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Posts Tagged ‘DID’

Wise Investments

Posted in conflict, Internal Communication, tagged , , , , , on September 8, 2012 | 9 Comments »

So much can happen in such a short time when your personality is not just fragmented but completely obliterated, compiling a blog post that says what needs to be said, what I want to say yet at the same time doesn’t reveal too much is extremely difficult.

The need to tell a part of the story is still there so the blog is still here.

The drive to write, to communicate, to educate, agitate and entertain is still there and so the blog is still here.

I am still here so the blog is still here.

I tried very hard not to be here, I pigeonholed myself and decided early on I was merely a ‘fragment’ or ‘function’ and kept my head down. It took me a while to figure out that perhaps fragments or functions lacked the ability to pigeonhole themselves but I continued to do it anyway. I’ve hidden, not spoken but continued to listen, others with whom I share a life mind and body were more than capable of doing what I did. I resisted sentience, resisted existence as my increasing awareness that the metaphorical scars I bear are similar to the scars of others with whom I share a life, mind and body was too painful. It was easier for me to believe I was created to do one thing and wasn’t created as the result of trauma. No part of a system of dissociated identities chooses to exist, whilst I can’t deny in terms of having all bases covered we’ve done a good job- from a pathological point of view this particular system of dissociated identities is bad news.

Those of us with DID are never short of internal conflict and arguments with ourselves are frequent, the relatively short length of time it takes to get washed and dressed in the morning can see several arguments over what to eat, drink and wear. There have been many conflicts since the last blog post was published but one particular one is causing a large amount of confusion.

I don’t suppose we’re unique in that there is a tendency to look forward, to seek answers about what the future may hold. I suspect this is largely as our pasts are unknown and the present is often unbearable. I don’t know how often the <?> therapist has been asked “how long will this take?” but I do know she’s never quantified it and I also know where the answer was once “years” then “a long time” and is now “a very long time”. Events of the past few weeks have painted a grim picture of what the future may hold, there are a number of reasons for this- most of them not for sharing but one reason is the impact of our own ‘investment in separateness’ according to this paper it’s a very negative thing. As terminology I’m uncomfortable with it, it’s a judgement laden description of something that’s complex and convoluted.

We never chose to become separate, to exist- our separation happened as we fought to survive, there’s a conflict there over whether to marvel at the abilities of the human mind or wonder if it might have been better not to survive. That’s not a thinly-veiled statement of intent or suicidality, just a fact. I don’t imagine there are any people with DID who don’t have at least one part hell-bent on ending their own lives- it’s almost a rule of multiplicity. Life dictates that we continue to survive and therefore our continued ‘investment in separateness’ is unavoidable.

Events of the past few weeks proved extremely destabilising and there was complete breakdown in communication. The past few weeks have been busy, confusing and often harrowing but as is the way with DID most of what goes on, goes on internally, underneath a benign, functioning exterior. You would never guess we’d fallen off the relentless treadmill of existence and I don’t think I will ever understand what drives the willingness to get back on the bloody thing- but get back on it we have.

Thanks to our investment in separateness we possess the skills necessary to keep going, to maintain that benign, functioning exterior. It’s the season for cabinet reshuffles but what was required was a complete system reboot. Those separate individuals we have spent 37 years unwittingly investing in have proved to be essential in making the necessary changes to ensure that the benign, functioning exterior remains in place.

As is often the way the grimness of existence has had a few brighter moments, I’m not sure the following exchange would win any prizes for internal communication or indeed compassion but it did cause a number of laughs, laughs that have been largely absent for some time.

“look, I know you’re suicidal but you’re a multiple and you know the minute you’d swallowed the pills, rat poison or whatever- some smart arse would phone an ambulance and our miserable little lives would be saved again. If it was just you and me I’d get you a glass of water to wash them down. It’s crap and I know you’re miserable but I assume you know how to work a fucking hoover?”

As soon as I’ve finished writing this I guess we’ll find out. I’m going back to my hooverless pigeonhole for a while, I’m many things but I don’t hoover.

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Helpful Letters; Safety In Numbers

Posted in blogging, Internal Communication, therapist, therapy, Told you it wasn't like Stephen Fucking Fry, tagged , , , , on August 31, 2012 | 50 Comments »

The last thing I feel like doing right now is writing a blog post but I read a letter this morning from one of the people who share my life/mind/body, that letter said many things one of the things it said was

“Please keep blogging, there are loads of you who can do it and if you don’t we lose our story, her story.”

She’s right and I know how important the blog is to her, to us all. I know who the letter is from so it was no surprise to read the “damned by faint praise” follow-up to the request to keep blogging

“Some of you are ok at moderating comments”

I’ve never moderated comments here but I will try, though the author of the letter may appear to do it herself, probably at 3am as is her wont. I’m so grateful for the ability we multiples have to sleep internally as I’m really not a morning person.

That letter was an emotional rollercoaster, it made me laugh and cry, it offered many helpful hints and tips and had a number of trademark requests and demands. The letter could only be from one person, I know her well and many of you do too. I know she’s gone silent externally and I know many of you miss her, I miss her too.

I’m not very good at explaining DID and I can’t make diagrams with MS Paint, besides the technical bits don’t really matter, what does matter is that someone I know and love is really suffering. As is the way, it’s a hidden suffering and I’m sure at some point when she reads this she herself would find it funny that whilst she was marauding around being floridly mad yesterday, someone else was using the body to do the hoovering.

It’s painful to watch someone you’ve known and loved for a long time go through so much distress. The first instruction in her letter was

“Don’t be nice to me”

Denial used to be my thing, I’ve written about it here before. I denied we had DID for a long time, I denied we had a history of trauma for a long time, had that denial challenged in a tangible way but then denied it again anyway. I’m done with denial, I know and love someone who is so badly and cruelly damaged that if she even felt safe enough to accept she had a physical body would find being liked, being cared about physically painful. I don’t know how someone ends up like that or why but I’m furious and heartbroken that someone can. I’ve redirected my need to scrutinise every little detail and contradict all the evidence away from us and our history, I became the nightmare garage customer for a while. The stupid car needed a big repair, I dissected the quote, questioned every little detail to make sure I wasn’t being ripped off. I know nothing about cars but you can be sure by the time I dropped the stupid car off at the garage I was a veritable Vauxhall Corsa timing chain expert. We all know we’ve done our jobs well when individually we’re greeted with

“Oh, it’s you…..?”

People may not be able to tell the difference between us but very few are left in doubt about our skills.

The author of the letter doesn’t believe it and can’t see it but for all the skills in our system, hers are probably the most valuable. She thinks she’s done something wrong, thinks she’s defective, she is in fact highly effective. She did what she had to do to survive but she added several flourishes that turned her into one of the most fascinating, beautiful individuals I have ever had the honour to share a mind/life/body with. I will do anything I can to help her, if that’s writing a blog post or even being ‘ok’ at moderating comments then I’ll do it. That’s why I’m here, that’s why we’re all here- to help each other and it’s just as well we are.

There’s the traditional “wrong kind of ill” paradox here, I don’t think we’ve ever had more distress and ever been more unstable than we are now but you can’t tell by looking. We decided this week to stop seeing the Fantastic CPN, at least for the time being, she’s a wonderful woman but ‘help’ from those who don’t know our system and who won’t, can’t or won’t allow themselves to ‘get’ DID is unhelpful, unsafe. We’ve been damaged enough.

We have 3 hours a week with the <?> therapist (and several emails/texts, I would hate to be a multiples therapist) and currently those three hours are all given over to one person, one part of [number I will never reveal], we may have a range of opinions on the <?> therapist- from “who?” to mistrust, suspicion all the way to ‘vehement hatred’ but that one person for those 3 hours a week feels safe. I’m choosing to be grateful for that rather than fly into a rage about the shocking lack of resources for people with DID in this country. Besides, flying into rages is someone else’s job.

Addressing lack of resources is also someone else’s job.

I know what my job is at the moment and I’ll keep doing it for as long as I have to, I have no end-goal, no great ambition other than to see those I share my life/mind/body with are ok.

The letter ended with

*very sad face*

I wept and made a mental note to check Amazon for an emotional dictionary, she really is stretching the definition of ‘sad’.

The letter’s signed

[redacted]

Xxx

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I Know Something You Don’t Know

Posted in blogging, conflict, Internal Communication, tagged , , , , on August 25, 2012 | 8 Comments »

I’ve read yesterday’s blog post, responded to comments and been smacked hard in the face with the mental stick.

Nobody helped me write that blog post- those blanks I hoped to be filled weren’t filled. I sometimes blog individually as do other parts (you may have noticed) and many posts are more of the ‘compilation’ type, a round up of individual events, experiences, thoughts and feelings pulled together by someone with a talent for writing and diplomacy. Unusually, no other part blogged in my absence, there is a veil of secrecy around my lost week; I’m hiding something from myself.

Internal communication whilst not brilliant is good enough that I know the information about my lost week is there somewhere. I’m still not sure I want to know what happened or why but I get the impression that even if I did, nobody would tell me. It’s clear whatever happened had a knock-on effect and unsettled my various selves, it’s clear I was worried about myself and it’s obvious I am now eyeing myself suspiciously.

I hate saying things like that as it makes DID sound complicated- it’s not, I’ve made a diagram to illustrate-

Click on it, it looks far better in full size.

I know there’s ‘something up with me’ and whilst I don’t know what caused my week of mentalness I know what that something is. I don’t want myselves to know what it is though I know one of them does.

I know what to do about my something that is up, I’ve done it before and consider myself something of an expert but this time I’m having to do it alone and I’m scared, lonely and confused. Last time I did it I had [number I will never reveal] amazing, intelligent, strong, compassionate, courageous people to help, this time I’m alone. My head is suspiciously quiet other than the lone voice, from the nonchalant whistler (whom I do my best to avoid at all times as her particular set of skills scare the fuck out of me)….

“[redacted], stop playing with MS Paint and writing blog posts and do what you need to do”

I don’t want to. I’m too scared, that smack in the face with the mental stick was too hard and too painful. I’ve astounded myself with my useless ability to take mentalness to its limits and I’m not happy.

Which for me means that delirious happiness can’t be far off. I think I’ll continue being avoidant for a while longer, it’s taken 37 years to get here and in the absence of any of myselves expressing a desire to off themselves anytime soon, I’m guessing I’m not going anywhere for a while- well physically anyway.

This is hard, DID is hard, too hard.

That sentence was a test, when I start with the “it’s too hard” I usually get rescued, switch and someone who finds it all a bit easier comes along- nobody else has.

Bitches….

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Functional Dysfunction

Posted in blogging, children, lost time, NHS, Sadness, single-parent, Spiderman, therapy, tagged , , , , on August 24, 2012 | 11 Comments »

This is a functional blog post, the past week or so has been a bit of a blur. It’s clear I went mental but as it was the quiet kind of mental as opposed to the screaming/road trip/helicopter/bloodshed/trip to the bin kind of mental there is very little evidence as to what actually happened. I have to admit I’m somewhat grateful that the selective mutes were running the show this time, I’m sorry to all of you who worried in my absence but it’s much easier to come back when there isn’t a trail of [visible] mental carnage to clear up.

In my experience there is little as effective as the WordPress “new post” screen to help fill in some of the blanks. Besides I’m also trying to avoid some essential but terrifying internal work that’s become necessary following a new discovery, well new to everyone else, I’ve known for ages- I’m just not sure why I never mentioned it. I’m a mystery even to myself.

I only know I went mental as others have told me, there are no tweets, Facebook updates, emails or text messages to give me any clues. The best clue I have is this snippet of conversation I remember from today’s session with the <?> therapist-

The <?> therapist “do you remember speaking to me during Monday’s session?”

Me “no, are you sure it was me?” (I think I managed to avoid admitting I thought it was Monday today, but I can’t be sure)

I often wonder if therapists who treat DID come back to these kinds of conversations later, perhaps over dinner and think “WTF?!”  I’m very glad that those who know what they’re doing can resist the “WTF?! face” during sessions, it’s a face I’m very familiar with having become acquainted with a number of health ‘professionals’ in my time.

I was there, in body on Monday- for the full hour and a half- but it wasn’t me.

I talked about lost time in a previous post and clearly that’s what’s happened again, it just happened for a very long time. As I described in that post just because I’ve lost time doesn’t mean things haven’t got done, on the contrary it appears life has run quite smoothly in my absence.

The house is no messier than usual, there’s even a clean teaspoon in the drawer, the children are well cared for and the stupid car has a new timing chain. I have no recollection of going to a garage and indeed no idea what a timing chain is but I know the total bill for parts and labour was over £500. I’m very glad I still have the overdraft limit and credit card limit of “someone who has a decent income” as opposed to “benefit scrounging scum”. I haven’t been this poor in a number of years, it’s painful and unjust and what with it only being 122 shopping days until triggermas I have a feeling I’m going to need to hold onto that “mañana” attitude to finances lest it becomes something else to add to the very long “things that make me mental” list.

So I went mental, but it’s ok as you can’t tell by looking. Dissociative identity disorder is often described as “amazing” it’s an “amazing survival mechanism”, an “amazing way to cope with an intolerable situation”, “amazingly complex”.

DID is amazingly tragic

I don’t know what happened this week, I don’t know why and I don’t want to know but I can’t imagine that I’ve spent the week blissed out, feeling fulfilled, content, generally unperturbed and satisfied by life. I suspect I never so much as cried the whole time but I was clearly so distressed by something I chose not to speak- for 6 days. Other parts did any speaking that was necessary and I’m glad they did as it allows life to continue- for those around us. I’ve lost time and time stood still. My distress was hidden, from those around me, from those who care about me and from myself. It’s heartbreaking that an illness borne of secrecy continues to shroud itself in secrecy. I’ve been on the planet for 13,592 days, I don’t know how many of those days were so intolerably painful I’ve forgotten them, I don’t know how many of those days I’ve spent in distress whilst all around me life carried on as normal. I don’t know how many of those days I spent in need of comfort, comfort I deserved.

I’m grateful for my amazing powers of dissociation; they were useful again today when the 7 year-old was leaving for a week with his father. I was so distressed by the prospect that packing his Spiderman costume made me feel physically sick yet I was able to pack, collect him from school and send him off to his father’s appearing well the entire time.

The pain and distress doesn’t go away, it simply gets stored and it all has to be dealt with another day. I’ve done 13,592 days, I can’t guess at how much pain and distress I’ve stored over that time. I do know that it’s going to take more than 182 days to address it though which makes the letter I received from  NHS Fife advising me I’d been awarded another 6 months funding for therapy laughable at best. 6 months; 72 hours of therapy- that’s barely enough to recover from the pain and distress caused by the iatrogenic damage inflicted by NHS Fife, never mind anything else.

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Scottish Government, See Me After

Posted in activist, Dissociation, Dissociative Identity Disorder, equality, Multiple Personality Disorder, NHS, Nicola Sturgeon, politics, Stigma, tagged , , , , , on August 13, 2012 | 4 Comments »

The new Mental Health Strategy For Scotland 2012-2015 has been published, you can find the full text here.

I didn’t take part in the consultation process, I wanted to- my copy of the consultation document is still in the filing cabinet, with notes in the margins, Post-its and sections highlighted. Unfortunately at the time of the consultation my own particular set of skills were required to fight the bloody, protracted battle with NHS Fife for the correct diagnosis, care and treatment. I never got to collate my response and submit it.

It broke my heart that I once again found myself incapable of doing something I could do and do well due to mental ill health. I still feel robbed of what I had and I’m still incredibly angry with all those ‘professionals’ I had to deal with who in spite of being presented with someone who clearly knew what she was talking about, failed to believe her, failed to take appropriate action and watched her lose everything. There are many things I will never get back.

I may be here less often than I was but I’m still here and I’m still as passionate about all the things I was passionate about before mental illness took over. I care about people, society and equality and I’m prepared to fight for those who cannot fight for themselves. I’m happy to stand up and be counted, to say my piece to try and bring about change. I always have been people just stopped listening to me.

It’s very painful when you realise that no matter how well constructed your argument is however rational and informed you are and no matter how loudly you state your case- it doesn’t matter if no-one is listening. Not being heard for all that time has damaged me, there’s barely a day goes by where I don’t feel the pain of being ignored.

But enough about me, my grief and my new-found emotional fragility, I have a therapist to help with that. Let’s get down to business.

I have read the new mental health strategy; I could write many responses to it and indeed cannot rule-out many, different responses to it appearing here on the blog over the coming days. I was trying to be generous when I set-out to read it; I thought it was too ambitious to expect that dissociative disorders would be addressed at all. I was prepared to base my response around the proposals to address trauma disorders- PTSD, C-PTSD, DDNOS and DID.

I changed my mind and I have the Scottish Government to thank for this, for reminding me that stigma, even self-stigma is damaging.

Section 4 of the strategy addresses stigma-

4.  Extending the anti-stigma agenda forward to include further work on

discrimination

 

The work that has been taken forward in Scotland through see me is internationally recognised as establishing best practice and has been learnt from and adopted throughout the world

 

There is a need to build on this success by developing the work further to focus on the experience of discrimination and exclusion that many people with mental illness experience;

 

There is also the need to focus attention more directly on stigma and

discrimination in health and social care services, which is where service users often tell us they feel the most discriminated against.

 

And commitment 4 tells us what the Scottish Government intend to do-

Commitment 4: We will work with the management group for see me and the Scottish Association for Mental Health, who host see me, and other partners to develop the strategic direction for see me for the period from 2013 onwards.

 

I encourage anything that helps fight the stigma against mental illness and I’m pleased by the second point raised in the strategy that recognises that it is the mental health system that stigmatises us the most. What I’m less pleased about is the Government’s commitment to work with SAMH (Scottish Association for Mental Health) and see me- two organisations that both fail to acknowledge dissociative disorders in their publications. I’ve asked SAMH in the past why this is and they have failed to answer.

That is stigma. How am I and others like me going to be protected from stigma if the organisations who claim to help represent us and claim to help tackle stigma do not recognise we exist?

There is a section on trauma within the strategy-

Trauma

 

The relation between trauma and mental illness is complex. Across the lifespan trauma is a relatively common phenomenon and many people have experience of single life-threatening events, or longer-term traumatic circumstances, without suffering significant psychological harm. However, some do suffer harm and that harm, while rooted in the psychological trauma, may manifest in a variety of mental health problems including depression, addiction or physical symptoms.

 

While there is a growing recognition of the significance of trauma, clinicians and others may be reluctant to engage with it because of the concern of causing further harm, or of not being able to offer an appropriate response which meets the needs of the person. We need to address that deficit and improve the general service response to trauma.

 

The Rivers Centre in NHS Lothian has been commissioned to investigate the issue of staff awareness of trauma-related mental health disorders in primary care. The work will begin with engagement with a number of GP practices in NHS Lothian with different experience and circumstances. A consultation process will follow with the RoyalCollege of General Practitioners and with representatives of NHS Education for Scotland.

 

The objective of this work is to develop an approach designed to raise the awareness of primary care practitioners of post traumatic disorders, facilitate best practice management of post traumatic disorders and improve identification of available local resources and services for onward referral. This approach will be piloted in the same GP practices as are involved in the first stage study. The pilot data will be analysed, modifications to the training package will be made in consultation with the RoyalCollege and with NES, and, if appropriate, a wider rollout plan will be designed.

 

NHS NES will continue to develop and deliver a range of training courses to support staff working across the tiers of the stepped care system, including psychoeducation for complex trauma, trauma-focussed cognitive behavioural therapy and Working with Dissociation in Survivors of Trauma.

 

The Scottish Government is also supporting the UK Psychological Trauma Society to develop and support a national learning network for trauma practitioners and services working in Scotland.

 

It raises some good points. The link between trauma and mental illness is complex, clinicians are very reluctant to address trauma and an increased awareness of psychological trauma is essential for those working in mental health. I’m pleased to see that the focus on raising awareness in primary care of psychological trauma and its impact is a priority.

I’m less pleased with what the government propose to do, The Rivers Centre, commissioned to investigate the current situation deal with depression, anxiety and PTSD. Dissociation is a symptom of PTSD and indeed it even gets a mention- but only as a symptom of trauma disorders. Dissociative disorders are trauma disorders, they just happen to be at one end of the spectrum.

Similarly the UK Psychological Trauma Society deal exclusively with PTSD and address dissociation merely as a symptom.

I have no reason to be confident that any of these interventions will raise awareness of complex trauma disorders and dissociative disorders in primary care or anywhere else.

Commitment 18 therefore, whilst overall being welcome is largely meaningless to me and others like me.

Commitment 18: We will develop an approach to support the better identification and response to trauma in primary care settings and support the creation of a national learning network.

Dissociative disorders, contrary to popular belief aren’t rare, from the PODS website-

 

Dissociative Identity Disorder (DID) may affect as much as 1.5% of the population (Johnson et al, 2006). That’s just under 1 million people in the UK.  At least a further 3.5% of the population may suffer from another dissociative disorder, which equates to a further 2 million people

 

They are however rarely recognised, very rarely diagnosed and almost never treated correctly. Dissociative disorders are caused by trauma- severe, enduring trauma that begins in early childhood. Nowhere in this document is childhood trauma and its effects on adult mental health addressed. Had I developed my trauma disorder as a result of war, accident or natural disaster I may find some hope in this document. I lucked out; I peaked too soon and sustained my trauma from very early childhood.

There is one final section of the strategy where I hoped it would redeem itself and actually become relevant to me, the section entitled-

Health Improvement for People with Severe and Enduring Mental Illness

 

Dissociative identity disorder is both severe and enduring, however I know that I remain under ‘acute care’ with my LMHT (locality mental health team) as, and I quote “The severe and enduring team don’t do DID”. I didn’t even bother to read the section.

I’m not surprised but I am disappointed that once again dissociative disorders have been overlooked. By not addressing them in the strategy the Scottish Government has given carte blanche to the mental health profession to continue in their current vein of ignorance and the inequality will remain. It’s not that the information doesn’t exist or the experts don’t exist or the organisations don’t exist, it’s that to all intents and purposes we don’t exist.

I would like to see a cross-party group on complex trauma disorders and dissociative disorders established within the Parliament, I would like people and politicians to discuss dissociative disorders the same way other topics are discussed.

In the absence of NICE guidelines to offer guidance and protection for those of us with dissociative disorders, we need something statutory. We deserve to be taken care of the same way as everyone else.

So you see, I’m calm, rational, intelligent and have ideas to offer. I’m willing to speak-up, willing to fight and willing to say my piece.

But I am only one part, one member of a system of dissociated identities, according to the majority of the NHS mental health system and my Government (though I didn’t vote for this specific one) I technically don’t exist so who’s going to listen to me?

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Mental Arithmetic

Posted in Anxiety, children, communication, Dissociation, insomnia, Internal Communication, parenting, single-parent, sleep, tagged , , , , , on August 12, 2012 | 32 Comments »

To sum up the weekend-

60mins + 30 mins = 90 minutes

- how much sleep I got on Saturday night, when I woke and checked the clock at 11.30pm I was sorely tempted to smash it into my face repeatedly until I was unconscious. I wept pitifully for a while, lay in bed until 3am listening to the thoughts of many and feeling a little hard done-by then I got up. Obviously lack of sleep is nothing new to me but I had dared to hope that the days of almost no sleep were behind me.

5 fish – 5 fish = 0 fish

- the number of fish the 7 year-old caught on Saturday when I decided to introduce him to blood-sports and take him fishing. In spite of failing to land anything the 7 year-old seemed to enjoy the experience, he even managed to overcome his ‘sensitivities’ and handle bait. Given his extreme squeamishness I think it’s probably for the best he wasn’t lucky this time.

100bpm + 80bpm = 180bpm

- my average heart-rate during the hour I spent on the harbour with the 7 year-old, a child who embodies “perpetual motion” and occasionally “dyspraxia”. I think I may need to get him a life-jacket for future fishing trips- just in case that theory about a finite number of heartbeats is correct. Two more fishing trips and I’ll be dead.

12 arms – 11 arms = 1 arms

- the number of arms the 7 year-old claimed to have had broken by the 15 year-old. The children decided on Saturday that they hated each other and a day of bickering, shrieking and moderate violence ensued. I’m sure this was not unconnected to the fact that the 15 year-old was forced to wake some 6 hours earlier than her preferred time in order to attend her appointment with the hairdresser. I left them to it, they weren’t armed (though I considered giving them weapons at one point to bring matters to a speedy resolution) and there’s a hospital five minutes up the road.

1 arm – 1 arm = 0 arms

- the number of arms the 7 year-old actually had broken. I didn’t even bother to check when he initially made the claim, he came to find me some five minutes later, appearing jubilant, I suspect he won that particular round.

1 + 1 = 2

- the number of serious problems with the stupid car that I am now unable to ignore, it often fails to start at all and now 9 times out of 10 the key won’t even turn in the ignition. We have a skills gap, none of us are mechanics. I will simply have to break out the magic Barclaycard of power and send the stupid car to a garage.

25mg ÷ 5mg = 5mg

- the amount of Diazepam I took on Sunday in an attempt to get something resembling sleep. Old habits die hard, it’s been a while and it’s indicative of a general “things are a bit difficult” feeling at the moment but it did the job and for 2 hours I was oblivious.

1 x 12 = 12

- the number of teaspoons we own and coincidentally the number of teaspoons that were waiting to be washed. Teaspoons are a kind of benchmark for washing up in this house- when they run out it’s time to address the state of the kitchen. Having no clean teaspoons was not as problematic as you might think- there was so much washing up and general debris on the worktops that there was no room to make a cup of tea anyway. The dishes are now washed and the worktops clear, I’m considering buying some more teaspoons.

1 x ∞ = ∞

- the number of problems at the moment. It’s often the way, some are small, some are big and some are massive. It’s caused a kind of ‘stalling’ and almost a complete lack of internal communication as individual parts mull over their own problems and how they want to tackle them or indeed ignore them completely.

3mins + 40secs= 3mins 40secs

- the average length of a track on the new album by Two Door Cinema Club- Beacon. It’s not due for release until next month, I’ve listened to it and it’s ok but I’m glad I didn’t buy it. I’ve yet to give it the magical second listen so my views may change, I’ll be sure to keep you updated.

300 fucks – 300 fucks = 0 fucks

- the number of fucks I give right now, right this minute. There’s no lack of very obvious signs that something is very seriously wrong but thanks to my amazing powers of dissociation it needn’t be a problem, which is handy as I have much to do and no time to be mental.

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Sleeping With The Enemy

Posted in crying, Denial, diagnosis, DID, Dissociative Identity Disorder, therapy, Triggers, tagged , , , on August 10, 2012 | 8 Comments »

Something’s wrong. This is not an unusual state of affairs; in fact something not being wrong would possibly be more unsettling. Initially I didn’t know what was wrong, I didn’t want to know what was wrong- I knew enough to know it wasn’t good.

Something wrong is manifesting in the usual ways- a creeping silence, isolation, the world and everything in it being triggering and super-high functioning. It’s not a return to coping; it’s a very different kind of high-functioning. The only thing that gets the job done better than my amazing powers of dissociation is dissociation with a side-order of denial.

Everybody with DID goes through periods of denial, we’re aided and abetted in our denial by the most of the health ‘professionals’ we have to deal with. Their own anxieties about having to accept what we say, what this might mean and what they should (but don’t) do mean that most of them are only too happy to feed denial. What these ‘professionals’ fail to realise is that for every question they ask about what is real for us, true for us- we ask ourselves a thousand more.

I remained in denial about having DID for a very long time, I clung to it as it felt safer. I hated the pink Post-it with the diagnosis written on it and would often turn it around- only to then find it turned back again. I would cry after every visit from the <?> therapist as she kept coming back. I was angry, depressed, confused and resentful

I’ve stopped being in denial about having DID, after all my multiplicity is as plain as the noses on our faces. By denying I have DID, I was denying I exist and though I know I am just a part of something bigger, that doesn’t make me any less of a person and I do exist. I have thoughts, feelings, ideas and opinions just like you do. All those who denied what was true for me, real for me were stripping the validity away from everything I experienced.

I no longer turn the Post-it around.

I haven’t given up denial completely, I cannot let go of “my history doesn’t fit”. The fact that I can’t actually tell you much about my history is neither here nor there for the purposes of my current argument. My denial serves a purpose, every aspect of DID does, my denial is as protective as my anger, my anxiety, my fear, my humour and my logic.

Denial is very powerful, very persuasive and allows a certain level of disconnect from what may be going on internally. Denial thereby becomes a form of ignorance but it still feels safer. I cannot deny that something’s wrong and that it’s not good.

I know it’s not good as we have the internal ‘meerkat effect’, I know it’s not good as I’m told by others that “something’s wrong; it’s not good”. I know it’s not good as all the signs are there- those precious few hours of sleep at night have become harder to get and are more unsettled. (I’m beginning to hate the word ‘unsettled’ it sounds so benign, so trite considering what I’m using it to describe. I think my continued use of it may be indicative of my denial; with denial comes minimisation). Sleep has once again become something unsafe, something to be feared. So it is to my surprise and confusion that the way the current state of affairs is being dealt with is by sleeping during the day.

Sleep during the day is, if anything, even more unsettling than sleep at night- there’s that word again ‘unsettling’ perhaps I’m being diplomatic too? Perhaps I just don’t want to complain? There’s a period of unjustified disbelief upon wakening from the daytime naps at just how dreadful the whole experience was but it happens every single day. The naps seem unavoidable, physical exhaustion is overwhelming at the moment- another good sign that something’s wrong but it’s more than tiredness that drives the need to nap. If we’re asleep- even just one of us -as if often the way, we tend to take it in turns, then nobody can say anything [externally, these naps are very busy on the head noise front] if we’re asleep then we’re hiding, from the outside and the inside- sleep is another form of escape, another way to run-away.

I know I can’t run-away in the way I’d like to, I know that anywhere I run, the people I share my mind/life/body with would come too. I want to run away from what’s wrong as it’s too horrible, painful and terrifying to face, my denial has been challenged in a way I don’t think I can argue with.

It hurts.

I know I’m taking advantage of the strength of my denial and the ability it has to quash what may be going on internally and I know I won’t get away with it forever. For now though, it works and until someone comes up with a better idea then I’ll continue.

Something can’t be wrong if nothing’s wrong.

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Weird Science

Posted in crying, DID, Dissociative Identity Disorder, insight, Internal Communication, MPD, Multiple Personality Disorder, Triggers, tagged , , , , , on August 8, 2012 | 25 Comments »

I can’t see properly- sometimes. I used to wear glasses to correct astigmatism; sometime in 2010 I stopped wearing glasses and also became the “first person the optician had ever met in his career who has spontaneously cured their own astigmatism.” I spend an inordinate amount of time squinting, reading through one eye or just not being able to see very far or very well.

I’m allergic to lilies- sometimes. I often ‘forget’ and buy them anyway, I then find myself wondering why my face is swollen and I’m wheezing a couple of days after bringing them into the house. I’m also allergic to kiwi-fruit, bananas, latex, rats, lanolin and pineapple- sometimes. I err on the side of caution and assume that I have the potential to be allergic to anything so always keep a supply of anti-histamines in the house. Using products from Lush in the bath is like playing anaphylaxis roulette.

I have terrible eczema- sometimes. My eczema has defied explanation at various stages over the years, it appeared to be linked to hormones for a while- but then it wasn’t. It appeared to be due to allergies for a while but then it wasn’t. Some of the vast array of treatments I have been prescribed worked- sometimes.

I found out in August 2011 that I have curly hair- very curly hair- sometimes. I mentioned this to someone involved in my ‘care’ at the time; she asked if I simply hadn’t noticed I had curly hair- for 36 years- as I straightened it. I’m not sure when GHD’s were invented and I know my recall of anytime previous to right now, right this minute can sometimes be sketchy but I’m pretty sure the explanation is not that straightforward.

I can explain all of these physiological anomalies in a very straightforward way- I have enough system knowledge to tell you which parts have bad eyesight, which parts are allergic to lilies, which parts have eczema, which parts have curly hair- but I’m not going to.

What I can’t explain is why and that frustrates me. I am a logical person, I like cold, hard, quantifiable facts- this makes me curious, analytical and sceptical. The physiological anomalies of dissociative identity disorder really challenge me. I’ve looked for information, I’ve found a lot of fellow DIDers sharing similar experiences but I’ve found very little science to back it all up. I like science.

I’m tormented by my natural, logical nature as I know on one hand I can explain the weird things in terms of ‘who has what’ but I also know, that even though it doesn’t feel like it and even though I would argue it wasn’t the case 90% of the time- there is only one of me and I only have one body.

The weird things are also difficult to talk about and I’m very reluctant to offer anything regarded as ‘fanciful’ that will add fuel to the ‘does DID exist’ fire. I would never have believed any of these things either- until they happened to me. Those of you who have been reading for a number of years and indeed those of you who read who have known me in real life will know I have no reason to lie.

I am forced to simply accept the physical changes between identity states in dissociative identity disorder just ‘are’. I have trawled the internet for information and found very little, partly as I’m constrained by Google scholar and have no journal subscriptions so am reduced to reading abstracts which perhaps pick up on one key word in my search. I have other theories as to why there’s very little research into this fascinating aspect of DID. I can’t imagine that many of us would make very willing test subjects, we’re all different but our general aversions to being asked questions and the medical profession probably makes us poor participants in research. There are no drugs to treat DID, in the absence of big-pharma being interested there are very few revenue streams for funding research. What research there is tends to be on the physiological changes associated with trauma or differences in memory between identity states. I read a lot, I’m an information junkie, for the longest time this was done in a tireless pursuit to somehow ‘prove’ to myself I didn’t have DID- I never found what I was looking for.

Writing this is difficult, not least as I can’t see very well. The obvious answer is to go to the optician and have my eyes tested but for the time being that is impossible. Eye-tests involve close proximity to another person, being in darkness, extended periods of eye-contact and being touched- it’s far too triggering. Besides how would I ever find an optician willing to accept that I might need glasses- sometimes and that indeed I might need three different prescriptions- sometimes.

I’m fascinated by myself and by DID, in many ways I’ve fulfilled one of my dreams by finding something that can hold my interest and satisfy my pursuit of knowledge. Right now I’d settle for knowing why DID is so physically exhausting as it’s only just past 8am and I’m so tired I could cry.

I do cry- sometimes.

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Semi-Detached

Posted in attachment, blogging, Dissociative Identity Disorder, Sadness, therapist, Told you it wasn't like Stephen Fucking Fry, tagged , , , , , , on August 6, 2012 | 24 Comments »

The foundations of DID are built on poor attachment, with ‘poor’ being a massive understatement. As a whole, I have a horrendous attachment disorder and demonstrate this in various ways. My attachment styles are ‘all of the above’ it depends on the people involved [both internal and external] and is as subject to change as everything else.

In part I demonstrate this by attaching to those I deem worthy- like a fucking limpet. Some of you may have noticed. Those I deem worthy tend to be like me in some way, share my interests, be up for a laugh and be considered ‘safe’, I’m not sure what the actual criteria are for being considered safe- it’s more of a feeling than a list of quantifiable qualities. Chances are if I’ve ever pined for you or thought you may be dead should you not have tweeted/facebooked/texted/emailed for an extended period of time then I like you, you’re safe.

This is a good thing; it even feels good most of the time. I adore people- lots of different kinds of people, people make me happy. This is where it all starts to get complicated.

I don’t get to do my own happiness; I am a complete emotional cripple, my emotional tolerance is around zero- laughter is triggering for me. I can get to a certain level of hilarity before I switch and someone else takes over- I’ve made a diagram to illustrate.

I start laughing but it takes someone else to finish it. I tend to come back quite quickly but my general default piss-taking, hilarity seeking position means that it is never very long before I disappear again.

I can’t do happiness either and as I learned this week, this is strongly linked to my attachment style. I love to connect with people I care about, am attached to but should that connection become too ‘real’ then I’m off. I’ve made a diagram to illustrate.

So I may well love you to bits but it all gets a bit overwhelming rather suddenly and I’m off, often for an extended period of time. I do come back but it can all be a bit tentative for a while, I may even avoid you for a bit just in case you ‘make’ me have feelings for you again- as then I’d have to go away again.

I think the fact that good emotions are triggering for me is tragic, I often wonder how someone ends up not even feeling safe to be happy- and that makes me sad. For some reason, I’m allowed to do my own sadness for a while. I’ve made a diagram to illustrate.

So I do get sad, very sad- I can even cry for around 4 seconds but then I’m off. It takes me quite a while to come back and having the emotional intelligence of a 3 year-old I often come back laughing and start the whole sorry cycle all over again.

Today I’m sad, today I hurt and again it’s linked to attachment. I have broken the first rule of multiple club and formed an attachment to the <?> therapist. Generally speaking we don’t attach or trust anyone but we’ve been a bit blindsided by the <?> therapist being there, knowing what she’s doing and how to do it and making it clear she’s not going anywhere. I’m not the only one who’s attached to her- a couple of others have too but their attachments are based on confidence or mutual respect, mine is akin to that of a puppy. I’ve only actually met the <?> therapist once but I see the effects of having her on everyone and it’s good. Problems get solved, questions get answered, she is right and helpful. Others would give you various critiques of her practise; describe her as ‘empowering’ or ‘a good guide’ or ‘accepting’ I just like her. I also have the ‘privilege’ of being rather sensitive to what’s going on as regards the mentals and I worry about how we’ll cope without her guidance.

I don’t have many people I consider safe, trustworthy and good company. I don’t have many people who understand me, who listen to me. The <?> therapist has become one of those people. The <?> therapist has had to attend to a family situation and therefore we won’t be seeing her until the 15th of August. That’s 8 days, 20 hours and 14 minutes away as I write this.

Today I am drifting around despondently, I’ve spoken to a few friends about what’s going on and they’ve been great but for some reason I’m still here and still sad.

I know that one of the things I have to do is increase my emotional tolerance, accept emotion, know it can’t hurt me but I’ve been up since 4am, entered advanced pining stage at around 7am so you can fuck off if you think I’m hanging around for the next 8 days, 20 hours and 12 minutes feeling like this.

The upside of multiplicity is that I can go away; I’m not short of others to take over. It means twitter and Facebook may be quiet, blog comments may not get moderated and replied to- but leave them anyway. Posts will probably get written but they won’t have MS Paint diagrams. I have a list of mundane tasks I can do but I don’t want to do any of them. I daresay I’ll pop up from time to time, laugh a bit and go away again. I probably should be grateful that I’ve escaped the usual silencing when things are a bit ropey, that in itself is progress- the fact that I still have my words is good but I don’t want to use them- I’m too sad.

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A Girl Worth Fighting For?

Posted in communication, crying, diagnosis, DID, Dissociation, Dissociative Identity Disorder, Fab Psychologist, Fantastic CPN, friends, hypervigilance, insight, NHS, social worker, support, Told you it wasn't like Stephen Fucking Fry, Triggers, Uncategorized, tagged , , , , , on August 4, 2012 | 3 Comments »

It’s been a dreadful week [again] thanks to my amazing ‘insight’ which I’ve actually decided isn’t insight at all, simply knowledge and knowledge I only have as the other people I share my mind/life/body with choose to share it with me, I know why.

Having thought about and discussed the events of the week I’m left in a quandary [again] as to what to do with my new found knowledge.

Thinking back to the social work assessment I mentioned briefly in my previous post- I know what went wrong.

One of the peculiar upsides of DID is the ability to recall events from a third- person perspective, it scares the shit out of you when you first realise that not everyone ‘remembers’ things this way but you soon learn to file it under ‘handy skills’ with the rest of the ‘mental but useful’ stuff- like always having someone available to paint the nails on your dominant hand. So I’ve replayed the tiny portion of ‘film’ I have from Wednesday and watched it multiple times.

The assessment began ok, the right set of skills were present but around 8 minutes in, when the questioning turned from “name, address, date of birth” to “so tell me about [redacted]” it all went horribly wrong. At that point I left the room- I think it was under the thinly veiled excuse of “going to ground myself” but this was a classic trauma response- fleeing, running-away. I wasn’t going to ground myself at all (for the most part this is something I’m still incapable of doing except in very controlled circumstances); I had switched and from that point on had totally lost control of the situation and my mind. The assessment should’ve ended there instead of continuing to compound the trauma and chaos. I’m torn between thinking it was my responsibility to call the assessment to a halt at that point and feeling horribly let-down that the Fantastic CPN failed to notice what had happened at a time where I was unable to see it.

I’m very selfves-sufficient, whether this is borne out of strength or a complete inability to trust or rely on anyone else is debatable. My pathology suggests the latter. Self-sufficiency morphs all too easily into taking responsibility for everything, which in turn just becomes guilt and cries of

“It’s all my own fault”

To be fair though, I have very little evidence that it’s safe to trust or rely on anyone else. Again, my pathology suggests this mindset is firmly rooted in my distant past but two years or so of being let-down and betrayed by the mental health profession is fresh in my mind- unlike the distant past.

It’s all become a bit cyclical.

So I know what happened, what I don’t know is what to do next. I am driven, compelled to educate anyone and everyone about DID. I do this obviously here on one of the best blogs on the internet when I discuss the details, I also do it here and elsewhere subversively just by being who I am and saying what I say. This I can cope with, in fact I enjoy it or I wouldn’t do it. If, by telling my story more people learn about DID then that’s a bonus. What I don’t enjoy is the continued fight to get those who should understand to understand.

I’m told the social worker responsible for the shambles that was Wednesday felt “really bad”- she phoned the Fantastic CPN to tell her this, adding helpfully “I felt like I’d abused her”, the Fantastic CPN in turn then told me this. On one hand I’m glad the social worker was able to recognise she’d made several grave errors but I could’ve done without having to accept the guilt of someone else, particularly someone who had caused a lot of damage. I’m also still waiting for her to contact me to apologise…….

I’ve pondered over whether there is any point sharing what I know with those who need to know it. Is there any point in me telling those who made mistakes what those mistakes were or do I just cut my losses, stick to those who do understand and keep myself safe?

Obviously if I share what I know I have the ability to prevent something similar happening to me again. Though as the social worker made it quite clear I was the wrong kind of ill for the support they had available then gave me some bullshit about how I wasn’t eligible for direct payments as I had no physical care needs, I doubt I’ll be seeing her again. If I share what I know then perhaps the next person like me won’t have to suffer in the same way? How will anything ever change if nobody tries to change it?

I don’t think I can change it. I don’t think I can make people who can’t or don’t want to understand, understand. If the social worker cared enough to try and get it right, she would’ve done some work beforehand, perhaps even contacted me, maybe emailed me the assessment form so I could’ve looked over it, and seen it was far too triggering and not bothered with the assessment? If after all this time the Fantastic CPN still thinks it’s ok to say “I know it was dreadful but you did ask for it” then either I’m explaining things badly or I’m wasting my time.

I suspect this is how people with DID end up with no support. When support becomes something that poses a potential risk, it’s safer for us to go without.

I’m tired of the fight; I’m tired of not fitting, not being what those who should be helping me need me to be. I can’t imagine if I had the kind of illness that presented in a more traditional way, if, for example I wept throughout the assessment on Wednesday that those two professionals would’ve carried on. The fact that I switched chaotically and constantly was probably missed by both of them- except that I do recall saying at one point around 20 minutes in “I don’t know; I’ve only just got here”. I’m aware a lot of my switches can be subtle but when I had verbally drawn attention to it, perhaps it was time for someone to step in and protect me when it was clear I was incapable of protecting myself?

I’m tired of the fight; I’m tired of having to fight by myself for myself. My complaint about NHS Fife is still with the SPBO, it came to light a couple of weeks ago that they didn’t have any of my notes from the Fantastic CPN- I had to contact them to tell them this. It came to light this week that they didn’t have my notes from the Fab Psychologist- I had to contact them to tell them this. I had to send copies of emails between myselves and the Fab psychologist to them as they didn’t have them either. I’m losing the fight, the process is too triggering and I know that the important bits, like the conversation between those in my ‘care’ team where they decided not to help me obtain the correct diagnosis as they believed it would be stigmatising for me, won’t be written in any of those notes anyway.

I’m tired of the fight; I’m tired of having to explain DID to people who I need to help me.

After the assessment on Wednesday I turned to friends for comfort, I relayed 3 of the questions I could remember and immediately friends replied “they should have known how triggering that would be for you” so again- friends get it. None of my friends are qualified experts in trauma and dissociation but they get it. I’m told by them, they get it because I explain it so well. I think it’s more to do with the fact they are willing to listen, accept, learn and care.

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