Progress is a series of tiny steps

It’s been a while. I was pretty unwell for a while there and really struggling. When I felt ready to write again I had accidentally logged myself out and couldn’t figure out my password, and Blogger couldn’t verify my identity so I was unable to change my password to get back in. Thankfully I eventually figured out I had been using the wrong email address to try and log in…..

Anyway, that aside, it’s nice to be back writing here again. I have written some stuff while I’ve been off Blogger so it’s not like I haven’t been writing at all, it just hasn’t been quite the same.

The last month or so has been really hard. I’ve felt very down and things have been struggling along. I went through a period of not being able to get out of bed in the morning which is unusual for me. When I say not being able to get out of bed I mean consistantly running half an hour or more late for work. I set at least 3 alarms and I was turning off one or two of them in my sleep without even registering that they had gone off. Some mornings I’d only manage to wake up 20 minutes before I needed to be out of the house and I was not showering for several days in a row because I didn’t have time or the energy.

Little G was quite difficult to deal with towards the end of the school term. Her anxiety levels were high and I was having trouble responding to her from a calm, empathetic place. She can read me like a book and her anxiety often feeds off mine so that wasn’t helping, plus she also had some pretty big stuff she was dealing with emotionally. Her Dad was getting remarried and she was scared and unsure about what that was going to mean for her. When her anxiety levels run high she attempts to control all the other things in her life to make her feel safe and secure. I’ve been there, I get that, but as a parent it’s incredibly frustrating to have an 8 year old try to run your life and your household. This leads to a battle of wills over almost everything, including school refusal which she has a long history of doing.

When I’m unwell and I have this child refusing point blank to go to school or do anything she’s told, and throwing fits and stomping off every fifteen seconds, I struggle. My emotions are already hightened and so it doesn’t take much to throw my system into high alert and it takes a long time to calm down again. I have constant thoughts about how I have ruined her, how it’s my fault she struggles with anxiety in the first place, my fault she has the issues she does.I think I should be doing more for her. I worry that she’ll turn out like me and have to deal with mental illness throughout her life. My brain tells me I am a terrible parent and a pathetic person and that she would be better off without me.

With these emotions running around in my head constantly, they play havoc with the rest of my system too. My stomach oftent feels like it’s cramping or has butterflies, my heart palpitates, I get headaches and pain in my face from clenching my teeth and a stiff back and neck from hunching up, almost as if I am physically trying to protect myself. And let’s not even mention the effect of all this stress on my bowels!!

Through all of this, plus work stress (major deadlines to meet for various clients at this time of year) and extended family issues, I’ve had individual events that each have momentarily pushed me off balance. One of those was an appointment I had with my psychiatrist at the end of June. Historically I don’t have a good track record with psychiatrists. I’ve been under the care of Community Mental Health (CMH)/psychiatric outpatients for about 3.5 years and in that time I’ve seen something like 8 different psychiatrists. Unfortunately that’s the way the system works – you see a registrar and so every 6 months the registrar assigned to that consultant moves on and you get a new one. Sometimes you get that registrar back again after 18 months or so when they have had a number of rotations. I’ve been under the care of the consultant for ‘red zone’ the whole time, but I’ve only actually been seeing the consultant himself instead of the registrar for about a year. In that time there’s been two or three different ones because they change jobs or leave.

(*registrar = trainee psychiatrist with degree and 1-4 years experience, consultant = fully qualified and ‘boss’ in charge of registrars for a certain area. The region I live in is divided into zones by CMH and I live in red zone).

So the consultant I saw at the end of June I’ve seen twice before (roughly every 3 months), but neither time went particularly well. I tend to be difficult to deal with as I don’t understand what they are asking for or how to answer their questions, and I take offence to some of the things they have to say. For some reason the whole situation upsets me and the appointment often ends with me having said something I shouldn’t have or refusing to speak to them at all. When this happens I know I am not behaving well but once I have been triggered I find it incredibly difficult to act rationally as my emotions are fully in the driving seat.

In the middle of all this Little G has been sick, we’ve had school holidays, we are supposed to be following a plan from the continence nurse for her to try and sort out her bed wetting (not happening – she refuses to follow it), I’ve had family issues and financial pressure, Little G’s Dad got married, two of my colleague resigned – one I worked with particularly closely, and my back problem has flared up again. Not to mention that Little G was away in the school holidays so I was on my own for a week. And then the appointment with the communication and behaviour team that I’ve been waiting for since Little G was diagnosed with ASD two years ago finally happened, and it wasn’t quite what I’d pictured.

Suddenly I again felt all this guilt and doubt about my child and shame about my own mental health affecting her, and scared of what they might suggest. I’ve hung so many hopes on this appointment and to finally get it and find that I was going to be expected to carry out their plan to change Little G’s behaviour was very daunting. I don’t know what I thought they would do but I hadn’t imagined that I would be such a key part of it. For some reason I had thought it would be more about them working with her directly. And that really threw me. Because what if I wasn’t good enough? It would be my fault again if the plan didn’t work. I doubted my ability to carry anything out and suport her.

I freaked out. I think I subconsiously equated her communication and behaviour problems to my own as a child and I don’t want her to go through what I have. The pressure of having to be the person to help her when I am so fully aware of the possible consquences of getting it wrong tore me apart. Then I started blaming myself for my poor mental health and the damage I’d already done to her. I know attachment is really important and forming a secure bond with your child sets them up for the best possible outcomes in life. I also know that I have been inconsistent and at times very unwell and that Little G’s and my bond is not as secure as I’d like. I’m working on it but I’m always scared I’ll screw up.

I’d already been having suicidal thoughts for weeks. I live with them. Sometimes those thoughts are louder and sometimes quieter but they are almost always there. These are the ones that tell me I want to die, that no one would miss me, that there is no point to life, that people would be better off without me being a burden on them. When I really freak out I start also hallucinating suicide scenarios, which tend to scare me even further. I get in the car in my garage and I can see myself closing the doors, putting the windows down and killing myself with carbon monoxide from the exhaust fumes. I see myself in the bath with blood running down my arms, or head in a noose hanging from a tree. I frequently picture myself walking into the sea with all my clothes on and drowning. When I’m driving I can see myself plowing into power poles or into something solid.

Living with these thoughts and hallucinations is really scary sometimes, particularly when I tend to be impulsive and I’m aware I can’t always trust myself when I feel like this. Telling anyone you have this mess in your head is impossible. I still can’t quite believe I’ve written it down because it almost looks worse on the page than it did in my head. How do you tell someone who cares about you that you want to die so much that you vividly picture multiple suicide scenarios daily, sometimes hourly.

And yet, and yet…. if there is one tiny kernel of hope in all of this, it is that I am still here. I am still taking things moment by moment. I mostly remember and follow my crisis survival and distress tolerance strategies. I mostly take care of myself. Any one of these stressful situations would have triggered a full meltdown with alcohol and a lengthy cutting session only a few months ago. Not to say I haven’t cut because unfortunately I have. But just a bit and it was the first time in four months which is something I feel proud of. I am ashamed that I have self harmed again, but I do acknowledge the progress I am making. Small steps. Progress is a series of steps, and even if they are tiny I am making them.

One song I am listening to a lot is Let It Be (The Beatles). It fits nicely with the mindset I’m trying to cultivate.

Kia Kaha

An update to my post on depression

I know I’ve already posted tonight but I really wanted to write an update to my depression post last week.

I have been having a really hard time in the last couple of weeks, first with stress and anxiety and now feeling depressed and being unwell with some sort of virus. Work has been hard for various reasons, I’ve had to take my cat to the vet, we have a problem with the hot water at home, my daughter has a virus causing a full body rash, she’s wet the bed every night…the list goes on. Shit happens in life, and it happens to all of us.

When I wrote my last post on depression I didn’t really think about who would read it or what your actions would be. All I wanted to do was give some insight into what being depressed looks like. That’s its not always the sterotype image of someone clutching their head in their hands and crying. I know I have friends out there who also stuggle, and one of my motivations is to make sure they know they are not alone. That no matter how together someone might look from the outside, we all have our own challenges.

I also find it incredibly hard to ask anyone for anything. One of the things that always gets said when there is general talk in the media or on social media about New Zealand’s terrible suicide rate (we are world number 1 for youth suicide – 16 young people per 100,000 die by suicide every year), is that we should make sure people know they can ask for help. Yes, by all means make sure they know there is help available, but making that leap to asking for it is something that I am only just begining to learn how to do, and I’m nearly 20 years older than some of those teens going through this.

I don’t know what the answer is, all I know is that I am grateful for the wonderful friends and family I have. Friends like Mrs W, who came over with lunch on Monday bearing a box of food, fruit and eggs so it wouldn’t matter if I couldn’t go to the supermarket. Or like the people who messaged me and asked how I was, and S who invited me on a bike ride. And my amazing Mum who delivered 3 meals worth of soup, plus scones and french bread for me. My Mum and my sister helped me do dishes and sort/fold/put away washing, my Mum tidied Little G’s room and my Dad cooked me dinner. One of Little G’s friend’s Mums has looked after her for me. I didn’t expect the help and support I received but I am incredibly grateful to all of you for your thoughtfulness.

Thank you, thank you, arohanui (much love)

Unconscious thought, Freud and me

I have been reading about unconscious bias recently, and the way it reinforces what we already believe in. Unconscious bias makes us tend to like people who think the same way we do, who have similar backgrounds and upbringings, and even look the way we do. This has a number of effects on how we view the world.

Bias shapes our world view because it provides a shortcut for our brains when receiving and reviewing new information. If we immediately disregard anything that doesn’t fit with what we already know or what feels familiar to us, then over time we develop a narrower world view. We will get less exposure to ideas, to different ways of life, to different situations. Our ability to have empathy for people diminishes if we can’t imagine ourselves in the situations they find themselves in.

I became interested in what my own unconscious biases were when I realised after reading information about the subject, that just declaring you were open and tolerant of others wasn’t enough to actually override the effect of bias on your thinking. I could tell myself all I liked that I didn’t discriminate against certain groups but that didn’t make it true. And in fact, all the reading I was doing was really reinforcing my unconscious bias as I was subconsciously filtering what I chose to read, and the information I was retaining.

Then I asked myself why I really cared about it at all. Why did I need to think about how I was thinking? I got stuck on this concept for a number of days, wondering why I cared about what my unconscious beliefs were. Sometimes when I have an idea that fascinates me I get obsessed with it, research it to death and read everything I can about it. But this one felt just out of my reach, like I couldn’t quite grasp something really important about it. I couldn’t even begin to narrow down a definition of what was in my head so I could type something in a search engine.

I put it down for a bit, got side tracked in other things as I tend to do. I happened across a blog post about transference which is where “we unconsciously transfer feelings and attitudes from a person of situation in the past on to a person or situation in the present”. Basically, when a person or situation reminds you of something else you transfer some of the feelings you have about the original person or situation on to the new one. I was fascinated by this, in part because of the link between these unconscious thoughts and the unconscious bias idea I had been trying to get my head around. In both of these phenomena the mind is taking what we have learnt in the past and applying it to the present, effectively creating a shortcut for thinking. This sets up a situation where we learn something and then potentially perpetually recreate and reinforce it.

I started to get really excited by the idea that all these things could be impacting on the way I see and react with the world and I am not even aware of any of it. I looked up Sigmund Freud who is the founding father of psychoanalysis – a type of therapy in which transference plays an important role in making the unconscious conscious.

One of the first things that came up a picture of Freud’s unconscious mind model, in which he used an iceberg to describe the three levels of mind. The tip of the iceberg is shown as the conscious mind, which is all the thoughts and mental processes we are aware of. The pre-conscious is the “working memory” type area of the brain, and then the unconscious mind, the bit of the ice berg well under water, is everything that we are not conscious of that influences thoughts, attitudes, processes, feelings and behaviour. Freud believed that our feelings, motives and decisions are influenced by past experiences and this is stored in the unconscious. While I don’t agree with all of Freud’s work, I do believe, as he did, that more of behaviour is governed by the unconscious mind that we realise.

And by putting all this together I had my answer. I cared about unconscious bias, and about situations of transference, and my core beliefs, because I am trying to change my pattern of behaviour. BPD is marked by (among other things) patterns of instability in mood, behaviour, self image and functioning. I need to be aware of the unconscious thoughts and beliefs my brain is holding in order to disrupt the pattern and then change it.

Therapy has allowed me to look at this by working backwards – from the action such as impulsive or suicidal behaviour, back to the thought patterns and then back further to the trigger for those thoughts. But by also trying to uncover the unconscious core thoughts and beliefs held by my brain I should be able to work on changing them before I am triggered.

So I have decided to see if I can discover what my unconscious thoughts and biases are. Hopefully this will help me discover more about my patterns and how I can change them to bring more stability to my life.

Ka Kite Ano

Depression

This is the not the post I expected or even wanted to be writing tonight. In fact, I am halfway through writing on a completely different topic, which I had intentions of finishing tonight.

But here I am. And that’s because I’m struggling with my depression again. I knew it was coming. I could feel it in me waters (as Kath from ‘Kath and Kim’ used to say). It has a pattern which I can recognise now. Not necessarily do anything about, but recognise.

Over the last few weeks my anxiety has built up. Every time I feel my anxiety getting worse I wonder what brings it on and this time has been no exception. There are always events in my personal life, little and bigger things which seem to have a larger impact on me than they would on other people. That’s part of my BPD – limited ability to deal with the stressors of everyday life. I feel everything at 1000% so something that’s small to someone else is magnified for me. And those events buffet me back and forth like the strong wind toying with a small sailboat.

This time, as with all the other times, I started trying to shore myself up. Increasing the exercise, making sure I had books to read and an art project or two to keep myself occupied. I joined the gym because one of my theories was that high intensity exercise would help manage my need for endorphins, which is what was driving my cutting behaviour.

My stress at work increased and my insomnia returned. I know what’s coming, I can feel it, I can almost see the black cloud about to engulf me. I can’t shake off the overwhelming, crushing, defeated feeling I have when I am not making head way with my work. I have so much on that I can’t prioritise effectively, and I know I’m not spending my energy in the right places. I should be able to handle things, I know what needs to be done and I’ve no urgent deadlines so no need to stress. But my anxiety is making me feel sick every time I think about meeting a client or picking up a file. I want to double check myself every time I make a decision but I am aware of time pressure – the more time something takes the more cost on the client’s bill. So I force myself to go with my instincts. I force myself to walk into each meeting with a smile on my face and pretend the confidence I wish I had.

Things get worse though. I know how important sleep is to my wellness. My basic wellness plan for when things are starting to get bad is eat good food, drink water, get exercise and get enough sleep. When these things start to fall that’s when I know the darkness is creeping over my last line of defence.

I go to bed on time. I cook nutritious dinners (though I do eat chocolate afterwards…). I make it to the gym four times a week. I am completely exhausted. But when I go to bed at night I lie there wide awake. Not thinking anything in particular, but not sleeping either. When I do fall asleep I roll around restlessly all night long, unable to get into a deep sleep.

The less sleep I get the more cranky and depressive I am. Everything makes me want to yell and hit and stomp around, or put the covers back over my head. Sometimes both.
Slow driver? Cue road rage from me. Child not picking anything up or putting it away? Cue yelling from me about irresponsibility and how I should throw it all away. Someone makes a mistake? More rage from me about imbeciles who can’t engage their brains. I park too close to one side of the garage or the other? I’m an idiot who can’t get anything right.

I went to the gym after work yesterday hoping the endorphins would kick in and I would feel slightly better, or at least tired enough for a deep sleep. All that happened was that I was too tired to go and get milk and bread, so we had nothing for breakfast this morning.

The cupboards are bare because I haven’t done any grocery shopping. My child is a chronic bed wetter and there are piles of washed laundry on the floor in the lounge as they have fallen from the chair they were on. There is washing hanging on a clothes airer in the lounge and washing on another line in the garage. There’s more washing to be washed in a pile by the washing machine, and in a pile in the corner of the bedroom (just to be clear – everything with pee on it is washed every day – it’s the other stuff that piles up around it). My kitchen bench is full of dishes, the bin is full, the bathroom needs cleaning, the vacuuming needs doing and paperwork for the last two months is spilling out of the mail rack.

I am hiding from everyone and everything and all I wanted to do this morning was put the covers over my head and close my eyes. I have no desire to do anything. TV doesn’t interest me. I can’t be bothered reading or drawing. I don’t want to go to the gym or talk to anyone. Every day I get up and pretend to be a person. I slap on the face I show to the world which says “I’m doing ok” and I go to work.

Then at night, when I am tired and my defences are down, thoughts like why bother and I’m no use to anyone creep in. Don’t get me wrong, I’m not suicidal. The depression is just asking me what the point in trying is. When I’m like this and life seems so endless and grey and hopeless, I can’t remember the feeling of happiness. Intellectually I know that I was, and it was only a few short weeks ago. But the memory of what that feels like is gone.

So one of the ways I try and remind myself is singing. When I am feeling happier I sing along to my favourite songs. I know it sounds odd, corny even. But my most reliable measure of depression is whether I am singing in the car. If my favourite songs come on and I don’t hum along or sing then I know I’m in deep. But I can remind myself what being happy is like by remembering when I have sung. Turning up the music and connecting to it by singing releases something in me.

This is another thing I have stumbled on to by accident but it is apparently used with dementia patients as our brains are hard wired to connect music with long term memory and deep emotional recall. You can read more about this here.

So, I wanted to share this with you all so you can get a sense of what depression can look like. And for those of you with depression, who are also struggling, you are not alone.

The good thing about knowing this was coming was knowing that it will end. After the stress and the anxiety comes the depression, and then it will pass. That doesn’t make it any easier, or suck any less, but it will pass. Hold on till it does.

Kia Kaha

Self harm and me

Trigger alert – today’s post talks about self harm and it’s causes. If self harm is a problem for you please get help from a professional. This post describes my experiences and is in no way designed to encourage anyone else to self harm.

Just as an added note, I wrote the following post last weekend. I debated all week about whether to post it because the issue of self harm carries a huge amount of stigma. Many people know I have this problem because the scars are hard to hide, but no one (with the exception of my family and one other person) has ever raised the subject with me.

The shame and stigma attached to self harm are overwhelming at times and it is perhaps one of the hardest aspects of mental illness to discuss. Many people can not understand why you would want to harm yourself, particularly using the method I do which is cutting. The following post describes what leads to this behaviour and the biological reasons why.

(Sunday)

Today….today was unfortunately one of those days that is so common for me as a person with BPD. A day where my moods changed with speed of the wind outside, sweeping away all traces of what I felt previously and hammering me again and again with intense emotion.

This morning I woke feeling motivated. Little G went off to her father’s early, and then I got on with the washing and ate breakfast. I had decided to spend another hour or so in bed as it had been a long week and I was trying to take things easy so as not to get sick.

All morning my brain fought me. It was sunny outside and there was a war raging inside my head. One side telling me how lazy I was, and that I was wasting sunshine and time laying in bed reading. And the other side telling me I needed the rest, to give my body a chance to recharge and get ready for the next week. I recently found an article about boring self care and her drawings were the main reason I managed to stick to my guns this morning and try not to berate myself too much for resting and reading. She does cute little cartoons about the little things we can do to take care of ourselves, and today I knew that rest was what I needed. Didn’t stop my brain from trying to take over with my normal pattern of non stop activity to fill a long day by myself though.

After lunch I stopped feeling like I should do something, and started feeling like I didn’t want to do anything. This was particularly bad timing as this is when I’d actually planned to get moving and do chores and buy groceries. It took me several hours to force myself to have a shower and get lunch, put on shoes and go outside for a walk. My brain kept distracting me and I was having trouble focusing on what I should be doing. I wasn’t actually doing anything during this time except wandering around pausing and looking at all the stuff I should have been doing. The thoughts in my head about me being useless and lazy were pretty loud, and were drowning out anything much else at that point.

I finally got outside and did about half an hour’s walk. This week’s goal is to be consistent with my exercise, and try and do 20-30 minutes on 5 or more days. I walked yesterday and today so was reasonably pleased by the time I got home. Off to the supermarket and for some inexplicable reason, the person in front of me drove at 35 km/h the whole way (speed limit is 50 km/h, I normally do more like 60!). The frustration and anger that overtook me was incredible, I was imagining setting up a punching bag and slamming my fists in to it over and over. After 5 minutes I was in full blown rage mode, though my rational/logical mind kept trying to tell me I wasn’t in any hurry and that I should calm down.

Pull in to the supermarket car park and park the car in the far corner away from anyone else so I can have some deep breaths and calm down. Then on into the supermarket. After only a few minutes inside I start feeling really upset, then a sad song comes and I have tears in my eyes while I am picking out apples. After telling myself that I’m being ridiculous and have no reason for crying, I manage to pull myself together enough to continue with the shopping.

In the supermarket environment I’m overwhelmed by the number of people, the bright lights, tiredness and the music. My physical senses are often in overload in settings like that due to my autism.

My emotions have run the gauntlet from motivated to hyped up, to depressed, then to confused and distracted, happy after my walk, then tired, angry, full of rage, then to sad (complete with tears). I feel so overwhelmed by the large swings in my mood that my brain keeps trying to default to its standard method of taking the emotional pain away.

All I can think about is drinking alcohol and cutting myself. I’m severely triggered walking past the wine and beer aisles. The craving for a drink is so strong that I can’t stop myself from choosing a bottle of wine to take home, all the while knowing it is the first step on a disastrous path that only has one end.

I’m well aware of how destructive the drinking is, and how once I start drinking then what little control I have over my self harm urges subsides. This usually leaves me sitting in a pool of blood with a razor blade in my hand at some point.

I have to walk past the utility knives, don’t need those as my house is littered with them, and anyway they don’t provide the deep cuts that give me the relief. They have long since been replaced with razor blades.

I’m not buying blades today. My hands are shaking on the trolley as I walk past but I try and tell myself that if I don’t buy them then all I’ll do is drink. Unfortunately, this has not proved true in the past. I know full well how to take a razor apart when I’m drunk and in the grip of my compulsion.

In situations like this in the past I’ve gone straight home after the supermarket, opened the bottle, sat down and cried about what I’m about to do. I’m normally a spirits girl and a shot is all it takes to release the flood gates. That is when the blades come out and I promise myself it will just be one or two cuts. That I’ll see the blood and feel a bit better and then I’ll stop. However, it usually takes 8 – 10 shots with small chasers of coke before I’ve cut myself enough to be able to control it enough to stop.

It’s hard to describe the relief the cutting provides, and it can be different depending on the circumstances at the time I have the urge to self harm. For me, self harm is a compulsion. I’ve used it so many times in the past that my brain is wired up to want to complete acts of self harm to relieve my emotional pain.

Part of the reason for this is because at some stage I accidentally tapped into the brain’s ability to use it’s natural painkiller, endorphins, to relieve my emotional pain. Our human brains are wired up to sense both physical and emotional pain using the same two areas: the anterior insula and anterior cingulate cortex. When you get hurt physically, your brain registers the pain in these two areas and prompts the production of endorphins, which is the brain’s own natural morphine. Wikipedia says “The principal function of endorphins is to inhibit the transmission of pain signals; they may also produce a feeling of euphoria very similar to that produced by other opioids.^[3]

Basically this means that if you cause yourself physical pain, the body produces endorphins which then act on your emotional pain as well. In terms of self harm, this is why it can be so addictive – create enough physical pain and your emotional pain will be relieved with endorphins your body has produced to get rid of physical pain. Unfortunately there is no way to stimulate an endorphin response to emotional pain without causing yourself physical pain. And it seems (though more research is being done on this) that you can not relieve emotional pain with painkillers made for physical pain.

The upshot of all this is that every time I create physical pain in response to my emotional pain, I force my body to produce endorphins which relieves both types of pain. This creates a feedback loop – emotional pain leads to physical pain which causes endorphins which relieves the pain. And every single time I use that response to my emotions, the feedback loop is reinforced, making that connection stronger and stronger. This makes the urge to harm myself become a compulsion when faced with situations that trigger overwhelming emotions.

This is not the only reason people self harm. Sometimes for me it is about punishing myself, causing myself pain because I believe I deserve it. Sometimes it is more about the scars and pain on the outside matching the black deadness you have on the inside. Often it is a combination of things – a triggering event may cause the compulsion but may also cause me shame because I’m not living up to my own expectations. I can spiral down as thoughts about what a terrible person and waste of space I am go around and around in my head.

The therapy I’m doing, which is a combination of acceptance and commitment therapy and dialectical behavioural therapy with a few other things thrown in, is teaching me to recognise my triggers, to try and prevent them, and what to do when I am in this situation. In order to remove my self harm behaviour I have to have something to replace it with. Not only do I need to recognise when I’m having thoughts that lead to overwhelm, I have to self care skills, triggers, be able to tune in to myself and my surroundings (mindfulness), and a range of coping skills to suit all sorts of situations.

So, last Sunday, despite the fact that I brought the wine, I came home and I did not drink it. I put it away at the back of the cupboard, then I ate dinner. I had forgotten to eat much during the day and it wasn’t until I did some mindfulness on the way home from the supermarket I realised I was hungry. I switched on Netflix and watched a funny movie, with my soft sensory blanket on my knee and the cat on my lap. Then I got on here and wrote about my day. I did some other writing which was a bit of homework for my therapist and finally sat down to read. Crisis averted, till next time.

You might think, reading what I did to cope with that overwhelming urge to self harm, that the things I did were nothing special so how could they possibly have helped if I was really that bad. The answer to that is two fold. One, the whole time I did the things I outlined above my body was craving endorphins. The thoughts don’t leave my mind, I just try and distract myself from acting on them. Two, it’s taken a lot (a lot a lot) of hard work over the last two years to get this far. I have crisis strategies like holding cubes of ice (either in my hands or against my arms), submerging my face in cold water, intense exercise (like short sprints), and paced breathing. But first I try distraction and soothing my senses with things I know work for me (a really good link explaining this is here.

Things are slowly getting better but sometimes I fail, and sometimes I fall. I am always going to have to be mindful not to fall back in to old patterns. At times the amount of work I need to do to get and remain mentally healthy looks like an enormous burden. But I have learnt that there is a time to look at the big picture and a time to look only a little way in front of you. Sometimes it’s best to try and deal with today and plan just for tomorrow rather than get too tangled up in what the future might hold.

Ka kite ano

Little G and my mental health

Thank you to all those people who commented on facebook and here about my previous post. It was amazing to get that much positive feedback as I was really apprehensive about putting that sort of information out there about myself. It’s a very humbling experience to find so many people appreciate my honesty. I had to think long and hard about whether putting my experiences online was the right thing to do, because I do have a professional job and the stigma is very real. Not from my co-workers (love you guys!) but because I work so hard to present a calm, capable front to my clients and I didn’t want to do anything that might cause any of them to doubt my abilities (if they ever find this).

I also have to be cautious on Little G’s behalf for several reasons. I am open with her about my mental health as much as I feel is age appropriate. I have to try and make sure she doesn’t feel any obligation to try and make me better, or feel happy, or to take care of me. I repeatedly explain to her that I am her Mum and I do my very best to be as stable as possible for her. It is my job to take care of her and provide for her, not the other way around. She loves to do things for me like make me breakfast and she is very aware of when I am not well. She can read the expressions on my face when I’ve had a bad day better than anyone else I know. My top priority is to make sure she feels safe and loved, every single day.

When I was in hospital in March it affected her considerably more than I expected it to. She was told that I was in hospital, and she stayed with her grandparents and auntie. I didn’t want her to come and see me, partly because I was very unwell and I thought that might scare her, and partly because I was worried about exposing her to some of the strange behaviour of the other unwell people on the ward. I had about four days in there, then I was out for a few days at my parent’s place, then I got worse and had to go back for another four or five days. She was very worried about me, and she was noticeably sad at school. Her teacher was concerned enough to mention it to me the following week, and several mums also told me she had said various things to their kids about how upset she was that I was in hospital.

It’s very awkward to explain why you are in hospital to people when your child has said ‘Mummy has something wrong with her brain’ and everyone’s minds jump to cancer or brain tumour!! I try as much as possible to be honest, especially in situations like that, because I don’t want people thinking I have cancer and I don’t want to be embarrassed because my brain was unwell instead of say my heart or my kidneys. But telling another parent or your child’s teacher you were on a psychiatric ward is not exactly my idea of fun, and it sure isn’t for them either! There’s always awkward silence while you can almost see the wheels in their brains turning, trying to work out what to say. My embarrassment is less about what they might think of me, and more about having put them in a position where they don’t know how to respond.

Then there is the inevitable variation on the theme ‘hope you are feeling better now’ and it’s difficult to know what to say to that. It’s mental illness and you don’t just recover or feel better in a few days or even weeks. I always appreciate the sentiment but if I do my default and say ‘yes, much better thanks’ it’s basically a lie, but the truth is socially inappropriate. This is where my Aspie brain gets a little tangled up in whether honesty and truth should win out over social convention…..

Little G’s support worker also reminded both of us a couple of weeks back that kids can be very cruel. She said that it is good to be open talking about mental health, but that Little G needs to respect my privacy and not tell everyone her Mummy has a mental illness. Partly because it’s my choice whether to share that, and whom to share that with, and partly because kids can and often do tease children whose parents have mental health issues, saying their parent is ‘mental’ or worse. Those are two things I hadn’t really thought about and I appreciate her reminding us of those issues.

Over the holidays Little G got to attend the holiday program put on by Family Link where she met other kids whose parents have mental illness and/or addictions. They did some fun activities and learnt about the brain and how it works. I think the best bit for her was learning that there are other kids out there living in the same situation as her. Their parent is struggling with similar issues to those I have and they are going through the same things.

She’s still working one on one with her support worker too. At each session she learns about various mental illnesses, the symptoms of my particular one, about feelings, what makes her happy, and what to do when I am unwell. We’ve put a support plan in place so she knows what will happen if I go to hospital again, and it’s been reinforced to her that my mental health is not her responsibility. She seems much more settled and less anxious now so it seems to have paid off.

I seem completely unable to write a succinct blog post to I’ll sign off here.

Ka kite ano

Tattoos and the Pink Panther

I’ve been thinking of getting a new tattoo. I already have two – the ironman symbol just above my ankle and the word courage written on my wrist. I did ironman in 2008 (ironman is a long distance triathlon – 3.8km swim, 180km cycle and then a full marathon 42.2km run) so that tattoo commemerated the achievement. The word Courage is a reminder to keep picking myself up and trying again and again even when things are difficult and I want to opt out. I read a quote once that said something like
“The greatest victory in living lies not in never falling, but in rising every time we fall”. So I have courage written on my wrist not just to remind myself to keep going, but also to acknowledge all the times when I have fallen and picked myself back up again.

For my next tattoo I was originally thinking of two things which are symbolic to a lot of people. A lotus flower grows and blooms in muddy water. It symbolises new beginings and the ability to rise above obstacles. The hummingbird represents overcoming difficult times and can also mean joy and hope. They are beautiful birds and I also love the colours of their feathers. Of course there are other interpretations of these two things but to me, together the lotus flower and hummingbird would mean acknowledging the difficult times I’ve been through with my mental health, the growth I’ve achieved and the hope I have for the future. However….once I started looking around at ideas I realised how many people have this same idea and started wondering whether I would be better with something more personal to me.

So what I am thinking about at the moment is the Pink Panther (cartoon character) as an artist like he appears in either The Pink Painter Show (season 1, episode 14), or The Pink Painter in the 1993 series.

The Pink Panther is pretty special to me. When I was little my godfather brought me a soft toy one back from England. I never had a teddy bear, just my Pinky as I called him. He was what I cuddled when I went to bed, and what I reached for when I was upset. Then, when I got married, I was given a large pink panther on my wedding day as a gift by my immediate family. My support crew for Ironman all wore pink t-shirts with a picture of Pink Panther on them and “Go Iron-Cat” on the back. And a few years ago when I finally had to throw my childhood Pink Panther out because the his fur had rotted and all the stuffing fell out, my daughter gave me a new posable soft toy which sits in my room.

I thought it would be pretty cool if I could somehow incorporate my past (symbolised by Pink Panther) and what I’ve learnt (being art – I had lessons when I was unable to work during the first of my major episodes) into a tattoo. Then I remembered seeing the Pink Panther as an artist several times and so that idea has been floating around in my head for a bit. Not sure where I’d put it – I’m thinking lower left leg as my ironman symbol is on my lower right leg. I still have to be careful about covering things up for work as I’m a professional and meet with clients all the time, but lower leg tends to go unnoticed and can easily be covered by pants if I have to. Might be time to go and talk to a tattoo artist and see what ideas come up…

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.