Scattered pieces

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).

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 :)

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.

We nearly fell asleep today.  Unfortunately we were at work at the time.

We’d just done an hour of teaching to about 20 students and 2 librarians who have never done teaching before, so came in to observe.  The adrenaline caused by the teaching meant we were totally wiped out afterward.  I think it was probably our worst teaching experience with the exception of our very first attempt while working at the University.  Oh well, I’ve often thought that you learn more from making mistakes than doing it perfectly – shame the rest of the system doesn’t think that way!

We’ve sort of had enough.  I don’t think we can cope with much more.

M is frantically making plans for the future that will tie us into responsibilities that the ones who want to escape won’t be able to ignore.  Even when the suicidal ideation and intent is high, there is a level of responsibility that will not allow anyone else be inconvenienced.  If we have responsibilities that involve money or people relying on us, the plans won’t be acted on.

This is part of the reason why we MUST work and appear “normal” to everyone around us.  No one can see the dysfunction.  No one can know that we’re not quite like everyone else.  We work hard at appearing more “normal” than everyone else.  We usually succeed at this.  But sometimes it just becomes too much and we want to curl up and let the world go by.

So today, despite everything going on in our little world, we were there for our friend at work who found out that her brother has terminal brain and liver cancer – this is the same woman who has a husband with terminal stomach cancer.  Our troubles are nothing compared to that.

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…

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.

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…

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.

Last night was interesting…  We again struggled to sleep and ended up talking to Kriss (our friend in England) until about 3am.  We started off talking using Yahoo messenger, which allows us to be more open as there is an increased level of safety that comes from talking without hearing their voice change into the “good grief this chick is crazy” tone – Kriss has never done this with us, but there’s always that fear.

It was his birthday just after Christmas, and unfortunately it was on one of the days that we “lost” to the dissociation.  There was  a brief spot of lucidity when we tried to phone, but it was pretty short lived.  We tried to explain how we lose time – from just minutes through to weeks, and didn’t explain it all that well so ended up using going to Madagascar 2 to try and describe what happens…

Sophie, Buffie or Management will buy the tickets and get it all organised – making sure we’re on time, talking civilly to the mother etc.  But when the movie starts the usual “me” that Kriss talks to steps back and a 5 year old comes forward to watch the penguins, an 8 year old comes forward to watch the monkeys, the 5 year old comes back to watch the dancing and a 3 year old comes forward to watch the baby animals.

Sophie, Buffie or Management have little knowledge of the movie and just lose that time to those other parts.  Sophie has some awareness of it to ensure safety, but that’s it.  She was told that this one wasn’t as good as the first one, and even the “Move it” song wasn’t as much fun.

We think he’s starting to understand it a little more, which is a bit scary.  He also picked up when he started talking to Management rather than Buffie – that is unusual in that it’s such a smooth transition that most people don’t pick it up unless Management is suffering badly from hayfever…

So this is how the rest of us explain the dissociation and time loss, the librarian is going to write something about it later to look at it from a more peer reviewed, research point of view…