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.

How to help......

Some of you may be wondering how you can support your friend or partner or family member as they live with BPD.  The following music video is the best tip I've found so far!

http://www.youtube.com/watch?v=sgRb_lfIZ6A

Who Am I?

1.      Identity disturbance: markedly and persistently unstable self-image or sense of self.

So, what I’m about to explain is part of the package – that doesn’t make it any easier to live with.  Well, actually it did at first, when I got the formal diagnosis.  At that time as I read up on it, suddenly things slotted into place and it made some sense of my whole life.  Once I got over the buzz of enlightenment life was just as difficult as before.

The trouble with experiencing and responding to life with the intensity us Borderliners feel is that it frequently gets exhausting and overwhelming.  Managing the complexities of relationships and responsibilities just at home is tiring, add to that work, friends, the general public, staff in shops and services, mental health workers and neighbours it is all too much.

I have developed a strategy for dealing with this.  I think everyone does it to some extent, but I get the impression I do it to a greater extent than the general population.  I live my life through different versions of myself for different contexts – a bit like wearing slippers in the house,  wellies for going out in the mud and trainers when going for a run.  The descriptions below are just snapshots because I really can’t explain it fully.  Now, before I introduce you I will apologise to all teachers and grammar pedants for the switches between first person and third person text.  Please accept this as an illustration of how difficult this is to explain with any clarity.  That said; let me introduce you to the most definable of my Pennys.

Penny 1.  My Private Self.

She is very shy and experiences a raw, ragged, screaming emotional pain much of the time.  For the most part this is kept inside her and does not get shown to others.  She shares herself with Joe (husband) and John (CPN) more than anyone else.  Sometimes the internal screaming gets too much and she needs to release the pressure through self-harm.   She spends a lot of time wishing she would die to end the distress, and simultaneously feeling guilty because she doesn’t want to hurt or let down her husband and daughter. 

When something “triggering happens”, a rejection, an altercation with call centre staff, an injustice against her, Penny 1 escapes into the open.  This is bad news.  At these times all the intensity, pain and scary thoughts escape in a tsunami of distress.  She may become suicidal on these occasions and it is probably as distressing for anyone around her as it is for me.  The thing is, like a tsunami, it will pass and the secret is minimising the damage while it happens.  I/Penny 1 need to not be alone at those times so I don’t act on my thoughts when in that emotional state.  Ideally, the person with me will know that it will pass and not to panic – I would prefer not to go for assessment at the hospital for in all probability by the time I got there things will be easing off.  I think these are the worst BPD moments for me.  I am out of control, over the top, a complete embarrassment to myself, a pain to anyone around me and helpless to stop once it starts.

Penny 2.  My Family Self

This one is the trickiest to explain.  She is made up of aspects of all the others, and she is probably the least predictable.  This is because I do my very best not to fake, and to be the best mum and wife I can be at the same time.  These two are fairly incongruous a lot of the time because in not faking, my private self can take over making me over reactive, unpredictable in mood, irritable, unmotivated etc.  If this happens I fail at being available, consistent in love and care, actively involved with my fair share of chores and so on.  However, when I do manage it she’s pretty good.

Penny 3.  My Social Self

When she is strong Penny 3 is fun, friendly and good to be around.  She is alert to the feelings and moods of others and easily gets alongside people if they are out of sorts.  Social self though a little shy can chat and once relaxed be cheeky and humorous.  However, when Penny 1 is fighting with her she finds it hard to sustain her presence very long.  Once she’s run out of steam Penny 1 will take over and I will become anxious, too quiet, agitated and uptight.  

Penny 4.  My Professional Self

Penny 4 is confident, competent, calm, calculating (and likes alliteration).  She is clear thinking and creative being able to see a problem and offer a solution in a moment.  She can have an idea, bring it to the table and make it happen.  If she could be like that all the time she would be a millionaire with a multi-national business!  The trouble with Penny 4 is that she is drains all her energy and resources with one short burst leaving the other Penny’s with nothing.  Two hours of work and there’s trouble at home and no point trying to be sociable even if she wants to be.

More Impact - Anxiety, work and travel...

1.      Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability or anxiety usually lasting a few hours and only rarely more than a few days).

2.      Transient, stress-related paranoid ideation, delusions or severe dissociative symptoms

Those are the criteria today’s blog mostly relates to.  The anxiety part of this is a bit confusing because I have a concurrent diagnosis of depression and Anxiety.  I think the BPD version of this is marked by its sudden impact and intensity as opposed to when it’s anxiety for its own sake which persists without ceasing for periods of time and builds up. 

 

It’s usually triggered by a relationship.  An individual (friend or stranger) may look at me negatively, or speak to me in an unfriendly or disparaging tone of voice and I will know that I am despised and hated.  Someone might giggle as I walk past or start whispering.  I know this sounds paranoid, and perhaps sometimes it is – however, it has been true on other occasions so my reactions are not without logic.

This this will affect the way I outwardly respond to the person or people (and that’s for discussion another day), it will also trigger an internal response which includes the usual anxiety symptoms of palpitations, nausea, lack of sleep, thinking too much about it, inability to settle etc.  often, in a situation where this has happened once, I will struggle to put myself back in that context.

For example, a while ago I had the opportunity to join in regular professional acting workshops in my area of expertise.  It involved a 50 minute train journey there and back, on a route I knew well so I decided to give it a try.  I managed it for three weeks until one week there was a significant delay and I was sat opposite a stranger who clearly though I was odd or something.  I was trapped in the window seat – I have not been able to travel that route since and have lost the chance to participate on on-going professional development.

Another time I decided to try and use the bus since I have a bus pass and petrol has become expensive.  I would normally use my car which keeps me safe from these anxiety triggering situations, but thought I would be OK because I was not travelling alone.  I was with my daughter who being very pretty and chirpy distracts attention from me without knowing it.  We made it into town without problems, did our jobs and waited for the bus home.  When I got on the bus I said where we were going and plus 1, and presented my pass which allows me to travel with a helper/supporter.  He asked me how many in an aggressive tone – I didn’t understand the question having given him all the necessary information and my anxiety escalated until I saw is face morph into a grotesque snarl at me and he let me on the bus anyway.  Now I know the morphing part was not real and just a stress induced thing – but the rest was.  Since then I have not been able to get that number bus in case he is driving.

Talking of morphing heads, there is a context where me and my husband are together.  We are regularly involved in this group.  A while back a minority had a very negative response to his work which has had a significant impact on the organisation and us as a family.  No-one knows who they are or why they did it.  This uncertainty of where I/we stand with people is extremely triggering for me.  When there it is not uncommon for me to look accross the 100 or so people in the seminar and see heads morphing into serpents and demons.  Though I know it is not really happening it is terrifying.  My CPN (John) assures me it's an anxiety/stress reaction and it should pass - but I wish it would pass faster!  In the mean time I put myself in that context as little as possible.

I am self-employed and am involved in the planning, managing and delivery of arts projects in the community.  We recently secured a large grant to deliver a county wide project.  This project has its own steering group.  One person on that group took a dislike to me when (as the top dog) I stood up to her and insisted on something she didn’t like so we stayed within the terms and conditions of the grant.  From that point on our relationship was unworkable, for her because she is stubborn and inflexible and for me because I was paralysed with anxiety.  In the end I had to recruit a new overall manager for the project and drop out of it completely because the anxiety was so intense I had had to start anxiety medication and I was at risk of becoming a danger to myself.

The Impact of BPD for me...

If you’ve read my introduction, particularly the bit that says, “ someone with BPD can have a long, happy marriage, bring up healthy balanced children and hold down a job” you’re probably thinking,

“So what’s the big deal?”  Therefore, I’m going to mention a bit of the impact just so you don’t get the wrong end of the stick.  This post relates to the following point from the diagnostic criteria. 

Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability or anxiety usually lasting a few hours and only rarely more than a few days).

Firstly, that long and happy marriage.  It takes hard work on the part of both partners to make a marriage work.  In a BPD marriage it takes the sufferer well out of their comfort zone and the partner needs to have the patience of a saint and love their husband/wife sooooo  much.

For example, my fear of abandonment and rejection is so great that I did not dare pursue a genuine relationship for more than 9 days (at which point I would coldly dump the poor chap) before it could happen to me.  I’m not quite sure how I broke this pattern (when aged 31) with my now husband – perhaps it was because he was also smarting from a rejection and we were therefore equally vulnerable.  Who knows?  What I do know is that when we made our vows:

I will love you in good times and bad.

I will love you when it’s easy and when it is not.

I will love you when love brings us close, and when love pushes us apart.

I will love you when my love is obvious and when it is hidden by my faults.

Please go on trusting me.

from

Patterns for Prayers and Christian Worship – Baptist Union of Great Britain

Oxford University Press, 1991

This has had to be the mantra of our marriage.  For example, if Joe (husband) should sigh when washing the dishes I will often hear,

“Lazy woman – she should be doing this.  I’ll be better off without her!”  Another time he will affectionately tease me.  One time I will laugh and tease him back, another, (and I don’t know which until it happens), I will be deeply hurt and believe that he must hate me.  I can wake up in the morning wishing I had died in the night then take my daughter at school where another parent may smile and be friendly, my mood will swing and I’ll come home singing, cheerful with a host of good intentions for the day.  An hour later the postman might bring a bill that we will struggle to pay, my mood will swing and the pointlessness and futility of trying to survive in this culture will overwhelm me and I will be back in the depths of despair.  These frequent and extreme mood swings are painful and horrible for me to cope and deal with, but they are equally awful for Joe to bear.  He watches it happen, helpless to stop it and stuck right in the middle of my stress, angst, fear, tears and irritability.  He supports me to stay safe and is her confidante when my daughter is confused and bewildered by my emotional roller coaster rides. 

These beliefs, thoughts and mood swings cause me much fear and distress and I am likely to fall back on my old friend / coping strategy of self-harm.  And before you jump to conclusions that this is manipulative and attention seeking behaviour, it is not.  I managed to keep my self-harm coping strategies secret right through my teenage years till I was 39 and the pressure of holding life together got too much and I asked my GP for help. 

The other side of all this – I mean, he would be mad to stay with me if that was the whole picture.  I offer him compassion and support when he is down.  I understand when he gets ignorant criticism and rejection from the people he works to care for and support.  I allow him to have bad days, because boy do I know what it’s like!  Those vows are a two way street – we meant them then and still do today.