fantasising about a week where I don’t have to set an alarm for any time before 11am (because, my brain is still out to get me and if I don’t set any alarm at all I sleep for 12 hours) and wondering if I’m setting any new records in surviving sleep deprivation without actually being technically sleep deprived (7 hours sleep on average the last 2 weeks)

Identifying how important decent sleep is to my mood is more than half the battle, I’m sure of that.  What is harder to deal with is what my obsession with sleep means for social and romantic life.

Ever fallen into bed with a new lover, then checked the clock as you finish and realise you needed to be asleep an hour ago? Then immediately ruled out anything else by turning over and concentrating on going to sleep? Ever left parties early, not because you had an exceptionally early morning or important shit to do the next day, but because you didn’t want to ruin the rest of your week with one disrupted night’s sleep? Ever refused a friend a place to stay because one night with someone else in the room means sleeplessness, and sleeplessness means a lost week?…And on and on it goes.

I love sleep.  I really do.  I love getting into bed, burrowing down, hitting ‘sleep’ on my phone.  I love waking up but not needing to go anywhere and just lazing in the in-between-haze of asleep and awake.  I just don’t love needing that more than almost anything else in my day if I want to be functional, coherent, and, most of all, sane.  I’d love just the odd late night without consequences.  Just a few sneaky early mornings without feeling like I have bugs crawling under my skin or that my brain is going to vibrate out of my skull.  And I do wish I wasn’t so obsessed by everything to do with sleep, because I think it’s a dead giveaway that I’m nuts when I meet someone new and my entire life is quickly revealed to be dedicated to a Good Night’s Sleep. It’s surprisingly hard to make an obsession with sleep – something we all, quite clearly, do – seem normal.

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On [non]therapeutic interventions and feelings of failure

I’m having something of a tough time at the moment.  I’m struggling with my work and as that is all I have in my life right now, that has an enormous knock on impact on my mood.

At about 3am last night (insomnia ho!) I was reflecting on my experience of CBT; why was it so useless to me?  I thought about a typical interaction I had in any of the 6 sessions at either of the three times I had CBT.  It would go something like this;

CBT Practioner: “So, what is difficult for you at the moment?”
Me: “I can’t sleep”
CBT P: “What stops you sleeping?”
M: “I feel tired, I go to bed, but as soon as the light is off my mind gets noisy and I can’t relax.”
CBT P: “What thoughts keep you awake?”
M: “That I’m a bad person. I think of all the bad things I’ve ever done and my stomach turns to a knot of anxiety and I go over and over and think about how people must think of me as a terrible, stupid, useless person”
CBT P: “Can you give me an example?”
M: [after some hesitation at saying these things aloud] “Yes. I phoned work the other day, my boss answered the phone. I said ‘hi, it’s me’ like I would to a friend, not a colleague, and she didn’t answer, so I immediately said “it’s [my name], it’s me.” And then we had our conversation”
CBT P: “So what makes you anxious about that?”
M: “I imagine she thinks I am an idiot, that I can’t even deal with a simple phone transaction properly. I embarrassed myself”
CBT P: “That one small thing?”
M: “Yes”
CBT P: “Do you think [your boss] thinks about that? Did she say anything? Has she indicated she thought it was odd?”
M: “No. I know that, logically, on the balance of probability, she doesn’t even remember it. I am sure even if she did, she wouldn’t care enough to keep thinking about it or make any conclusions about me. I’d be surprised if she even remembered it, it happened more than 6 months ago [insert time spans of up to 15 years in this for different things that keep me awake]”

And that is precisely the problem I have with CBT.  I can identify my thought processes as irrational, I can imagine the most likely and rational response other people have to all these imagined faux pas, I can even have confirmation from people that, no, they don’t hate me because I didn’t hold the door open for them 6 years ago that one time.  But I am perfectly capable of – skilled at, even – holding two pieces of contradictory information in my mind at once.  I can know, be 99.9% certain that people on the street aren’t talking about me, laughing at me, but I’ll still hurry home and slam the door closed behind me, heart pounding, because there are two parts of my brain – one sane, one insane.

Insane.  A strong word, but in it’s purest, most precise meaning, that can be the only description of the thoughts that drive my anxiety and unhappiness. It is apart from rationality, it is apart from reasoning, and thinking it out.  As I told the final CBT Practitioner I met (who was disillusioned with CBT too, and enabled me to voice my problems with it, for which I am grateful): “if I could think myself out of this, I would have done it already. I’ve been trying to think my way out of it since I was 14”.

He smiled and agreed, ‘yes, it has limitations’.

I can understand I am wrong, and still feel with every fibre of my being, the wrong thing to be true.  When I went private, very briefly, for therapy/counselling, I discussed this with the counsellor. She kept saying, with a bit of surprise, “it’s like there’s a split, you have a split in your thinking, two halves”.*

But I still feel like I failed at CBT and not the other way round.

Right now, for example, I am very unhappy and very demotivated. I’m not getting any work done and I’m angry with myself for that, and that anger isn’t translating into action.  I look at my life; I am financially set for the next 12 months, I have a nice home, enough food, enough clothes, I am doing the thing I supposedly love (PhD) and I’m doing it in one of my favourite cities in the world. I am unburdened by serious responsibility or serious health problems.  What on earth have I got to be depressed about? How dare I?!

And I know, of course, as everyone bleats and shares and reassures “depression isn’t about circumstance, it’s not about how great your life is, anyone can be depressed”.

But, as we established above, I am really good at holding two conflicting pieces of information in my mind at once.  I’d never judge a friend for saying they are depressed when I think that they have a good, or enviable life; I’d just offer support and love and help in anyway I could.  But me? I look at my life, all the opportunities I have, all the opportunities I am sitting in the middle of failing to take advantage of, failing to ‘grab the moment’, failing to do things people would give their eye teeth for that are sitting open to me and I cannot understand why I am not happy.

Why aren’t I living the wonderful life that is sitting open to me?

Why aren’t I happy with all the great things in front of me? Why can’t I think myself out of this?

And more than that, if I’m not happy now with what I have, and I pursue and attain the next list of things I think will make me happy, how can I ever be happy? There is no pot of gold at the end of the rainbow.  Just more “oh, it’s not this pile of things and people and opportunities I need to make me happy, it’s that pile of things and people and opportunities I need, I’ll go chase them”.

It’s unending.  It’s always going to be me saying “just a little further, then I’ll be happy”.

What I need is to be happy here. I have no idea how to do that.  I just know I should be already.

* I didn’t care much for this as a response because that’s diagnostic of schizophrenia, and no, my mind isn’t split – the two contradictory parts talk to each other – that’s the conversation which keeps me awake at night.  It’s also a really unhelpful comment – yes, I know it’s odd I can hold such polar opposite thoughts, how do I stop doing it?

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Filed under NHS and Professional Services, self-hood and cyclothymia