Scattered pieces

Since we posted the previous blog entry, we’ve been very disconnected from everything.  It doesn’t feel like a full dissociative state, but rather very robotic and empty.  It’s a very hard feeling to describe and one we get quite frequently.  It’s possibly a mild form of derealisation – we know what it feels like to be fully derealised, and this isn’t it.

We managed to severely annoy our cat today – we moved the place where we feed her :)  She knows where her food is located, but is currently sitting on the spot where her food used to be and is just staring at us…  If looks could kill we’d be dead and she’d be in a cat shelter…  Thankfully the lack of an opposable thumb means that we survive her disapproval for another day.

Another large part of the reason we’re having trouble tonight is that in the morning we’re having a couple from a local woman’s support network come and assess us for potential inclusion in their services.  It was one of the things that Bob told us about as a way of receiving additional support after-hours – that didn’t revolve around our poor mental health services.  The offer things such as respite care, courses and assistance.  The assessment is to see if they can help us and what we need.  We’re hoping that they can offer something, but it means having two of the team come into our home – something that we’re never too good with.

Better try and go get some sleep…

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So many aspects of our life right now are caught between old and new patterns, things, behaviours etc.  A therapist would probably describe it as a turning point, in that we can now see how damaging the past has been, but not yet healed enough to be able to fully challenge those old of ways of thinking and behaving.

Sometimes we can see glimpses of a healthy reaction to a situation.  Sometimes we’re flipped back into the old patterns and coping mechanisms.  Our reaction to Kriss is probably the most obvious example of this.  If he is not having a good day or is tired, we can sometimes see that it’s something that he has to manage – with our help if needed.  Unfortunately, most of the time we look for what we have done wrong, for him to be playing games with us or to be getting sick of having to deal with us.

The intellectual response is to realise that this is our PTSD and domestic violence patterns kicking in.  Problem is that we still can’t change our behaviour and reactions even though we know the reasons why.  The mixed messages from within make it impossible to decipher the true reason for him not having a good day.  The young parts fall into the only pattern of behaviour they know – “it’s our fault”; the angry ones consider him to “be a typical man that we need to get rid of”; the intellectuals argue about whether he is a good man, or we’re hoping he’s a good man but he’s actually just like the others and we’re fooling ourselves.  It’s exhausting to have this constantly going on.

This sort of thinking can go into every part of our life.  We know that this is often the reason that we can’t sleep – the brain is going too fast for it’s own good.  But the brain is all we know, we have very little awareness of the body – it’s too unreliable…

In the “well fancy that” files, we got the report to ACC from Bob yesterday.  She did consider us to be DID, she mentioned talking to alters and our “fragile personality structure”.  I now think that she was quite worried about that fragility, so as a result tried to rush an integration in an attempt to stop further splits.  If only we’d all been able to talk about it, things might have gone differently with her.  We’ll see what happens when we have an appointment with Carol (new codename for previous therapist).

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This is very much from the random section of my brain…  But last night I had extremely odd dreams about insects and spiders.  I hate insects and spiders.  They move fast and are just “creepy” – yes, that scientific term used by many to describe bugs of various species.

But these were not ordinary bugs.  They were moving jewel encrusted bugs – sort of like the insect world and Cartier colliding.  They were everywhere – in my folded pile of clean washing, in my wardrobe…

What’s odd is that I wasn’t fazed by the jewel encrusted bugs at all.  I just swiped them away and let them fall to the floor.  My usual reaction to bugs is to either “abandon ship” and let the 1st floor deal with them; or to go get the bug spray and empty the can on the poor unsuspecting thing.  Both of these methods usually spell doom for the bug.

It appears as if the jewel encrusted variety were ok to let live as they just picked themselves up after being swiped onto the floor and kept on going.  They did seem to be slower moving – possibly the weight of all the jewels attached to their little bodies.  Considering our financial situation, I’m surprised there wasn’t some desire to pick the bugs up and sell them off :)

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It hasn’t been a good week.  We’ve been doing all sorts of negative things and not getting enough sleep.  In amongst all of this we’ve been lashing out at the people around us who care.  We can see ourselves doing it, but it feels beyond our control to stop it.

At work we’ve apparently been grumpy and short tempered with some people – actually the ones we’ve been short tempered with are the ones who suck all the positive energy from those around them.  So it’s not everyone we’ve been grumpy with.  I have a feeling that this is the emergence of the ones from the 1st floor within our internal house going into a protective mode as we move closer to the anniversary.  They have a tendency to protect those around us that we think need protection – namely our friend who has the brother and husband with cancer.

Kriss however, has been a different story.  The guy says he loves us.  He keeps on being there.  We’re trying very hard to act as if nothing is wrong, but we’re going crazy on the inside.  We don’t know how to tell him that we’re hurting.

This became evident over the weekend.  Kriss usually talks to B, but with the anniversary coming up Sophie is more present.  Sophie is emotional and a teenager.  She doesn’t know how to ask for help when things are bad, so tries to act as if everything is alright and cheery.  Kriss knows us well enough to see that something is up and asks what’s going on.  We’ve always associated asking for help as being needy and unable to cope with life.  So we end up saying that everything is fine.  This goes in a vicious circle with us wanting to reach out for help – Kriss asking us what’s wrong – us eventually saying or doing something that drives Kriss away.

This pattern happened twice over the weekend until yesterday morning when I finally had the courage to say – “we really need someone on our side”.  Those simple words took so much courage and energy to say…  Not only did it show that we were vulnerable, but it showed that we might need someone else.  We were expecting Kriss to reject us for being so needy and such hard work, but his response was a simple “why didn’t you say so earlier?”

Dissociation is such hard work.  It’s hard living as a dissociative and it’s difficult to be around someone who is dissociative.  At times I hate this coping mechanism, at other times I wonder at the brains ability to adapt to the unbearable.

The ex-husband once said that our dissociation was breaking him in half and we were the reason he had made a suicide attempt.  Pretty hard to argue with that.  We’re expecting Kriss to get tired of coping with us soon as well.  We know the best remedy for this is to get a good therapist who can help us move forward.

In the meantime we had a totally pointless conversation with Kriss yesterday night about him being technically challenged and trying to find ways to fix his computer.  It was totally pointless and yet so meaningful.  He sat with us and made us laugh.  We showed that we needed help and he didn’t reject us as weak and pitiful.  He struggles to understand our thinking sometimes, just as we struggle to understand his.

It’s very odd to talk to someone for any length of time who doesn’t play games.

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Today was our last session with Bob.  It went OK.  Our little toughie W came forward to do a majority of the session.  This worked in that she is very definite about what she wants or doesn’t want.  So while the softness of Sophie could be easily swayed, W ensured that this was a last session.

The big problem is that we are now without a therapist… heading into one of the nastiest anniversaries we have.  As we’ve never gone through this particular anniversary before, we’re not really sure how it’s going to affect us. So far, it hasn’t been good.

Bob is concerned that we’re going to have no support during this time.  She really is a good clinical psychologist, she’s highly recommended and we can see why.  The problem is that I’m not sure if she really believed in our diagnosis and tried to force us to quickly move ahead.  A great part of this is because of the way in which ACC fund clinical psychologist sessions (10 sessions at a time), as opposed to counsellor sessions (30 sessions at a time).  She was really nice about the whole thing and tried to assure us that this shouldn’t be seen as our fault – something that Sophie mentioned as we’ve failed to make progress with a highly recommended psychologist.

W has an issue with “running away” – her very childlike understanding of what suicide means.  Her wanting to run away was mentioned during the session and I think Bob picked up on what it really meant to W.  She mentioned getting hold of the Adult Mental Health Team to try and get us some assistance until we can find another therapist.  But the Mental Health Team and us are not a good mix.  They are sure that we have Borderline Personality Disorder, and treat us horribly as a result.  Bob again mentioned respite care and trying to use the respite as a way to try and get some rest and sleep – as well as monitor our safety.  We may have to resort to this, I’m not sure.  We’re not in danger at the moment, but know that this may change if we don’t get some sleep soon.

Just one moment at a time…

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The lack of sleep is getting rather boring.  It’s starting to influence our functioning and thought patterns.  We’re becoming more sensitive to knock backs and the switching is becoming more obvious to the outside world as we’re having to use it to cope with daily functioning.

The amusing side of this dysfunction was obvious yesterday when we found that some paper wasps have been making a nest in the wall gap of the house.  The 1st floor was the predominant group present for the discussion about what to do about the nest.  As with anything this floor does, it was a rather interesting discussion – the males wanted to blast the nest with carbaryl; S wanted to ask the cute male neighbour to take care of it; and a young one wanting to ignore it and going back to playing in the water.

The scary part of this dysfunction is that we’re again losing quite large chunks of time.

We’re spending a large amount of time curled up on the couch rocking in an attempt to soothe the internal chaos.  We’re at the dangerous point of being close to slipping into depression again.  The sad and hopeless ones are coming forward.  The food issues are starting again.

This week we have to do the final session with Bob.  I’m hoping M is around by that time to do the session, I just don’t have the strength to keep it all together.

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Shadows have always been an issue for us – what’s in the shadows, what will come out of the shadows etc.  But one particular nightmare about shadows is the silhouette of a man in the doorway.  As far as I’m aware this particular image has always been the cause of nightmares for us.  It would be fairly easy to draw the conclusion that it’s to do with someone coming in through the doorway at night to hurt us – I’ve no idea if this is really the origins of the image and nightmare.  Maybe we saw a scary movie with this image in it, not sure.

What I do know is that this image plagues our nightmares.  It’s the reason why we have to have the curtains drawn totally over every window in the house once it’s getting dark – there can’t be any possibility of being able to peek outside and see a face looking in at us.  It’s the reason why we have to have the wardrobe doors tightly closed.  However we can’t close the bedroom doors, and this is the current problem.

We’ve constantly got this image of a man standing in the doorway.  We can’t just close the doors.  If you have a cat, you’ll know that the one thing they hate more than an unreliable feeder, is a feeder who closes doors.  It causes an interruption in their nightly checks and wanderings around the house – and what if they suddenly decide that they want to use you as a heat source?  They end up scratching at the door and make their displeasure well known.  The sounds of which are almost as bad as the nightmare image.

One particularly memorable time when this nightmare caused a problem was when the ex-husband was going off to work early in the morning.  He had turned on the lounge light and had come in to kiss us goodbye.  We were half asleep and just felt the bed dip and then this silhouette come towards us.  Well he’d never seen us move so fast.  We screamed and dove off the bed and tried to get under it.  It caused the neighbours to call the police we screamed so loud and with so much fear.  Other times when he’d done the kiss goodbye we would freeze, but for some reason we needed to escape that morning.  Rather embarrassing telling the young officer why we had screamed!

At the moment this nightmare image is particularly bad.  We’ve been averaging 1-3 hours sleep per night for the last two weeks.  We’re bad sleepers anyway, but this is becoming a real problem.  We had a migraine yesterday which was caused by a combination of a lack of sleep and being so tense while trying to sleep that we’ve pulled several muscles in the neck.  It’s now 5:45am and we’re sitting here with a warm milky drink imagining someone walking up behind us and putting their hand on our shoulder.

Hmmm wonder if this is a phobia or paranoia?  We don’t particularly think that anyone is out to get us.  It’s a very much the concept of someone coming to get us, rather than some organised plot to come and get us.  Either way, I really wish it would go away.  But the internal conversation did distract us from the image for a second.

Oh well, off to read for awhile…

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There is a great deal of information about Dissociative Identity Disorder (DID) which proliferate popular sites.  They’re often easy to read, but generally created by the layman and therefore not necessarily accurate – for example look at the Yahoo Answers entries on DID.  Some of these answers are great little snippets of what it’s like to live as a dissociative, some are just scary mis-information…

As with any subject, there is an inherent danger that the information available can be based on the person publishing information without realising that they don’t know anything about the subject (unconscious incompetence).  On the Internet it’s easy to publish information in a credible format that is totally incorrect.  A majority of this is done without malice, but it has the unfortunate result of spreading information that builds or reinforces stereotypes which harm the people directly affected by the issue.

So what is DID?

In order to have a diagnosis of DID, a person must meet the diagnostic criteria according to the DSM-IV-TR .  It’s a nice list that would seem to be easily tick-able, but if you look at each it’s easy to see the issues -

1. How do you define a “personality”?
2. What is meant by “taking control”?
3. How much personal information must be forgotten before it is “extensive”?

This is just from a quick glance at the criteria.  Most mental health professionals have various issues with the validity of the diagnostic criteria and the diagnosis itself (Leonard, Brann & Tiller, 2005).

If the professionals have a problem agreeing on how to define and diagnose DID, how is the lay person meant to understand it?

In our experience, and many of the people with DID we have come to know, the criteria for DID don’t even begin to describe the reality of living as a dissociative.  What is also evident is that DID is different for everyone, for some there is such a high level of functioning that there is little impact on their lives; for others DID and co-morbid disorders mean that daily functioning is affected to the point that 24 hour care is required.

So DID exists as a spectrum, which also means that each individual who is dissociative experiences a range of symptoms, challenges and benefits.  The DSM-IV-TR is all about clustering symptoms together and labelling that cluster.  Sometimes it works, sometimes it doesn’t.

As an interesting aside – in the DSM-IV-TR, DID is given the coding 300.14, while Post Traumatic Stress Disorder (PTSD) is 309.81 – a discussion for another day.

Personally I put PTSD and DID on a continuum or spectrum – one book we found interesting that described this continuum is The Haunted Self by Onno van der Hart, Ellert R. S. Nijenhuis, and Kathy Steele.  It looks at the structural dissociation, which some people may find useful to explain or understand their experiences; some may not – as a indication of what perspective these writers take, have a look at Trauma-related structural dissociation of the personality.  As with all writers in the dissociative field, there are questions raised about their credibility so use your analytical skills to evaluate the credibility of the information for yourself.

To bring DID down to the personal level, for us it means experiencing: flashbacks; time loss; hypovigilence; hypervigilence; sleeping problems; anxiety; fairly constant internal “noise”; wonder at the sight of anything “cute”; compartmentalisation of emotions; suicidal ideation; an eating disorder; derealisation; depersonalisation and no self-confidence or self-worth.  This negatively effects our daily functioning to a large extent.  But we’re also a sister, daughter, maintain a full-time job and have the privilege of feeding one spoilt cat.

In many ways, describing DID from the individuals perspective is the only way to help anyone understand the disorder.  Our collective experiences which led to this diagnosis is individual to us.  We can’t talk about others experiences – although we may identify with theirs and vice versa.

So I’m not saying that each person with DID is so different that there is nothing in common, but rather each person with any medical or mental health condition needs to be treated as an individual, not a label.  Our different backgrounds have influenced how each person presents with DID – just as each person with any other medical or mental health problem will have different influences on how they present.

Each person with a physical or mental health problem deserves to be treated with appropriate respect, empathy and understanding.  We happen to carry the label DID within our medical files, we don’t expect special treatment or attention because of that fact.  We just request that people don’t judge us or project their issues with the diagnosis onto us.  If we’re faking the disorder, don’t worry one or two of the independent psychiatrists and psychologists we’ve been assessed by over the last three years would have picked it up and directed us to alternative therapy techniques.

Please treat others as you would like to be treated – especially online where you don’t know the impact your words might have. Yes, this is a lesson I need to remember as well – I’m often too blunt.

Please note: I’ve only touched on the definitions and discussion of the DID diagnosis because these can be found at reputable sources such as Merck: Dissociative Identity Disorder and ISST-D: FAQ Dissociation and Dissociative Disorders. Also try An infinite mind: What is a Dissociative Disorder for a easier read.

For a take on why DID doesn’t exist, try Multiple personality disorder – it’s so ripe for ripping apart critique, again something to save for another day.

Reference:

Leonard, D., Brann, S., & Tiller, J. (2005). Dissociative disorders: Pathways to diagnosis, clinican attitudes and their impact. Australian & New Zealand Journal of Psychiatry, 39(10), 940-946. Retrieved December 30, 2008 from EBSCOhost.

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How do you take back a holiday from the nightmares and flashbacks? The last three nights have been filled with nightmares and surreal dreams.

We are not consciously aware of any anniversary around Christmas, but have always dreaded the holidays. The father was a functional alcoholic and he tended to be at home more over the Summer holidays as where he worked was seasonally geared towards Winter sports – he managed a sports club/bar. This was also the time when we used to have to go to work with him on a regular basis as it was school holidays and there was no child care facilities (except for the older brothers and sister).

Alcohol was always a factor in the childhood. Whether it was being forced to drink the gathered dregs of all the alcohol left over from the night before when we were cleaning the clubrooms from the age of 4; or clearing the ladies toilets at the end of the night to check for those that were unconscious in the early teens. The family life revolved around alcohol and sport. It is from these experiences that Scruff was born… Scruff is our tough tom boy who could take the knocks, laughs and taunts that came from being one of the few females under the age of 7 who was constantly at the male dominated clubrooms. She could take it and keep on smiling.

Not sure why Scruff is making her presence felt at the moment. We did a private clip for YouTube which described our internal house, and it was the first time that she allowed a picture to represent herself to the outside world. If there is an anniversary coming that is tied to her, it would seem out of place, as she was mainly present when things were really raucous in the clubrooms over the winter months. She used to be rewarded with bags of chips.

Sometimes a memory will come through that just shakes you to the core… how could a person do those things to that smiling little girl???

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This is going to be a rant. I offer no apologies for this fact, nor offer any reasons other than the ignorance of others and our current level of switching. I’d like to acknowledge the work of Emily, Camigwen and David when I write this, as their blogs and responses have helped to stir questions within this system that we needed to address.

Our questions include:

1. Why do people not believe in a diagnosis that has been proven over time?
2. Why would people want to fake such a disorder?
3. What within this bodies past would cause such injury to the identity that it caused dissociation to become a disorder?

I consider that all of these questions come from one:
Who or what makes DID a valid diagnosis?

As this is our blog, I’ll concentrate on whom and what makes DID valid for us.

Is it the fact that we refer to this body as the collective terms “we”, “us” and “the body”?
No, this could be a learned behaviour that comes from some bizarre need to get attention through faking such a disorder. We are intelligent, this has been shown in IQ tests and our ability to get A+ grades at the Masters level, so remembering to use these ways to address the body would be easily done.

I’m told that when we first went and saw the new therapist that our fear of referring to the body as “we”, “us” etc was so high that we avoided saying any personal terms. Which worked to the point where the therapist asked us why we weren’t using any of the “I” terminology? Her observation annoyed those who had been present for the initial interview. But it also gave them hope – she may be able to help us unravel this mind and sort out what is occurring.

This concept is further complicated by some of us using the terminology “I”, but it only referring to the part that is present. So while Sophie may say “I’m worried about … today” Aimee may say “I’m happy today”. So the context of the “I” is only for that part and only for their experiences. This has caused difficulties when contacting crisis lines, as it is usually Sophie who calls, but she is never suicidal and never self-injures. So the crisis line worker hears a rather shy voice that is able to communicate that there are several different suicide plans and that there is a need for help – but the person asking for the help has a consistent speech pattern, is worried and fearful but is not obviously suicidal. What they don’t hear is the states that are totally devoid of emotion and have the suicide plans. We are unable to get them to communicate with the crisis lines as there is an inherent danger that they may be able to carry out the plans, or they just don’t want to reach out for help.

Having discounted basic terminology, what about the symptoms that we experience? Once, while being assessed for release from sectioning under our Mental Health Act, we were asked to list our symptoms. The list includes derealisation, depersonalisation, dissociation, sleeping problems, anxiety, hypervigilance, hypovigilance, flashbacks, nightmares etc. The assessing resident response was that everyone experienced that, so what made us so special?

So do those symptoms make us special or different? No they don’t. They do however mean that at times we are unable to carry out the normal activities that other New Zealanders enjoy. It means that at times we react oddly or badly to triggers. It affects nearly every aspect of this life – from doing the shopping, to intimacy, to household chores.

We don’t call attention to these symptoms, and are rather stunned if someone around us notices that we do something slightly differently from everyone else. As we are the only ones who can truly see what is going on in this head, it is also difficult to establish whether the severity of the symptoms we have is consistent with having a dissociative (or any other) disorder. Possibly our symptoms are in the “normal” or usual range of experiences and we just can’t cope with them. Considering the amount of assessments we’ve been subjected to over the last three years, it’s become obvious that we’re either a very good actress, or there is some form of disorder occurring.

So should we believe the psychiatrist, clinical psychologists and therapists that we’ve seen? It would be easy if they agreed. We’ve had experiences where we’ve switched in front of our first therapist, she even asked what had happened – according to her we were still physically sitting in the same place, but it appeared as if we’d moved away from her. This was just a switch from the softer Sophie, to the older and more confident Management. We’ve been told that the anger the Frank shows is reason enough to be sectioned under the Mental Health Act. We’ve been told that we have Borderline Personality Disorder, DDNOS, Depression, Anxiety disorders, Epilepsy; Bi-polar disorder… the list goes on. Some of these labels were put on our medical records in an attempt to get us assistance. What’s been interesting has been other mental health professionals responses to those diagnoses. Some look at the list and say that we’re typical Borderlines who are just attention seeking. Our clinical psychologists counters this by asking what attention we’ve enjoyed receiving over the last three years, the response is NONE. Our life revolves around trying to keep the appearance of “normal”. The ex-husband used this trait, and the dissociation to abuse us severely.

So if we can’t trust the mental health professionals, who are we meant to believe? Who do we look to for making the DID diagnosis valid for us?

The answer always seems to come back to one thing – Katie. Katie is our youngest active part. She is three, nearly four. She constantly follows Sophie and will only talk to her. She is precious, she is the reason many of us fight to keep this body alive and in one piece. She is not the identity of birth, but she is our centre. It makes us all stop instantly if Sophie says that Katie is “scaredy cat”. The worst sight ever is seeing her curled up rocking from the pain – either from memories or what is occurring within the system/life.

It could be argued that Katie represents an “inner child” that everyone experiences. This is again possible as we only have our own experiences; we don’t know what anyone else’s inner child acts like. However, we also have W, SO, S, M, A etc. These parts all have different memories, ways of interacting with the world (inner and outside), and mannerisms. W is calm, quiet, reserved, has issues with religion and is a Science whizz; while SO is anxious, must keep moving, constantly scratches the arm and talks rapidly.

So where does that leave us? In limbo. DID is not recognised widely in New Zealand. We’ve never been formally tested for any of the dissociative disorders, and in some respects it would be pointless to do so. We’re intelligent; we would be able to skew the results of the tests if we wanted to. So all we have is our collective experiences which seem to add up to DID in the eyes of many of the mental health professionals we’ve seen. What it hasn’t done is given us hope. We’re still struggling to find a therapist who can help us. We try to express our thoughts, feelings and experiences through media such as YouTube and get told that what we’re experiencing is delusional and we need to accept that delusion in order to move forward.

All we know is that we need help. We are becoming lost in the dissociation. Our fronting personality for many years has gone to sleep. We’re struggling to find a way to make this life work with the parts that are here and functioning. We’re asking parts to be up front who have never had that level of exposure and sometimes it doesn’t work. Just recently one of the women at work asked us if we had multiple personality disorder. That gave us all a shock. We managed to laugh it off, but it shows that our ability to hide as developed cracks. We need to repair those cracks rapidly.

Sorry for the length of this post. I rarely am here, so wanted to raise questions for the others to see.

Take care.
Be well.

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