Scattered pieces

In New Zealand, in order to receive ACC assistance, you need to have a diagnosed mental illness directly related to the abusive injury. I know from reading other blogs, that health insurers around the world, often require a recognised diagnosis in order to provide (or exclude) coverage. Depending on where you’re from, that diagnosis is determined by either the DSM (Diagnostic and Statistical Manual) or the ICD (International Statistical Classification of Diseases and Related Health Problems). In New Zealand, we use the DSM, and this is currently being substantially revised – some say rewritten, and is due for release in 2013.  If you’re wondering why I’m worried about something that is so far away, well, this manual determines whether I will receive ongoing assistance, what that assistance will look like, I enjoy being an informed consumer, and I’m curious how mental health professionals perceive my various reactions to life.

At the moment, the proposed revisions have been made available at DSM-5: The Future of Psychiatric Diagnosis.  There had been all sorts of rumours circulating that there would be a whole plethora of new diagnoses, and the removal of others – including DID.  Based on my rather uneducated eye, the changes are “interesting” rather than sweeping.  Running through the disorders that I’ve been labelled with over the years, there’s an interesting mix of tightening of the definitions, and what seems a desire to create a “catch-all” diagnosis.  Here’s my take on a couple of them…

300.14 Dissociative Identity Disorder
My first concern is that they are now going to allow the disruption of identity states to be reported by the patient.  Call me cynical and a worry wort, but if you’ve read tales of caution about the “attractiveness” of having DID (for example Tempy’s entry Lemme just say it), then this may open the way for some misguided people who have problems, but not necessarily DID, to “seek” the diagnosis.

Then we get onto the “experience of possession”… I think they need to clarify this wording somewhat.  To me, it sounds like something associated with spiritual or religious possession.  That again, could just be my cynical take on it.  This could be saved by the wording of the last criteria, where the disturbance is not part of “accepted cultural or religious practice”.  But still, the word “possession” conjures a certain image that isn’t positive!

There now seems to be some acknowledgement that abusive events can be repressed – “Inability to recall important personal information, for everyday events or traumatic events, that is inconsistent with ordinary forgetfulness.” I know this won’t eliminate the False Memory Syndrome (FMS doesn’t appear in the DSM as far as I can tell) supporters, but it gives an official nod to the research supported indications that traumatic events can be suppressed, or forgotten as part of a coping mechanism (and the crowd goes wild – insert by Mickie).

According to the rationale behind the changes, this new wording is aimed at reducing the use of DDNOS, the understanding that forgetting everyday events is common (i.e. mild dissociation is common) and an indication that conversion and somatic conditions need to be looked at when making any diagnosis.  Personally, I think the wording could benefit from some further work.  I rather like having DDNOS as a “fall-back” diagnosis when I’m faced with a mental health professional who doesn’t believe in DID.  But overall, I can see some benefits to the changes – the big one for me is the inclusion of the inability to recall traumatic events.

309.81 Post Traumatic Stress Disorder
There seems to be further indication that dissociation is a normal response to trauma – something that the research has shown for years, with the wording “Dissociative reactions (e.g., flashbacks) in which the individual feels or acts as if the traumatic event(s) were recurring (Such reactions may occur on a continuum, with the most extreme expression being a complete loss of awareness of present surroundings.)”

Persistent distorted blame of self or others about the cause or consequences of the traumatic event(s)” – they’ve acknowledged that self-blame is an issue for survivors!

Irritable, angry, or aggressive behavior” – added aggressive behaviour, which is a great inclusion – I’m thinking in particular about my ex-husband with this one.

According to the rationale behind the changes, there appears to have been a great deal of input into this diagnosis, but little actually changed.  The changes that have been made appear positive in broadening the scope of the reactions that those with PTSD can have, as well as defining the time frame associated with the onset and continuation of symptoms.  I admit not to having as much of a vested interest in this diagnosis, as I think pretty much any survivor will fit this diagnosis.  It’s more about how far reaching it goes.  I appreciate that they’ve indicated the dissociative experiences that can occur – but it begs the question as to why DID is not on the PTSD spectrum?

301.83 Borderline Personality Disorder
I’ve heard of BPD being a diagnosis given when they don’t know what else to label you…  Overall, I think that those with the diagnosis have an incredibly bad reputation which is undeserved.  I’ve been labelled as having “Borderline traits”, but when reviewing the PTSD criteria, the behaviours that they describe as “borderline” could be PTSD.  In many ways, the revisions still allow BPD to be a “catch all” diagnosis for when they’re not sure what else to do with you.  It has aspects of PTSD, dissociation, psychosis, low self-esteem, impulsivity, etc.  When you look at the different aspects on the surface, it is easy to see how many survivors could meet the criteria; it’s only when you do the diagnostic tests that you realise that the severity needed to meet the diagnostic criteria.

To me, this diagnosis seems to have been fleshed out substantially.  This worries me when you consider the poor reputation and often poor treatment that those with BPD receive…  When I was initially given a diagnosis of DID, I was told there were no treatment plans for that diagnosis in New Zealand, so they sent me through the system with a diagnosis of BPD… I was shocked, dismayed and victimised by some of the mental health professionals who treated me as “another borderline”.  It’s taken many years for the public health system to remove BPD from my records.  I can see with this revision, that many more people may receive the diagnosis and associated poor treatment.  Mental health professionals really need to change their attitude to those with BPD.

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Overall, the revisions seem intent on minimising the use of the “NOS” diagnosis.  But in some areas it won’t be possible – from my understanding of the criteria, I will still meet the EDNOS diagnosis.  I’d encourage you to check out the proposed changes… it’s an interesting process they are undertaking.  There has been criticism that the work is being rushed, so that means we have more of an obligation to check it out – especially mental health professionals!

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Now playing: Sarah McLachlan – Angel
via FoxyTunes

A good friend recently mentioned that she felt like she was going to fall, and fall deeply.  Part of her was expecting, and almost wanting the fall to happen.  Thankfully, her fall hasn’t happened, and I hope it doesn’t; but what she describes is a feeling I know all to well.  It’s like standing on an edge, waiting for that last push to send you over into a mental health free-fall.  The scary bit about standing there, is that you have an awareness about where you are.  You know that one more negative thing is going to push you over, and part of you wishes that it would come so that it’s over with; but another part of you hopes that you can still claw your way back to safer ground.  It becomes a tug of war between different parts of you…  This alone is so tiring that it can be enough to tip you over…

I know I’m also moving closer to the edge.  The stressors in my life have kicked into high gear and I can feel the pressure building.  At the moment, I’m far enough away to know that I’m in danger without being too close to it.  A part of me niggles that I’m thinking myself into moving towards the edge – why do I think of my ex-husband, why worry about the ACC assessments etc.  But the rational part of my brain knows that I’m experiencing PTSD flashbacks and my worry is justified based on past assessments.  This is the beginning of the tug of war that intensifies over time.  Soon other issues will come in to muddy the waters – denial, and a need for validation have already started to appear.  All of this increases my anxiety levels.  I’ve experienced this often enough in the last few years to notice the pattern…  It becomes like a dance, to and fro… ever closer to the edge…

The problem becomes, how do you stop the dance?  If I called a crisis line, they would take me through the individual stressors I am facing and encourage me to break them down into solvable chunks.  This would work for some of the issues I’m facing, but they can’t help with the PTSD symptoms.  I saw Jo today, and she was recommending trying to ground in the present, and while I agree with her reasoning, I also know that I can be very grounded in 2010 and still keep on dancing towards the edge.  Some of the grounding work can make the situation worse – repeating “it’s the 26th of January, 2010 and they are just memories” can morph into a denial statement about the memories all being made up.  The most effective way of keeping the anxiety at bay is to consciously breathe deeply – this also tends to by one of the first things I forget to do.  Like many survivors who experience anxiety, I have a form of hyperventilation syndrome, with my breathing being short and shallow.  It takes a conscious effort to alter my breathing pattern to a healthier depth and pace.  Changing my breathing will temporarily ease the anxiety, but often this isn’t enough to stop the dance towards the edge.  I’m not always sure what moves me away from the edge, I think this time it will be the formal dissolution of my marriage and completing the ACC assessment.  If this is the case, I’ve got about another three weeks of doing the dance around the edge.  I don’t think I’ll fall, but a part of me thinks I will…  A part of me wants to fall, because they think that this is what I deserve…

And so the dance continues…

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Now playing: The Feelers – Stand Up
via FoxyTunes

We have to do another ACC assessment to continue getting assistance…  As a result we’ve been playing “angry” music.  This song in particular, fits nicely…

As a warning, this might not be one of my most rational entries – and there have been some pretty irrational ones over the past year…

Today we went to see Liz for our scheduled appointment.  It was a monumental disaster.  We had to talk about a report for ACC to ensure we continue to receive funding (yes, this funding seems to be a continual battle).  We were in protection mode, pretty much shut down with Sophie only able to look at the keys she was playing with in her hands.  We’re very aware that ACC want to see improvement – no matter how small.  But, we haven’t improved much and if we put that in the report, we would probably end up being sent for a psychiatric assessment.  We had this knowledge sitting in the back of our head and were trying to tailor our answers as a consequence.  Then Liz casually dropped a bombshell…

“We can’t have you functioning too low or out of control or they’ll refer you to mental health services for the DBT programme.”

This is one of our nightmares… being sent to DBT in New Zealand.

I know people are helped by that programme every day.  I know it helps with emotion regulation and mindfulness… I know it could potentially help me immensely.  BUT over here, there is no streaming or grouping according to functioning, you are placed in the first opening they have.  There aren’t any evening courses, so I’d end up having to take time off work.  This means that I could end up in a group which is incredibly low functioning and triggering for me.  I don’t cope well with groups, so I’d sit there like a stuffed dummy, avoiding the whole situation – I didn’t talk once during a Mindfulness course which lasted for six weeks.  What’s worse is that it will odds are trigger M to come forward to protect us, so we’d end up appearing saner than the therapists and be ticked off as “cured” very quickly.

Yes, I know this hasn’t happened and was just an idle comment by Liz… but with the changes in ACC policy, it’s a very real possibility.  I never thought I’d say it, but please let them decide that I need a psychiatric assessment.  Anything but DBT.

The flip side of this conversation, is that we now think that we’re too much for Liz to cope with and this is her way of introducing the idea of us moving on to someone else.  So the concept of testing her with our trust, went flying out the window.  Again, I know that she hasn’t said that she’s going anywhere…  It’s just our damaged perception of what happened.

Problem is, our damaged perception seems very real right now.

Two good things from this week:

1. ACC have approved 20 sessions with Liz (yippee!!)
2. We got an “Excellent” rating on our job performance review.  This is surprising considering that we hate the job – we even said so in the review.  But, we have specialised skills that the library needs, so they want us to get a bonus for retention purposes.

Please note that this entry may trigger.

“Are you safe?”

This is the question I’m often asked by a friend who knows the extent of my self-injury.  I often hesitate in answering, not because I don’t want to answer, but because I don’t really know what “safe” means.  When you’re a survivor of abuse, your goalposts surrounding the concept of safety often shift – it could be that “safe” becomes not being physically assaulted, but still experiencing psychological abuse.  This is what most of my marriage was like.  He rarely hit me, so I thought I was “safe”.  This sort of understanding ignores the broader definition of safety as being secure from danger, harm, or evil.  Many survivors wouldn’t know what that sort of security means or feels like.

It was interesting when I was asked this question today, I hadn’t been safe over the weekend and I realised that I didn’t particularly care.  This isn’t because I’m suicidal or tied to a feeling of deserving the self-injury, but because I don’t have any sense of it being negative or being “me”.  Up until last week I was actively trying to work through the self-injury so that I knew what had triggered it and could potentially prevent it in the future.  That’s all changed.  I’m no longer worried about preventing it, because I don’t have any sense of it impacting on me in any way.  I know this is a dissociative event and compartmentalisation, but I can’t move beyond that knowledge into any solid concept of it doing harm.  I know that this is probably tied to the denial that I’m currently experiencing, but I don’t get a sense of needing to move beyond that denial.  This all could also be contributed to ACC still not approving any further sessions with Liz, I’m not sure.  I know that this is a potentially dangerous place to be in, but it also has it’s benefits.  I’m moving back to my high functioning at work, I’m enrolling for another qualification and am getting back to exercising regularly.  This is close to my functioning during the middle years of my relationship with my ex-husband, when I was considered high-functioning and an asset.

I’m not sure of what to make of it all and I get a sense that I don’t want to analyse it.  All I know is that the screaming inside my head has gone.  Everything is back in the boxes behind the wall.  I don’t even get a sense of that having occurring,  I just get a sense that this is what has happened.  It’s both confusing and totally clear at the same time.  When I saw Liz on Monday, I mentioned the denial and she responded that I wasn’t wanting to look at the past.  But I don’t have any sense of the past, I don’t need it or want it.  All I have a sense of, is my life becoming a tickable list of things to do – mow the lawns, check FaceBook, go to bed and read for an hour, etc.

Not quite sure what is happening, or how long it will last.  But it’s an easier life than the one filled with anxiety, flashbacks and suicidal ideation.

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Now playing: Brooke Fraser – Lifeline
via FoxyTunes

Please note: This entry may trigger.

I’m very aware that I often tell others to “take care” and “be gentle”.  But I have no idea how to do this myself.  I’ve been losing my battle with self-injury more and more over the last month.  It started with the week leading up to the Father’s Day/Mother’s birthday weekend and was easing off, until being triggered again by a potential loss of our ACC funded therapy – they don’t consider that we have made enough progress towards healing.  This all adds up to a total loss of control and a desire to escape.  Even the act of breathing feels disgusting.

There is a desire to keep on distracting, everyone tells me when I get like this to utilise my distraction techniques.  I wonder if I become so good at reverting to these distractions, that it means I avoid looking at the problem.  The distractions become another form of dissociating the pain away.  Yet I’m terrified of looking at the causes of the pain.  The very first time I tried Mindfulness I was doing the usual process of trying to look at my thoughts on an internal movie screen, instead I was confronted by a wild haired alter silently screaming through a window at me.  It was terrifying.  I use the distraction techniques to avoid having to see anything like that again.

I’m hanging on by a thread.  I know I’ve been here before.  I know I’ve gotten through this before.  But how many times does this have to happen before I’m allowed to let go of the thread?

Sorry, I’m not strong enough to cope with comments on this post.  I know the people who usually comment on this blog are incredibly kind, caring and amazing people.  It’s just where I am at the moment.  Sorry.

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Now playing: Brooke Fraser – Scarlet
via FoxyTunes

I’ve struggled long and hard to understand what is meant by the term “healing” within a mental health context.  I’m familiar with healing that can be quantified (e.g. a broken bone mending), but how do you quantify healing from childhood abuse?  Is it possible or desirable to do so? What time-frame should we look at as reasonable when we’re considering the healing process?

I’m very aware that this is the intellectual side of me asking these questions.  The questions are born from frustration at what is seeming like a very long journey that hasn’t got us very far.  I know that many survivors experience a decrease in functioning with the start of therapy, but how long can I expect this to continue?  I do what I can to hasten the healing process – I do the homework I’m set, I try to be as open as I can within therapy, etc.  But is this enough?  I’ve been told by therapists that I’m “working hard” within therapy, but I often feels as if it’s another part of my life that I’m drifting through.  There will be a moment of clarity surrounding why I do a certain behaviour, but it’s then lost in the confusion and dissociative memory gaps.

I’ve yet to fully understand what the term “working hard” refers to within therapy.  Yet, I often come out of a session absolutely exhausted or on an adrenaline high, both signs that I have experienced something extreme for what I sometimes dismiss as “sitting in a chair for 60 minutes talking”.  I have a great deal of respect for those who are working on their healing as a full-time endeavour, it’s not something that I have the strength for.  But I have no respect or patience for my own healing.  I’m still caught in dismissing and minimising the memories.  Liz has offered to assist with this process by using her as a sounding board to test out the feelings and potential accuracy of the memories.  There is a certain attraction in doing this, we could finally prove what is real and which memories have potentially been influenced.  But there is also a fear that Liz will say nothing about the validity of the memories, but rather ask us to look at them and analyse our feelings and emotions about the events.  This is my greatest fear, having no way to prove or dis-prove the memories and still having to do the work of recovering from the toxic mess they generate.

Part of my anxiety is generated from the proposed changes to the ACC scheme (check out the ACC category at Gudrun Frerich’s site for some of the issues surrounding the changes).  As an ACC client, the changes will mean more reporting, increasing need to measure the healing progress and the threat of my cover being stopped at any time.  There is no way that I would be able to afford therapy without ACC assistance, so this is  a huge issue.  This is not because we are attached to, or reliant on Liz; but rather I have a fear that if we can’t release the thoughts within a therapeutic framework, we will self-destruct.  Yes, I realise that I’m contradicting myself – how can therapy be “sitting in a chair talking for 60 minutes” as well as one of the things that keep us sane…

In totally other news, B entered us into a photo competition which we have absolutely no chance of winning or even placing in.  This goes against every single strand of perfectionism that runs through our body.  I do realise however, that it’s going to be an great deal of fun for them deciding how to photograph 100’s and 1000’s creatively.

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Now playing: The Feelers – Stand Up
via FoxyTunes

It was an interesting session with Liz today.  I had gone there with a plan of what to talk about – boundaries (especially around religion), our diagnosis, what that diagnosis means and her cell phone.  This agenda probably indicates that a fair amount of M went into the planning – it was a little optimistic that we would be able to get through all of that without dissociating badly and losing the entire session.

We went in prepared… or so we thought.  In our usual fashion we walked into the office, sat down and became unable to look anywhere apart from the floor, her beanbags, stuffed toys and tissues.  Sophie fronted while a major discussion happening internally about how to broach the subjects.  Liz has this habit of waiting for us to talk first; we have this habit of sitting there, unable to talk.  Today she asked how we should start each session – waiting for us to talk, or for her to start asking questions.  We said unless she wants to spend an hour in silence, she’s best to ask a few questions first :)

Sophie started off saying that religion shouldn’t be mentioned unless W raises it first.  W will raise it, but Liz needs to wait for that to occur.  W is consistently curious about why other people believe in whichever religion they follow and has asked all our previous therapists about their beliefs.  Liz just has to be ready for the grilling that she will face when W does ask.  W has heard many of the reasons behind why a God would “allow” abuse to occur, so Liz needs to have some solid arguments to present or else W will dismiss or destroy her logic.

Then things went a little haywire as Liz again brought in issues which really shouldn’t be raised mid session regarding ACC funding further sessions.  As neither of us had been notified of any decision, she called them during the session – she asked if that would be OK with us and we’re incapable of saying “No”.  This then led onto a discussion where ACC are going through new guidelines where clients who haven’t met their goals will be referred to a psychologist.  Liz wasn’t sure if this meant existing clients as well, but it was something to be aware of.  This triggered all our self-hatred for not being “cured” yet, and being a problem client for not being “cured”.  Does it mean we’ll have to go see someone like Bob again?  What will ACC do with us?  We rarely meet our goals as we don’t fit into a definable goal framework – we show gradual change over time rather than a “cured food issues” sort of thing.

All of this triggering brought forward someone I’ve never met before.  They were male and from either Ellie’s floor or The Basement.  They communicated with Liz and asked what had happened to trigger them coming forward.  They were actually pretty polite, but the whole time they talked he continually ran the sharp keys across palm of the left hand.  He didn’t break the skin and kept talking in a non-threatening way, but kept on hurting the body.  Liz tried to distract him with the soft toys that he could squeeze instead, but that idea was rejected.

When Sophie returned, she could tell something had happened with the hand, as it felt hot.  We don’t feel pain very much, but could feel the heat radiating from the hand.  Liz explained what had happened and Sophie tried to explain that it wasn’t attention seeking.  It may look like it as we were sitting in front of someone hurting the body, but it wasn’t for attention.  It was purely to punish.  At this point Liz stunned us, and agreed.  She knew it wasn’t for attention.  I don’t know how she came to this conclusion, as we’ve always been told that any sort of self-injury was for negative, attention seeking purposes.  Also the undeniable fact that, we were sort of doing self-injury in front of her – surely that means we were attention seeking.  But according to Liz we weren’t.  I think the reason she saw it this way was because she was totally irrelevant in the self-injury.  It wasn’t being done to manipulate her or modify her behaviour in any way, it was just what that one needed or wanted to do.  It wasn’t really a big deal in the scheme of things.  But for us, it was another indication that we are crazy and losing our ability to act “normal”.

This then led into the final big issue regarding our diagnosis and what that means.  This has always been a sore issue for us – DID is not widely recognised in New Zealand and is seen in a negative light.  Liz’ experience with other dissociative clients means that she can compare our behaviour to theirs.  This comparison will mean that she can state with some certainty that we do, or don’t have DID.  We’re stuck between the options which could describe our behaviour and thinking:

• Believe that the childhood was perfect and we’re now attention seeking.
• Believe that the childhood wasn’t perfect and we have an undiagnosed personality disorder.
• Believe that the childhood was traumatic and we have a trauma or dissociative disorder of some sort.

The problem is that the parallel truths about the childhood are so vivid.  On one side there is the perfect childhood where we feel loved and safe; on the other side is abuse, pain and fear.  A previous therapist has stated that these two truths don’t necessarily have to be mutually exclusive, but it’s hard to see where they would meet or co-exist.  Liz responded that each of us play roles within this life – how we present at work is different from how we present at home, in parties, out shopping etc.  I accept this is true, so it seems to be that Liz is saying that we’re not dissociative, but rather are doing a bit of hysterical attention seeking through exaggerating what is nothing major.  The session ended before we could fully talk through the implications of what she was saying.

Sorry for the rambling waffle, I’m trying to make sense of what happened in the session and failing.  I’m not sure if this is a continuation of my ability to appear higher functioning than I feel, or whether Liz is seeing me accurately and I need to just get over myself.

The last few weeks have been difficult. The prospect of ACC mediation on Tuesday (21st) had us going off on all sorts of tangents. Then last Thursday (16th), ACC made a decision which meant that the mediation was no longer needed, although they have yet to look at our corrections which will odds are require another round of negotiation.  Despite this apparent cancellation of the meeting, the potential sat within the system.  Some of us considered it to be like the tricks played on us when younger. At any moment we were going to get a phone call on Tuesday telling us to get to the meeting. Thankfully that phone call never happened, instead we got to spend the two days we had arranged to have off to recover from the meeting as time to breathe.

On Monday night we chatted with a friend who’d been on holiday for what seemed like a very long time.  He helped us smile, laugh and shed a tear.  Through a photo slide show he took us on a tour of where he lived – it was fascinating.  I’m always awed by the historic nature of where most of the people I talk to live.  To put this into context, New Zealand has had only been a British colony since 1840.  We don’t have the old buildings that are present elsewhere around the world.  To show him a little of where we live, we went out taking photos (at midnight)…

This mural is in a car-parking area in the middle of town.

This was the only photo that turned out viewable – we have an essential tremor which doesn’t mix well with night photography and the long exposure times needed.  We might have another go at doing a tour of where we live on a fine day.

On Tuesday we needed to get out of the house – possibly the fear that they’d call and we’d have to go to the meeting.  So we went around the gardens and took more photos.  Photography is fast becoming our main means of distracting, focusing and self-soothing.  Part of the soothing, is to take photos of plants.  I know that many people consider this type of photography boring, but for us it’s about finding peace for a short time.  It’s something that each one of us can enjoy on some level – I’ll get a message to take a photo of the purple flowers…

Lilac viola

Purple viola

Sometimes, the camera feels very cumbersome in my hands and I’ve taken to wrapping the strap around my right hand several times, I’m not sure if this is a switching issue, or me being a klutz. I also know that not all of us are happy with this new interest – I’ve been told that the camera is going to be thrown into the lake or smashed into the pavement.  I know that these threats are about us not being entitled to any form of enjoyment.  It’s awful to hear, let alone realise that part of this brain is wired to ensuring that we don’t enjoy life.

On Tuesday night we ended up talking to another friend.  I mention this because it was the first time in over a week where S didn’t come forward to self-injure, which had become more severe as the week went on.  Again, there was laughter and a sharing of knowledge.  It always amazes me that those who are going through difficult times can put that aside to help someone else.  To those friends, I say thank you.  I hope we can reciprocate what you both did for us one day.

This reminds me of Faith Allen’s entry over at Blooming Lotus about how we can Make a difference.  You don’t have to be rich, pretty or popular to make a difference, it’s all about being willing to learn and share that knowledge for the social good.  I stumble badly with this sometimes, the fear and anxieties put up barriers to my learning.  But I can’t use this as an excuse to give up.  When teaching information literacy to cynical and usually technophobic students, I tell them it takes practice.  Information literacy is all about lifelong learning – being curious about new things.  It would be hypocritical of me not to gently work on those barriers in the same way that I get my students to question every scrap of information they find.