Screaming Tests!

Popular magazines (women’s and teenage ones especially) frequently contain personality quizzes, “what sort of lover are you?” “Wild cat or pussy cat?” and so on.  These are very popular, and I have to confess, quite amusing, particularly if a group of you do one together.  It seems to me that psychiatric and psychological services use these as much, if not more than the magazines do.

Recently, after an 18 month wait I had my first pre-commitment session prior to starting DBT properly very soon.  I mentioned in my last blog that I left that appointment feeling slightly overwhelmed, yet hopeful.  My second session is looming and I have done my homework which consisted of a bit of reading and six questionnaires aimed at measuring base line mood and tendency to specific problems.

Of course I understand that these multi choice “screening tools” aka quizzes, are developed carefully and tested for statistical validity and diagnostic accuracy.  However, you can become to reliant on tools not entirely fit for purpose.  Let me give you an example from the BD1-11 sheet which consists of 21 questions where you have to pick the statement most relevant to you.

Question 11 – Agitation:

0                     I am no more restless or agitated than usual

1                     I feel more restless or wound up than usual

2                     I am so restless or agitated that it’s hard to stay still

3                     I am so restless or agitated that I have to keep moving or doing something

Question 15 – Loss of Energy

0                     I have as much energy as ever

1                     I have less energy than I used to have

2                     I don’t have enough energy to do very much

3                     I don’t have enough energy to do anything

The sheet asked me to think back over the previous two weeks to answer the questions.  Now, bearing in mind rapid mood swings is one of the diagnostic criteria for BPD you might think they would see the problem with this form.  Over two weeks, at different times I could answer every single category of both questions.  Even if I try to pick out the most prevalent answer it is still inadequate in so much as all could be true in one day.  Indeed, in the space of one day I can swing from 3, in question 11 to 3 in question 15 and back again.  The fact is I have done on more than one occasion in the last two weeks.  So, how should I complete the forms?

I have done it, but to do so I have had to contort my memories and experiences to fit the questions.  That’s not the same as making them up, it’s just I have answered them based on a moment in the last two weeks rather than the majority of the time.  Perhaps the culmination of moments will equal a helpful indication of whatever the test is for – but I’m doubtful.  I’ve had to fill the margins with annotations explaining the inadequacy of my responses.  I don’t really see how it can be of any value.

On The Buses

What is it with bus drivers?  Well, not all bus drivers, in fact, probably a minority.  But it’s happened to me twice now in a matter of months, so it can’t be that unusual.

This is what happens:

I decide to pluck up my courage and use the bus.  I try and have someone with me if possible, but I can’t always.  I get on the bus and place my travel card on the scanner (my card allows a companion to accompany me on the bus) and I should say how many are travelling (one or two) and where I am going.  The driver will then issue my ticket.  Simple – what could possibly go wrong?

The first time I had a problem I was travelling with my daughter.  We got on the bus and I said:

“*******(town name) plus 1.”  The driver just looked at me as if I was stupid.  I was confused.   I had no idea why he was looking at me in such a derogatory way.  After a moment he asked,

“How many?”  Thinking that when I said plus 1 I had made it quite clear how many were travelling I was even more confused and became highly anxious.  I tried to clarify with a question,

“How many what?”  At this he rudely spoke to me as if I was a total moron saying,

Are you travelling by yourself or with someone?”  By this time I was in a state of panic, very angry and feeling totally humiliated.  I managed to defend myself with,

“There was no need to be rude!”  Then the anxiety triggered a sort of hallucination, and the driver’s head morphed into a horrific monstrosity, snarling and looming out towards me.  I made it to a seat with my daughter where I sat and trembled all the way home.  It was three months before I dared to use the bus again – and that was because I had no choice.

Just recently I was travelling with an adult friend and my daughter.  I got on the bus and was so intent on remembering to say how many, I forgot to say where we were going.  The driver looked at me with a sort of “der!” expression.  I had no idea what the problem was.  Fortunately it did not escalate further because having looked at me like I was stupid, he realised I had no idea what he wanted and asked me where we were going.  I told him and we sat down.  Nothing too awful that time, except it brought back all the feelings from the time before.

Why is it that these bus drivers, who allegedly have training in providing good customer care to all bus users, can’t exercise a bit of common sense so that when someone (especially someone using a disabled traveller’s card) doesn’t tell them all they need to know, they just politely ask for the additional information.  In both my examples,  if the driver had just asked a clear question, no distress would have been caused, and I (and other travellers) would feel much happier and confident in the service provided.  

Being treated like a sub-human, unintelligent freak is not professional, or helpful, but it happens often, in many situations (shops, council offices, restaurants etc.).  Campaigns such as Time To Change (England and Wales) and See Me (Scotland) are so needed in current UK culture.

http://time-to-change.org.uk/

http://www.seemescotland.org/

DBT at last....

I’ve mentioned DBT before.  Dialectical Behavioural Therapy is the treatment of choice for BPD according to NICE guidelines.  I have been on a waiting list for this for eighteen months, and in that time have seriously doubted if it would ever be my turn.  Not least because a change of postcode may well have meant losing the opportunity completely by living in another NHS trust area that does not offer the service.

This was a real possibility because our landlord needed to sell the house we live in and we would have little choice on where to move, being driven by the cost of rent rather than location.  However, this week has been momentous.  We have heard that our tenancy is probably about to become long term and secure so the threat of having to move no longer hangs over us.  On top of that I had a call from the DBT team to say if I could get there I could start pre-commitment therapy the next day! 

Since recording my DBT journey was one of the aims of this blog it seemed an appropriate topic to record here.  By the way, if you are unsure what DBT is, I have provided some links at the end which explain what it is fairly clearly.

http://en.wikipedia.org/wiki/Dialectical_behavior_therapy

http://www.mind.org.uk/help/medical_and_alternative_care/dialectical_behaviour_therapy

http://behavioraltech.org/resources/whatisdbt.cfm

http://bpd.about.com/od/treatments/a/IntroDBT.htm

I managed to get to the DBT appointment and met my therapist, who I felt reasonably comfortable with for a first meeting.  So, my DBT journey has begun.  I will say goodbye to John, my CPN of nearly two years, and continue my journey of recovery helped by Joy.

I can’t say that having had DBT spelled out to me I feel confident, comfortable or clear of the way forward.  That first appointment was a little overwhelming being given a lot of information and screening questionnaires.  Never the less, onwards and upwards for me!

Shifting sands of truth

If truth is absolute, concrete, unchangeable fact then people with BPD are nothing less than freaks of nature!  When truth is understood as honesty and transparency in the light of current understanding then perhaps it is possible to make sense of some of the rapid changes of self-perception experienced by many with BPD.

Today I am completely normal.  It feels as though BPD happens to someone else.  I am perfectly able to go out and get a normal, professional job in keeping with my skills, experience and qualifications, which I will be able to hold down.  If someone comes round I will be friendly and hospitable with no sense of awkwardness or anxiety.  I don’t need my medication and it makes sense to phone my keyworker and discharge myself.  Someone like me really doesn’t need mental health team services and I shouldn’t waste their resources.

I have been here before.  Often!  Just as I have to work hard to resist urges to self-harm I have to work hard to not impulsively do everything I think I can at these times.   They are so real at the time that resistance seems illogical.  However, experience says otherwise.  It doesn’t last.  Experience tells me that as suddenly as this insight appeared it will disappear and I will be left to deal with a package of initiated projects, job applications and letting down people who have trusted me.  These sudden moments of “normality” are almost worse than the constant “feeling rubbish” because they add to my stress, failure and the sense of being a source of distress to everyone in my path.

On the other hand, it is at these times I am inspired to start projects and schemes that are successful.  I am that normal person and that screwed up BPD wreck all at the same time.

In an effort to deal with this I have some personal rules for those “normal times”.  They have developed from experience (at least I can learn from mistakes).  These rules are:

• ·         I must not discharge myself from services unless I have been like this for at least two months.
• ·         I must not stop medications unless I have been like this for at least one month.
• ·         If having initiated a project, job/course application I am allowed to withdraw if I become ill at the thought of it.
• ·         I must not pull out of such applications if I just feel a little anxious, because some anxiety is normal.

In the last week I have had enough of these times to complete an application for training for a completely new career.  For me it is a step of faith.  I am hoping that by the time the training starts (if I’m accepted), I will have done enough of the DBT to be in a much more stable place, and genuinely able to do the training, and ultimately, the job.

So, all at the same time my self-belief is both true and not.  My truth shifts from hour to hour, and in that knowledge I try to plan a better future for me and my family.