Communication

I've been thinking a lot recently about social media and social contact in general. I give myself quite a hard time as I don't respond to messages or initiate contact much. I can see I have an email/facebook post/message/text etc but I often avoid reading them or responding. Even when I really care about the other person. And I am hopeless at initiating contact. I exist in my own little world quite happily. It's not that I don't like other people or want friends, or that I don't care, it's just that I find socialness really hard. Other people's emotions affect me, conversations and thinking about how to respond are hard work, and I am a real introvert, probably bordering on anti-social. 

I also have a really hard time picturing people's faces and remembering what they look like. I suspect this is related to my ASD tendency to avoid eye contact. I often look past people or in their general direction rather than at them. And because I can't see much out of my left eye, if they sit on that side of me all I get is a general impression of them anyway unless I turn my head so my right eye sees them. But even remembering my own family, my daughter, my parents etc is hard for me. I know people's hair colours, and I can usually pick if they've had a haircut. But facial features are hard for me to pull together in my head. My memory of people is usually with blank faces, sometimes with hair. General colours are there, but I can't picture certain features. And interpreting faces and expressions is not my strong point at all. There's some new research being done around this and the role of what's called the fusiform face area in recognising and remembering faces. This article and this article are particularly interesting. 

When I was a teenager, my dream when I grew up was to be a hermit. Preferably living on a remote property in the Coromandel where I wouldn't have to see anyone and I was a long way from anything except a good beach so I could surf as much as I wanted. I had no desire to have anything except peace and quiet. I still have that dream, though owning a piece of property on the Coromandel anywhere near a beach is probably way above my pay grade!

I carry a lot of guilt about not responding to people and messages. Right now I am avoiding responding to two text messages, two Messenger messages, a Linkedin message and at least one email. And that's just social stuff from the last two days. There's other messages I haven't responded to from weeks back. I'm also avoiding cancelling an appointment, emailing G's teacher, emailing an invoice (that one is a must do, I want to be paid!), emailing a potential client, making a doctors appointment.... the list goes on and on. The social messages are important to me, and they are all from people I like and care about. But I have a lot of trouble thinking of how to respond. Some of them want commitments from me, like making a time to catch up. Others just require a response to a comment or question. And the general household stuff just needs doing! But communication is often beyond me.

I think that would surprise a lot of people that know me. It's probably no secret that I am slow to respond to messages, but I feel like my level of procrastination is higher than most of my friends would guess. Maybe not my family though, they know how crap I am at communication! 

One of the things that they expect you to be able to do when you are a psychiatric outpatient is talk to people and ask for help. I however am an expert at avoiding phone calls at all costs. I find it incredibly difficult even when I am not in distress to pick up the phone and ask anyone anything. Add mental distress to that and I am almost a lost cause. Because of that, when I am unwell I don't get the support I need from my case worker and that often makes me frustrated and angry. I don't know how to communicate in a way that will achieve what I need. If I can force myself to ring I never manage to put across what I am feeling, despite rehearsing what I could say in my head dozens of times, sometimes for days before I work up the courage to pick up the phone.

Compounding my distress, often when I am mentally unwell my ability to put words together in a way that makes sense is often diminished. Sometimes my speech is really fast, or really slow and hesitant. Sometimes I stutter and stumble over words. Sometimes I get them mixed up and say day when I mean night, or yesterday when I mean tomorrow. Or I can't remember the words at all. Sitting there, knowing what you want to say but being unable to find the words to communicate so that you are understood, is really difficult.       

When you have BPD and you get frustrated or angry the emotions often come on suddenly, and very strongly. I can go from upset to intolerably angry in about 2 seconds flat, and that will make me do things I regret later. I have shouted at various mental health professionals, been rude and snarky to people, become mute when things haven't gone my way, point blank refused to do certain things asked of me, argued with people, stormed out of meetings, been fired as a patient by a psychologist and 2 psychiatrists, and generally thrown temper tantrums. I am not an easy patient to deal with and I'm not proud of that. All of these things are tied up in my inability to communicate with people, and my extreme sensitivity to anything that could be perceived as an insult or criticism. And once I am angry I tend to give in the the fury and it takes a while to come down from that. 

I think my social behavior, my difficulty in communicating and my inability to remember faces or read them very well are all tied in to ASD. My current theory is that my ASD produced many situations that I did not have the ability to cope with and caused me confusion and overwhelm. I didn't have a diagnosis, didn't understand why I was different and thought there must be major flaws in my personality. On top of that I was overwhelmed and confused much of the time. This, along with some less than ideal circumstances and trauma in my childhood and teens, caused me to develop dysfunctional coping skills which in tern has led to BPD. I also wonder whether the fact that I strongly believed my personality was flawed led me to try and suppress it or get rid of it, leading to the unstable sense of self that is so central to a BPD diagnosis.

I am not sure why it matters to me how I have ended up with the conditions I have. On reflection tonight I feel like if I can somehow find the connection between all of these things, these odd bits of me, then I can get a handle on "how to be me". Like trying to unravel a complex knot, where you feel like if you can loosen it enough you'll be able to find the end of the string and it will all just fall undone. I think I have this hope that one day that will happen and I will magically just know how to cope with my life.

BPD and me - Emotional dysregulation

It's been a really long time since I wrote and a lot has happened in that time. I stopped writing when I ended up on the psychiatric ward twice in March, and it's taken a while to recover.
I am planning to write about what happened and the last two months, but in the mean time here is the first part of a series of posts I have written called BPD and me.

BPD and me

BPD at it's core is behaviour that alternates between extremes. My emotions often feel like I am stuck in the middle of a storm, being pulled this way and that. My emotions appear out of nowhere and can go from 0 to 100 in 2 seconds flat. I often don't know what's triggered the strong emotion in the moment, and it's taken me a long time to figure out how to pin point the trigger. Because I have no control over my emotions I also feel like I have no control over the behaviour I have in reaction to them. The wild, angry, impulsive behaviour is an attempt to gain control over the emotion. I am aware that I can be full of rage, unpredictable and volatile. And I am ashamed by it and always vow to do better. Then I get triggered again and the same cycle repeats. I am not deliberately trying to hurt or upset anyone.

Borderline Personality Disorder basically means I exhibit a chronic pattern of behaviours based in my personality, which essentially means they affect everything: moods, actions and relationships. There are 9 main diagnostic criteria and a number of subgroups of the disorder. This means no one person with BPD is alike.

Extra sensitive and highly reactive emotions – Emotional dysregulation

I have emotional dysregulation which means I am at the mercy of my highly tuned emotional system all the time. It's like taking a bath in boiling water that everyone else insists is lukewarm. You might feel a twinge of irritation but an emotionally dysregulated person feels instant rage. Something that might make you feel slightly embarrassed might send me off to drink shots of vodka and/or cut myself to obliterate the feeling of overwhelming shame.

People with BPD have emotions that come up quickly and change quickly. I can flip from laughing and happy to shame and then anger and then sadness in a very short space of time and those emotions are very intense.

My emotions can also last for a lot longer than other people's do. A vivid memory for me is going to the movies to see 'The Book Thief'. If you've seen it you know it is a sad movie but not probably the saddest you've ever seen. For me, I was so overwhelmed with emotion that I cried for two solid hours afterwards. So hard that I burst blood vessels in my eye. At one point I struggled to breathe because I was crying so hard. I ended up having to drive to my parents house and they sat one on each side of me, holding on to me while I had a big meltdown over it. I remember Dad being so baffled, he kept asking me what was wrong and I just kept repeating the movie was so sad. He said "But you've seen sad movies before....'. Yes, I have, and they don't all do that to me. But on that day, that one triggered extreme emotions in me and I didn't have the capacity to deal with it.

Shame is something I feel very strongly and is a big trigger for me. It reinforces those experiences from my childhood that taught me that there was something wrong with me. In the scenario above, I felt a huge amount of shame for over reacting so much to a movie. It wasn't that my parents did anything wrong. But my Dad's confusion triggered shame in me, because I felt that my reaction was wrong or bad as it was so out of proportion. I didn't understand why I was so emotional, and neither did they. Through this misunderstanding I felt invalidated and very deeply shamed by the strength of my emotional outpouring. It took me a long time to understand that invalidating experiences can be ones like these where people I love are trying to help me and inadvertently reinforcing my negative self beliefs. And this comes back to my being extra sensitive - my emotions are dysregulated, therefore my reactions are quick, intense and out of proportion to what others would do. People's confused reactions can invalidate my experiences (Like the bath - it's not that hot, its only lukewarm, what is your problem?!) and cause shame, which perpetuates the cycle.

Sometimes I can appear emotionless as I have learnt to squash my emotional sensitivity in certain situations because of the disastrous consequences that it has had in the past. Subconsciously I've learnt “emotions are bad, I shouldn't have them” and so when I have big emotions I try and suppress them which usually results in an eruption at a later date. Often this will happen in the context of work, where something will trigger me but I will try and not react till I am 'safe' at home. When my daughter was younger (and even now) I tried to avoid letting her see me cry. So I suppressed anything upsetting. For a long time (years) this meant I couldn't cry. I'd done such a good job at suppressing upsetting emotions that they came out as anger and rage and impulsive actions rather than sadness and tears. This ultimately is what lead to my biggest major depressive episode aka 'my breakdown' in 2013.

In my next post I will explore another of the subgroups of the disorder.

Until next time....

Ka kite anō 

On BPD, anger and depression

Things haven't been going too well for me mental health wise in the last couple of weeks. Having BPD makes it hard for me to control my emotions, and my highs and lows tend to be much greater. Couple that with a tendency towards depression, and an Aspie brain, and you can see why my mental health seems to be a roller coaster ride most of the time.

I refer to my lows as episodes, much like someone with bipolar probably would do. During a low I can be extremely depressed, suicidal, indulge in various self harming behaviours, angry, emotional, belligerent, argumentative, manipulative....you get the idea. It's not pleasant for me or for anyone around me and it does a whole lot of damage to my life which I have to try and repair when I am well again. It's also very frustrating for me, because often I am aware I am acting badly but lack the skills to do anything but react.

One of the things I have been struggling with most during this particular low is anger. Often having a low with strong anger as the dominant feeling means a depressive episode is on the way. This is because as the anger or rage causes me to do things that I regret, I start hating myself for being like this. This begins a cycle of thought about how I am not trying hard enough, people would be better off without me, I'm not good enough, I'm a horrible parent/family member/friend/person in general. Then leads on to thoughts of death and finally suicidal ideation. Occasionally I hallucinate if I get really emotionally fraught - I have gone for bush walks and thought I have seen bodies hanging in the trees. 

So the anger I have been feeling this time has scared me. I have had several severe major episodes in the last 3.5 years and every time it is a long hard journey to climb out of that hole and keep living. My daughter has been and continues to be my reason for living, for climbing out of bed every day even when things were at their worst. But returning to a place where you can see a future again and have a little hope takes a lot of hard work. Severe depression is unlike mild and moderate depression in that the traditional things that doctors recommend don't work, at least initially. No matter how much exercise, good food, quality sleep, social connection etc you get, your whole life basically falls into a pit of doom and you become unable to do the most basic of things for yourself. At my worst I couldn't read or watch TV because there was too much effort involved in concentrating and trying to understand the plot, and my ability to speak was severely impaired because I had trouble following conversation and forming opinion.

I think what I also find hard about anger as a dominant symptom of a low is that it makes me inclined to be extremely difficult to deal with as a patient. As much as I need help I will take offence to suggestions or instructions from my nursing case manager and my psychologist. I will feel like nothing anyone suggests is good enough and I will interpret attempts to help me as "people interfering" or them "telling me what to do". I vocalise this opinion to the people involved and I have been effectively fired as a patient by several psychiatrists and one psychologist for becoming angry and verbally agressive in appointments (just to clarify - I've never hurt anyone, just damaged the patient/therapist relationship).

I am currently receiving DBT therapy for my BPD and have made huge improvement in a number of areas. But anger still remains one of the emotions I find hardest to control. 

For whatever reason, this morning I woke feeling better than I have done in a while. Work was busy but not as stressful as it usually is, and after work Little G and I went to a local swimming pool. We bumped into friends and she played with their girls while I chatted to the mums, then Little G and I swam laps together. After dinner her and I walked to the dairy for an ice cream and sat in the park to eat them. Her and I sat in companionable silence and I tried to just be in the moment, enjoying the last of the evening sun and the taste of the ice cream and the company of my child. I think my peace is slowly starting to return. I am hoping that I hit the bottom of the low and because I am getting better at resisting self harming urges and limiting angry outbursts, it hasn't lasted as long as it normally would.

I'll leave you with the lyrics from one of my favourite Six60 songs, and in their words "Ain't it good to be alive?"  That might be a strange thing to say when I've just spent this post telling you the difficulties of mental illness, but I believe that I wouldn't be the person I was if I was not forced to face these challenges.

SIX60 LYRICS

"Only To Be"

Only to be, I live in expectancy
No wonder it feels like this wasn't meant for me
Though my mind is so confined
That there ain't no point in reasoning,
Now that it's clear to see,
It was all in front of me
And I'm right where I'm supposed to be

Yeah yea, I'll live just turning pages
Yeah, well I know that it's worth the ride
Ain't it good to be alive?

So what will it be?
My dreams are my company
To lose what is me,
I follow the path I see.
My mind is so confined
That I don't even know where to begin.
But it took me so long to find
That I can leave it all behind.
Cause I don't got everything I'd ever need

Yeah yea, I'll live just turning pages
Yeah, well I know that it's worth the ride
Ain't it good to be alive?

Cause only to be,
Was all that you've got from me
You told me it's real,
And nothing comes easily.
Cause that was the truth, I was losing all my youth
To a world that's fit for someone else

Yeah, I'll live just turning pages
Yeah, well I know that it's worth the ride
Yeah, I'll live just turning pages, yeah
Yeah, but I know it was worth the ride
Ain't it good to be alive?

Opening post - introductions, dementia and death

So...this is my first post. I didn't intend to start a blog tonight. I had to sign up because Little G's homework included her commenting on one of her classmate's blogs. I've always wanted to have a go myself so here I am.


A little bit about myself and my life would probably be in order right now I guess. I'm a single mother in my 30's with one daughter (Little G) age 8, who is the light of my life. I have a busy professional job and I work full time. I also have severe recurrent major depressive disorder, Borderline Personality Disorder (BPD), and Aspergers. Little G has multiple diagnoses including ASD (the modern term for Aspergers), auditory processing disorder, anxiety, hypermobility of almost all her joints, mild low muscle tone, and sensory processing disorder. She's also gifted, with an IQ in the range of 145 - 150.

As well as my professional job I dabble in art when I have the time. I am current trying arcrylic and coloured pencil, but prefer detailed pencil portraits. I've also worked in watercolour. Tonight I am working on an arcrylic of a river scene. The painting's got to that awkward stage where it looks ugly and I want to give up so I've put it down for a bit. Usually that just means the detail needs to go on and it will start looking a bit more like what it's meant to.

On a different topic entirely, my grandmother died in December and Little G and I went down (travelled about 5 hours in the car) to the internment of the ashes in the weekend just been. Unlike her death and funeral it was just so hard for me to feel any emotion. The plaque is nice, and its nice to have something in memorial to her and my granddad, but I couldn't really feel attached to it at all. Once the body is ashes it loses its meaning for me. I think maybe because it's so at odds with my memories of her that my brain can't really process that the box of ashes is what's left of her.

My gran died of dementia which is such a cruel illness. Last year wasn't a great year for my family. January my Dad's Dad died of Alzheimer's and December my Mum's Mum died of dementia. Poppa had been going downhill for a long time and suffered several bouts of pneumonia, and then he lost the ability to form words and speak. After that it wasn't that long before he couldn't swallow and he had no control over most of his muscles. It was pretty horrifying sitting there watching his eyes roll back up in his head constantly and his mouth hang open and then keep snapping shut. His mouth had to be swabbed regularly to keep getting some moisture into him because he couldn't swallow. And of course all his dignity was long gone as bowel and bladder control was one of the first things to go, after his memory. It's just such a sad thing to sit there with someone who once commanded troops, ran a thriving business, had a dairy farm and five boys, and all the rest, and watch him essentially lose every function he'd gained since the day he was conceived.

My Gran's demise was just as horrifying but in slightly different ways. She had been in secure dementia care for about 3 years (my Poppa was also in secure care), and fell and broke her hip back in about July/August. From there she gave up the will to live. Going into hospital frightened her and she refused to take pain relief or even to eat or drink. She would not do the physio or get up out of bed and try to walk. The pain confused her because she could not understand that's what the feeling was, or associate taking pain relief medication with expecting to feel better. She just knew there were feelings, she didn't like them, so she wanted to be left alone because she was scared and confused. Once back at her care home she never really left her bed. She refused food and drink and her insides started basically breaking down. She took sips of water after a bit, and the odd teaspoon of icecream, but she could go days without anything. She started hallucinating. Sometimes her speech was clear and her legs would move around involuntarily (something to do with twitching because of the minerals leeching from her system). Sometimes she barely opened her eyes and her speech was garbled and unintelligible.

I never realised how long you could go without food and water if you are taking a few sips and mouthfuls here and there. Gran lasted roughly 2 -2.5 months of just a little food and water, and then about a week of none.

The end was so sad. We were chatting to her and each other around her bedside. The whole family were there - her 3 kids, her son-in-law & daughter-in-law, grandchildren and greatgrandchildren. We took turns sitting by her and stroking her hand. Then her breathing changed and stopped. Just like that she was gone. Suddenly there is just a body and no person in it. It's a bizzare feeling, knowing that even though they are right there in front of you they will never open their eyes or say anything to you again. 

Anyway, enough about death. I didn't start writing tonight with the intention of telling my grandparents' stories but it feels cathartic. There is plenty of other things I'd like to say about dementia, death and my grandparents but I'll leave it with this little picture.