Help – need opinions

I am writing to request a new CPN/Care Coordinator. Since the recent reorganisation of services I have been seen by [redacted], but it is not working for a variety of reasons.

The first time I met [redacted] she said to me “I have lots of experience dealing with your sort of issues.” But this was while also claiming “I don’t know anything about you”, without having read my notes or even knowing my diagnosis, and without asking me what those issues might be. It’s clear that she has a model of mental illness and distress and was intent on making me fit within it. She also said, at an early meeting, “I don’t know anything about you, but I expect you’ve experienced trauma”. Again, this was trying to fit me into a model without actually finding out anything about me, and, quite frankly, I feel this level of simplification, prejudice and assumption, is dangerous.

In subsequent appointments she has tried to push me into doing ‘Recovery focused work’, offering various things we could do e.g. the Recovery Star. What she fails to appreciate (because she has not taken the time to find out) is that I have been in secondary services for over ten years, and struggling by myself for many more years before that, so I have investigated and explored many different ways to approach my difficulties. Some things I do find helpful – I utilise the practice of mindfulness and other approaches I have discovered through my extensive independent reading about Buddhism, regularly, and find them helpful. Others are just too simplified, and too infused with the damaging principles of neo-liberalism, for me to take them seriously.

I tried to raise these concerns with [redacted], in the hope that we could begin to develop a genuine relationship, but she immediately said that I could be discharged from services entirely, get my medication from my GP, and just call Duty if I needed help. I experienced this as a threat – comply with my way of doing things, or have all your support removed.

I know it is possible for me to have good, supportive relationships with health professionals, because I have had several in the past that have been instrumental in improving my life to the extent that it has been, but I do not think I can form such a relationship with [redacted]. I have currently been out of hospital for nearly a year, which is the best I have done since 2013, and I am anxious to maintain this and to avoid another admission. Having a good relationship with a CPN/care coordinator is an important part of this. I want someone who is willing to get to know me, to understand (or at least be willing to learn about) some of the ways my diagnosis (Dissociative Identity Disorder) affects me and my life, and offer the kind of compassionate support I have experienced in the past, so I can make progress and hopefully eventually move beyond needing professional support and be able to manage my life myself.

Advertisements

Drama Therapy / Therapy Drama

I have some longer posts writing themselves in my head, over and over again, which I know will drive me crazy until I get them out. Yes, the urge to blog is back. But first – this week/yesterday.

Yesterday I put on a fine display for my therapist of just how chaotic I can be. I hadn’t slept at all for two nights, and wasn’t exactly sure whether or when I had eaten. Hadn’t taken lorazepam or zopiclone, since I had none, and hadn’t drunk any alcohol either. Had been reducing quetiapine and down to 150mg a night, which has no discernable effect. So none of the substances that keep things quiet and shut things down. Was rapidly descending into a state of gibbering and grimacing. Very loud internal chatter on a whole variety of topics from chicken pox to computer games to colour genetics, with a bit of reincarnation and a few unsolved murders thrown in. Utterly failing to actually achieve anything, since I simply couldn’t organise thought into action.

But I made it to therapy. Walked too fast there, and the noise of the world was mixing and conflicting with the noise within. Sat down and the fun started. Violent shaking, exaggerated face-twitching, involuntary movements (hands fidgeting away in the air), staring, stuttering, random talking (“There are 38 species of insect that are solely dependent on the ragwort plant . . .”), even more random laughing (because my life is irrational, nonsensical, ridiculous).

My therapist took it all in her stride. The more I see her, the more I show her, the more I let her see, the more I am gradually reassured that I am not too difficult, too mental, too much, that she can handle this/me.

She’s also just so fucking kind. Walking down the stairs to leave I was shaking and wobbling and kept having to stop and shut my eyes. She said “I’m worried about you walking home, please will you let me make you another cup of tea.” Took me into the kitchen and sat me down and sat with me a while. Kept saying “I really don’t want you to worry or feel bad about this, it is fine, it really is okay.” Made me promise I would go home via the shop and find something to eat. Offered to go to the shop with me if that would help. Said she would check in with me today.

I did come home via the shop, but I couldn’t keep my promise, because I then discovered that I’m pretty much broke. Stood by the cash machine a while rubbing my face and trying to think, but simply didn’t have the mental capacity at that point to do the necessary sums and equations re what was essential and what I could afford. So just came home. Made yet more tea. Took 500mg quetiapine – as I said I’m trying to reduce it, but sometimes needs must. Suddenly realised I felt frozen. Put the heating on, wrapped myself up in blankets, curled up on the sofa, and eventually managed to fall sleep. Wow, I really really needed that.

Kit the Git woke me up at 3am. You know how it goes – he pats my face and purrs in my ear, I try to hide under the duvet, somehow those persistent paws still come sneaking in, eventually I give up and get up. Made coffee with the last of the milk and managed to force down some toast. Feeling rather fragile and exhausted but a whole hell of a lot steadier and saner. Today I need to tackle the shopping problem, do some laundry, get in the bath. I’ll be okay.

I haven’t blogged for ages, but there have been various posts floating round my head, waiting for a time when I have the mental energy to actually write them.

One is about the whole big diagnosis debate. I have things to say about that, though whether I actually will say them is another matter.

One is about my personal internet history. I guess I’ve been thinking about the days of email lists and bulletin boards, and how they just inevitably died a death. And Twitter is not what it once was. And maybe the blog, which was once so important to me, is in its death throes right now. And maybe that’s okay. Things change, the world moves on.

But I can’t quite let it go. I still hover around Twitter, sometimes participating, sometimes not. I have friends there, friends I don’t want to lose, not being a person in general who had many friends.

So I don’t know. I don’t know what the future holds. I don’t know what the right thing is to do. Knowing only that I care deeply about some of the people I have met on Twitter and through the blog, and not wanting to lose that. Because it’s not as though my life is bursting full with people wanting to know me.

I had therapy today. I now have therapy twice a week, at 8.30am on Monday mornings, and at 2.45pm on Thursday afternoons. And I don’t know how or if I’m going to be able to afford this, but I wanted to try it, and it seems like a good thing, so I guess I’m going to have to figure out a way to afford it.

Today we talked some about my previous experiences with the psychologist I had. And my therapist said that we all are welcome (which is not what I felt with the psychologist), and she also said that this kind of therapy was long term, possibly years. And a little suspicious part of me presented an argument that she just wanted to keep her income stream going, but most of me knew that yeah, the kind of therapy I need is long term, and yeah it might take years.

That’s kind of hard to take on board. But I think it’s a reality I  need to accept.

And maybe, having written this, I will be able to write something else, sometime soon. Or maybe I won’t. I guess we’ll see, and you should watch this space.

Things

Good things. Bad things. Yet-to-be-decided things. Bit of a random assortment.

Cats first. Definitely a good thing. Waking up with Kit curled next to me, purring, is just – nice. Really nice. He’s turning out to be quite an affectionate little beast. Kaboodle remains wary and stand-offish, and recoils in horror when I try to touch her. I suspect she may always be a bit that way inclined, but I love the little noises she makes as she runs from room to room, a constant commentary of squeaks and chirrups.

And I can buy as many catnip mice as I like, but Kit’s favourite toys remain the paintbrushes he steals from the art room. There are paintbrushes everywhere! Perhaps he’s trying to tell me something? Start painting again Sage! Kaboodle seems to prefer crystals and shoes. She’s a New Age cat with fine taste in footwear.

And, through the cats, I seem to have a new friend. Which is good and scary all at the same time. You know, there’s all the old stuff, which my CPN calls my “cognitive biases” – just, why the fuck would anyone actually like me and want to spend time with me? I don’t understand! But I’m going with it, and accepting invitations.

My landlady came round. I had the house really clean and my essential oil diffuser on. She was pleased. She thanked me for taking care of the place, she said I was a good tenant. I currently feel like an enormous fraud, because everything is in a bit of  a mess again, but I’m also determined to get it tidied up. It’s very important to me these days to keep my house clean. I lived in utter chaos and squalor for so long, and there was a huge amount of shame attached to that. A friend once yelled at me that I was DISGUSTING. The worst thing was that it was true.

Another thing that happened was that my new friend came round and as she was parking her car my neighbour was coming home and he commented on her parking – because of course he would, that’s what he’s like – but then he said I was “the quietest neighbour I’ve ever had”.  And that was good, it was reassuring, because I have an ongoing anxiety that I am somehow too noisy and disturb everyone and they all hate me.

So those are things. Some not-so-good things are that my eating is getting decidedly out of control. There’s been a lot of throwing up lately, and I’m feeling a little desperate. Although I’ve told MH professionals about this before, several times, they don’t seem to have picked up on it as a problem. At least – they never offer me a chance to talk about it, and I’m too ashamed to bring it up again. Therapist guessed though, and she said it was fine to bring it to that space.

She also guessed about the drinking. Which I probably ought to address. Just not today. But I’m getting embarrassed about the amount of alcohol I’m buying from the shop down the road, so I need to do something. Go to another shop, probably. I’ve just been in full-blown flight from the realities of my life. I’ve been diving into alcohol and other substances, I’ve been plunging into books and things to watch. Unconsciousness is the answer!

Except it’s not. Not really. Not long-term. I know that, but right now I’m deep into avoidance. Don’t think and don’t remember! Just survive, and eventually you’ll die, thank God!

Therapist gave me a stone to hold during the last session on Friday. Then she said I could take it away with me, and use it to remind myself that she doesn’t perceive me as evil. A primitive kind of magic, but a powerful one. I have the stone with me now. But there are so many doubts – because how can she be sure?

She’s away next week. I’m telling myself this is okay, this is fine, but it seems such a long time until I see her again. When she sent me the email telling me she was going to be away, she also let me know that she’s going to be away one Friday in late September, but on that occasion she can offer me a session on the Thursday. It freaked me out. Like – to think about September/October. And yes, I’m going to be living here, I’m going to be living here a while, and I’m going to be going to therapy, I’m going to be doing that a while too. And it made me wonder how I would be, how I would feel, what would be happening.

I am running out of things (yay, everyone breathe a sigh of relief!). Just one more – I think I may have found some voluntary work that would suit me. I’m going to talk to them on Thursday. Just that I need something, something to organise my life around. I think it would help to have some kind of regular commitment. Because at the moment I have endless empty days, and although I have many projects I want to get into, I seem to mostly be paralysed. Which really isn’t great.

 

 

 

 

Therapy

So some of you may know I’m having art therapy. This may create an impression that I am creating elaborate images of my conflicts and problems. I know some people can engage in art therapy in this way.

But it’s not like that for me. For me, the work is about being to express myself in any way at all in the presence of someone I don’t entirely trust yet.

Today I went in angry, frustrated with my inability to control my life, to do what I want to do.

We talked about that a little, then she suggested we try some art making, using watercolour, which is hard to control.

She gave me a brush, and brought over a piece of paper, and moved some water near me. I picked up the brush and dipped it in the water. She suggested we make marks just with water, so they wouldn’t last. I still hesitated. She asked if she could hold my brush with me. And slowly, together, we began to put water on the paper. Sometimes she was directing the brush, sometimes I was. This brought up such a mixture of feelings in me I couldn’t speak, and had to stop.

Then I just went really small. There’s no other way to describe it. I was rocking in my seat, and then suddenly taken over by shaking. She gave me a cushion to hold onto and I clutched it for dear life. She asked if I felt scared or sad and I heard a high pitched, childish voice say “Both”. I felt like I wanted to cry, except I don’t know how to cry.

She kept talking, in her soft voice, reminding me where I was, and that I was safe, while I rocked and shook.

Then the session was approaching its end, and she started to bring me back to the present, to an adult self who was able to leave, and carry on with life. “I don’t want to go”, I said. And I didn’t, I wanted to stay with her, with her voice and her acceptance, and the sense of safety she offered.

“Yes, it’s hard to stick to timings”, she said, “but I will be here next week, and I will be here for as long as you want me and need me”. And I was able to come back, to hand her the cushion, to say good bye and thank you, and walk out the door.

That’s the kind of art therapy I’m doing.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Project Reboot

I seem to have got out of the habit of blogging, but I’m thinking I should start again. The blog functions as a memory for me, and a way to meet myself in some of my different mental states. Without it my ideas of what has been going on are hazy. I know things have gone a little haywire lately, but when and where and why I just don’t know. I can’t give a convincing explanation in terms of triggers and reactions. I can’t remember the sequence of events.

I just know I got stuck again in a big “I CAN’T”. When I’m like that I can be stubborn in my misery, resisting anything that might make me feel better, denying that things are highly likely to eventually change again. I need to find more acceptance, cultivate the awareness even during those times that there are other parts of me that have an entirely different take on things. I’m never going to banish those feelings forever, they are part of the fabric of my life. But I think I could approach them in another way, so that I didn’t so entirely lose myself and come back to consciousness sometime later, wondering what happened, and feeling more than a little ashamed.

Not-so-new-now CPN came yesterday. We’ve had a slightly rocky road, had to work through a number of misunderstandings. She has a much more intellectual approach than my previous CPN. Sometimes that works for me, sometimes it doesn’t. Yesterday, for instance she was talking about stories and archetypes and redemption and religion and confession. I could feel part of me – an articulate self – wanting to respond, to engage in the discussion, but that part of me was far away and I couldn’t find her thoughts. I felt confused and vague and muddled and found it hard to focus on what my CPN was saying. I feel this way a lot with her. But I did appreciate her stating that it was not about willpower or strength of character, that they understood that sometimes this was just the way it was – difficult and shit – and that she didn’t want me to feel I was under any pressure from services to recover, that they understood it wasn’t as simple as doing x or y and in three months you’d be better.

This, of course, is the polar opposite of the Crisis Team’s approach. They told me last week that I just needed to think positive, push myself, and start participating in some activities. That I should go to the Recovery College, because, obviously, a six week course in managing anxiety would be revelatory and all my problems would be solved. But I think now that Crisis Teams can’t be any other way. They don’t know you, they don’t know what kind of person you are, or what your strengths might be, or what you’ve already tried, or your history, so what can they really offer except for the standard stuff, the same old same old, the impossibly simplified? It’s built into the structure and the system.

So CPN helped me find a little space within myself, as did my recognition that however desperately parts of me want to die others just as fervently want to live. After all, I’m not dead yet, and I’ve been suicidal more times than I care to remember. There’s something to be learned from that. And so today I got up and went back to trying to cope with my life and what happens inside me, instead of clinging to last week’s decision to give up. The house – which had been sliding into squalor – is half cleaned up. The Garden of Shame has become the Garden of Weeds, in that there is now a vague, rough apology for a lawn, surrounded by beds of weeds, rather than the previous jungle and chaos. And I am thinking again about projects and plans.

I think I will always live a backwards and forwards life, I think I will always be a bit messy and all over the place, I still have many memories I do not know how I will ever face. But I think I can learn to live with that, and hopefully with a bit more grace than I’ve demonstrated recently.

 

Therapy

I don’t even know how long I’ve been going to therapy. When did I start? January? February? It was snowing the first session, I remember that.

I have a regular appointment at half two on a Friday. I start getting ready at two. Pee. Put my shoes on, grab my coat or bag, lock the back door, fill my vape, pick up my cigarettes (Most days I just smoke one cigarette, first thing in the morning while I wait for the kettle to boil for coffee. On therapy days I smoke three, one in the morning, one on the way there, and one on the way back.). Pee again. Check the time. Wait if I have to. I leave at seven minutes past two. Precisely.

The walk takes 19/20 minutes, depending on how fast I walk up the hill and how long I have to wait to cross the roads. I wait outside, leaning against a wall, checking my phone. There used to be some very convenient trees I could half-hide in, but they cut them down.

When the time on my phone turns to 2.30 I walk through the gates and to the door and ring the bell. Look at the ground while she answers and says hello. She’s always got the tea ready, and we go up to the studio.  It’s a bright space, white walls with dark beams, full of art materials and books and toys and interesting objects. When I first went I always started off sitting in the red comfortable chairs by the door, but now I sit at the table with the paper and the pastels and the pencils and the paints and the inks and the clay.

Sometimes when people ask me about the therapy it’s clear they have some vision of me painting elaborate, meaningful pictures which the therapist then interprets. That there’s some kind of format. But it’s not like that at all. Mostly we just talk. Sometimes I grip a pastel, or turn a pencil over and over in my hand, and shake with the inner battle, the desire to express some of what goes on inside me, and the resistance to that.

And it’s all okay. Everything is okay here. I haven’t found anything yet that is not okay. It’s okay to make marks on the paper, and it’s okay not to. It’s okay to bring pictures in, it’s okay to bring writing, it’s okay to bring dreams. It’s okay to email her. She says we are all welcome there.

Today I managed to write down some of the words that were being shouted in my head. Ugly words. Difficult words. When she saw my reaction to seeing them on the paper, the eye fluttering and face twitching, she turned the paper over and then she took it away. She didn’t comment on them, she didn’t ask where they came from, but she knows them now.

And so I tell my story slowly, in bits and pieces. A few words here, a dream or a reaction or a scrap of memory there. It’s the only way I can tell it, I don’t have a neat narrative of trauma that I can pull out and present for healing.

I asked her today when it would start to feel better. Silly question really. She said she didn’t have a magic answer, that it would take a long time, but that what I had done today was a step forwards, that every time I came it was a little step forwards. She said she would be there for as long as I needed and wanted her.

I don’t know how this works. I’m used to people offering advice, coping techniques, self soothing strategies, suggesting mindfulness. But I know the sessions are becoming important to me, that I like her gentle, reassuring presence, the way she notices what’s happening with me, that more and more I am starting to trust her.

I have been mad. Absolutely mad. Not a little mad, but a lot.

I remember one morning in the hospital, going down to the garden for a smoke. Sitting on the bench and staring at the the plum tree and fence, and beyond them the carpark and the road and the hills of houses. And I saw them not as tree and fence and tarmac and houses, but as constructions, all of them formed from these little lego-like bricks that these beings in another realm were arranging. I felt I saw into the makings of the world. I felt I saw into the truth about reality.

And I kept seeing it, even as I went upstairs to the ward. The walls and floors and doors weren’t real to me. The other people were illusions. All of them were being built for some purpose I couldn’t grasp, but that I suddenly feared was just a game in this other realm. I had a vision of the being who had created this particular world. It had all been rather a mistake, things had got out of control, it was never meant to be this way. “Best to just close it down and forget about it” the officials said.

I don’t remember how I acted that particular day, but some days I paced the corridor of the ward, running my hands up and down the walls as I paced, Then other days I was filled with an inexpressible joy and galloped or skipped or simply ran up and down that same corridor. I was 41 years old. This wasn’t deemed appropriate behaviour.

But you see my problem, that joy I felt, and the love it seemed I had so much of it could heal the earth, I cannot label it as illness. Because it was a gift. And it carries with it the imperative that one must somehow work to share it, to manifest it in the world.

I am a long way from feeling that love at the moment. But it is behind my dissatisfaction at a dull routine focused on getting and keeping the house really clean and organised, and successfully pass time. I just can’t shake the sense that there is something I am meant to do in the world, a reason I have had these experiences.

And perhaps that is madness too.

Changes and Choices

There have been a lot of changes in my world lately.

The first one and the big one was moving house. Which is internally approved of by pretty much everyone. The Cosmic Sage did good. Maybe there’s something in this whole praying-to-the-universal-energy business after all? I mean, I joke about it, but we did get everything she asked for. And that’s not easy in a housing market that discriminates against those on benefits.

Then there was ending with the psychologist and starting art psychotherapy. That wasn’t much fun, and this is where the choices come in. Because various professionals keep suggesting I see the psychologist again. I don’t think they grasp that the art therapy is real therapy and not just some “therapeutic” colouring in. I did see the psychologist once – or someone saw her – it was all make up and heels and cheeriness. Then I read the discharge letter she’d drafted, and got angry with how much she’d misunderstood. That was bleak. But not unfamiliar. Story of my time with her, really.

Then OT left (I wasn’t sorry), then Lovely CPN left (I was sorry), and now I have two new workers. New CPN seems intelligent and emotionally sensitive, but I am perturbed by her references to the “work” she wants to do with me. Compassion-focused bullshit, I gather. Will probably involve a “self-soothing box” at some point. Ick. So I’m withholding judgment. New OT happened to meet Sage one day and was very enthused by her “level of insight” and “strong sense of self” (ha!).

There was a meeting. I was mute and stared at the floor. New consultant told me that she’s leaving too. Lucky I don’t have abandonment issues, isn’t it?! So there’ll be a New New Consultant, and I’m slightly concerned that whoever it turns out to be won’t be quite so willing to give me ample quantities of drugs. That would be a bugger. The only other thing I came away with from the meeting was some waffle about “keeping doors open”. At this point your guess is as good as mine.

But the big difference in all this is that they’re all talking openly and upfront about DID, asking me questions about it, wanting to know about it. New consultant is going to make it official and put it in writing. I kind of need that, because I’m still playing games with deliberate blindness and denial.

And this is why I think that however much parts of me want to see the psychologist again, I should stick with the art therapist. Because she gets it far more than anyone else ever has. She’s the real deal. She notices what’s happening. She sees/feels it. And so many parts want to talk to her. If I could only let them. Because I’m still caught up in trying to stay in control – even though my life demonstrates to me over and over that I can’t – because I have such a fear that if I let all the crazy out I’ll end up in hospital again. I have a horror of it. I lie here on my sofa often, in my warm, quiet, safe house, and I just experience such gratitude that I am not locked up.

I am not locked up. And I never want to be locked up again.

And I can’t think of anything else important to say.

Rage Against Recovery

“Are you enjoying your art therapy?” she said.

I shook my head, partly in answer, and partly in disbelief that a mental health professional should have so little understanding of psychotherapy. In what universe is exposing your screwed up self to another FUN?

But this is the world of Recovery, in which any vaguely pleasant or rewarding activity can be dressed up as therapeutic. So there’s therapeutic art, therapeutic gardening, therapeutic baking, therapeutic kindness to others. And from there, of course, it’s not such a leap – and this is already well on the way, inveigling itself into government policy  – to the concept of therapeutic employment. You can see the appeal. Cut the benefits bill and solve the growing mental health crisis in one fell ideological swoop.

And if these dumbed down “therapies” don’t work? The blame is easily located in the service user and their poor “coping strategies”. Treatment for mental health problems is increasingly merely instructions in how to live. Eat healthily. Exercise. Practise sleep hygiene. Make a self soothing box. Embrace mindfulness. But somehow simultaneously also distract yourself. Always distract yourself.

The message is consistent: We don’t want to witness your pain. We will bat it straight back to you. It is your individual responsibility. There is no healing to be had. You just have to learn to deal with it better. You have to learn to manipulate your thoughts and emotions into a more positive and acceptable mindset.

And if you express your doubts, if you dare to speak of your experience of decades of attempting to make these changes and failing, and your growing suspicion that these changes aren’t the magic answer, if you assert that these strategies don’t work, you are accused of not believing hard enough, you are told you must keep trying. The failure to recover from mental illness is an individual failure, a lack of determination and character, and labelled, more and more, as a personality disorder. You’re not trying hard enough to be good.

Enough.

Current theoretical frameworks of Recovery consolidate the grand fundamental denial of the traumatogenic nature of capitalism and current culture. Mental illness is built into the system, those who suffer (and there are increasing numbers of us) are collateral damage.

And while we are busily trying to fix ourselves, through diet or meditation or yoga or CBT or crochet, we are conveniently distracted from naming the real sources of our distress. Make no mistake, the Recovery doctrine has a political agenda. We are economic units, to be judged acceptable or otherwise by our productivity, and the prime focus of mental health services is to so adjust us that we better fit the mould. That is the measure of their success.

It drives the pain, the deeply human response to the inequalities and injustices in the world, underground. It “works”. I no longer phone the Crisis Team because I have given up hoping that someone will hear and acknowledge my brokenness and despair, because I am tired of being told to make a cup of tea and watch television, because I am sick of the assertion that the problem somehow lies in me. So am I “better”?

I am the child who believed in the power of poetry and was advised to pursue a career in advertising. I am the adolescent who believed that God had forsaken her, because all around her was the message and the pressure that to really succeed was to be attractive to boys. I am the twenty-something who was haunted by anniversaries of war. I am the thirty-something who ended up in and out of psychiatric hospitals, tormented by visions of a planet in pain.

I will not “recover” until the world recovers – and I can’t see that happening any time soon. For now I hold my coldness and anguish close to me. It is, at least, something real, and in this culture of consumerism and illusion I cherish the real. And it moves me.

I have a voice. I vow to use it. When the world ends you will find me singing there.