Don’t rock the boat!

A week since my last post and I am still feeling stable. I’m beginning to answer, “How are you?” by saying that I am well, or even good. I still do it with a slight sense of trepidation. Is this hubris? Am I fooling myself? Is there some hidden power out there after all, waiting until I think I am well before striking me with a bolt of psychosis or rapid cycling? Of course the next thing people want to know is: why? Or maybe how or perhaps what has brought this thing about about. And I wish I knew, I really do because then I could write it down as a prescription for wellness and then I never need be desperate again.

I was thinking about all the things that have been recommended to me over the years or that I had read about or learned about in a class as being helpful for “recovery” (I”m going to keep putting that word in quotes, because I don’t believe that it is a helpful thing for me to aspire to or label my progress). I decided to put a fun spin on things and make a word cloud just to see the scope of advice I’ve received over four and a half years. Many things I have tried already to no avail. Some are just – no. Not going there (especially not seeing my bipolar as a genetic advantage). Many seem sensible and at least unlikely to do harm but at the same time appear too minor to have significant impact. Amusingly, the cloud has split up a phrases and created odd juxtapositions like “oily faith”, “low walnuts watch” and “sugar advantage”. I don’t know, maybe some of those could be more useful than a number of the suggestions I have encountered in my life.

                   Screen Shot 2015-09-28 at 16.20.00

You could point to many of those words and ask if it is something that’s helped me. Has mindfulness helped? Yes. Somewhat. What about spending time with friends? Of course. Routine? Yes. Singing? Definitely. Being out in nature? Yes. Yes! Yes, but…I did these things six months ago, a year ago, and they did not have the same effect. I’m on the same mediation I’ve been on for six months. There is no magic lever that has been pulled, drawing up a curtain to show a happier scene.

Also, there are a whole bunch of chicken/egg scenarios in the mix. Right now I am taking more exercise than I have in a while. Lots of walking, where possible within London’s leafy spaces. I’m doing cardio at home and I’m just about  to take up yoga again. But do I feel better because I am exercising more, or am I able to exercise more because I’m more stable? Similarly, I’ve improved my diet adding lots more fruit and veg and reducing sugar intake. That ought to make me feel well I suppose, but at the same time there is no way I would be able to keep to this if I were unwell, desperately craving fat and sugar.

However it has occurred, I am being to have more and more of a life worth living. Work has picked up and I am revelling in freelance writing, in ensuring expert patient input into health strategy, in going out into the field as a service user researcher. In my spare time I am starting to undertake activities that I think of as nourishment. When I am very unwell it’s impossible to “feed” myself with rich life experiences; all I can do is grab at whatever scant snatches of emotional food that I can find. Even when things are improved it is often too much to do anything that feels like it’s doing psychological good unless Tom’s with me, guiding me through. Now I feel able to take charge of life-affirming experiences. Lunch with a dear friend. A solo walk in an early autumn park. Taking myself off to a restored Edwardian cinema where the afternoon showing is almost empty and I can relax on velvet seats, a glass of wine in hand. Going to a gallery on my own (last week I adored “Wanderlust“, the Royal Academy’s Joseph Cornell exhibition). These things are like taking on superfoods which are both delicious and full of the nutrients I need to develop my wellness and enrich my life.

So I don’t know what’s going on underneath my mood, but if it’s a combination of medication, exercise and improved diet then I’m very loathe to change any of that. Sometimes I grumble about the diet and exercise bit because I’m not really losing weight – but then I remind myself that whatever I am doing is obviously helping (and will be good for blood pressure and reduce the risk of metabolic syndrome, something I worry about as I have been on a high dose of atypical antipsychotics for years now). In other words, I don’t want to rock the boat. If something appears to be helping, I’m going to carry on doing it. Now is not the time to follow the original plan to taking the lamotrigine to the max and gradually withdrawing the quetiapine; I plan to stick them both as well as lithium, pregabilin and thyroid augmentation. Now is not the time to go back to comfort eating because winter is coming up and I am grumpy and cold.

The thing that bothers me is that for a long I have been waiting for therapy. Specialist CBT was recommended when I first saw the specialist affective disorders people in November, alongside the aforementioned drug regime, and for most of this year I have been pushing for therapy. At one stage I felt that we were just pushing the combination of meds up to higher and higher doses without any real benefit and I felt that therapy would be a better way of addressing my problems. Only now I have the option of starting therapy and I no longer know what to do with this. Part of me feels too late, too late; where was it when I needed it? Part of the problem is that I have grave reservations about the therapist, because after all that waiting we really, really didn’t click at the assessment and I left feeling devastated. I also have grave reservations about the therapy as I had forgotten until I was given mood monitoring charts that actually I really dislike CBT.

Six months ago I would have grabbed onto the offer like a person down a well offered a stepladder to the surface, regardless of the treatment, regardless of the worker. But now? Now I don’t want to rock the boat. I don’t want to add anything into the complex and only little-understood system that is making me well. And therapy, any therapy, upsets things, brings difficult stuff out into the light. And I don’t want to do difficult stuff. I can barely bring myself to think about how awful the first half of this year was, let along look at past horrors. And those are the issues with therapy per se, never mind the therapist issue and the fact that it’s CBT. But this is all that’s on offer. I’ve asked to work with another therapist on the team and there is none. I could be letting a vital opportunity go. And I know that there is an argument that you have to be well enough to do therapy, but I don’t think I’m as well as all that that just yet.

*crouches down and keeps very still at the bottom of her little boat*

Posted in Bipolar, CBT, Cognitive Behavioural Therapy, exercise, Medication, Mental health services, Mood disorder, NHS services, Recovery, Therapy | Tagged , , , , , , , , , , , , | 3 Comments

I don’t ask for the moon

So here I am in this… zone. It’s a zone that I’ve been in before, although not for as long this in years. I’m scared to write about it actually in case drawing attention to it bursts the bubble.

I’m OK.

I’m not brilliant. I’m not asymptomatic. Things can throw me off course. I’m looking over my shoulder all the time. But I’m OK. I am (relatively) stable and I am (relatively) productive. And I would like to stay here please. I just want to stay here.

I’m not asking to be back to full functioning. That’s a kind of a dream my psychiatrist still has for me but one that I let go of years ago. I have accepted that I will have a limited range of functioning for the foreseeable future and that in order to maintain this I will have to carry on taking 12 pills per day as there is no way I dare rock the boat. But within this limited range I feel that currently near the top of the window. In other words, this is the best it’s going to get. And I don’t mind that, I really don’t.

I’m not asking to be 100% free of bipolar symptoms. My anxiety is much reduced but in certain situations can still overwhelm me. I still have scary delusional thoughts, but far fewer than before and I am more able to put some distance between the myself and the thought. I am no longer scanning the pavement for banana skins. A recent family emergency resulted in me crying continuously for six hours. I have the odd low moment when I worry I am sliding down, the odd euphoric moment when I wonder if I’m heading up. But I don’t think I am.

And I’m OK with being OK. One of the first ever self-help books I ever read (this was right after the bipolar diagnosis was restored in 2011) stressed the value for bipolar people of seeking contentment, of detaching from the thrill of the roller coaster ride and seeking something more sustainable and less damaging. I kind of knew what the authors were getting at but it seemed completely unattainable. It is something I am only really experiencing now, and I’m relishing it. I’d rather be snuggled on the sofa with Tom watching TV or wandering around a National Trust property (because I really am that middle class) than whirling around like a Tasmanian devil cleaning, writing, exercising, singing, arguing, banging out tweets every few seconds. I’m thankful that I’m not conscious of using the TV programme as a distraction, that when it ends I won’t have to face suicidal feelings.

This new zone is safe yet allows for some challenges. It’s making me think about what goals I could have, and whether they are reasonable within my current limits. Now I’m OK, what do I want to feel more fulfilled?

There’s a lot I’m really not asking/hoping for. I’m not asking to be the dedicated full time professional I used to be, the one who juggled a lot of unpaid overtime in addition to the 37 hours. I realise that I am still a long way from even being able to work at a regular part time job for an employer. I’m happy enough to go on as I am, self-employed and undertaking research, training, consultancy, freelance writing. I don’t go out and aggressively pursue work, I let it come to me and I try really hard not to work more than two days per week, preferably non consecutively, because more than that and I start to become overwhelmed. I get as tired by two days’ work outside the home than used to after a full week. And of course I don’t earn that much. I am in the very fortunate position of being pretty much supported by Tom, but it’s hard for me to feel OK with that as I have been economically independent ever since the children were small. Earning a little bit more now is good for my self-esteem. As well as buying my wedding outfit and the kids’ I was able to pay for the cake. Not much, not in the wider context, but it meant something to me.

I’m not asking to have the kind of active (hectic?) social life and hobbies that I had in the past. I used to sing in three choirs every week, one a tough, audition-only a cappella group. I’m not expecting to ever be able to go back there, but I really would like to just slot back into my friendly local choir where I have friends who know about my condition. Looks like I missed the boat again for this term – my sight reading’s pretty atrocious, so once the first two rehearsals have passed it’s very hard for me to jump in. At least this year it was for reasons unrelated to my mental health as wedding/honeymoon stuff took over. I’ll wait for January and in the meantime I’ll try and play my ukulele more! Meanwhile I have lots of friends that I don’t see very often, so I’m making a conscious effort to meet up with people. Only a couple of times a month, and not for dinner or cocktails these days. And I might not be up with the latest movie releases any more but I did enjoying to the cinema on my own one afternoon a couple of weeks ago, and I’ve just booked to see the Royal Academy’s Wanderlust exhibition before it finishes (again, alone, but I’m honestly fine with that – another thing I’m content with).

I’m not asking to be the woman who trained to run a 10k race on top of the unpaid overtime and the three choirs and the cocktails and the films. But I am enjoying doing aerobics DVDs three times a week and I’m really tried to walk more. I would like to explore  whether other form of exercise are something I would enjoy and find helpful right now. I’m just about to start yoga classes after many years and I’ve ordered some swimsuits for the um, fuller figured woman because I want to see if I still enjoy swimming. When I was first on sick leave I got into walking 8-10 mile walks from the Capital Ring and I’d like to do some other parts of the route I’ve not yet explored.

My other goals are similarly modest. I would like to learn how to make rag rugs. I would like to meditate again, even if just a couple of times a week for a short period. I would like to make better use of my colouring book. I would like to shake mealtimes up a bit and make better use of the lovely cookery books I was given for my birthday. That’s about it, I think. Struggling to think of anything more.

I don’t ask for the moon.

Posted in Activism, Bipolar, Depression, Employment and benefits, Medication, Mental health, Mindfulness, Recovery | Tagged , , , , , , , , , , , , , , , , , , , , , , | 15 Comments

We’ve been and gone and got married!

I’ve been absent for a while, but with good reason. Tom and I decided some time ago to get married and we chose do it in style! We got married a couple of weeks ago in a group on the stage of the Royal Festival Hall as part the Southbank Centre’s Big Wedding Weekend. It was… amazing. Aside from my children’s births it was easily the happiest day of my life. I won’t say too much more. I’ll let some of our pictures do the talking (some pics look a little weird in shape have been cropped to protect the privacy of family and friends).

I’ll be back blogging when I’ve stopped thinking how wonderful it was :)

Royal Festival Hall stage ready for the ceremony

Royal Festival Hall stage ready for the ceremony

Exchanging vows in front of the Registrar

Exchanging vows in front of the Registrar

Curtain call - seven just married couples

Curtain call – seven just married couples

Cutting the cake - we we're going for a 1950s look

Cutting the cake – we we’re going for a 1950s look

Prosecco in the bar! Start as you mean to go on

Prosecco in the bar! Start as you mean to go on

The Big Wedding Weekend was part of the Southbank Centre's Festival of Love, here celebrated with neon lights

The Big Wedding Weekend was part of the Southbank Centre’s Festival of Love, here celebrated with neon lights

And this about sums the whole thing up...!

And this about sums the whole thing up…!

Posted in Uncategorized | Tagged , | 13 Comments

Review: The Other Side of Silence by Linda Gask (plus author Q&A!)

It’s always tricky reviewing a book written by a friend, which is what I hope Linda would call me although we have only ever met online, so of course I  come to this review admitting bias. If someone asks me to review a book I suspect will be bad I simply say no, as I would hate to have to tell someone that I think all their hard work has resulted in something that wasn’t very good. But I didn’t think twice in this case and reading The Other Side of Silence: a psychiatrist’s memoir of depression has been an honour and a pleasure. I’ll share my thoughts below but after that I want to try something a little different so I’ve set Linda some questions for a Q&A. Once I’ve hit publish the “floor” will of course be open for comments but I will be out of the country for the next week or two so I may be slow in responding.

Linda is a psychiatrist by training and spent years in the NHS, working her way up the ranks before moving into the academic world. She is now semi-retired, giving her more time to write (you can visit her blog here). The sub-title of her memoir explores what is so unusual about her situation – she has practiced psychiatry for most of her adult life despite suffering from severe depression. Research tells us that doctors have a high rate of depression and that many hide their suffering from colleagues, with staff in mental health teams particularly fearing the consequences of disclosure. It is clear that being a mental health service user and a psychiatrist has been a very tricky tightrope to have to walk on a daily basis.

The book weaves together Linda’s lived of depression, the ghosts from her past that have  contributed to her condition, the treatments she has sought, her life as a clinician and the learning she has taken from patients. I hesitate to use the phrase “case studies” when referring to the patients described as that sounds too cold. Perhaps “stories” would be better, but in any event Linda has shared her experience with a number of patients, some of whom she saw decades ago, which are woven into her personal narrative. Patients with whom she felt out of her depth as a newly qualified doctor. Patients who taught her what it means to listen properly and carefully. Patients who took risks, opening up in the consulting room, sharing their stories of past abuse, inability to love, or unresolved grief. All reminders that doctors have as much to learn from patients as patients do from doctors. learning that Linda passes on to junior doctors bound for psychiatry or general practice.

I don’t really like it when people call my writing “brave”. I don’t know how Linda feels about the word but it is a brave piece of writing. Even in life writing many people consciously or unconsciously present a less flawed or less damaged version of themselves. To focus as much on therapy as Linda does in the book is to acknowledge being a work in progress, that no matter successful a person might appear they are very much human and very much fallible. Linda however goes further, turning over a some very heavy stones and examining what is underneath, things that were at the time (and perhaps still remain) a source of shame, difficult to admit even to a therapist. Linda continues to be very open online as @suzypuss) not only about her personal difficulties but about her use of antidepressants. quietly but firmly seeing off those who see psychotropic meds as a dangerous plot cooked up between Big Pharma and psychiatrists.

I won’t say too much more, because I would encourage you to head on over to Amazon to buy a copy to read yourself! But to give you more a few more reasons yo do so I’m going to put Linda on the spot by asking her about the aspects of the book I found most interesting.

Doctors can often appear quite impersonal to patients. Did you set out to make doctors appear more human, or was this just a side effect of sharing your own experiences?

I didn’t set out to do that. I tried to be honest about the kind of interactions I’ve had in my life,  both with the doctors who treated me, and with my own patients. If that makes doctors appear more human, that’s good- because we are! However, not all doctors I know seem human (I’m pretty open about the fact that there are quite a few of my colleagues I would not wish to consult) and I suspect I’ve not always appeared that way to patients either. Appearing human without sharing too much of yourself inappropriately can be a difficult balance to achieve.

Quite early on in the book a colleague notes that you will be a good psychiatrist because you were the most sensitive person he had ever met. At the time you wondered whether you were sensitive or just thin-skinned. Is this a question you have ever resolved? And do you think now that sensitivity did play a part in having a career in psychiatry?

I think am both! Quite easily on I realised I was able to pick up on how people were feeling and that helped me in deciding to do psychiatry. However I am also thin-skinned. A thicker skin would have been helpful in my career- and I might have lasted longer in it, and been more successful as an academic and manager. But I’ve come to terms with who I am.

You make it clear in the book that you consider depression to have complex origins including biological vulnerability and particularly unresolved grief and loss, themes that run through the book. Could you say a little more for readers about how depression differs from a normal grieving process?

Grief is a normal human process we all go through when we experience loss. Feeling low and depressed is a normal part of that – but it usually resolves over time. We cry, desperately miss the dead person, and feel unable to do much other than think about the person we have lost and what has happened. There is no rule about how long this last before we begin to take up our lives again and don’t let anyone tell you “you should be over it by now.” Crucially it just gradually feels a little easier as time passes. If grief however is complicated the process can get stuck. You begin to feel worse, have ideas about suicide, wanting to join the dead person. This then becomes very hard to distinguish from depression – and is usually treated in a similar way. Grief can get complicated if you have had a difficult relationship with the dead person, like I did with my father, or, for example, if it was a sudden or really traumatic death or the person was never found.
If you are vulnerable to depression – for example if you’ve had it before or have a family history, the loss alone can also result in a relapse of your depression. The depression associated with grief resolves as you move through the process of grieving. A person who develops depression experiences more persistent low mood, sleep problems, weight change and all the other things we recognise, along with lack energy, hopelessness and suicidal ideas. If these continue week after week, or become very severe, thats not grief, that’s depression.

You’ve shared some deeply personal things about yourself and your family, especially your father and your brother. Did you discuss the writing of your memoir with any family members still living?

You may be surprised but – no. While I was writing the second draft, my mother died. I haven’t mentioned it in this book. We had been estranged for many years, and I’ve seen very little of my brothers in my adult life. Apart from my husband and friends I’ve been very much alone. I’m in touch with my youngest brother now a little, after decades, and I’m not sure how he will receive it, as he was closest to my mother. However it was a therapeutic exercise for me to write it, and completing it has been an important task for me. I will let you know in time!

I was struck by how often you took on patients for psychotherapy rather than just offering medication or self-help skills. It seems quite rare now for psychiatrists to administer talking therapies. How do you feel about that, and do you feel it’s a component of the exceptionally long waits service users face for therapy?

When I was in training, and in my early period as a consultant I did see patients for psychodynamic psychotherapy with supervision, and I supervised trainees. I wanted to be a psychotherapist then, but got tempted into academia instead. Many of my psychiatric colleagues are trained in therapies which they do not have time to practice – they are increasingly expected to refer on to others and simply review medication. I think this is a terrible waste of their skills. However if I had become a consultant psychotherapist I may well have had problems retaining my job. Psychotherapy services have been savagely cut – and its almost impossible to get the longer term psychodynamic therapy I practised as a trainee, or received myself in the past, without going privately now. There’s been a huge loss of expertise, and I think that is so short-sighted. This contributes to the long waiting time for therapies other than CBT [cognitive behavioural therapy] such as dynamic psychotherapy and DBT [dialectical behaviour therapy]. Even CBT is hard to get, because many people who are waiting for it, might benefit from other short term help – but instead end up on long waiting lists with no support at all. You can see what gets me angry!

You describe having found antidepressants helpful and indeed having taken them for decades. What reaction have you experienced to this openness?

All types of reactions! I’ve had a lot of support from many colleagues over the years especially when Ive not been very well, but I’ve had others who look embarrassed when I reveal I take them as though I really shouldn’t be talking about that. I’ve had a person on twitter tell me that I would be positive about them, wouldn’t I, because I’m a psychiatrist! I found that reaction the hardest one to accept! I haven’t stayed on antidepressants for any other reason other than I need to take them to stay well – certainly not to prove a point. Some colleagues have told me how comforting it has been to know other mental health professionals take them too especially  if they work in settings where there are strong beliefs that medications don’t work, and find it hard to admit their own experiences.

So there we have it! Big thanks to Linda, who I hope enjoyed answering the questions as much as I enjoyed writing them!

Posted in Books and reading, Depression, Memoir, Psychiatry | Tagged , , , , , , , , , , , , | 6 Comments

Black bags in the night

I haven’t posted in a while. Somehow I find it very hard to blog when I’m doing well, and in fact I have been doing very well since returning from holiday. Four or five weeks of stability!

Until this week. Now I’m scared that things might be unravelling.

Firstly there is the small matter of voices. I say a small matter because their presence is small, although very unusual in I have never experienced anything like it before, and because compared with so many people I know who hear voices my experience is as nothing. Just two voices, each only uttering a single word. It would be easy to write them off as mishearing background noise, but they felt very clear and very definite and feel significant.

I have in the past felt that certain thoughts were not mine, that they’d been dropped into my brain like someone dropping a pebble into a pond, but I did not hear them as being outside of my own head. But now on two occasions a voice I can genuinely hear has felt as if it comes from a particular place outside of my body, a place I can kind of feel with my brain right now although I know that’s silly. It’s about 30cm away from my skull, behind and slightly above it, so almost as if speaking directing into my right ear. If that zone was somehow to be pulled from its place outside to touch my body it would end up at a certain spot on my head. Right now I can feel that spot kind of pulsating and I’m afraid to touch it.

The first voice occurred in Italy, when I was coming out of a mixed episode. I woke up feeling awful and very bipolar irritable, describing my state to Tom as like having a box of bees in my head. “Well,” said Tom, “we could cancel the walking tour we’ve planned. It would be a shame to come here and not see the sights, but it’s up to you.” And so I had to decide whether to push through the bees in the hope of enjoying the planned activity or just go back to our hotel room.

We set off, rather reluctantly in my case, but only got a few metres from the hotel before Tom realised he had forgotten his camera. I stood in the sun alone, wondering if I was doing the right thing, when a male voice said “Sí”. That’s all it said. I experienced it in that zone I’ve mentioned. It spoke clearly and distinctly. I looked around. There was no one near right ear, or indeed near me at all. Ahead was the thick wall of the 18th century hotel building. I looked to the left and the right; nobody was walking up the narrow, cobbled street. I looked behind me but there was nothing except a thick wall the colour of saffron a good two metres away. Tom came back and we went on our excursion and it was wonderful because I made the right choice. I said “Sí” to the opportunity. I don’t really know whether the voice influenced me or not, but I was so glad we went.

I thought nothing of it. OK, I thought something of it but it wasn’t scary and there was no repetition. But then yesterday I was in a shop trying to decide what to buy. I won’t get too detailed here but suffice it to say I was in the family planning section. Anyhow I was vacillating and a voice (of no obvious gender, but possibly female) coming from that same spot above and behind said very distinctly, “Hmm.” Again I looked around. There was nobody else in the aisle. There were people in the aisle behind me but certainly nowhere near close enough to speak so intimately near my ear, and in any case they were engaged in conversations of their own. Initially I thought that “Hmm” represented my indecision, but when I left the store I began to feel it had been critical, that it expressed disapproval at anything to do with sex, that it felt like it thought less of me for having sexual desire. That wasn’t a comfortable thought.

So much for those small voices. I’m more concerned by what happened to me a couple of nights ago. I’d gone to bed ahead of Tom and was lying in the darkness when I heard a rustling. I didn’t know what it could be. My heart started pounding and I didn’t want to get out of bed, so I turned on a little torch I keep on the bedside table and shone it around the room. I immediately saw that there was a large black paper bag with handles on the floor, a relic from our recent trip to get Tom’s wedding suit (for those who don’t follow me on Twitter, yup, we are getting hitched!). I say this because that bag should have been a benign item, something with positive associations, but straightaway I knew it had to be the culprit. I turned off the torch. The rustling resumed. Terrified, I switched the torch on again, only to find stillness and silence. After one final round of the darkness and the rustling and the torch and the silence I couldn’t stand to have that bag in the room so I grabbed it by torchlight, bundling it out of the door and into the hall (where Tom was bemused to find it later) saying to it, “Fuck you! Fuck you!”

There are really only two ways of interpreting these events:

  • I am slightly unwell and need to somehow balance the fact that these things really happened to me with the fact that they could not have happened to me. This creates a huge amount of internal conflict but is better than…
  • That they are the handiwork of THEM.

So things could be worse. I am lucky that I am in the realms of 1, not 2. The wedding is just days away and being psychotic would be supremely unhelpful – as would the alternative, being high sedated with antipsychotics. I am a bit high, which is disappointing after my period of stability. I’ve been struggling with compulsive hand scratching and wringing, which only happens when I am high (in fact, it’s actually worse than it’s ever been). I can only assume that the wedding planning, as fun as it has been, has been a source of stress, even if that stress is positive. I just keep thinking, “Please, please don’t let it get any worse.” No psychosis. The only break I intend on having is my honeymoon.

Posted in Bipolar, hallucinations, Psychosis | Tagged , , , , , , , , , , | 20 Comments

Whatever I do, I’ll probably be wrong

I’ve just been for a walk. This was a bit of an achievement, given that it took a tremendous effort to get out of bed and dressed, let alone to get myself outside (I didn’t manage to have a shower before leaving the house, but that can stay between us). Sounds like I’m depressed, right?

Yet last night I felt like my brain was running so fast after a fun, busy weekend that it was like being on a centrifuge. The sense of internal pressure and intolerable speed made me feel like I was going to fly apart, mentally and even physically. Sounds like I was manic, right?

Well, sort of. It’s complicated.

Before I had my last round of Home Treatment my Consultant thought that I was in a “mixed affective state”. A mixed state is when your brain decides that it’s not enough to just be hypomanic or manic. That’s it’s not enough just to be depressed, oh dearie me no. That would be too simple! So, often for no apparent reason, the brain decides to shake up the old brain chemistry a bit so that someone experiences both symptoms of a high and symptoms of a low in the same episode or even at the same time. It’s happened to me a few times now, and when it’s intense I find it incredibly hard to cope and have needed to seek emergency help. The one time I have attempted suicide was when I was in a mixed mood state, and it recognise as the most risky of bipolar mood states.

But a mixed mood can be very difficult to separate from ultra rapid cycling. When my Consultant suggested that I was in mixed mood, I wasn’t sure; I’d thought it was more that I was just cycling really rapidly. After the whole delusional thing blew over I remained confused about how to identify what was going on. I certainly wasn’t experiencing normal mood. There were high bits and there were low bits but whatever it was seemed fairly low key and manageable. And I was really looking forward to my holiday. I had in the past experienced mixed moods on holiday (one of which was quite disastrous) but Tom and I thought we had it cracked by making sure we didn’t replicate the conditions of those trips. So instead of choosing to be part of a big group, we go alone. Instead of staying put in a villa, we travel around, stopping for a few nights here or there. We allow for some relaxation time, but also do enough stuff to keep me occupied. So I was fully confident that as soon as I settled into holiday mode my mood would settle too.

Getting up for an early flight was hard. I was a med zombie and Tom had to walk me through everything. I was a mess during security, dazed and unsure what I supposed to be doing. I held everyone else up and felt anxious and miserable. Somehow the anxiety dissipated on the short flight. By the time we landed I was excited; when we picked up our hire car I was somehow elated. “I fucking LOVE the med!” I shouted, looking through my sunglasses at prickly pears, pine trees and bougainvillea. We were making use of a villa this time, but only for a few days either side of touring around. Nearing the village we spotted a Lidl and decided to stock up on things for the next few days. I threw stuff into the trolley with abandon. It was fun, it was like a game, buying whatever I fancied and knowing we had 14 wonderful days ahead of us. We explored the unexpectedly, delightfully large villa and its amazing garden and unpacked the car. That evening we ate outside and shared the bottle of wine our hostess had left for us.

The next morning I wasn’t sure how I felt. If I was being honest with myself, I was a tiny bit low, but didn’t want to tell Tom that so I kind of… squished it. Yet when I stepped out into the garden I felt that the expanse of clear blue sky was all the medicine I could ever need. I simply could not understand how residents of countries with a sky like that could ever be depressed. So I sat outside all day, reading, writing, looking up at the sky and listening to the sound of the sea breeze in the huge pine, cedar and palm trees. I was going to be OK.

On day three I got up, got dressed, ate breakfast and then… ran out of steam. I went back to bed, fully clothed. I didn’t feel I had choice. I felt that if I just lay there, very still and undisturbed, I might be OK. Of course eventually Tom came looking for me and touched me and asked me how I was and immediately that sense of maybe, possibly being OK dissolved. I think Tom could tell that I was feeling really rough as he let me be. Normally he would encourage me to get up fight it. But he didn’t. And as I lay there I knew that because of me we weren’t doing the fun things he’d carefully lined up for the day and I felt awful. I was messing up our beautiful holiday. What a fucking idiot.

As we set off on our round trip I was most certainly in mixed mood and totally consumed by it. I had the all physical and mental agitation of a high coupled with huge guilt about being ill on holiday and continual thoughts of self-harm and/or death. Previously in mixed states my body has seemed to know my thoughts or intentions before my conscious mind has even processed them. In just the same way I felt like a puppet, my mind causing me to jerk or twitch towards danger. I lurched towards the car door, suddenly unable to stop thinking about throwing myself from the vehicle. Maybe I could even manage to do it so that I would fall down a ravine. I was plagued with fantasies of going to the beach alone and filling my pockets with rocks. Suicide Virginia Woolf style.

When we got to our next port of call I had a total freakout in front of countless surprised Italian people. The awful energy made me feel that no, I could not sit down and talk, I could not stay the night here, I could not stay in Italy, I needed Tom to drive to Bari or Brindisi so I could myself a ticket home while he carried out the rest of the holiday plans alone. Tom pointed out, not unreasonably, that he wouldn’t find much joy in carrying on alone while worried sick about me at home on my own. He coaxed me into taking 5mg of diazepam and sitting in a park with me to see how things went. Within three hours I was bouncing off the walls, impatient to go out and explore the amazing mediaeval town centre and eat dinner and buy ice cream. I dressed up. I put on makeup. I posted a happy selfie on Twitter. I had an amazing evening.

Well, whether it’s mixed mood or whether it’s ultra rapid cycling my problem is the same: how on earth am I supposed to manage it? This is what kept running through my head on my walk this afternoon. Walking is good to fight low mood. Walking can be good to reduce agitation. But walking, especially fast walking, can sometimes feed mania. Which means whatever I do could be wrong. Staying at home more as a tool to reduce hypomanic overstimulation could be the right thing to do. Or it could make low and isolated. Mixing with supportive people over the weekend just led to me feeling high in a desperate, desolate way. And meanwhile I’m aware that psychotic thoughts could pop up again at any time and I’m powerless to stop that.

And so I am finding myself back at a place of learned helplessness. There is something ahead that might help me: five months after my consultant formally requesting that I start specialist CBT for bipolar (which was originally recommended back in November) I have an assessment at the end of the month. What I will do if I am not judged suitable, I have no idea. What I will do if I start the therapy and it doesn’t help or I don’t manage to develop a rapport with literally the only therapist around who can deliver, again I have no idea.

I think I’ll leave it there. I don’t have any neat endings, or anything else to say.




Posted in Bipolar, Crisis care, Travel | Tagged , , , , , , , , , , , , , | 8 Comments

What mindfulness isn’t

I have said many times that I am a fan of mindfulness and that in some ways undertaking Mindfulness Based Cognitive Therapy (MBCT) was a game changer for me. I might not have a regular formal practice (see below) but I use the skills I learned there every day. So I get angry and upset when I see descriptions of “mindfulness” that I simply don’t recognise or see skills wrongly applied so that service users have “have failed” or are “no good at” mindfulness (for a more thorough explanation of why I think that’s ridiculous see this post:

Pretty much every month or so there’s an article in the mainstream media on mindfulness and today it’s the turn of BBC health to report on the benefits of mindfulness in schools. It draws heavily on this paper from this paper, which appeared in The Psychologist. I’ve seen worse pieces on mindfulness but still they contain misconceptions that make me despair. I’ve written the piece linked about describing what I think mindfulness is, but I’ve been thinking for a while that I needed to write a piece on what mindfulness is actually not. It’s kind of a long read, so feel free to skip to the section that most interests you. Healthcare professionals: particularly pay attention to 4 and 7.

 So here goes. Mindfulness is not… 

1) A religious practice. I’ve got a lot from the writings from Thich Na Hanh and yes, he is a Buddhist monk. But the techniques people like Jon Kabat-Zinn and Tara Brach have taken from Buddhism have been adapted for daily life in developed countries and are completely secular. If it gets you interested in Buddhism, go for it. There is also a strong Christian tradition of meditation and some similarities with Quaker Meetings for Worship. Myself, I’m a happy atheist Quaker, and although group mediation has some things in common with sitting in silence in Meeting for Worship, there are a whole lot of differences. So don’t let your faith or lack of faith put you off. 

2) Sitting on the floor. OK, sometimes it can be that. Some people enjoy and benefit from what’s usually known as sitting practice or formal practice (what people actually do in formal practice I’ll come onto in my next point). But sitting on the floor is certainly not obligatory! You can do formal practice sitting down, lying down, lying on your back with your legs on a chair: anything that accommodates your physical needs or disability. But here’s the key part: you don’t have to undertake any formal practice at all if you don’t want to. What mindfulness is really about is a kind of waking up and paying attention to what we’re doing and what is around us. That’s pretty much it. So it means you can engage in any activity mindfully. Yesterday I walked home from the town centre, and when I got in I couldn’t really remember the journey because I had been totally lost in my own thoughts. If I’d chosen to be mindful I would have got home via the same rout in the same time period but I would’ve literally smelt the roses, the deep pink roses than overhang the fence round the corner. I might have notice green parakeets winging their way between the trees. I might have noticed the temperature of the air on my skin, the feeling of my flip-flops on my feet as they hit the pavement. Anything. Everything.

In Peace is Every Step Thich Nhat Han suggests a way of mindful eating. Recalling with great relish he would eat a cookie as a child he describes a “tangerine meditation” in which the experience of eating a tangerine becomes mindfulness practice. Focusing on the smell of it, the feel of the skin, consideration where it has come from and then the taste and the texture and juice then becomes the practice. Mary Rose O’Reilley describes watching a monk at a Buddhist retreat savouring an Indian sweet in 16 bites (she counted!) to be told, “Mindfulness is a sneaky way to live a rich life” (The Barn at the End of the World).

 3) Deep/abdominal breathing. Abdominal breathing is more a yoga technique than one that belongs to mindfulness. The essence of mindfulness is to notice. To pay attention to what is happening inside of you and outside of you, to really experience what is happening instead of getting lost in your thoughts. Breathing is at the heart of mindfulness meditation, but that’s all there is. You just breathe. You don’t try to make your breath slower, deeper, longer – or anything else, because you don’t try to do anything to your breath. You simply watch what it’s doing wherever it is you can feel it most clearly. This could be nose, throat, chest or, yes, abdomen but the idea is to notice where you feel it, not make yourself feel it anywhere in particular.

4) A crisis management tool. If I have to read/hear about one more person being asked by a Crisis Team, “Have you tried mindfulness?” I’ll… well I don’t know what I’ll do. Go on a mindful rampage. No one without a very clear understanding of what they are talking about should suggest others “do” mindfulness. This especially goes for staff, whose position of power can make service users feel anxious or guilty because they keep hearing about it but they don’t really know what it means. Secondly, you cannot just “try” mindfulness. The relegates it to the level of, “Have you tried making a couple of tea?” Mindfulness is an experiential skill. Anyone who wants to can try it, but it usually takes a some classes or some useful books and CDs to get the idea.

And finally, it is totally inappropriate for crisis. Distraction is often recommended in crisis and is much more appropriate – people need a break from intense thoughts of harming themselves. Mindfulness is the opposite from that – it’s a focus on what is going on mentally and physically. Sitting silently with thoughts of suicide or self-harm can create a kind of echo chamber for those thoughts to become more developed. And someone who is highly agitated or distress is just not going to able to wash up mindfully. Not going to happen. The teaching that I received was clear: if your thoughts are too painful or distressing, get up and walk away. Don’t sit. Distract.

Jon Kabat-Zinn suggests thinking our mind as the surface of a lake ocean, and our thoughts as waves. Sometimes they’re just little ripples and sometimes they’re big, but they can be churned up by winds when the water is churned up and pulled in different directions. “People who don’t understand meditation think that it is some kind of special inner manipulation which will magically shut off these waves so the mind’s surface will be flat, peaceful and tranquil. But… you can’t artificially suppress the waves of your mind, and it is not too smart to try.” (Wherever You Go, There You Are). 

5) A relaxation exercise. Many mindfulness teachers use guided meditations to help you along. For example, many MBCT courses start of with the “body scan”, an exercise where you work your way all around your body, from your little toes up to your head. This can seem a lot like the kind of guided relaxation exercises many people will be familiar with from yoga classes or meditation CDs, but again the emphasis is very different. In a guided relaxation, there is a goal: relax as much as possible in each area of the body you examine. Mindfulness has no goal so when you tune in to your toes you’re not asking them to do anything. You’re not asking them to relax or to let go of tension. You’re just observing them, just as you would observe your breath, with a sense of detached curiosity. Do they feel cold or hot? Is there any sensation of tingling or burning? Does your little toe still hurt where you stubbed it on the desk on Tuesday? And… that’s all.

6) A means to a state of happiness. As I hope I’ve made clear so far, there is no goal in mindfulness. It’s true that sensations of joy or wellbeing might crop up as a result of mindfulness (especially when you smell the roses) but it is a kind of a by-product of paying attention, not a state to aim for. Much of the time sitting practice can be far from blissful. It can be uncomfortable, boring, frustrating, or lead to a sense of being trapped in your own body. It can lead to doubts about what you are trying to do and why you’re even bothering. These things emphatically do not mean you have “failed” or that you are “doing it wrong”. Mindfulness is paying attention, and you are paying attention so you are being mindful! Then you have choices – what is safe for you? Do you want to carry on? Do you want to stop completely, or to get up and do a different practice like mindfully walking round the room? It’s fine to decide that what you’ve been doing isn’t for you.

7) Something that’s suitable for everyone

I was disturbed to read this phrase in the Psychologist article: “There is no downside risk, and the evidence shows these things work.” First of all there is no intervention without some risk and it’s ridiculous to suggest such a thing. Applying mindfulness – well, mindlessly, does put people at risk. People who have asthma or other breathing problems may find the focus on the breath stressful or distressing. People who have experienced trauma, especially bodily trauma such as sexual assault, may well have developed coping strategies that involve not feeling that inhabit their bodies. Forcing them to feel what it is like to be in their bodies can be extremely triggering and damaging, especially if they feel trapped inside.

Also: what does this quote mean when it says: “the evidence shows these things work”? There is a growing evidence base, but this seems strongest in terms of people who have been depressed but are in remission, in terms of being a relapse prevention tool. That’s about as far away from a crisis as you can get under the mental health umbrella. (Also, can I just say: “‘mindfulness resistance techniques’ might help people avoid the temptation of chocolate”? Just no.)

So there you have it. These are the things I wish healthcare professionals would consider. There’s still a place for mindfulness in the NHS but if we are serious about mindfulness we need to be putting professionals through at least the 8 weeks of experience practice on MCBT. Leaving people with mental health problems feeling that they have “failed” or are “no good at” mindfulness can damage already shaky self-esteem or sense of self-efficacy. Meddling with people’s minds with technique you don’t fully understand is risky.

Peace is Every Step Thich Nhat Han

Radical Acceptance Tara Brach

The Barn at the End of the World Mary Rose O’Reilley

Wherever You Go, There You Are Jon Kabat-Zinn

Posted in Bipolar, Mental health, Mindfulness | Tagged , , , , , , , | 16 Comments