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Posts Tagged ‘dissociation’

According To Our Latest Findings- You’re Super

Posted in Anxiety, CBT, DID, Dissociation, Dissociative Identity Disorder, emotions, Fantastic CPN, hypervigilance, insight, Internal Communication, MPD, Multiple Personality Disorder, Spiderman, The Fear, The Smallest House in The World, Triggers, Twitter, Uncategorized, tagged , , , , , , on July 26, 2012 | 20 Comments »

I don’t think  I’ve ever detailed my virulent hatred of CBT (cognitive behavioural therapy) on the blog, I talk about it a lot on twitter and as some of my poor victims will know, I used to practise it there.

In times of distress I was always available to offer therapy, mainly along the lines of-

WHY ARE YOU DEPRESSED? OTHER PEOPLE ARE FAR WORSE OFF; SOME HAVE DEAD PETS. JUST STOP IT!

And

YOU ARE EMPLOYING MAGICAL THINKING. JUST STOP IT!

And

YOU’RE NOT BEING PARANOID. PEOPLE DO HATE YOU- BECAUSE YOU’RE RUBBISH. JUST STOP IT!

I’m in semi-retirement from my CBT practise these days, though rest-assured, should I spot you indulging in a little black and white thinking, mind-reading or catasrophising then I will point it out and insist you desist.

It may surprise you to know that I’m not a trained CBT practitioner, but I am a quick learner and managed to pick-up quite a lot during my own very brief dalliance with the technique. I had three sessions of CBT before I was declared too mental; I don’t remember much, in fact all I remember is

“WHY WOULD YOU MAKE YOURSELF VOMIT? THAT’S JUST STUPID”

Which as you can imagine was enormously helpful for someone who at the time was attempting to ‘regulate their emotions’ by throwing-up every morsel of food she ate. I waited 9 months for some harridan in a maxi-dress (she may have been a psychologist) to berate me for being mental. I’ve never been so glad to be declared ‘un-helpable’ in my life, being discharged was a gift.

CBT was never going to help me; I’m quite capable of berating myself, I don’t deny I sometimes indulge in all the common cognitive distortions but I’m a multiple so I also know when I’m doing it, why and what to do about it. I can administer CBT to myself. It doesn’t make me any better or help at all in any way but I know I should keep doing it or everything will go completely wrong and end in disaster. Furthermore it will all be my fault; I know others will blame me for everything as they all think I’m rubbish anyway.

There is one psychotherapeutic technique with a cognitive basis I don’t despise completely- reframing. I love a good reframe. I often reframe my days in order to make myself feel better; I’m quite the Polyanna and on balance, probably wear my rose-tinted spectacles as often as I wear my shit-tinted ones. At this stage I probably would lose the will to live by 10am most days if I didn’t paint everything with rainbows-

Forget an entire day- it must’ve been rubbish anyway.

Got lost in Tesco- accidentally found the stationery aisle.

Haven’t been out of the house all week- didn’t run away to Paris/Newcastle.

Drank too much wine- didn’t mix with benzos.

It’s a useful technique but there is a danger that a reframe can become a wanky platitude. The two run very closely together, I’ve sketched a graph to illustrate.

I can also spot a reframe a mile away so often feel patronised and invalidated, sometimes this is justified. Back in the day of the frequent dissociative trips that ended in police involvement, MHAs, helicopters, trips to A&E and the bin etc the Fantastic CPN would always comment “but you came back and you’re ok”. I’m not sure what my response at the time was, these ‘trips’ left me confused, terrified and ashamed but the fact I was still alive was supposed to be enough to comfort me when it was quite clear I had completely lost control of my mind and my life. So reframing, whilst useful can also be a tricky balancing act.

The 7 year-old has returned home, earlier than I planned. I’m not entirely sure how this came about but I’m sure there’s a paper-trail somewhere. Today I finally have a man coming to fix the TV- you can’t have a 7 year-old child in the house with no working TV, well you can if you

a)     dislike children

and

b)     are happy to provide round-the-clock entertainment

I’ve mentioned before that this kind of situation, where I have to allow a stranger to enter the smallest house in the world is very challenging for me. I don’t imagine for a second that the TV man presents any real threat (other than to the bank balance) but I am crippled by hypervigilance.

I have extremely keen senses- all of them, they are my useless superpowers. I’m always on the lookout for signs of danger, be they real or imagined. I am permanently primed, ready to freeze, flee or have a complete meltdown at the first sign of peril. It’s not a good way to be, physically or emotionally- hypervigilance makes me mental, bonfire night in this house is probably similar in many ways to bonfire night in Battersea Dogs Home. I can’t just stop being hypervigilant and so, at times I hate myself for it.

I clearly needed some sort of reframe, so you can imagine my unbridled delight when I found this article that confirms that I am not only super-human but Spiderman. I have nothing to fear from the TV man, unless of course his name is Norman Osborn…….

click image to read article

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Oh I’m Sorry, Did We Take That Too Far?

Posted in activist, bipolar, blogging, Celebrity Mentalism, communication, DID, Dissociative Identity Disorder, hospital, illness, insight, Internal Communication, mental illness, Multiple Personality Disorder, NHS, politics, therapy, Told you it wasn't like Stephen Fucking Fry, Uncategorized, tagged , , , , , , , , , on July 24, 2012 | 44 Comments »

Last night the world, or at least my tiny view of it from behind the laptop screen was talking about the 4 Goes Mad season, specifically Ruby Wax’s Mad Confessions- hosted by the self-dubbed “poster girl for mental health” (or “poster girl for mental illness” according to her twitter bio), Ruby Wax.

I didn’t watch it, the TV is still broken and it’s still too difficult for me to contemplate having someone come into the house to fix it. I ‘watched’ Ruby Wax’s Mad Confessions on twitter, the same way I have ‘watched’ TV for some time.

Obviously this show wasn’t going to represent me, I knew that. I also knew that as it championed celebrity mentalism which I have talked about before here, I probably wasn’t going to like it. I’d read a bit about the show, watched Ruby’s interview on BBC Breakfast, watched some coverage from the 4 goes mad launch night and read some comments from Ruby in an article in the Independent- I didn’t like any of them.

I have nothing personal against Ruby Wax, I don’t know her and generally I applaud anyone who tries to battle the stigma surrounding mental illness but as I’ve said before, I don’t think celebrities are the right people to do this. I could take umbrage with her investment in the medical model but I can’t really be bothered. I could point out that she’s no longer bipolar and none of you seemed to notice- but I can’t be bothered. I could point out that Ruby has never spent time in the hideous pit of shitness that is an NHS acute psychiatric ward- but I can’t be bothered. I could point out that Ruby has never had to wait months, maybe years for the correct treatment- but I can’t be bothered. I could point out that Ruby has never been unnecessarily over-medicated- but I can’t be bothered. I could point out that Ruby has never had to apply for a mortgage payment holiday (long since expired) from her bed on a psych ward- but I can’t be bothered. I could point out that despite ‘confessing’ to being mentally ill, Ruby still has a job, in fact- extra jobs- but I can’t be bothered.

So last night turned out, as expected to be a rage-fest for me, not pretty but I had every right to be angry. I was angry at the content of the show and could sit here for weeks picking through all the bits that pissed me off. I’m not going to; I can’t be bothered. Ruby Wax’s Mad Confessions left me feeling more worthless, patronised and misunderstood than I have felt for a very long time.

What last night confirmed for me is a suspicion I’ve held for a while.

As I watched the reactions to Mad Confessions roll-in and watched some fellow mentalists and all the mental health organisations swooning over the ‘honesty’ and ‘bravery’ of the host and those featured, crowing about how this time, this time someone was really challenging stigma. This was it- she was going to be the one, Ruby Wax was our saviour. I felt an increasing distance from some members of my adopted community. It’s not just my rampant hatred of celebrity mentals that created this distance, it was more.

As I trawl around the madosphere reading blogs, tweets, articles, campaigns and press releases I’m frequently smacked in the face by

RECOVERY

I don’t like the word recovery and as a concept in its broadly accepted form it is meaningless to me. I’m not going to recover, DID is for life, if you meet me in ten years time I will still have DID, sure I’m hoping that there’ll be a lot less disorder by then but I will still be several different people in one body. This makes me unacceptable to many of you. This makes me unacceptable to society and mental health organisations. I’m not alone, this is not a situation unique to those of us with DID- though that’s my drum and I will continue to bang it. There are many mental illnesses from which people will never recover to an acceptable degree; some of us will be mental forever. I’m not some petulant recovery refusnik and I’m not playing “my mental is worse than your mental” (though if you want to fight about it I’d give you a good run for your money) but I think I have found one of the reasons I may feel that difference I talked about in a previous post.

I’m not striving for recovery. On a good day I’m living, the rest of the time I exist, I just keep on keeping on. Yes I’m in therapy and yes I work hard but I work hard to achieve a level of communication and cooperation with those who share my mind, life and body, I’m not working hard to get rid of them. This is not because I have some sort on ‘investment in illness’ or a desire to stay ‘stuck in the sick role’ this is because I am accepting of my condition and what it means for me.

When I briefly and reluctantly accepted I was bipolar (I still never believed it) I was applauded, acceptance is a big deal in mental health- after all it’s the first step to recovery. Now that I have fully accepted I have DID and also fully accepted that I’m not going to recover in a way that looks like recovery to others, I’m shunned. I’m treated like I have decided that no matter what I’m going to stay determinedly mental- forever. I go against the grain, I talk freely and openly here and elsewhere about my experiences with mental illness but there is something distasteful for some of you that I talk about working with it and not working to get past it. I’m not waiting for my meds to reach the right level, I’m not practising mindfulness techniques, I’m not going back to work, I’m not finding new hobbies to ‘distract’. I just am.

I’m letting the side down by not joining the cult of recovery, I’m not shouting from the rooftops “I WILL BEAT THIS!” I’m not laying a virtual trail of M&Ms to try and coax other mentals into doing what I do, into joining me on a righteous path of recovery and return to normality. I tell it like it is, I tell my story.

I’m not writing myself off, far from it. I have the potential to be awesome and I know it- but I will be awesome and mental. But I know that for some, I have gone too mental, taken it too far.

I’m not sorry.

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Personalisation(s) Of Services

Posted in communication, diagnosis, DID, Dissociation, Dissociative Identity Disorder, Fife, friends, insight, Internal Communication, laptop, mental illness, money, MPD, Multiple Personality Disorder, NHS, Nicola Sturgeon, parenting, Paris, single-parent, social worker, support, The Smallest House in The World, Told you it wasn't like Stephen Fucking Fry, Triggers, Twitter, tagged , , , , , , , , on July 22, 2012 | 7 Comments »

To quote from the Mind page on personalisation and to save me launching into a lengthy explanation of what it’s all about- The Government wants more people who use support services to have ‘choice and control’ in their lives. That is why they have introduced direct payments. I’ll leave the debate about Government, what it actually wants, what this means for mentalists in general to others.

I mentioned in a previous post that I had applied for an assessment of my needs from the local authority in order that I could apply for direct payments. This assessment is on Wednesday the 25th of July. This is not about me having more ‘choice and control’ this is about me actually getting some sort of service. Currently I’m deemed ‘too complex’ for exisiting services, indeed the reason it’s taken so long for a social worker to arrange to do the assessment is because I am ‘so complex’. Whilst I’m relieved that this isn’t because the social worker was too scared to come back after being met with the simmering ball of frustration and hatred I was last time which, in my defence I only was because NHS Fife were still refusing to recognise, diagnose and treat my illness and the last thing I wanted or needed was someone to help with the shopping, I need to say something about my perceived ‘complexity’.

DID is complex, I am not complex, I’m actually very straightforward, all you have to do is listen to me. If you look at me as a disorder then I’ve no doubt what you see can be quite challenging but what anyone tends to be met with is an individual, sure sometimes things go awry and you can be met with several individuals but all you have to do is listen to what they say. My ‘complexity’ is used as a stick to beat me and a reason to treat me differently, it creates barriers. Instead of all those referral letters that begin “Zoë is a very complex….” How about “Zoë is a lovely…..” or “Zoë is a very funny….” or “Congratulations, now you too can experience, first-hand the sheer awesomeness that is Zoë….” Unless perhaps it’s a referral to social services in which case and in the interests of honesty and transparency the letter should probably begin “I’m sorry, Zoë will probably despise you by virtue of your chosen profession, it’s nothing personal as I’m sure you’re lovely but she’s had some very bad experiences with your kind….”

So I’ve been thinking a lot about what my needs are, what kind of things would be helpful, would make life easier. It’s very tricky as I struggle to ask for or accept help, I feel undeserving of help and a lot of the time would deny I needed any. Coping is what we do best, those who have DID or know about DID will know that the perceived level of coping is actually inversely proportional to the mental health of the individual and I know, personally that ‘coping’ is one of my biggest danger-signs and is usually a precursor to crisis. I’m keen to avoid coping so I know I need some things in place to help make things easier, especially as I am soon to return to caring for two children full-time again.

I’ve considered the obvious things, practical support- help with housework and shopping- and ruled them out. Having to deal with people is problematic; bringing a person into my life introduces a whole new set of challenges. In a moment of insight the other night, whilst sitting in my local Chinese takeaway I figured out one of the main reasons people are so triggering, I briefly felt like a genius until I realised that reason was ‘because they move’ I then felt like a persuasive case for euthanasia. At the moment I simply couldn’t stand having someone come into the house to ‘help’ with anything, I’d be constantly on my guard to protect myself and besides they’d have had a quick run-down on DID, and they’d be waiting for me to “do a Sybil”. I’ve never read or watched Sybil so my frame of reference is lacking in detail but I know enough about it to know that for the most part, it’s a very poor portrayal of DID.

I’ve tried to look at my average day to get an idea about what my needs are, I don’t have average days. The only constant running through my days is that they will be fragmented, random and involve some chaos. Today for example involved an early-morning excursion to Tesco for milk. The trip to Tesco was derailed slightly as the store I usually go to and have well-mapped had had a slight re-modelling. I only know this as there is a ‘distress tweet’ from around 6.30am saying this, I’m very sensitive to changes in my surroundings so it may be that Tesco is much the same as it was last time, they may just have adjusted an onion or something. So I came home from Tesco with all the essentials- milk, bread, cat food and three boxes of Fuzzy-Felts (dinosaurs, under the sea and pirates for anyone interested). So I suppose I could argue that having someone to do the shopping would be helpful- but then how would I get Fuzzy-Felts?

You see my needs are unique and whilst I’m sure one box would have sufficed I can argue that Fuzzy-Felts, particularly the dinosaur ones are an essential part of my care. Similarly I could argue that I should be given black Converse free on prescription. Confusion is a major feature of DID, black Converse are the ultimate, dynamic, age-appropriate footwear- they are shoes for everyone. In situations where it’s likely switching can be rapid and chaotic, making sure everyone is wearing shoes that make them feel safe is essential. I could also make a good case for being given stationery on prescription. Post-its are an essential part of my selves-management; notes to selves are a mainstay of internal communication. The “whiteboard of madness” which hangs on the bedroom wall is crucial in ensuring that the days hang together in some way, important things don’t get forgotten and needs, wants, fears and desires can be communicated. So I could add whiteboard markers to that prescription. Some internal communication is done through drawing so colouring pencils, felt-tips, crayons and paper are also much-needed items. Now that I’m no longer unnecessarily drugged into a nice easy to-manage zombie-like state and have freed up 70% of NHS Fife’s budget by becoming a free-range mentalist, I’m considering approaching the GP with my prescription requests. After all 99% of the time I would claim not to exist in a physical sense, have no body and therefore never experience physical illness so I’m hardly a huge burden as patients go. This may or may not be related to the fact that the GP is still on the long list of “THINGS THAT ARE WAY TOO TRIGGERING”.

I’ve thought about my ‘social needs’ I do have them but again I’m constrained by my current, somewhat fragile state. I adore people but I fear them too and so, my social needs are best met in a virtual way and this suits me. In fact I suspect I spend more time with friends than most as I can do it in a way that’s comfortable, controlled and safe for me. So I could ask for help to pay for my broadband service? I can justify this request if necessary but I can’t see the local authority understanding. Similarly I could make a good case for having my mobile phone contract costs met by the local authority. The phone is essential in helping me keep track, avoiding confusion. Whether this be a photograph of a person/situation/place that later helps remind me where I’ve been, what’s happened and who with or a tweet that discloses my mood or location or a text to a friend to let them know I’ve been attacked by the ‘silencing mentals’ and not to worry as I’ll eventually be back,  the phone helps me communicate and more importantly, communicate in a way that leaves a written record so that it can be accessed again later. Since the Paris trip I’ve also undergone a comprehensive self-led training course in Google maps and navigation so having the phone with me is an extra guard against getting lost.

I’ve considered my recreational needs; I do have some as I have multiple hobbies. I enjoy the very occasional film though am still limited to watching films I’ve seen before and therefore have a fair idea of the potential triggers and can guard against them, those of you who know me elsewhere may remember the harrowing emotional rollercoaster that was my first and last viewing of Disney’s Up, I remain in two minds about balloons to this day they bring me right back to that film. I have a small team of film reviewers on twitter who have a good understanding of my needs but sadly, we’re still at the stage where the conclusion is usually “it was good but not for you yet” so I can’t go to the cinema and I don’t really need DVDs (DID and films/TV is another one of those book topics I mentioned in a previous post). I adore music, my tastes are ‘eclectic’ music is essential and again, DID and music is a potential book topic. I could argue that there is a need for my music supply costs to be met by the local authority but as I ‘purchase’ all my music from isoHunt I suspect I’d be fighting a losing battle.

So I’m a little stuck, I know I need something but I don’t know what that something is. On paper I’m an ideal candidate for self-directed care, I’m intelligent (another attribute used as a stick to beat me, MH services prefer their mentals to be stupid) I’m articulate, have a good understanding of my condition and am keen to make progress but in practise trying to define the support I need is just another cause of confusion for me and another thing that makes me feel different.

The other problem I have is that I am more than capable of doing everything myself. I have no doubt that eventually after a few weeks, maybe months this would cause complete de-stabilisation and a spiral into crisis but I can do it, I can do it all. I’m trying to convince myselves that just because we can do it, doesn’t mean we should or that we have to. It’s not easy. Self-sufficiency can be a very good thing but can also be incredibly self-defeating when it becomes more about control, lack of trust, fear and keeping everyone away than confidence, empowerment and choices.

So I’m still none the wiser as to what I should be asking this social worker for, I intend to give the matter my full attention over the next few day, in between playing with my new Fuzzy-Felts.

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Multiple Mama’s

Posted in children, co-sleeping, communication, DID, Dissociation, Dissociative Identity Disorder, emotions, hugs, insight, Internal Communication, mother, MPD, Multiple Personality Disorder, NHS, parenting, single-parent, Skills, stress, tea, therapy, Told you it wasn't like Stephen Fucking Fry, Triggers, tagged , , , , , , on July 20, 2012 | 16 Comments »

Today I have been a Mama for 18 years. That’s technically not true; I only became “Mama” around 6 and a half years ago when my youngest son decided that’s what he was going to call me, the older children followed his lead. Previous to that, I’m not sure what my title was but my job was the same.

I have three children- an 18 year old son, 15 year old daughter and a 7 year old son. The children are generally happy save for their own individual neuroses; they are intelligent and good-humoured, curious, energetic, polite, creative, sociable in their own unique way and very loving.

My parenting style is eclectic though at times, probably best described as “haphazard” I kind of make it up as I go along. Cereal (branded or generic) is a legitimate dinner at least once a week, baby wipes are an excellent substitute for a bath every other night, ketchup is a vegetable. 3 hours a day on the internet is “learning”, swearing is ok if it is grammatically correct and used appropriately. Discussion at the dinner table is actively encouraged even if it is about world hunger or decomposition- which as anyone with a 7 year-old son will know; it often is. Bedtimes can be fluid if I’m not craving peace; curfews are negotiable if the text messaged request is funny enough. Later-on drugs can be experimented with as long as they’re not chemical or addictive, getting drunk is ok as long as you stay safe and don’t get “fall down, piss yourself drunk”. A screwdriver is a legitimate toy, breaking things is “science”, woodlice are pets. Food colouring is for icing, mashed potatoes and baths. Beds are for sharing, books are important but can be annotated if desired, magnifying glasses are essential as are torches. School is crucial and should be approached with enthusiasm and the courage to question, further or higher education is optional. Individuality is cherished, love is unconditional.

In return for my eclectic parenting style I have 3 rather wonderful children, all popular with peers, all healthy, all able to come to me when necessary as far as I know- as far as any mother can know I suspect, after all you don’t know what they don’t tell you. I know I’m not an ogre- the 18 year old is able to discuss his sexuality with me, the 15 year old trusts me with her secrets and friends, the 7 year old still thinks I am a walking encyclopaedia even though I have led him to believe that the answer to many questions is “magic” (accompanied by appropriate hand-gestures and “woo” noises).

I’d be lying if I said my mental health hadn’t affected my children, particularly over the last year or so. They have had to go through things and witness things no child should ever have to be subjected to. The one thing I know I will never forgive the mental health system for is the effect their mistakes and negligence had on my children. I obviously feel guilty about my own contribution to what the children suffered but I know I couldn’t help it. I also know I repeatedly asked those who should have helped me to help- it’s not my fault they didn’t.

Even outwith times of crisis and given that the illness I have, dissociative identity disorder (DID) doesn’t just suddenly appear in adulthood but has been present in some way throughout my life, my mental health has affected my children and my relationships with them from the start.

Today, July 20th 2012, I can only remember one of the ‘starts’, I currently have no access to memories of my children prior to 2005, it’s as though I wasn’t there.

I wasn’t there.

I have a metaphorical book of facts; I can tell you birthweights, the ages at which developmental milestones were met and have the odd anecdote but beyond that- nothing. I have many photographs of the children, sometimes they can help access a memory of a time, place or event but it is to my eternal sadness that there are very few, if any photographs of me and the children. I’m terrified of having my photograph taken, in the few photos that do catch me, I look terrified. I have no proof that I was ever there and in the absence of feeling like I was there, this is difficult. The children don’t have DID, they do have memories and they often share them. Their accounts of me are usually positive so I take comfort from that. I also know that whilst I may not be able to access my memories of the children- they are there and I’m hopeful that, in time, they will become my memories too.

There’s no doubt that my mental health has had many negative impacts throughout the children’s lives but I’d argue the positives from having multiple Mama’s outweigh the negatives.

I am able to share my children’s interests- everything from the 18 year-old’s love of trains and foreign languages, to the 15 year-old’s love of reddit and shoes, to the 7 year-old’s love of Lego and Spiderman.

I am a very accepting person, anything goes. I have a moral compass that spins freely. Nothing my children do is unacceptable, certain situations may need a careful approach; some extra thought but nothing phases me. I’m slightly challenged by the 18 year-old’s support for Scottish nationalism (with a capital N) but there really is no-one better for him to discuss it with and I’m optimistic I can convince him otherwise but equally happy if I can’t. I frequently annoy the 15 year-old with my general ‘enthusiasm’ for things but she knows that it can be used to her advantage- be this in shoe or pancake form. The 7 year-old can vomit on demand at the dinner table should I stray from his desired diet of processed beaks and feet wrapped in batter, served with bastardised potato shaped into smiley faces, animals or letters but he knows I love those smiley faces, animals and letters as much as he does. I don’t stress over the little things, meeting the 5-a-day requirement in this house often includes the consumption of  “imagination salad”.

Thanks to my amazing powers of dissociation I am excellent in a crisis, should you back-flip into the corner of a table and sever a blood vessel there is no-one better to accompany you to A&E. I am a calm, reassuring presence even when faced with spurting blood and general distress.

I am fiercely protective of the children and attentive to their physical, emotional and environmental needs. This means I am happy to demand a same-day GP appointment in the face of cross-examination and insistence that such a thing is impossible from the receptionist. I am quick to challenge a school “behaviour policy” that uses shame to try and elicit compliance and should the children desire a mural on their bedroom wall or fairy lights in the kitchen than that’s ok too.

I am a good Mama.

So why today am I sitting here, worrying?

I’m worrying because tonight I have promised to take the now 18 year-old out for his first legal pint- out, to a pub. I don’t need to tell you just how challenging this is, I briefly began to consider all the known triggers and stopped when I got to double figures. I daren’t even think about the ones I don’t know about. I’m confident that I will appear well, it may be the quickest pint ever but I’m sure it’s something my son will remember forever and I’m honoured he chose me to share this moment with him. I’m pretty certain that the situation will be so stressful I’ll have no memory of it at all and I don’t doubt that it will cause some internal distress, but I’m going to do it- that’s what Mama’s do.

I’m worrying because on the 3rd of August my youngest son will return to my care full-time, having spent the last 9 months or so living with his father. I have stayed in contact with him throughout this period and it was always my intention to have him home when I felt well enough. The choice to wait until I was well enough wasn’t mine to make so he’s coming home a little earlier than I would’ve liked, I am in no doubt that this is the right thing to do. I accept it will be challenging and I accept that my progress, which to-date has been consistent and rapid will probably slow as I try to combine therapeutic work with caring full-time for two children again.

I’m worrying because although I know I’m a good Mama, I’ve lost a lot of confidence in my skills, I share the role with several others.  They all have something to bring and all have contributed in some way to the amazing creatures the children have become. I don’t expect it to be easy but I know, in time, I will get that confidence back. In spite of everything I have three securely attached, integrated little people to love and call my own.

Well I say little people- the 18 year-old is 6ft 2 with size 17 feet, I can only hypothesise that his father was a giant or a clown- perhaps a giant clown? I have no idea and I suspect, given my track record with men that some things are best left dissociated.

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A Thoroughly Modern Multiple (Part 1)

Posted in activist, blogging, book, DID, Dissociation, insight, Internal Communication, laptop, politics, stickers, Told you it wasn't like Stephen Fucking Fry, Twitter, Uncategorized, tagged , , , , , , , on July 17, 2012 | 6 Comments »

My head is brimming with blog posts; I think it’s a testament to improved internal communication that our writer in residence is being inundated with ideas and requests. It’s also wonderful to know that now I know I’m not bipolar (I never thought I was and I told them it wasn’t like Stephen fucking Fry) this is not due to mania; it’s also nice to know that all of these potential blog posts are safe, won’t be forgotten. I may not know what they are but I can rest easy as someone else does. I’m still wary of blogging “too often”; I’ve never managed to define what “too often” would be so the aforementioned posts may all appear today, over the next year or so- or not at all. I don’t know.

Anyone who knows me will know I have a love [twitter]/hate [fucking iTunes] relationship with technology and that overall I am technology dependent. I’m not unique in this I know; after all it’s 2012 who doesn’t have internet access at home and on the move? Who doesn’t depend on social networking to stay in touch with friends? Who still buys CDs? I suspect though that as with everything I do- I’m doin’ it the DID way.

This post is in danger of being exceptionally long, this is another one of those “I could write a book on DID and …….” topics (the others so far being, shoes, books, hair, music, parenting and clothes) so I’m going to restrict my ramblings, I can never be sure if parts 2, 3, 4……….100,000 will ever get written but I still have no desire to bore my audience to death. Unless some of the mental health professionals I’ve met are still reading of course…..

The blog

I’ve blogged about blogging before, it’s clear I get something out of it- several things but it’s only now I have a good understanding of the true role it plays. First and foremost I write the blog for myselves, I advise anyone considering becoming a blogger to do the same (multiple selves optional). The blog is my story. I’m 37, I don’t have a story, well I do but it’s in several chapters and many of those chapters are completely inaccessible to me, for over three years now, I’ve had a story; a continuous narrative. Obviously there are gaps (out of all the things the unnecessary medication killed off- the blog was one of them), there’s always going to be gaps but the bare bones of a story are there. Back in the days of extreme chaos, before I was correctly diagnosed, when I sometimes knew I had DID and sometimes didn’t I would read the blog and learn things from it. I often was surprised to find that posts had been written and published as I had no memory of doing so. Posts are littered with clues to my multiplicity; I didn’t pick up on them all on the first reading or the second or even the fifteenth but eventually little bits of information began to sink in. Again back in those days of doubt, certain posts would come to the attention of fellow DIDers who were able to recognise my symptoms for what they were. Those pingbacks, emails and comments were essential validation at a time when those around me were insisting I was wrong. Anyone with a rudimentary understanding of DID who read the blog and followed me on twitter was able to see that I was in fact the most obvious multiple on the internet. I am still enormously grateful to all of you who reached out to me, I appreciate it’s a tricky and courageous thing to do. My own DIDar (it’s like gaydar) has been functioning well for a while and I know how conflicted you can feel when you spot someone, want to help but don’t want to scare the shit out of them by letting on.

The blog is also an aid to internal communication, in times of conflict or confusion I am able to consolidate some of the [number I will never reveal] thoughts, feelings, ideas and perspectives in one place- after several readings of the post some decisions can be made, plans formulated and precarious, short-lived harmony restored. I get a lot of ‘help’ when writing posts- the writer’s head noise is often the loudest. Blog posts may read to the untrained eye as a simple, humorous, sometimes harrowing account of my daily struggles with mentalism but they tell me so much more. I can tell you that some 585 words into this post that two separate parts have had a hand in writing it. I can also tell you that with my knowledge that I, the writer of the blog, am one ‘part’ of a system of dissociated identities am really struggling to make this post read as a first person account! It’s important to me that the blog, though it comes from a fragmented mind and identity represents something whole, it’s a skill I’ve had to work hard to develop. This hopefully also explains why those of you who praise my writing on twitter or wherever get the standard response of “thanks, but I don’t write the blog”. I don’t use twitter.

The blog gives me a voice, allows me a place to make a contribution of sorts. I suspect I have ruined my future career in politics but here I can be political and people listen and respond; it’s enough to satisfy that need.

I like to think that each post educates in some way, demystifies DID, I may be talking about extreme and sometimes ‘scary’ mentalism but I like to think the way it’s presented here makes me your friendly neighbourhood multiple. For those of you who have known me for a long time, the blog comes from “Zoë Smith” (not so much a name as a concept), the same Zoë Smith you have known and loved/hated/tolerated for a while. I may be officially mental now but in many ways I’m just the same as I was, I’m not scary, DID isn’t scary.

The blog is a community for me, I’m having some other thoughts on my place in the larger madosphere community (those thoughts being one of the potential blog posts) but here, on one of the best blogs on the internet I have a family. The regular commenters, some of who know me elsewhere, some who only communicate with me here play an important role in my life. All bloggers love feedback – I love to write, I write for myselves and if I’m happy with it then that’s enough- though I do wish someone, anyone would pick up on the sheer genius that is the title of the posts. I’m beginning to wonder if they’re just a bit too technical or DID-specific as to me, each one, though brief is an essay in itself. When I look back through the blog, as I often do, frankly I astound myself with insight I didn’t know I had- “Where I Play And Do?” being a classic example. That post was a collaborative effort with another part- as many are (if we can get a few more political posts up I reckon the blog could be a contender in next years Total Politics blog awards in the group blog section); it appears to be a fairly banal post about an inappropriate attachment to a laptop. It is far more. I may not have understood a lot of the content myself, my role is to create writings that are easy on the eye using information fed to me from more learned parts but, yeah, I’m dead proud of that title and nobody picked-up on it! All posts are a learning experience for me, in fact I notice for the first time I’m talking about myself- as that one part of many. I’m not comfortable with it so I’ll get back to what I was supposed to be discussing.

I don’t respond to the comments left here, I leave that to someone else but the conversations and connections made in the comments are essential and bring much needed friendship, love, humour, support, sympathy and acceptance. Many friends have been made through the blog and as a collector of people (they’re cheaper than stickers and stationery) this brings a lot of joy to an otherwise challenging life.

So there you have it, my own unique relationship with blogging. I was going to write about twitter too but I think the relationship I’ve described with blogging is revealing, weird, convoluted and mental enough for one post.

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The Doors Of Consternation

Posted in DID, Dissociation, DIY, DLA, driving, Internal Communication, The Smallest House in The World, therapist, therapy, Told you it wasn't like Stephen Fucking Fry, Triggers, tagged , , , , , , , , on July 11, 2012 | 31 Comments »

I need to buy and fit two doors. Why I need to do this is not important and indeed I’ve decided why the two doors are missing in the first place is not important either- purely as cover for the fact I have absolutely no idea. I suspect they were victims of a period of home-improvement cruelly disrupted by the arrival of mentalism.

The smallest house in the world is one of the more obvious casualties of my descent into mentalism. It was never palatial, always in a constant state of “being done” but now it’s verging on barely habitable. I could list the problems but it’d be very depressing so I’m not going to. These days I just turn the music up so I don’t have to listen to the malevolent drip, drip, drip that comes from the dodgy plumbing in the bathroom and if nothing else the resident slugs provide material for humours tweets.

Replacing the doors presents multiple challenges- some are obvious and certainly not unique to mentalism.

B&Q won’t deliver them; they won’t fit in the stupid car.

I’m quite proficient in DIY but don’t think I’ve fitted new doors before so may have to upskill myself.

The smallest house in the world has the most awkwardly sized doorways, any doors would have to be cut in order to fit; this would have to be done in the garden and as everyone knows it’s monsoon season in the UK.

I was assured by the <?> therapist at some point in June that I have

“Solutions not Problems”

She’s right, though also sailing dangerously close to wanky platitude territory and everyone knows how much I love wanky platitudes-except perhaps the <?> therapist….? I’m sure she’ll be told at some point, no doubt when she crosses the line from “wise words” to “wanky platitude”.

I do have solutions to all the above problems-

I can drive; I could hire a van.

I’m literate; I could learn how to fit doors.

The house is complete shit-tip, who am I trying to kid that it would look any worse with a few piles of sawdust here and there?

I could do all of these things- in theory.

Truthfully, at the moment I couldn’t do any of them. I’m not lazy or helpless, far from it, but I am broken, malfunctioning.

Hiring a van would inevitably involve making a phonecall. Brief outgoing calls I can do- with a lot of planning and if there’s no risk that the call won’t go as predicted. I’m so easily triggered that switching is still random and chaotic, I recently had to phone the lovely people at DWP as there had been a mix-up with my DLA, it was all their fault, they had made a major error- an error that had stopped my payments for months. I called them to ask them to fix it and generally have a well-justified rant, the call started well but the call handler was unusually and unexpectedly apologetic and sympathetic so I found myself on the phone mid-conversation with no memory of what had been said and indeed not really sure why I was calling in the first place. I can’t imagine many van hire companies would be keen to enter into a contract with a woman who forgets who she is and why she’s calling.

I am a gung-ho DIYer I generally believe no home-improvement task is beyond me. In the past I have hung wallpaper, laid carpets, painted, tiled, rewired, installed, plumbed, repaired and replaced usually with satisfactory results. I’m not perfect but also not easily phased or defeated. Or at least I was. These days I’d be lucky to get as far as getting my toolbox out before forgetting what I was going to do, forgetting how to do it, not wanting to do it, engaging in a random bout of sobbing for reasons unknown or doing something completely different instead.

I have considered getting “a man in” to sort the doors and instantly dismissed it. Few situations are as obviously triggering as having an unknown male in the house, for an indeterminate period of time. Real people still make me mental; any face-to-face interaction that lasts longer than 15 minutes brings on the “personality wheel of fortune” effect, whilst most switches are subtle and only obvious to the trained eye, some aren’t so it’s a risk not worth taking. Encounters with real people still leave me confused and amnesic, their words, movements in fact their mere presence is just one trigger after another.

So I won’t be replacing those doors any time soon.

I’m frustrated that there are so many obvious signs that I’m losing the life/mental balance, particularly as I’m not, I’m winning. My victories may be small, almost imperceptible and as I tend not to talk about them in detail outside therapy nobody knows about them but they are there.

I may have no living room door but I do have a “safe place” in my head, a safe place I built somewhat hurriedly on Tuesday morning after a night of terror that had the potential to send me hurtling into another crisis. I needed to build the safe place in order to deal with the issue that had caused the night of terror in the first place. On Tuesday morning; with assistance via text from the <?> therapist I achieved something immense, something amazing and the crisis was averted.

Therapy for DID is different, I don’t talk about it much, friends often ask how it’s gone and my honest reply is often “I don’t know as I didn’t go”, very few friends know how to follow this up and I understand that. Achievements made in or as a result of therapy are often difficult to describe, I’m never going to be able to say “it was great, we talked about my anxiety, I went to Tesco and felt fine” it just doesn’t work like that. It does work though, it may work very slowly, it may work in a way that nobody other than myselves and the <?> therapist know about, but it works. It works for many reasons, not least because I put the effort in, again I don’t talk about it much but internal work is almost constant, it’s often very difficult but I don’t shy away from it.

So there may be three days worth of washing-up in the kitchen and the amount of cat hair on the living room carpet is such that very soon I shall be able to simply roll it up and discard it (I have multiple cats), I may end up going to Tesco later and buying the usual random, eclectic selection of goods in my usual fear-driven haze and still have nothing in for dinner. I may never replace those doors; the bathroom floor may well rot away completely and slugs may eat my eyes out of their sockets whilst I sleep. I don’t doubt that the external effects of mentalism will continue to frustrate and upset me but I have work to do.

It’s swings and roundabouts.

I love swings and roundabouts- especially swings.

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InequaliTy

Posted in activist, Anxiety, bipolar, depression, diagnosis, DID, Dissociation, driving, hospital, illness, insight, Internal Communication, mania, mental illness, MPD, Multiple Personality Disorder, NHS, parenting, politics, Triggers, tagged , , , , , , , , , , on June 27, 2012 | 25 Comments »

Today is bipolar awareness day, happy bipolar awareness day, may your day be filled with stability or shoe-purchasing, hilarious mania. I observed the day last year, when I was still officially the least convincing bipolar people in the world. I observed it with my usual mix of sadness, outrage, activism and piss-taking in 140 characters or fewer.

There are lots of awareness days, some kinds of mental even have a week (OCD) and some a whole month in which to be aware (Depression).

There is no DID awareness day

I’m not surprised- after all how on earth could we ever decide when to hold it? As a fellow multiple pointed out this morning we probably couldn’t even decide whether to hold it in the present or the past. Then we’d have to factor in those who remain in denial that they have DID, those who are too ashamed to admit it, those who would rather buy crayons, those who would ponder if it would be the perfect day for suicide and those who never know what day it is anyway. The chances of us agreeing on which colour the DID awareness ribbon should be are slim to none. I’ve taken to wearing these on my jackets, I assume the world thinks I’m gay, I know I’m a multiple.

We could just ‘celebrate’ all the awareness days/weeks/months for all our various comorbidities, for most multiples, every day could be an awareness day. Just think of all the cards and presents!

Joking aside, this is indicative of something far deeper, something I’ve been tentative to address, mainly as I’ve been to busy licking my (metaphorical) wounds and mourning the loss of my career.

Dissociative Identity Disorder, DID is many things but primarily it is a mental illness. I can’t decide if DID doesn’t fit the traditional ‘illness model’ or if the traditional illness model doesn’t fit DID, it doesn’t matter- the results are the same.

I am quite clearly as mad as a box of frogs; in short I believe I have several other people living inside my head/body, these other people all behave, think, act, dress and talk differently. Whilst there’s never a dull moment with DID my functioning is severely impaired, my quality of life impaired, my future affected, the lives of my children are affected, my income is affected- there is nothing DID, nothing the mental illness I suffer from doesn’t touch.

I can’t tell you the last time I saw a psychiatrist, this is not due to my usual problems with memory, this is because ‘my’ psychiatrist doesn’t want to see me. Don’t get me wrong, I can think of several people I’d much rather spend those precious 8 minutes every couple of months with (in fact, anybody) but why do I not see a psychiatrist? Am I cured? Am I no longer mental?

No and clearly- no.

I don’t see a psychiatrist because my psychiatrist doesn’t know what to do with me. There is no drug treatment for DID so I can’t be drugged into a nice, easy to manage state. Seeing the psychiatrist is such a triggering event that we invariably send our sanest part to consultations, she’s lovely but formidable and never shies away from pointing out flaws in professionalism; in fact I suspect the psychiatrist may still be recovering from the last consultation.

I have no care plan; never have; I’m not even sure what one is. Is this because I have no care needs?

No.

I have no care plan because current provision cannot meet my needs; I fit the criteria for a CPA but don’t have one. For too long I have accepted the blame for this having been told by many mental health professionals I’m “different” or “complex” and my favourite “challenging”. I don’t doubt for a second I am all those things and more- they are all symptoms of my illness.

This discrimination is nothing new to me. Sometime last year, during the perpetual crisis season I was visited by the Fantastic CPN, she was so concerned about the (frankly atrocious) state of my mental health the GP was asked to visit- the GP was equally concerned and they tried to persuade me to attend a mental health assessment- I refused. Mental health assessments are not something one can refuse as the answer to refusal is that you are clearly so mental you need get one anyway.

The psychiatrist did not bother to assess me as there was “nowhere suitable to put me” this was at the time my correct diagnosis was accepted but not allowed to be spoken of as I hadn’t had the official stamp on my notes. Don’t get me wrong, I’m relieved I escaped yet more time in the horrendous pit of shitness that is the local acute ward but that day, a Friday I was considered to be a danger to myself, a danger to my children and I was left, alone, all weekend. The children were removed from my care and placed with their father; I’ve yet to get one of them back.

I struggle to label myself as a “trauma survivor” that’s kind of symptomatic of DID, particularly at this early stage in treatment. I’ve done the ‘backwards calculations’ though and as painful and difficult it is for me, I know I didn’t end up where I am today because I was a slightly miserable kid. In fact I like to think I was a veritable ray of sunshine who left a trail of happiness and rainbows in her wake.

I am a trauma survivor.

I suffer from all the same problems as other trauma survivors do- multiplied. From the little things to the big things- multiplied. I have PTSD- multiplied.

I haven’t survived the trauma of combat, just my life. There are a number of national PTSD organisations and charities in existence to help those traumatised by war and I salute their efforts. Had I survived war then I would be able to approach one of those organisations for support, guidance and maybe even some financial assistance. The first and best advice I got when I began treatment for DID was to get rid of anything in the house that was triggering, to make the home environment safe. How I wish I’d been told this before I became too ill to accept the new 5 year contract I was offered in May 2011. The back garden of the smallest house in the world terrifies me, I can’t go out there- all it needs is a 6 foot fence around the perimeter to make it ‘safe’, I can’t afford a fence, I miss the garden.

I recently replaced some cushion covers as the existing ones were triggering, I am now able to spend 6 minutes in my own living room before I scuttle back to the safety of the bedroom, 6 minutes is crap but it’s an improvement on my previous record of 4.

Then there’s  the stupid car, I had hoped “being too terrified to go over your own front door” would be enough to qualify for the higher rate of the mobility component of DLA so I could make use of the Motability scheme but alas as I have two legs this is not the case. The fact those legs often don’t move (freezing is a very common trauma response) or those legs are often very painful (somatic memory) is insignificant to the DWP. I need the stupid car to retain that tiny bit of independence I have, the stupid car, for all its failings is safe.

I am working hard in therapy and have made huge progress, I am a very active participant(s) in my own ‘recovery’ (a word I despise in this context but I can’t think of a suitable replacement) and with the right package of care I could be doing even better. I’m not a fool, I know my journey is going to be long and at times very difficult but it’s a journey I’m willing to travel. I know what my needs are, I am aware they don’t fit with the traditional needs of someone with a mental illness but they are needs that I have as a direct result of my illness/disability, I intend to apply for Direct Payments to meet my needs. I have no doubt I face an enormous challenge but I am determined. I have been NHS Fife’s ‘dirty little secret’ for too long, I’m not a bad person, I have a mental illness. I asked for a social worker to assess my needs on the 12th of June, I suspect they’re still drawing straws in the office, if it’s any consolation I have no desire to deal with any of them either- but needs must.

There are two survivor-lead organisations for those with DID, First Person Plural and PODS but they are small, under-funded and generally unnoticed. I hope one day to have the strength and stability to help move DID out of the shadows. Not because I think we’re special but because we trauma survivors deserve the same services and same recognition as everybody else with a chronic mental illness.

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This Post On Sleep

Posted in communication, DID, Dissociation, insight, Internal Communication, laptop, MPD, sleep, suicide, tea, Told you it wasn't like Stephen Fucking Fry, Triggers, Twitter, tagged , , , , , , , , , on June 25, 2012 | 10 Comments »

I never did write that post on sleep, I alluded to it often enough, my frequent references to sleep and teasers about “that post” are scattered throughout the blog. I’m not even sure what that post was now so I’m writing this one instead.

I can’t sleep, well I can, but not in a way that’s either useful or healthy. My inability to sleep makes me feel somehow deficient, lacking in basic life-skills, sleep-wise I am developmentally stunted, my ability being akin to that of a 3 month old infant- but without the daytime naps or beguiling smile to make up for it.

I am a horrible infant.

I know why I can’t sleep but contrary to my usual “knowledge is power” stance this knowledge does little or nothing to help.

Imagine if you will, that every night you have to get a group of people, all with their own thoughts, needs, complaints, concerns, fears and desires to get into bed, stay there and sleep all night.

Are you imagining it?

Your imagination is my reality

My sleep problems aren’t wildly different to those of your average chronic insomniac- the problem is I have all the problems of all the average chronic insomniacs- in one body.

Everybody, from time-to-time will spent a few wakeful hours in bed of an evening ruminating- a word I have real difficulty using thanks to the NHS standard CBT- based therapeutic approach.

“are you ruminating?”

“er…well..yes…I do worry…”

“WELL STOP IT!”

I feel guilty for ruminating but it’s not something I would choose to do and in my defence, much like a cow, I can’t digest things without some rumination. My rumination takes many forms, I think about all the kinds of things that other people think about- all at the same time. I think about what I’ve done that day, how it could’ve been done differently, what went right, what went wrong- all at the same time. A seemingly mundane trip to Tesco can result in hours of head noise where every possible perspective is discussed. It doesn’t help that evening head noise is inclined to be more of the “voices” type that the “other people’s thoughts” type, I hate hearing voices- it’s mental.

Everybody spends a little time at night thinking about the following day, what they need to do, want to do and hope will happen and not happen. I do this too but I think about the following day in every way possible- all at the same time. I can simultaneously plan a trip to Hobbycraft to purchase wool/stickers/glitter/paper/glue (but not colouring pencils, for reasons unknown the colouring pencils in Hobbycraft elicit a brief but heartfelt bout of sobbing) and my own death. I can think about what paperwork needs done whilst deciding whether or not to make soup. I can plan an awesomely fun trip to Ikea whilst fearing going as far as the end of the garden path. I worry about having to go out and dread a day of having to stay in. The only constant is that most days begin so early and after such little sleep that doing anything or going anywhere is often out of the question anyway thanks to permanent exhaustion.

Everybody has dreams and nightmares. I am unsure as to how I ever get as far as REM sleep given that my nights are a series of brief naps of around an hour but I’m not going to try and justify the physiology, I’m too tired. I have dreams and nightmares- often both- at the same time. I dream the dreams of many- concurrently. Dreams therefore just become another form of head noise, they are not a helpful way to process the day but are unsettling, confusing and something I’m keen to avoid. The only way to avoid dreaming is to avoid sleeping and sometimes this seems like the best plan.

Everybody has fears at night, even adults feel a little more vulnerable at night, I know I’m not the only 37 year old who does the “running, jumping thing” to get back into bed after a nocturnal bathroom trip. I can rationalise those fears- sometimes. I crave sleep; I am terrified of being asleep. I need to be awake, watchful but I fear being woken-up. I can see how ridiculous this is but I can’t help it and I console myself with the knowledge that my hypervigilance, combined with my ability to be awake for 22 hours a day means I have a very promising future in the surveillance industry.

I’m currently working on sleep and it’s very hard work, time-consuming, daunting, strangely lonely work. I’ve alluded to the “protracted bedtime routine” on twitter and anyone who knows me there will know that it has, so far been largely unsuccessful. I’m disappearing earlier in the evenings but I am still the first one up in the morning.

Daily Time Stamp- around 4am today

I’m grateful that we mentalists as a community have many interpretations of what constitutes “day” and the nocturnal mentalists are still there when I get up for the day to greet me and send me virtual tea and toast. I meet many fellow insomniacs and sympathise and of course there’s always the trusty Australians, Kiwis, Canadians and Americans happy to give me updates on yesterday and reports from the future.

The protracted bedtime routine includes your basic sleep hygiene (again, a term I hate and to quote a friend “Why do they have to call it hygiene? Hey you… dirty person…this is why you can’t sleep.. stop thinking, drink milk.”) so no tea after 6pm, no laptop/phone after 8pm, think happy thoughts, adjust room temperature, blah, blah- you know the drill.

Sleep hygiene for [number I will never reveal] separate people is a little different.

No tea after 6pm has been surprisingly easy, I suspect our tea drinkers are so desperate for sleep they’ll do anything.

Switching the laptop and phone off  is relatively straightforward though both devices are often switched on again, and off again, and on again and so on.

Getting the room temperature right is a drawn-out battle between those who like it cold, those who like it warm and those who prefer an ambient temperature.

We’ve introduced several new rules to help with sleep (oh how we love rules)

-  No nocturnal bathing- this has not gone down well, scalding hot baths at 3am were clearly very popular but we’re keen to confine the risk of requiring treatment for burns to office hours.

-  No getting up before 5.30am -some do, some don’t. I think it’d be easier if we all woke up and got up at the same time- even if it was horrifically early. Staggered wakening has the “dementia effect” with “what day is it?” being queried repeatedly until around 11am.

-  Snacking during the night is ok; we’re often hungry, thanks mainly to those who still react to any stress by foregoing food during the day. The challenge here is ensuring the snack is toast or fruit as opposed to inhaling half a kilo of Haribo at 2am.

-  No nocturnal housework- this has actually worked quite well though I kind of miss the “Elves and the Shoemaker” effect. Dissociation is many things but it can be handy waking up to a tidy house with no recollection of having tidied it.

There’s a period of around an hour before getting in to bed that is taken up with ensuring everyone knows where they are and more importantly where they aren’t. I think this is a kind of grounding exercise, it mainly involves picking up various objects and pointing out “we didn’t have this before, we do now” it takes ages and not everyone is always convinced.

We throw a little light bedtime reading onto the mix, firm favourites at the moment are Mick Inkpen, Julia Donaldson and Allan Ahlberg (should my future career in surveillance fail I have the potential to be a fantastic children’s fiction reviewer). Then it’s time to actually get into bed.

One success in all of this is that we are now able to ‘sleep’ in the bed every night. Gone are the days of sleeping, terrified on the floor or sofa. I’m glad as the smallest house in the world is also the dampest house in the world and those nights on the floor in the gap betwixt bed and wall were grim and cold, the danger of contracting mycotoxins was both worrying and at times welcome if it brought with it the promise of premature death.

Getting into bed is an event, mainly due to the size of the stuffed-animal menagerie. I used to be ashamed of the number of soft-toys in the bed, ashamed and confused, I’m 37, I don’t think (I don’t know) I had a collection of stuffed animals as a child so why now? I’m over it, pillow-height should be amongst the diagnostic criteria for DID. I’m yet to find an acceptable solution to the problem of having more stuffed-animals than hands so careful arrangement of all bed occupants takes some time.

Lights-out is at 10pm, followed by “panicking because it’s dark” at 10.01pm at which point attention is drawn to the Chernobyl-like glow from the many glow-in-the-dark stars on the walls, ceiling and furniture.

Then the head noise begins. Sleep comes eventually- another success is the ability to get to sleep without medication, (apologies to anyone who has shares in Zopiclone) albeit briefly. There is something soul-destroying about waking-up, checking the clock and figuring out you’ve slept for 40 minutes. Best case scenario is that everyone has slept for those 40 minutes but more often than not those 40 minutes are as busy and noisy as the time we spend awake.

The nights rumble-on, they feel long and a lot of reframing is required-

Only mild pain- good night

No flashbacks- good night

No nocturnal wandering- good night

Two hours undisturbed sleep- good night

In truth, it’s all very shit and I’m fed-up of it. I’ll persevere as I have no choice but I’m beginning to wonder if sleep will ever be anything other than a terrifying, frustrating, exhausting  battleground.

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Helping The Help

Posted in #MadParisJolly2011, art, Awesome Psychiatrist, bipolar, blogging, communication, crying, depression, diagnosis, DID, Dissociation, DSM, emotions, Fab Psychologist, health, hospital, insight, Internal Communication, labels, Lovely GP, manic, medication, mental illness, MPD, Multiple Personality Disorder, NHS, psychiatrist, stickers, suicide, The Fear, therapy, Told you it wasn't like Stephen Fucking Fry, tagged , , , , , , , , , , on May 25, 2012 | 23 Comments »

Two years ago today I wrote this blog post

Ever wish you hadn’t asked?

Some time last year that post was edited and the link within changed- the link was originally to the Wikipedia entry on DID (which incidentally I think is rubbish). I know why it was changed and for the purposes of this post it doesn’t really matter. What does matter is that for two years I’ve known I had DID, the nature of DID means that I didn’t always know I had it and often didn’t think I had it- but I do and I’ve known for a very long time.

This post is dedicated to all the psychiatrists, psychologists, nurses & doctors (and there have been many) that have met me and treated me in those two years; I know many of them read the blog (though strangely they never leave comments). Even if you’ve never had the privilege of being involved in my ‘care’ if your profession brings you into contact with human beings, you may learn something too so please read on.

I can’t believe you all missed it, it was hardly subtle and I did, very kindly point it out on a number of occassions. You all need to learn about dissociation and dissociative disorders, you all need to find the courage, humility and confidence to do what’s right for those in your care. If you don’t know what you’re doing- admit it and find someone else who does. Listen to your patients, accept what is true for them, however distasteful, frightening and anxiety provoking it is for you. Put your egos to one side; ignore the flawed politics of the system you represent, stop damaging people who have been damaged enough, admit you got it wrong. If your manager/colleagues/profession are unsupportive- call them out on it, stand-up for yourselves, stand-up for your patients.

It’s too late for me, the damage caused by your mistakes is huge- but there will be others and you owe it to them, to your profession and to yourselves to ensure you don’t do to them what you did to me.

Don’t make anyone else have to fight the way I had to fight to get the correct diagnosis, care and treatment- for that fight was very damaging. Don’t assume that you know more than your patients, for all your qualifications it is the person sitting opposite you who is the expert on their own mind. Listen, believe and accept, if you can’t or won’t, have the decency to find someone who can and will. I hope every one of you has learned something from me and I hope some of you will go on to learn more in order that you can do your job and do it well.

You hold peoples lives in your hands, you have great power- but always remember what Spiderman said……. or Voltaire if that’s your bag, he said it too but Spiderman says it better.

A multiple never forgets

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The Right Help To Be Terrifyingly Confused

Posted in DID, mental illness, Multiple Personality Disorder, therapist, therapy, Told you it wasn't like Stephen Fucking Fry, tagged , , , , , , on April 18, 2012 | 21 Comments »

I was deemed worthy at last, funding was awarded for the long-awaited ‘right help’. I have a new therapist; her adjective is yet to be decided but she is both right and helpful. I’ve only met the <something> therapist twice but already I can see that the need to constantly explain myself, my thoughts, my symptoms, my actions, to somehow justify my ‘complexity’ has gone. I’m not complex, I am a bog-standard multiple (if such a thing exists- we are wonderful, interesting, exotic creatures) I am ‘normal’. Abnormally normal but normal all the same- I fit, my experiences aren’t wildly different from what they ‘should’ be anymore- there is some comfort in that. Just being able to speak to someone who ‘gets it’ instead of someone who looks terrified/confused/doubtful/anxious/conflicted/fascinated/horrified is, is- well it’s ‘ok’.

Whilst I can already see that the right help is both right and helpful it is also a number of other things, mainly confusing, a word that means more daunting than daunting, terrifying and uncertain.

The confusion is painful, endless and ultimately a bit confused. I don’t think even I could come up with a nice, flowery metaphor to explain it. It is agony. Whilst each session of the right help so far has brought  relief at not being treated like a psychiatric curiosity or a problem, comfort in finally being heard and the knowledge that there is now ‘something’ there to help- there is always a period of intense sadness afterwards when I realise the <something> therapist didn’t at any point say-

“I’ve made a terrible mistake, I treat DID, I am the wrong help for you”

Of course the confusion is compounded as she might well have said it and I just don’t remember…..

I may have to invent a word that means more daunting than daunting, I’m not sure there ever could be a word that sums up the way it feels to finally be starting your life, nearly 37 years after your life officially started. Whilst  that feeling may hint at something resembling positivity, I’d argue at this stage it’s more a recognition of potential, potential.

The right help is also terrifying; I think it may even be more terrifying than no help and the wrong help. I can’t decide (see ‘confusion’ above) and I can’t put it in to words. I spent so long appearing never to need any help for anything; it’s hard to adjust to allowing help- especially help that might actually help.

Nobody can tell me how long the right help will take, nobody can even guess but I know it’s going to take a long time. I always have millions of questions; many of them don’t have answers. I think I’m supposed to do the whole ‘acceptance’ thing but it’s just not happening. I’m also supposed to just ‘be’ I’ve never been able to ‘be’ I ‘do’ I don’t ‘be’. I think at this stage I’d accept being lied to if it meant I had something tangible instead of the constant uncertainty about what comes next and “when will I be able to <insert anything from the mundane to the fanciful here> again?”

I’m exhausted, career mentalism is draining and challenging, the rewards are few and far between, the pay is terrible and my annual leave entitlement is zero.

My job is survival, out of all the jobs I’ve had (and they have, unsurprisingly been many and varied) it is without doubt the hardest. I often have nothing to show after a 24 hour shift other than the fact I am still breathing. There is nobody to recognise my ‘achievement’ other than myself.

I know she is in there somewhere.

The conditions, pay and benefits may be atrocious but there is some hope for the pension, I just have to survive long enough to accrue it.

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