The colour of madness

It’s been a very long time since I’ve blogged and this will probably be short as I’m typing it out on my phone at the bus stop. An hour ago I finished my first session of therapy in five years, and my first with my new therapist, Katya. She’s a consultant psychologist and psychotherapist at the day hospital, and we met a couple of weeks ago for an assessment at the end of which she said she would like to offer me 16 sessions of CAT (cognitive analytic therapy). I did have CAT in the past, but that was many years ago, I think as far back as 2004. I was delighted that we were going to start so soon; I had waited two years for the assessment and had anticipated another gap between assessment and actual therapy.

There’s lots I can’t say because we discussed some things that are just too personal to blog about, but there were a few things I wanted to share. Firstly, that she was open to hearing about my identity. She found it interesting and she was not critical of my labelling myself disabled and bipolar. I then – with some trepidation – brought up my identity as a “mad person”. You can always tell when professionals are uncomfortable with service users using words like mad and mental to describe themselves and their experiences, but Katya took it in her stride and liked the idea of people with lived experience reclaiming those terms. Next she asked me what I thought about the recovery model, so I told her. The word “neoliberal” was involved. She accepted that I do not believe that I will ever be recovered, that there will never be an end point, but perhaps if I am lucky another very long remission.

I liked that Katya was open to learning new things, so next I taught her Spoon Theory and she was into that too. It came up because we were talking about how I see myself as quite a giving person, and that I like to give time and care to friends who are mentally unwell. She asked if I was still able to do that when I am very depressed, so I thought it useful for her to have the concept of “having no spoons”.

The most interesting part of the session came when we teased out my different mood states, and she identified that it’s more complex than just “high”, “low” and “stable”. Katya noted that I sometimes seem to have “little highs” which are on the border between euthymia and true hypomania. When she asked me about lows, I tried to explain that I differentiate between what I think of as “bog standard depression” and the state of acute anguish I sometimes feel, and that the latter is so different to the bog standard that depression may not even be the right word for it. I don’t know if a word has ever been coined that could pin it down.

Katya asked me, “So if you had to describe bog standard depression as a colour, what would that be?” I didn’t have to think too hard before saying, “Grey.” She made a note, then said, “And what about the anguish?” I immediately chose red, what I called “a howling red”, and she pointed to various objects around the room to try to find a red that matched my idea. “What about hypomania?” Hypomania is to me either a vibrant spring green, or a fluffy pink (like candy floss, although I didn’t think to say this at the time). “And normal mood, when you’re feeling content and capable?” I chose yellow with, Katya noted, no hesitation. Lastly she asked me to pick a colour for my “little highs” and I told her that they were also yellow, but TOO yellow, a sort of yellow that hurts your eyes.

And just like that it was the end of the session, a session I had woken up dreading for no obvious reason, but ended up enjoying. Katya was also pleased with how the session had gone. She thought I had done really well voicing my feelings as colours and that it was a useful starting point for examining them further. 16 weeks feels like quite a short time within which to make progress, but I left the day hospital feeling optimistic and even a little excited about next week’s session.

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Isolation, anxiety and ableism

So although the UK isn’t technically on lockdown the way a number of other European countries are, most people are beginning to find out what it’s like to spend a lot of time at home. The over-70s and people with pre-existing conditions that put them at additional risk if they contract COVID-19 are virtually confined to the house, while millions of people are now working from home. Others are about to find themselves unemployed as the entertainment and hospitality industries reel from the advice to avoid pubs, clubs and theatres, and cafés and restaurants see dwindling numbers of customers. And so a great many people are suddenly realising what it means to be at home for the vast majority of the time.

For once, I am seeing abled people take the advice of sick and disabled people seriously. People with physical or mental health problems that preclude them from working outside the home have a wealth of accumulated wisdom about how to get through the day without leaving the house. For once, we are the experts! It’s almost funny to see “top tips” circulated in the mainstream media as if it isn’t all stuff that spoonies do every day. Until recently, many of of us were pitied for having mainly online circles of friends; now keeping in touch by social media and WhatsApp groups is all the rage. People used to working outside the home are finding out how important it is to structure their days, to go to bed and get up at set times, to find creative outlets, to think how they can exercise now that they can’t go to the gym. In other words, be on the end of the advice we’ve been getting from professional our whole lives.

Many disabled people are bitter at finding that measures that have for many years been judged “unreasonable” are suddenly eminently doable. Working from home? Fine! Travelling outside rush hour? Sensible! Communicating via email rather than attending face to face meetings? It only makes sense! If, disabled people are asking, it’s suddenly possible to shift entire companies to working in these ways, how come proposing them as reasonable adjustments for a single worker tends to be greeted by a knock back?

The coronavirus situation is of course hugely anxiety-provoking for a large proportion of the population, but again I can’t help feeling like, Oh, do tell? That sound snarky, and I don’t really mean it to, but it’s another instance of abled people suddenly entering our world. I have spent years working with my Community Psychiatric Nurse trying to address my isolation by overcoming my anxiety and joining in activities in my town. She’s been worried that over time my life has become smaller and smaller, particularly as I can’t manage public transport, and has referred me for cognitive behavioural therapy to tackle the problem. But now there’s nothing to try to be brave for; the yoga classes and choir I enjoy weekly have closed down, as have the Zumba class and ukulele group I occasionally attend. The library and the leisure centre have shut up shop. As almost all journeys by public transport are now deemed unnecessary, I don’t feel such a freak for avoiding the bus. I sometimes find it impossible to force myself to go out and meet even my dearest of friends, but now nobody wants to meet up in public anyway and we’re all avoiding having or being visitors.

If generally well people think that their current anxiety is bad, they could spare a thought for the with existing anxiety disorders. People with obsessive compulsive disorder who obsess about cleanliness are now struggling to know whether their hand-washing is a sensible precaution, or an out of proportion compulsion. Many people who struggle with obsessional thoughts have intrusive beliefs that they may cause harm to other people, and again it’s very hard to tell the pragmatic from the panicked with so much advice circulating about individual responsibility to protect the most vulnerable. Knowing that there actually is a real threat lurking outside the front door plays right into the hands of panic disorder and agoraphobia. Those who suffer from health anxiety at the best of times must be terrified each time they cough and again, is taking your temperature daily pathological, or just sensible?

Because it is very common, anxiety is very often written off as a lesser mental health issue. The terminology is not well understood. Until I explained to one HR manager exactly what “generalised anxiety disorder” meant, he assumed it meant “ordinary anxiety that the general population gets.” OCD is joked about thousands of times a day as people who straighten their pens get a “diagnosis” from their colleagues. Little thought is usually given by the abled majority to people so debilitated by anxiety that they cannot leave their homes.

If I were more of a glass half full person, I might choose to believe that the free-floating anxiety generated by the coronavirus pandemic and the experiences of isolation will give abled people an empathy-generating insight into the lives of people whose lives are made smaller by anxiety disorders. I suppose there is hope that now it’s proven that businesses can survive home working and flexible start times, manager might start to view such requests from disabled people as genuinely reasonable adjustments under the Equality Act 2010. Sadly, I’m not a glass half full person, and I can’t tell whether this is part of my bipolar, or just the benefit of decades of experience of disability. In the meantime, I’m continuing to give abled friends and relatives the benefit of that experience, offering people who I know will spend a lot of time alone support through video calling or texting, making arrangements for virtual meet ups, and sharing a lot of cat pictures (if you haven’t met my cat yet, she’s @MissCinnamon6 on Twitter!).

I promised a friend that we would keep each other accountable in structuring our days indoors and my goal was to write from 2.30-3.30pm. It’s 3.20pm now, and by the time I have re-read and edited, I’ll have hit my target. There you go, Agnes!

 

 

(Image shows an magnified picture of the coronavirus and was sourced from Flickr, where it was added by Alachua County. Modifications and commercial use of this image are permitted.)

Crisis? What crisis?

I’ve thought about blogging so often in recent weeks, with several abortive attempts. I considered writing about the therapeutic benefits of having a companion animal – if you don’t follow me on social media, I now have a cat! She’s just over a year old, small and black, and she’s called Cinnamon (or @MissCinnamon6 on Twitter). We’ve had her just over two months and she’s changed my life. I feel excited to see her when I get up in the morning, and I feel special and loved when she’s sitting on my lap, purring away (yes, yes, I am excited to see Tom in the morning and he does make me feel loved and special!). I get so much from having her living with us – except when she brings in live birds.

So there’s been good stuff to report but, sad to say, much more on the bad side. About four weeks ago, I woke up depressed. No rhyme, no reason, just low mood from the get go. Everything became a struggle. Sometimes even lifting a fork to my mouth felt like too much effort. I had no motivation and woke up every morning wondering how on earth I was going to get through each long, long day until I could go to sleep again.

Things worsened. My mood dropped further, and the inevitable suicidal thoughts began to creep in, quickly switching to active planning. I saw my consultant a week ago, and she asked me to rate my risk on a scale of 1-10. I estimated it at a 5; the thoughts were intrusive but I did not feel like my life was not worth living. We discussed whether the dose of my antidepressant should be increased, but Dr A was worried that this could lead to mania, so we agreed – slightly reluctantly on my part – to keep my medication regimen intact.

The next day, my risk assessment changed. I began to feel more emotional pain that I had done in years. When I cried, it was not just in sobs but in howls. When my Community Psychiatric Nurse visited three days ago I let it all out, how much distress I was in, how I couldn’t live with it, how Tom would be better off without me so he could marry someone who could be a proper wife to him. If people knew, I said, if they knew the despair I was trapped in, they would want me to be released from my pain. You wouldn’t let an animal suffer that level of physical pain, why should I have to bear this level of mental pain? By this point I estimated the risk at a 9.

Despite my anguish I was trying to be sensible and mitigate that risk, because my goal for 2019 is to get through an entire calendar year without a hospital admission. By the time I saw my CPN, I had voluntarily surrendered my phone and laptop, because I was using them to research ways to make my death easier. Later that day, I gave up my bank cards, because I didn’t trust myself to run off to Cardiff or London to take my life. I suppose you could say that meant that I didn’t really want to die; from my perspective, it was more a fear of failure, of being picked up by the police and ending up sectioned in a ward hours away from home. I didn’t trust myself to be competent enough to do it right.

My CPN was really concerned as I explained that now I had given up my access to money and the internet I felt stupid, that I had trapped myself and now had no way out, exacerbating my desperation. She’d seen me low before, but never like this. At this point I was thinking that I actually would need to go into hospital. There was no discussion about whether to involve the Crisis Team; she stated that she was going to make the referral and that they could come that evening if needed. With Tom at home we decided that the visit could wait until the following day. She also made the decision that she would speak to Dr A because it seemed like the antidepressant should probably be increased after all, because it was clear that the risk of mania was less than the risk of, um, death.

By yesterday, my first day under the Crisis Team, my despair had lessened somewhat – I think as result of unburdening myself to Tom and my CPN so that I was no longer alone with my grim plans. I was still relieved to see the nurses, both of whom I had met before during my last stint as a CT patient, and still quite tearful. They were reassuring. They felt that I had done the right thing in gviving up my internet access and back cards, and they approved of me taking 5mg diazepam three times a day. They were pleased to hear that I was doing all the clichéd distraction stuff – aromatherapy baths, reading, watching TV dramas, colouring in. Thank god nobody mentioned mindfulness. They agreed that they would come again tomorrow to check on me.

And then this morning I woke up and I was cured. OK, not cured of bipolar, but cured of despair. Not a sniff of misery; in fact from the moment I opened my eyes I felt wonderful. I had never felt less like killing myself in my life! I felt like singing all the time. I felt wildly enthusiastic about the weekend break we have coming up next month (something I had sobbed to my CPN I couldn’t bear to think about). Tom quickly noticed that I had got my sparkle back – and then some. The only worry on my mind was that the CT nurses would think I was a massive fraud and a waste of their time. In fact, they were great. Naturally they were a bit surprised, but they recognised that my mood is elevated and that elation is pathological in itself. We all agreed that given the circumstances, upping my antidepressant was not a smart move, a consensus that the nurses planned to feed back to Dr A.

We discussed what to do over the next 24 hours. I came under (respectful) pressure from Tom and the nurses to keep taking diazepam to reduce the mild elation I am feeling, but I said no. I’ve been in hell in the past week, and a colourless, confusing wasteland for weeks before that, and now I’m out of that, I want to enjoy it. In fact I feel that I downright deserve a bit of elation after my recent suffering. And it’s not enough; I want more. It’s pretty much how I was in August – reluctant to take my mood stabiliser and antipsychotic because they’re inhibiting my chances of hypomania proper.

Round and round I go. I guess I did fairly well, going about three months with my mood essentially stable (OK, I still had utterly debilitating anxiety every single day, but hey). I think there are probably people who find it had to believe that I really can wake up in a completely unexpected mood state but that’s the really disabling part of rapid cycling. I can’t see depression coming, and I can’t see hypomania coming. Bam! There it is.

The plan now is for the Crisis Team to monitor me until my CPN comes back to visit on Monday. They’ll be phoning tomorrow (Friday) and possibly visiting on Saturday or Sunday to check how I’m going and that I’m not going higher. So I feel well supported. The challenge for me is to behave. I know that my part in all this should be to implement my longterm hypomania management plan, but, but…

But…

 

Image shows a sign with arrows pointing to “down” and “up”. Sourced from Flickr, commercial use and modifications allowed. Credit to https://www.flickr.com/photos/smallcurio/

Scream if you want to go higher

It is often said that people with severe mental health problems exhibit poor compliance with drug regimens. I loathe that word, compliance. The only time I ever felt really annoyed at my CMHT consultant in London was when he said that it was “nice to have such a compliant patient.” It irked me because it made it sound like it was pleasant experience for him to give out orders and have them followed. I didn’t take my meds to make him happy; I took them because I wanted to try and be well.

There are many reasons why people start on psychotropic medication and then discontinue (with or without medical supervision). It’s not a particularly nice feeling to have your life ruled by meds, which you must take at different times of day, some with food, some without food, some of which might be sedating, others of which may in contrast be “alerting” and make you agitated. Most drugs have side effects which can range from nausea and constipation, through insomnia and sedation, to life-threatening skin rashes, exponential weight gain and unwanted breastmilk production. It’s no wonder that many people reach saturation point with how many side effects they feel they can cope with. It’s particularly depressing to be told that you may need to be on one or more psychiatric drugs for the rest of your life.

A common complaint I have heard from people on mood stabilisers is that it makes them feel “flat”, that in reducing the highs and lows of bipolar they somehow lose something, become diminished. I never really understood this. I took lithium and the lamotrigine and I didn’t feel flattened out, which I suppose is unsurprising as they failed to control my mood swings. Then I started on lurasidone and my moods really evened out. I didn’t feel flat, though, I felt more like me, that although my anxiety was still very debilitating, I was less disabled by actual mood states than I had been in a long time.

But things have changed.

I am now experiencing an active episode of rapid cycling mood instability. I think it was triggered by the process of reassessment for Personal Independence Payment (PIP), which resulted in my enhanced PIP payment being stripped from me because the assessor, who I saw for all of 40 minutes, decided I had no difficulties in life and awarded me zero points across all domains. That hit me hard, and came around the same time as going on holiday, which is often destabilising for me. I found myself waking up despairing and tearful several days in a row. Then, quite suddenly and inexplicably, my mood switched and I found myself first elated, then battling mixed mood. For almost a month I have been rapid cycling, the mood graph I have been keeping for my Community Psychiatric Nurse (CPN) wildly spiky. The amount I sleep varies from 14 hours to 3 hours, depending on where my mood is at. My anxiety score when my mood is elevated is almost nil, virtually unheard of for me.

It had been so long since I had been hypomanic that I had forgotten what it was like. I had actually forgotten. On down days I cried not just because I felt low, but because I was mourning my hypomania. I had a great thing, and it had been taken away from me. It didn’t matter how many people pointed out that the low might only last a day or two, that tomorrow I might feel good again. I was bereft.

Then I had another bout of high mood. It was the highest high I have had in several years, and it was wonderful, yet I felt frustrated, because I knew it wasn’t as wonderful as my highs used to be before I started taking lurasidone a few years ago. Yes, I got up at 3am to start work on blogs for other people without feeling a shred of tiredness later, but I didn’t have the grand, “genius”, creative ideas I used to get. Noises were extra loud, and some tastes were overwhelmingly lovely, but colours were not as bright as I would have liked. I didn’t feel fully at one with the universe.

This coincided with Tom being away for three days. I partied hard, thrilling to the music I played at ultra-high volume, singing along, my voice sounding better that usual, and I danced and danced, but I didn’t quite attain previous levels of ecstasy. I drank a lot of alcohol and a lot of caffeine and lived off junk food, eating at strange times of the day and I felt wild, but not as out of control as I wanted to be. And the thought came to me: I feel really great, but I could feel so much more. It’s the meds that are holding me back.

All at once I did not want to take the meds anymore, especially the lurasidone, which I credit with having kept the highs in check for so long. I suddenly knew what people meant when they said they were “flattened” and I felt resentful that I was being denied the full richness that bipolarity has to offer. I felt that it was unlikely that I would go low if I stopped, and that even if I did, it was a risk I was willing to take to pursue a more significant hypomania.

I floated this idea on Twitter and received unanimous feedback: “DO NOT STOP YOUR MEDS!” Despite this good advice I felt a strong resistance, almost a revulsion, when I considered swallowing my nightly doses. I texted Tom: “I feel like stopping my meds but you would be sad and angry if I did that, wouldn’t you?” That, apparently, wouldn’t be the half of it.

Then yesterday I was low again. I spend most of my time hiding from my lovely relatives who are here as houseguests. I cried long and hard, more than I have done in months. I clung to the idea of my meds, knowing that they stopped things from being worse. I had some obsessive thoughts of overdoses, particularly after uncovering a small stash of lithium I had forgotten about. I told Tom my feelings and he took away any drugs other than those which were strictly necessary. I began to feel scared that I would go into crisis with lots of visitors around and that this would be absolutely awful.

I woke up briefly at 5.30 this morning and knew without a shadow of a doubt that my mood had lifted. When I plot today’s feelings on my mood graph I will be somewhere on the cusp of normal/positive and elevated. I certainly don’t feel quite normal. But that’s not enough for me. I want more. I want to go higher, be faster, reach a more exalted plane. I feel dissatisfied with my mundane life and long for the peaks of a really intense hypomania. Once again I am feeling mutinous about taking my meds.

There are risks to hypomania, people keep reminding me. I could crash into a horrendous depression when I come out of it. I could very, very easily enter a serious mixed mood, that could put me in hospital. I could have what would be only the second true manic episode of my life and do things, say things, buy things with irreversible consequences. But I am finding it so very hard to care about these possibilities, which feel very theoretical.

So I guess I will go on forcing myself to take the drugs, with an ill grace such as I have never experienced. Tom is keeping an eye on me, but there is a tremendous temptation to simply take the pills out of the dosette box so it looks like I have taken them, and throw them away. The thing that stops me doing this is not fear of what my mood might do, or psychosis returning, or withdrawal effects, but a terror that Tom might finally lose patience with me. He puts up with so much, does so much for me, and does it willingly because it is not my fault that I have bipolar. If, however, I had severe symptoms because I had chosen to be non-compliant, he might feel very differently. It might rock our marriage, and there is no way in the world I want to do that.

So I will take the lurasidone and the lamotrigine (I would’ve kept taking the levothryroxine and the duloxetine anyway, as if anything they would push me upwards). I will let Tom supervise the doses if needs be. But I don’t want to. I baulk at it, like a horse refusing a jump, just a big sense of NOPE. Somehow I will have to coax myself over the jump, but the thought remains: not wanting to feel hypomanic, now that’s really mental.

 

 

Have you tried mindfulness?

I was sitting at my dining table with Tom and two members of the Crisis Team. They were there because I was experiencing overwhelming intrusive thoughts of running away and killing myself. My mind was totally out of control; I didn’t feel like “me” anymore. I was beyond self-help strategies, and that is why we were considering another hospital admission. I had thought we were all clear on these points, but then the healthcare assistant leaned in and said, “Have you tried mindfulness?” This was not the first time a member of a Crisis Team had asked me this very question.

Well, crisis lady, as a matter of fact I have tried mindfulness. When I was working I paid a lot of money to undertake private Mindfulness Based Cognitive Therapy, and over the years I have dipped in and out of a formal “insight” meditation practice. I learned a lot from MBCT about what mindfulness is – and what it isn’t.

The first thing I learned is that mindfulness is unsuitable for people who are poorly. My MBCT teacher phoned each prospective group member individually to warn them that if they were actively unwell, now was not the time for them to undertake the course.

The next thing I came to understand is that mindfulness is a skill. It has to be taught. You can learn from books, but it’s probably a lot easier to learn from a teacher. It is both a philosophy (loosely drawn from Buddhism) and a technique. It has to be practised. One cannot “try mindfulness” as a one off event requiring no prior knowledge or experience, the way one can try a cup of chamomile tea to see it helps them sleep.

My main takeaway from MBCT was that in practising mindfulness we don’t seek to do or change anything. Whatever thoughts, feelings, bodily sensations arise are to be observed, but not consciously changed. It’s about noticing, not about trying to make things different. Most often in mindfulness meditation your breath is used as an anchor point; when you feel your mind starting to wander away from noticing what is (which it inevitably will), you pull your mind back to you breath. Again, you are not trying to change anything, so you don’t breathe in a certain way to try and make yourself more relaxed. You just watch.

My latest brush with “mindfulness” – and I put that in quotes for a reason – has been on an NHS Emotional Coping Skills group work programme I recently completed. It was pretty much an abridged version of Dialectical Behavioural Therapy (DBT), which tries in improve people’s ability to tolerate painful feelings, increase their ability to soothe themselves when in distress, and have more effective interpersonal interactions. A central tenet of DBT is that mindfulness is a key skill in learning to deal with and regulate strong emotions.

This NHS brand of mindfulness left me confused. Some of it did seem like mindfulness as I understood it – for example, we undertook a meditation where we just observed the sounds around us, trying not to attach to any of them or make any judgements about them. We also did the dreaded “raisin meditation”, which has become rather a joke in the online mental health community because it is so ubiquitous (I had already experienced it in MBCT) and so… silly. The idea is that you choose or are given a raisin (one man in my group work programme was allergic to raisins, so he was allowed to have a Rich Tea biscuit), which you then interact with. You look at the raisin, concentrating minutely on its appearance, on its uniqueness, on how its wrinkles are like no other raisin. You sniff it to see how it smells. You bring it to your ear (yes, really) to see if it emits any sound. You roll it between your fingers, feeling its texture. Eventually you are allowed to pop the raisin into your mouth, but you have to hold it there, noticing if your salivary glands are activated, noting if you have the urge to chew. Finally, you are allowed to bite into it. I admit that by this point I find the raisin tastes better than anything I have ever eaten, almost too sweet to bear. And that is the point of the exercise – to slow things down so we can really notice what’s going on. If we cram handfuls of raisins into our mouths, as I am won’t to do, we are missing out on the authentic experience. But it does feel pretty embarrassing as an exercise.

Anyway. So some of it was proper mindfulness stuff, but then there was “distraction as mindfulness” or perhaps “mindfulness as distraction”. This confused me, because it involved completely turning our attention away from what we were thinking or feeling and engaging in some other task. Word searches, for some reason, seemed very popular. We did one about breeds of dogs and another one about healthy eating. The meditation bell was rung at the end of the allotted time period, to make it seem more… mindful. But if the goal of mindfulness is to notice but not change things, how can deliberately doing something different to change your mind state be mindfulness? Surely mindfulness and distraction are two very different things?

And here’s the key thing for me. I think they are different things, and I think that for crisis situations, distraction is an excellent tool to use, as long as you are distracting yourself with something safe. I use colouring books. I know I’m probably the only person in the world still surfing the adult colouring wave). I do jigsaw puzzles, I read (when I can concentrate on it), I have a bath or shower, I try eating something, whatever, to distract myself from suicidal thoughts. I believe that sitting with them and noticing them gives them houseroom and is dangerous. This BBC article notes that mindfulness can be damaging in that it can make you aware of difficulties, without giving any tools to deal with them. Some people find meditation, especially watching the breath, makes them feel panicky, particularly people with breathing problems like asthma.

I could move onto more political objections to mindfulness, that it puts the onus on the self to observe reactions to structural inequality, austerity, racism etc without putting any energy into fighting social ills that generate mental health problems. From that perspective, it is an ideal neoliberal therapy. But that could be a whole blog post in itself.

There is no real standard against which mindfulness teachers are judged. You can have decades of formal meditation practice, or you can do a brief course and set yourself up in business. It’s pretty obvious that most NHS mental health professionals – particularly nurses and healthcare assistants – will have done very little training in mindfulness, if any. “Mindfulness” is a buzzword. Most people suggesting it have no idea what they are suggesting, let alone that it is a skill that takes potentially a lifetime of practise, never mind the fact that it can be dangerous in active episodes of mental illness.

Yet still it gets recommended by Crisis Team members over and over again. By rights I should wait until tomorrow to finish this post, because my Twitter poll doesn’t close until then, but what the hell: as of this moment, 81% of 302 people say that they have been asked the question, “Have you tried mindfulness?” when they believed that they were at imminent risk of harm.

Why are we allowing this to happen? Why are Crisis Team staff encouraged to recommend something they know nothing about? Why are so few people talking about the fact that mindfulness can be dangerous if practised at the wrong time or without the necessary grounding? How is this OK, and how have we come to this point?

And now we’re at this point, how do we change things?

Running up that hill

Trigger warning: this post contains descriptions of suicidal thoughts, including methods. Please don’t read on if you are feeling at all vulnerable.

I want to run. I am desperate to run. When I wrote my last post my idea was to run from Smalltown to Biggertown or Bigtown, and from there on to The City, at least. Cardiff, better. Maybe even Bristol. I knew I would have to be on the run for several days to amass enough over the counter meds to successfully OD on. I thought about the need to keep my phone off so I couldn’t be tracked, the need to use hotel computers and printers to obtain maps. I thought about returning to the same pharmacy several times in one day, changing my appearance so that I had a different noticeable feature the same time. I was that woman in the bright red lipstick. I was that woman in sunglasses. I was that woman with the fringe, with the chignon, with the hat. I thought about dying my hair in a hotel room. I have watched too many Jason Bourne films. I have watched too many episodes of The Americans.

Now there is nowhere really I can run to. I cracked and confessed to my Community Psychiatric Nurse that I had secretly withdrawn £300 in cash and moved all of my student loan money into my current account for easier access. I let her know that I had booked a hotel room for the first part of my plan, but that I had been thwarted because Tom hadn’t let me out of his sight around the time I had thought I would be able to bolt. She said that I would have to tell Tom, and that she wanted me to do it myself. because we had reached the stage where risk outweighed confidentiality. She made it clear that she was very concerned about my risk level. I sensed I had two choices: cooperate, or find myself going down the Mental Health Act assessment route.

So I went and got the cash and I handed my debit card and my credit cards and my bus pass and I gave it all to Tom. Knowing that I had been using my phone to book hotel rooms, check train times and taxi numbers and minimum lethal doses, I was forced to surrender my phone and my laptop. I negotiated a quick trip to Twitter to let people know what was happening; I had been talking in a pretty worrying way and I feared that sudden silence would lead people to suspect the worst. We agreed that I would be able to check for texts and emails twice a day, under supervision.

Unsurprisingly, this is the point that the Crisis Team got involved.

So now I can’t run to a city. I can’t even run to Biggertown. I can’t call for a taxi and even if I could, I couldn’t pay the driver. I feel infantilised. I had to ask Tom for money to buy his own birthday card. But it’s warranted, it’s all warranted, because even as I entered the gift shop I was wondering if there was a back door I could escape through. Because even though there is nowhere to run to, I am still desperate to run. I look for every opportunity to get away, but there are precious few. I am obsessed with the idea of running away at night while Tom is sleeping. In my desperate panic to escape, my brain is starting to play with methods I have never before considered. I keep thinking about ligaturing. If I could get to the coast (which is ten miles away), I could fill my backpack with stones and walk into the sea. I know that sounds an unlikely method, but I knew someone who took her life that way.

Last night I went to bed so, so miserable because I couldn’t stop the desire to run up the hill into town and then away. Suppose I did get away during the night, where would I go, in the dark, unable to leave Smalltown without walking for hours? As a Crisis Team nurse pointed out yesterday, I would be vulnerable, a woman alone at night, bringing up yet more issues for them to be concerned about. To compound things, I have thought about hitch-hiking. I seem to be obsessed with placing myself at risk. And what would happen? The police would be called and there would be a hunt for me. Once found – and there are only so many directions I could walk out of a town so small – I would be detained under s136 of the Mental Health Act, which would give the police the power to take me away to a “place of safety” until I could be further assessed. I would probably end up sectioned, and as my CPN warned me the other day, it might not be the local ward in Biggertown, because there might not be a bed. It might be a ward I do not know, in Bigtown, or The City, or failing that “anywhere along the M4 corridor”.

Do I want any of that? Of course not. And anyway, what would I be running from? A fantastically loving husband, a beautiful house with a garden we are putting a lot of work into, a welcoming community. Would I, were in my right mind, want to abscond from that? Again, of course not. Therefore I am not in my right mind, and I know it.

Yet I am desperate to run.

 

Image shows a pair of running shoes. Sourced from Flickr, commercial use and modifications allowed, credit https://www.flickr.com/photos/tenisama/

Hospital at home

Trigger warning: suicidal thoughts and planning

A depressing side effect of being a seasoned blogger with a fluctuating condition is that the archive makes it very clear that I go around and around, having better times, then having groundhog day times when it’s clear that I lived though similar crises to the one I find myself in now. I remember that almost exactly two years ago I was in a situation of extremely rapid cycling, moving from anxiety, emotional pain with a desperate desire to be in hospital, hypomania and a calm sense that there was nothing at all wrong with me, all in the space of a day. I’m in a very similar situation now, although the shifts are not quite as quick. I seem to be alternating between anxious/depressed and “normal”/elated.

Yesterday I refused the offer of a Crisis Team referral from a concerned Community Psychiatric Nurse (CPN). Tom was confident that he could manage me at home over the weekend and we would see how things were on Monday. In the night, when I could not sleep and I could not calm my brain despite diazepam and reading and a relaxation app, I regretted my decision not to involve the CT, because as long as I remain in the community, I feel at risk.

The current state of play is that part of my brain wants to kill me. Its first order of business is to find a way for me to abscond from Tom’s care and make my way to the nearest big city where I can disappear. Its second priority is to visit enough pharmacies to stockpile enough over the counter meds to poison myself to death. Its third priority is to take those meds in an anonymous hotel room. Always with the hotel room! I bet if you put that in as a search term on this blog you would get a lot of hits.

Tom’s plan is to keep me on 1:1 observation. 1:1 or arm’s length obs means, in a hospital context, that you are never left alone. You can’t shut yourself away in your bedroom because someone is always in your open doorway, even when you are on the toilet (assuming you are lucky enough to have en suite, otherwise they follow you to the shower room or the loo). You don’t even get to shut your door while you are trying to sleep; someone watches over you the whole night – although I know I am not the only one who has seen nurses asleep in their chairs while on duty in the middle of the night. Tom is also right beside me all day and all night and, as on a ward, he is making sure I take my meds.

I am allowed to bath and go to the toilet in peace, but Tom’s not going to stand for me leaving the house alone, nor is he going to leave me at home alone, unless there is absolutely no way I can run away from Smalltown and catch a train to The City. This morning I negotiated a walk into Smalltown by myself but to do that I left my bus pass, bank card, cash, phone and Apple Watch, taking only a £1 coin to buy a can of Coke. There was nowhere I could do and nothing more nefarious I could do with a quid.

Because I am not trustworthy. Where there is cash, there could be taxis. Where there is a bus pass there is the means to access a station with more regular trains to The City. Where there is a debit card, there could be train tickets, hotel rooms, pharmacy payments and things to make the pills go down easier. I simply cannot stop thinking this way. Tom offered to take me to the local rugby match this afternoon, but I know that I couldn’t be trusted. One trip to the ladies, coordinated with the bus timetable, would mean an opportunity to slip off.

Of course, here in rural Wales I have to be a bit more creative than in London, where there are night buses and multiple suburban back roads to the station. Much less chance of being discovered. Unless I timed things really well or took a taxi it would be very easy for Tom to drive to the station, or the next station, or the next bus stop and simply bring me home. Presumably if he didn’t find me, he would call the police, and if I hadn’t made it to The City I would be at high risk of being detained under s136 of the Mental Health Act and taken to a “place of safety” God knows where. Maybe a police station. Maybe a hospital miles from home.

There is a lot to risk in trying to sneak off and yet part of my brain insists on playing out every scenario, virtually all the time. I have to be incredibly focussed on something else not to be working out new angles, new opportunities. I have my colouring book out (what a good, mindful girl) and I’m working on a design that’s so complicated I can only do so for about ten minutes before my concentration reaches its limit. But still, that’s 10 minutes. I’m OK while I’m reading in the bath (and I am taking a LOT of baths) but I struggle to read just on the sofa. I might get a jigsaw puzzle out. The only time I ever do them is when I’m poorly.

So if that’s part of my brain, what’s the other part doing? Well, it’s trying to keep me alive. It’s encouraging me to be honest with Tom about my thinking, even though I know it must be hurting him. It encouraged me to get in contact with my CPN to say that I actually needed to see her more quickly than 16 days away, which was when we had originally agreed to meet each other – our first four week gap! Because I was doing so well! Haha. She came to see me on Wednesday, and again yesterday (Friday), will ring me on Monday, and is coming again on Tuesday. If I feel the need for the CT before then, my only option is to go to A&E, because here in this part of Wales you can’t self refer like I used to be able to do in London. That is not something I am keen on.

What will I say on Monday? It depends how the next 48 hours go. Will “hospital at home” be enough? Part of me already wants to go into proper hospital, because based on past experience, being locked in and not allowed leave from the ward knocks the stuffing out my plans to abscond and without absconding, I can’t follow through on my overdose plan. I know that Tom doesn’t think that’s necessary, but it really depends on how exhausted I become by the war between the sneaky and the rational parts of my brain. Just in case, I am already thinking about what I might take. I bought an enormously long book that has been recommended to me by a couple of people. If I went in this time I think I would risk it and take in my laptop too. I know from previous experience that the ward here is the most boring place in the world; no activities or groups, and with a very high patient turnover, little chance to build meaningful friendships. I can’t help comparing it with my first admission, where I formed real bonds with people. I was in text contact with one of my ex ward buddies only this week, over three years on, and we still agree that in many ways that admission was a really positive experience for us.

It will all come down to whether I think “hospital at home” is safe enough, and whether I get so exhausted by my own thoughts that I no longer care that the ward will be a crappy place to be. A complicating factor is that my mum is due to come and stay for a few nights this Tuesday. This could be a helpful thing. It would give Tom a break from having to care for me 24/7. We would go and do touristy things around the area which would be a good distraction. But I worry that I might put her through the kind of pain I am already putting Tom through. I worry about being visibly bonkers in front of her, as she has never seen me in full on crisis mode. I don’t know what to do for the best. I don’t know whether to tell her not to come, I don’t know whether to go onto the CT books. I don’t know what to do.

 

Image shows a red card with the word CRISIS written in black in the centre. It was sourced from Flickr, commercial use and modifications allowed, and was uploaded by Ron Mader

On having a “carer”

By now I am a veteran at completing application/review forms for Employment and Support Allowance (ESA) and Personal Independence Payment (PIP). ESA is for people who are too sick to work, while PIP is to cover extra expenses associated with being disabled and can be claimed whether working or not. The standard suggestion by advice agencies is to explain your condition in terms of your worst day. A “mustn’t grumble” traditional British attitude, or answering questions on a good day while pushing the horrible times to the back of your mind, will make you look like there is nothing much wrong with you, and means you are unlikely to get the money that you deserve.

Because my condition is very complex, for each question about daily living I have to answer in four ways:

1. How I can or cannot cope on a depressed day
2. How I can or cannot cope when hypomanic
3. How I can or cannot cope in a mixed mood state
4. How acute anxiety affects my ability to cope.

I always have to stress in every question that I am a rapid cycler, so that in addition to perpetual anxiety I could wake up any day depressed, hypomanic or mixed. That is the most disabling aspect of my condition, and the one that makes me unable to take on a job.

For each activity, I have to say whether I need supervision or “prompting” to manage daily living on a given day. For example, when I am hypomanic I may need prompting to stop and eat, and I may need supervision to cook because I am so distractible I do things like leave the gas on. When I am mixed and suicidal I need prompting to take diazepam, undertake distracting activities and tell professionals what is really going on, and I need supervision around meds and going out alone for my own safety.

Who does the prompting and supervising? Tom, of course. One of the most depressing things about filling in the forms is that it highlights just how often my husband becomes my carer. Neither of us want that. I don’t think he actually sees himself as my carer, and when I thank him for looking after me, he looks a bit baffled and says, “You’re my wife!” But right I do feel like he is my carer, because I need so much prompting to do daily things and protection from myself. I’ve been depressed for days now and fighting urges to overdose, so now Tom is holding onto any meds that could harm me. Today I woke up again feeling low from the get-go and within a few minutes, I was crying. I really needed to wash my hair, but I just couldn’t. Right now a bath feels comforting but washing my body is difficult, and washing my hair feels like a step beyond what I cam capable of. When Tom offered to wash my hair for me, I cried harder, because of his kindness.

In the end I was able to wash my hair with the “prompting” of him being in the room as encouragement, but drying it was just impossible. So he blow dried it for me, something he has never done before. It was kind of relaxing, but also kind of depressing because he had had to step in like that. I cried all the way through. Next, he helped me pick out some clean clothes to wear. I managed fresh knickers myself but he helped me find a clean vest top and a jumper, so that I will be warm and comfortable today. This gave me the courage to find some clean socks (I had been wearing the same one for god knows how many days).

This afternoon I have a podiatry appointment. It’s at the general hospital, where I have never been before, and I have to find the right department. Although on a good day I could take the bus to the hospital by myself, right now that feels like too much, and the actual hospital part would probably be beyond what my anxiety would allow on any day. So he’s taking me there. He’s already taken me to physio this week and is taking me to Emotional Coping Skills group tomorrow. All of these are things that I should be able to access on my own by public transport, but right now I just can’t. Left to my own devices I would’ve ditched physio and certainly not shown up for podiatry, which seems like the least important of all the things I need to do this week. I would, of course, regret that decision later.

I need help cooking and avoiding a diet which is just crisps and Coke. We have just received a Tesco order full of things that are easy to make – pizzas, tortilla wraps, jacket potatoes – but lately I have found myself grinding to a halt during simple tasks like chopping vegetables for salad. Anyone who follows me on Twitter will know that normally I love to cook, so eating oven chips feels like a defeat, let alone having to hand over food prep to Tom. It also engenders guilt. He looks after me in so many ways and one of the key ways I look after him is meal planning and preparation.  When I can’t produce nice, nutrious food I feel like a failure.

So today he is my carer and I hate it. I’m getting good support from the Community Mental Health Team – my Community Psychiatric Nurse came yesterday and is coming again tomorrow, mainly to flag me up with the Crisis Team in case I need to access them over the weekend. I’m being encouraged to make good use of diazepam, something Tom mostly has to prompt me to do, and today I need him to drop me off at the GP surgery so I can put in a request for more (I’m getting through it at a rate of 2-3 x 5mg a day, rather than one or two a week). Whether the request will be granted is, of course, another thing for me to feel anxious about, although I know my CPN and consultant will get involved if the GPs are funny about it.

I hate this. I hate having to be prompted, I hate having to be supervised, I hate needing a carer. I hate being the person I have to describe in my ESA and PIP forms. I want to be strong and independent and able to look after myself. But I can’t and I’m not, and yet again the suddenness and severity of this episode has taken me completely by surprise, just as I describe in the forms. It’s nice to be cared for, but it’s not nice to need a carer. There’s a big distinction there. I feel very disempowered and very pessimistic. What if I didn’t have Tom? What if he wasn’t around to be my “carer”? These worries feed into my suicidal thinking, which of course makes me need to depend on me more. What a catch-22 the depressive mindset is.

Image shows a person with unwashed hair covering their face with their hands and is taken from Flickr. Commercial use and modifications are allowed. Image by viviandnguyen_

 

These are not the little things: unsanitary conditions on mental health wards

Today I got angry after reading a tweet. Just a regular day then, you might think, except this one made me so angry I have had to blog for the first time in months. I was reading a thread about a conference on “rapid tranquillisation”. For those who don’t know, on a psychiatric ward this means administering a drug, generally by injection, which knocks the patient out. Patients usually have to be restrained by staff for this to take place. I am very, very fortunate that I have never been restrained or injected, but I can assure you it is difficult to watch, and I have read enough accounts by those who have been subjected to it to know that it can be utterly traumatising (if you want to know more, @Sectioned_ has blogged about her experiences extensively). I had to back away from the thread pretty quickly, because I found reading about RT being discussed in a very theoretical, dispassionate way – what combination of drugs works best? Oral or injectable? – distasteful and disturbing.

The anger part came in though when I read this tweet about minimising distress for people who have been rapidly tranquillised:

Environment is so crucial in helping people manage distress. Little things ie. flashing lights, dirty conditions don’t help mental health. Keeping things simple is very important.

Little things? Excuse me, but – little things? Having to live in squalid conditions when you are not permitted to leave, for weeks or maybe months, is a “little thing”? I don’t think so.

Earlier this week I read this blog from Recovery In The Bin, a critical theorist and activist collective that challenges dominant mental health narratives (I urge you to follow them at @RITB_ ). I was saddened but unsurprised to learn that on top of staff indifference and medication errors on the ward, the blogger had had to put up with a dirty, unpleasant environment:

The bathroom was filthy and not cleaned for two weeks, with a blocked drain that meant it flooded every time I took a shower. When I reported these things, the message never seemed to get to the right people. They were unable to find curtains for my room for the first week, and the floodlight outside the window meant I was unable to sleep properly.

I have been on three different psychiatric wards and without a doubt the worst environmentally was the inner London unit that I was admitted to in spring 2017. The shared shower room smelled so awful that I washed my body and hair in my bedroom sink for the 17 days I was there. I shaved my legs there too, foot up on the side of the rather high basin like a ballerina at a barre. When I used the toilet in that shower room I looked at the perpetually wet floor where the water never drained away and decided that, quite apart from not wanting to stick around in the foetid air, I didn’t want to put my bare feet in a perpetual puddle of bacteria. There was a separate toilet on the corridor that was about the size of an aircraft loo (why, I don’t know – the corridor was wide). It smelled like a train station toilet that never gets cleaned, so I had to hold my breath as I peed. The small size and the stench made me feel both claustrophobic and nauseous.

Someone who was not very well smeared poo all over the sink and toilet in the shower room. I don’t bear them any ill will. But it took over 36 hours for the room to be cleaned, so in the interim all the woman on the ward had to use one shower room and we were a toilet down. There didn’t seem to be much of a sense of urgency.

I was, as was the author of the RITB blog, “de facto detained” – I wasn’t under section, but I wasn’t allowed to go off the ward either, not even with a nurse. Even though I go into hospital voluntarily, I always feel a bit like I am in prison while I am not permitted any leave. On this ward, the view from my window of a blank, grey concrete wall and some razor wire didn’t exactly dispel that sensation. The unit was on the same site as a general hospital and I thought of going over there  to see if the toilets in the public areas were any better. I would happily have walked for a few minutes to avoid the pervasive smell of damp and shit. But of course I couldn’t.

That ward had mice on it; we saw them scampering about near the telly. They came up through a large hole around a pillar. Pest control experts had been brought in, but they said that there was nothing they could do, it was down to the Trust’s estates department to come and fill in the hole. By the time of my admission, the job had been on a waiting list for months.

Would you put up with this situation if you were on a general ward? If your relative avoided washing because the facilities stank so badly, would you think that was good enough? Is it acceptable to have to hold back vomit when you use the toilet on NHS premises? Are you content to watch mice scamper where patients have to sit to eat the toast they force down with their night meds?

These are not the little things.

 

 

Image shows a blue and white sign with the words “Now wash your hands”. This image was found on Flickr and may be used for commercial purposes and/or modified. It was produced by Peter O’Connor