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 , , , , , , , , , , , , , | 6 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: https://purplepersuasion.wordpress.com/2012/11/30/mindfulness-for-bipolar-disorder-simpler-than-you-think/)

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

Don’t fence me in: 10 signs of hypomania you won’t find in a textbook

Whenever I tell a new doctor that I’m hypomanic they ask me to describe what I mean when I use that word. I hate the question, because it’s glaringly obvious that they’re assessing my answers against criteria they have in their heads, probably derived from the big diagnostic manuals (DSM-5 or ICD-10). Obviously when hypo I do display classic indicators like decreased sleep, increased energy, increased libido, increased productivity and so on. And of course I understand there are core set of experiences people in a hypomanic state may share which is why they they tend to appear on mood monitoring charts or apps and in self-help books.

The problem with being measured against a general checklist is that accepted symptoms are not usually what I find herald hypomania. There are a whole a range of deeply personal things that I consider much more important in making my own assessment. So the risk of giving an honest answer is that I won’t match the checklist. I will not fit in the prepared box, so the clinician will conclude is that I don’t really know what I am talking about when I explicitly state that I’m hypomanic. This causes me huge frustration; I have worked and worked to be acutely aware of my mood states and to have that expertise dismissed because it’s unorthodox is upsets me every time it happens.

So I think I’ve decided I’m giving up on truthfulness with new professionals because I’m sick of my consistent, reliable signs of hypomania being seen as irrelevant. So I think I’ll share them here instead, and if I get up enough courage I might even pop a copy in the post to the psychiatrist ;)

Funny fingers. Whenever I’m going high I get this thing where I have to scratch or rub my fingers, especially the outsides of my little fingers. I have never successfully conveyed this experience to anyone. I tried to explain to the team registrar recently that it is something that I do it because my need to feel something there. He misinterpreted that and it’s written on my discharge letter that my fingers are numb. Not a bit of it. My fingers feel and function normally, but they need more sensation. I have to do it, I have to meet that need and give them more, otherwise the agitation builds.

Swagger. I’m hardly the sort of person that swaggers around the streets of London. In fact I’m often quite timid, scared of people when I’m depressed, ashamed of my body size and dreading the next time I’m asked me if I’m pregnant (no, just a quetiapine baby). Throw a little hypomania into the mix and I couldn’t be more different. Suddenly I walk in a completely new way. I stride. I sashay. I swagger. It’s a mixture of confidence, the certainty I am sexy, a touch of arrogance and a readiness to engage in confrontation. The best I can describe it is to suggest that you walk along to the track Battle Without Honour or Humanity and see how that feels.

Necklaces. When high, I dress differently – or as the registrar recorded, with more panache. It’s not just that I think more about my clothes than I would when I am depressed. It’s not that I go out and buy new clothes. It’s that apparently great outfits I hadn’t noticed now leap out of my wardrobe. Because my self-confidence is high I am also certain of my own attractiveness so it never occurs to me that I might not be able to “work it”. Most noticeably, the necklaces come out to play. Now, I will readily admit that I am a necklace fiend, if not a hoarder. I have about 50, all of them beautiful, and yet days or weeks can go by without me wearing a single one. In comes hypomania and suddenly the biggest and boldest, the “statement” necklaces, are also leaping out at me (and the compliments I receive of course reinforce my belief that I have great taste in jewellery and should hang on to every necklace I own, so yay).

Pointy teeth. For me one of the earliest indicators of a high is having pointy teeth. Of course my teeth aren’t really any pointier than usual; a quick check in the mirror proves that, as does the knowledge that this isn’t Bon Temps. But they feel much more pointy and I can’t stop running my tongue over them. This is part of a broader package of enhanced senses; my feet are more conscious of the interior of my shoes; things sound louder; colours seem brighter. But it’s always the teeth thing that tips me off.

Asinging and adancing. Based on my Twitter connections, this is a pretty common indicator but I’ve definitely never seen it on any mood chart. On an upswing I find myself travelling from room to room via the medium of Zumba-ish dance moves. When I would normally stand still – washing up, hanging the washing out, cleaning my teeth – I am side stepping or bum kicking or scooping (sorry, that probably make much sense if you’ve never done aerobics!). I chair dance while writing. I get up and start dancing when I should be working. I’m also very into singing, loudly and confidently, loud enough for my son to complain that he can hear me through two walls and a pair of headphones. At least he says I’m good.

Comely commuters. Often I will sit on the Tube and be oblivious to my fellow passengers, buried in my phone or my Kindle. Sometimes I will plug myself into my headphones and do a little people watching. But sometimes, hypomanic times, I find that the carriage is filled with unfeasibly attractive strangers. Everywhere I look there’ll be someone hot. I know I’m staring and that some people have noticed that I am staring and look puzzled and uncomfortable but I can’t help myself. They are literally mouth-watering and my breathing gets shallow, my pupils dilating. Luckily I am never quite manic enough to proposition anyone.

Sunsets. On an upswing, sunsets become almost unbearably beautiful. On long summer evenings when the pressure is high and the sky changes from blue to lemon to streaks of intense pink, I almost cry at so much splendour and the elation spikes and pulsate.

Tweet rate. I do type pretty fast – I learned in the fast-paced chat rooms of the very early noughties – and I do tweet a lot. But hypomanic I tweet a lot more, bam, bam, bam, one tweet after another and another. Online friends sometimes (with good reason) check in with me when they see how fast I am getting my tweets out there, but of course if I feel great I’m unlikely to want to tone things down. But I will probably note what they’re saying somewhere in the back of my mind.

Head music. Head music is another one I’ve frequently heard from other with bipolar but have never seen “officially” acknowledged. It is, I guess, a pseudohallucination – something that is “heard” within the head, but not as an actual sound as someone might experience if they hear voices. For me, it’s usually a loop of a particular song or piece, a particular musical phrase, a snatch of melody or, at its most annoying, a single word over and over again. It can easily be linked with a switch to mixed mood as I become very agitated by being unable to stop the music.

In the loop. Strangely the head music often has no connection at all to what I have been listening to. Which is a good thing, as despite the fact that I have 219 Spotify starred songs when I’m high I will play just one over and over, all day long (hoping the neighbours are at work). When Tom gets home and opens the door there is sometimes a very audible “Uh-oh!” as he clocks what I’m listening to. Again.

I’m not asking anyone to change any diagnostic criteria or mood apps on my account. In fact, I’m asking clinicians to do less work. I want them to sit back and trust that I know something about my condition and remember that I’m monitoring myself for the 23.5 hours a day while they get a 30-minute window. Now, I’m willing to bet that pretty much anyone who experiences hypomania has something weird and quirky that they know they need to watch that’s outside the diagnostic box. This is the stuff that professionals should value; they should be learning from our quirks. Don’t fence us in.

Posted in Bipolar, Hypomania, Mania, Self-management | Tagged , , , , , , , , , , , , | 26 Comments

I asked for help

I asked for help when I was 12.

I looked, alone, in my middle school library

at a teenage health book. It told me that

depression is an illness. It is real. You can be helped.

It took me days to summon up the courage

find the words to say, “I think that I’m depressed.”

“Everyone’s depressed!” was the response.

I left it there.
I asked for help when I was 13, 15,

already suicidal, finding school a torment.

“All teenagers have mood swings.”

“It may be PMS, so track your periods.”

I asked for help when I was 17.

I got propranolol. Whatever that meant.

I didn’t feel it did much, but someone cared.
I asked for help when I was 20.

The psychiatrist, the first I’d met,

portrayed me as a liar and implied that I might drink.

He sneered at my choices

of university

of course

of fiancé

and gave me fluoxetine, which sent me high.

He didn’t care.
I saw another guy who thought I had bipolar.

Lithium, he said, was the drug of choice but

it can cause thyroid problems

renal problems

seizures

coma

death.

You need blood tests

ECG

chest X-ray

and you must not get pregnant, no matter what.

No one talked it through with me.

No one helped me understand what it might mean to have bipolar.

No one gave me options.

It was lithium, or nothing.

I chose nothing.
I asked for help when I was 25.

I filled in a depression scale.

No, I cannot cope

and yes I cry a lot

and yes I think about death.

My toddler’s behaviour is out of control

my newborn’s crying is out of control

my depression is out of control.

The Health Visitor frowned.

“You’re score is very high.

I think it’s just because you’re self aware.”

And I had thought it was because

I was so depressed.
My GP tried to help.

With sertraline

and paroxitine

and trazadone

and venlafaxine

with no onward referral

and I remained in a kind of hell

an empty of husk of a mother

an empty husk of a person.
I asked for help when I was 27

if by asking for help you mean

spewing the contents of my medicine cabinet

from my stomach to the floor

of a curtained A&E cubicle.

When my vital organs were deemed well 

I went home

five pills of chlorpromazine

in a brown childproof bottle.

They sent a CPN.

“What do you want from me?” she sighed.

“This service is for people

with serious mental health problems.”
And she left.
They sent me for assessment with a clinical psychologist.

At last my problems, the overdose, seemed taken seriously

and my name went on the waiting list.

We didn’t hear and didn’t hear

and so we phoned.

“Oh, you’ve been taken of the list.

We had a case conference and

you were not in sufficient need.”
I asked for help when I was 28.

The psychiatrist looked into my file

but did not look at me.

Every session was the same:
your GP seems right

your current medication seems right

so see you in a month, then.

Repeat in August, in September, repeat repeat repeat.
I asked for help when I was 30.

and received a new and inaccurate diagnosis

something that I only knew when a letter came my way.

I did not recognise this version of the assessment

this description of my “psychopathology”

I did not recognise myself.

The unexpected upside of being told

that my personality was partially disordered

was I got the therapy I had needed 18 months ago.

I was profoundly grateful. I was profoundly angry.
I asked for help when I was 37.

I received it.

Posted in Bipolar, Child and adolescent mental health, Depression, Mental health services, Psychiatry | Tagged , , , , , , , , , , , , , | 18 Comments

She took to her bed: safe spaces and danger zones

Today I have been trying to explain to my Consultant that I feel that there are a number of zones in which They have more chance to get at me, where their power is stronger. Places like what I am now calling “Banana Alley”. Seriously, apart from streets that are used as markets, never have I seen so much fruit um, detritus, on a pavement or in a gutter. Today there were skins from about three satsumas or clementies (I did not take time to ascertain which), plus a whole manky one, plus a lone, heavily bruised apricot. This in a distance of perhaps 250m, a “passage” from tube to bus.

It’s becoming clear that although it’s often quite neutral, a lot of what I experience in my home happens in the hall/passage. Mostly I’ll walk back and forth without giving it a second thought, but when I start to become afraid it becomes a danger zone; inconvenient, because it is necessary to pass through the hall to get from any one room to another.

One of my earliest experiences with Them occurred a couple of years ago as Tom was driving us along the North Circular. Obviously we all know that the North Circular is hell. That’s a given. However, there’s a certain section which feels downright dangerous, a stretch between a certain bridge and a certain building. Once, on a tube train, I saw an ad for a product made by the company in that building (I hadn’t even known that they made anything) and I was flooded with anxiety. Still, we passed through it yesterday with no ill effects, holding my breath the whole time.

All of these spaces are liminal, a zone between or an intersection of safety and danger. Or maybe they are littoral, places where the terrifying and the pathological smash against the normal and the ordinary, I don’t know. In the case of the hall, well, I have to move through it. It’s that or buy a commode and have Tom bring all my food to me and give me bed baths. In the case of the North Circular, it is the most direct way home from many trips out but I am sure if I felt really distressed Tom and the satnav would find us another route. When I was explaining about Banana Alley to my consultant he asked me if there was another route I could take. I was astounded. I am familiar with the area well from my past work, so I on one level I knew perfectly well how to catch the bus without hurrying down the Alley, my eyes flickering from gutter to hedge on high alert for fruit. Yet on another level it really hadn’t even occurred to me. (On the way home I went one better and took a different bus. It took me about twice as long to get home but I felt I was making a statement.)

I was asked today whether I thought I needed to be in hospital. I didn’t think so. I am not at any physical risk. I am despondent at this change in my symptoms, the fact that this means I can’t up my game, can’t defend myself against whatever bipolar throws at me because it’s different with every crisis. My mood also dips when I have had a very difficult or distressing day, but that’s understandable. I am not of low mood in the clinical sense. Being admitted now would actually take me away from the points of safety in my life. Firstly, Tom. When he’s around, things are OK. I get confused and muddled about whether things really happened and if so when, but They don’t trouble me much. He’s like an amulet. Or, I don’t know, a sort of protective bubble of safety. There are places in my home too that are safe zones, even if I have to cross the hall to get to them. Twitter followers will know how much time I spent in the bath, and that becomes even more important when distressed, an enclosed space that I can fill with relaxing music and scented oils that provides a period in which something like diazepam can get to work.

The safest place of all is my bed. And the more ritualised and specific “bedtime” is, the safer it becomes. The bed has to be made, properly. The scatter pillows on top need to stay there, although the serve no actual function. The sheet and the duvet and the bedspread must be as straight as I can make them. Extra safety points are accrued by going to bed immediately following a bath; extra extra points by putting on a clean nightgown or PJs. Getting into bed in this state, especially in the day, makes be feel born again, cleansed, and not just on the outside. It gives me the best possible chance of surviving a period home alone. There is one problem, however. Although I’m not remotely suicidal at present, this feeling of being newborn is slightly risky because it is exactly what I was aiming for in some anonymous hotel where I intended to spend my last night.

So no, I don’t think it would be beneficial for me to be in hospital. The only bed I am interested in accepting is the king sized one in my room. I don’t even know what could be achieved in hospital in terms of medication that can’t be carried out in the community.

This is another post I don’t know how to end. I only meant to write a couple of hundred words. I should link to some other posts but I am too tired, sorry.

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In two minds

So apparently I am having to live with a dual reality. One is about logic, “facts” and what I “know” to be true (or more accurately what I previously knew to be true). The other is a different sort of truth and it brings understandings that feel genuine, authentic and often very scary, but don’t match the reality I usually experience. They both feel true, and they both feel untrue, at the same time.

I don’t know how to hold the two together. I have one skull and I don’t understand how I am supposed to be able to keep them both inside it. There are times when I don’t think I’ll ever be able to, when they are in constant competition and one swells to fill the space but it quickly displaced by the other (something like water balloons being squeezed?). Yesterday I found myself in a foetal position on the hall floor with the recurrent thought that I was being watched/monitored/recorded from above. Every time the thought burst through I… I’m not sure how to describe it. Although I was crying, it wasn’t a sob. The closest I can get is to say it was a kind of yelp. The thought came and I yelped because I did not want to have it. I tried to push it down with my rational mind, telling myself, no, that’s not true and that thought shouldn’t be there, but then the thought popped through again and there I was, curled up and yelping on the carpet. Quite quickly this progressed to me punching myself in the head with every paranoid thought, not because I wanted to hurt myself but because I was desperate for those thoughts to be removed from my head.

As usual, I feel it is all down to “them”, although that is a word I am becoming more and more cautious about using. I certainly don’t want my friends using in text, for their safety and mine. It feels that “they” might be scanning communications for mentions of them, and so use of the word might draw their attention (I know it won’t, I know there is no “them”, I know, I know). A couple of days ago I went into my local town centre to pick up some dresses I had ordered, something I was really quite excited about. Opposite the shop I was waiting at the kerb when a bus came by with an advertisement for the new Poltergeist film. I honestly do know how these things work; advertising “creatives” sitting around a table or reclining on beanbags or whatever these people do, throwing out potential straplines generated by the blue skyness of their thinking until they have one that sticks. I KNOW THIS. Yet the strapline on that bus was, “They know what scares you”. There could not have been a more perfectly targeted message for me and I instantly felt as if I might throw up, right there in the street. I shed a few tears of fear and fury and went to collect my dresses, thinking bitterly that they even know when things will make me happy and do their best to thwart that. I also had the depressing thought that I would never be rid of them, because as they had just demonstrated, they can pop up anywhere at anytime. It was a moment of pure despair.

Other strange events have included seeing the cursor on my laptop move as if accessed remotely. Olfactory hallucinations have come to bed with me despite neither bedding nor PJs or my own skin smelling that way. I have been disturbed by the persistent creak of floorboards as people walk around upstairs – only there is no upstairs. I found a lump in my breast but knew it might well be to do with the increased Q, which often causes painful breasts and/or milk production after a dose increase. But I had to ask Tom whether he could feel it because I simply couldn’t be sure it was really there. When it vanished within three days I found it to be difficult to be sure whether it had even been there in the first place, or whether it had but I had I brought it into being by recent unfounded worries about breast cancer.

I’m still seeing “visions”, and as I become more paranoid they tend to take the form of angry eyes or screaming faces. I am also having intrusive thoughts of extreme self-harm; no urges, just images of bizarre awfulness. I wouldn’t class as these features as psychotic, but they do tend to pop out whenever my brain is that way inclined. They like this particular neuro soup.

This morning I set off to see Home Treatment Team in a grey fug made of overtiredness and sedation. I just can’t hold it all together. I don’t know how to achieve a balancing act between competing realities and it’s become really exhausting. I’m trying to keep busy, employing simple distraction techniques like a bath, casual gaming, TV, although as usual I can’t concentrate on telly alone so Tom has to be there. Going out alone seems better than staying in the flat alone, but as the bus thing shows, there is risk attached to that too.

I’m seeing my own consultant, on Monday. This will be a relief, especially as someone from HTT will sit in and talk about where we go from here. I don’t know where there is to go. I’m been carrying on the increased Q as per his advice but my symptoms are clearly not under control. I can’t face any more Q because I am already so sedated, and I’d be getting near the max outpatient dose anyway. There remains little progress on my attempts to access therapy at the National Affective Disorders Service as the funders want more and more information before agreeing to treatment. Curiously, although feeling somewhat hopeless and helpless, I don’t really have suicidal thoughts, my usual “presenting problem” in referral to HTT. Which is wonderful as far as I am concerned, because how I would cope with that as well as everything else that is happening I do not know. I don’t even want to think about it.

I don’t know how to finish off this post, other than to say it’s been a good distraction for the past hour or so. Time to find another one.

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When you’re strange

I feel strange. I don’t think I’ve been acting particularly oddly so it’s probably not noticeable to most people, but I’ve been having strange experiences that make me feel a stranger to myself. After the Great Banana Skin Episode I felt I was escaping the world of “unusual ideas” and “unshared experiences”. I had no evidence for this. Perhaps I just wanted to feel… well, not strange for a bit. But the truth is that experiences like this, which only emerged in my late 30s, have changed me, and changed me forever. I can never be “unstrange” again.

Aldous Huxley famously used William Blake’s phrase “the doors of perception” to illustrate his mescaline-induced psychedelic experiences (a phrase which in turn gave the band The Doors their name). I feel that my psychotic-type experiences over recent years have flung open a door in my mind that can never be pushed shut again. Even the glimpse that I have had – and of course my symptoms are very minor compared to many – has destroyed the boundary between what is real and what is not, making me unable trust my own senses or beliefs. Even three years ago I would have laughed at the idea I might need to ask somebody else work out what was real and what was not but this is now a regular occurance. Asking makes me feel like a child, perhaps because we expect the barrier between reality, fantasy and dream to be more porous in children.

Since the banana thing I have had a gustatory (taste) hallucination, which is a complete new one for me. On two separate occasions I have not only seen blood (because I continue to be very clumsy on lamotrigine and cut myself more often than I used to) but tasted it. I didn’t imagine the taste of it, I tasted it, strong and metallic, without having brought the cut to my mouth. I could not rid my mouth of it for a good while after the tiny wounds had stopped bleeding. I don’t usually get visual hallucinations either but in a ladies loo recently looked at the stainless steel lock and it was slipping. Not melting away like a Salvador Dalí painting. It retained its form perfectly, it was just sliding down the door. I moved around the cubicle, casting a shadow in case it was a trick of the light. Still the lock slid down and down. I put the tip of the finger about a centimetre under the lock. I could feel nothing, yet when I took my finger away the lock continued its slow, continuous movement. It was moving. It was. But it wasn’t.

Harder to cope with has been the return of paranoia and the sense that They are after me. I had a text conversation with my dad that was longer than usual and in which he referred to a prior conversation I did not recall having. I struggled to grasp what he meant and the exchange began to feel like a guessing game I could not win. The texts also felt wrong; they were shorter and used a “text speak” contraction I didn’t remember my dad ever using. At this point I began to get really frightened, feeling played with, toyed with, that They were enjoying hijacking the conversation to make me doubt my own memory and mind. I ran into the living room, crying. “Help,” I said to Tom, “I need help!” and he held me tightly against him. Taking a look at the texts he could see what I meant, but that it seemed to him more likely that my dad had sent short messages because he had been busy. Well, I don’t know about that because I can’t look at those texts again, not even to delete them. When my dad rang later that week I couldn’t bear to ask him about whether he had really sent them. I am terrified he might say no, and to be honest I’d rather not know.

I also have a sense of a looming “presence”, a dangerous, evil presence, in my flat. Last week when Tom was at work I heard a voice that sounded like it came from another room. I have written before about feeling like I am a character in a horror film I didn’t audition for and this was the same, me treading gingerly down the hall as the stereotypical horror movie “girl in apartment” who checks rooms and cupboards until the baddie jumps out at her. I felt almost as if I was being filmed and a thought came to me – I say “came to me” as it did not feel like the product of my own mind, it felt like it was dropped in there like a pebble, a thought unlikely to occur to a Quaker. It was, “I wish I had a gun”, delivered in a very neutral way. There was no emphasis, no stress on any word. No emotion.

A couple of nights later I got up to visit the bathroom. The thirst that lithium engenders makes this a nightly occurrence. Usually I take a torch so I don’t have to subject my eyes to the ridiculously bright hall light. I went to kitchen and got a drink; it has to be flavoured to slake the lithium thirst yet calorie free for the sake of my teeth, so I usually drink Fanta zero. I finished the bottle and went to hall cupboard to get another bottle, which I popped into the fridge. I tell you this so you know that while I was really quite sedated I was very far from being asleep or sleepwalking. On my way back to bed the light from my torch began to flicker on the walls around me like cold, white firelight. I knew this couldn’t happen with an LED torch, so I switched it off and switched on again. It was fine then but I when I repeated the action the flickering returned. I suddenly had a sense of a very dark presence and I ran back to bed, shutting the door firmly behind me. I could not lie on my left side because I was afraid of turning my back on it. I couldn’t lie on my right side because I did not want to show it my face. I lay on my back and tried to sleep but was troubled with images from psychological horror films, actual or created by my own brain, I couldn’t tell you.

Maybe you now understand how difficult it has become to separate dreams, hallucinatory/delusionary experience and reality. As part of my attempts to be more physically active I have where possible been taking stairs instead of the lift or escalator. In a tube station I saw a sign to the stairs, so I followed it and found myself on a wide, tiled staircase, alone. With every turn I reached a small landing and as I wound my way down I passed landing after landing, all empty except for me, all looking exactly the same. There was no sound. I reached a point where I genuinely did not know whether I was awake or dreaming or hallucinating and I began to feel as if I might be trapped in there forever, walking on and on in some kind of stupor. One further turn spilled me, bemused, out onto the station platform.

I have never tried Huxley’s beloved mescaline. Once as a student I took acid (something that now looks like a pretty stupid thing to do in the context of having a recent diagnosis of bipolar). For a time in what I now feel was a rather tedious, “wow, man!” kind of way I felt it had been tremendously significant, a life-changing “door opening” experience. It wasn’t, although it did teach me something about how the human brain can pull together something bigger that its parts out of almost anything around it. No, what really gave the door an extra kick open was not LSD but a prescription drug, sodium valproate. An antiepileptic, valproate has for some time been used to treat bipolar and in 2011 it seemed a good idea to try it instead of the highly sedating quetiapine. You can read all about my experiences here, but the short version is that I had a very, very rare reaction and started hallucinating. These definitely weren’t psychosis; I had no belief that anything I saw was real. They mostly swam out of the dark when I closed my eyes, popping like soap bubbles to be immediately replaced by other images. They were mostly of three types: faces; geometric patterns, very much like the tail end of my one and only acid trip; and segmented things like worms or ladders. Most side effects resolve themselves once the medicine is stopped. Not so my “visions”. It is now three and a half years since I went back onto quetiapine instead yet whenever the more psychotic type-stuff recurs, so do the visions. Never with the same intensity as that first time, thank God, but they can become distressing. They “pop” so quickly it’s hard to record them but today I have had some kind of tribal mask, faces of people screaming or melting, animals’ faces, a snaking bridge made of boards.

So I am strange. I am a stranger. Faces come out of the dark, some of them ugly. I fear being trapped in an endlessly descending zone of altered conscious where I won’t remember my name. And I don’t how to predict, let alone stop it.

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