An update

So, I haven't posted for about 6 months now. There's been a lot going on, and one of the things I have had to consider is how much I should be sharing with other people and why I am sharing it. Some of the issues I have also affect other people and it's hard to know how open to be, but also difficult sometimes to write about things when you have to leave out the bits that might involve other people.

December was a really difficult month. I traditionally don't cope well around Christmas time anyway, and 2017 had some family and financial pressure, plus my medication had been decreased which I did not react well to.

My new (at the time) psychiatrist had said that he was of the opinion that I was heavily over-medicated and he wanted to decrease my Venlafaxine dose. I was all for trying this as my ultimate aim is to come off meds altogether as I don't believe they are helpful long term for people like me with BPD. I'd already started decreasing my dose over the previous year with the help of my last psychiatrist, going from 375mg down to 225mg over about a year or so. With my new plan I was to drop down to basically nothing over about 3 or 4 months. 

I'd had terrible withdrawal symptoms with all my previous decreases but managed to get through them. Unfortunately, this time the plan called for dropping by one dose (37.5mg)  and then after a few weeks, dropping by another dose, and so on, and my body couldn't cope by the second decrease. I went into withdrawal which for me always starts with feeling like I am getting some kind of virus. This was followed by brain shocks, headaches, nausea, and dizziness. This was on top of worse mood swings than normal and higher levels of suicidal ideation. I tend to have rages where I know I am being completely irrational but I can't seem to calm down after being triggered. 

My brain often goes AWOL when my meds have been changed, and I was also having trouble stringing a coherent thought together and holding a conversation. Not helpful when you are working and trying to communicate with clients. 

After discussing my issues with the team at community mental health (CMH) my dose was temporarily increased for a few weeks till I re-stabilized, then it was time to try dropping it again. I was pretty worried by this point, given my history, but agreed to try and see what happened. It was terrible timing as the first term of the school year was starting, but there's never a good time to be feeling rubbish so I just had to hope I'd be ok.

A few days in and I was feeling ok, then the onset of the virus type symptoms. By day 5 I couldn't get out of bed and all I wanted was to die. I raged at my daughter's new teacher (terrible first impression) and generally acted like a bear with a sore head, lashing out at anyone who got in my way.

I got pretty desperate and ended up calling my case manager at CMH and asking for a med increase again. Not what I wanted but I just didn't have the strength to deal with all the withdrawal symptoms.

So that was December - February. 

One of the things that struck me over this time is that people generally have a perception that my mental illness is a 'fixable' thing. Over Christmas time I bumped into a number of people I haven't seen for a while, and as you do, you ask each other how you are. Now I never know how to respond to that question at the best of times, because does the person genuinely want to know or is the 'I'm fine' response expected? I usually opt for 'getting there slowly', or 'not great' as they seem slightly more honest than 'I'm fine'. And the comments I get are almost always along the lines of 'But you're better now though aren't you?', 'I thought you'd recovered from your depression, you're back at work', 'you look/sound happy'.

I find this incredibly frustrating though I know it's always meant well. BPD is not something you recover from, and yes I was severely depressed and I have recovered from a major depressive episode but I am still unwell. BPD is a serious mental illness that has a significant risk of death by suicide. 70% of people with BPD will have at least one suicide attempt and about 10% of people with BPD die by suicide (50 times the risk of the general population). I often look well and/or happy because I can be happy. BPD is characterized by emotional instability and pervasive instability in mood, affecting all aspects of my life. My life is a never ending rollercoaster of emotion, where I can be happy one minute and suicidal the next.

I don't blame anyone for not knowing or understanding my condition, I just find it a little frustrating that most of the efforts in awareness campaigns tend to be around depression and anxiety. 

And I guess that brings me back to my reason for sharing some of the things I do. I want people to know what living with BPD is like. I don't think having it makes me a bad person, but I am very sensitive, emotional and impulsive which can lead to chaos in my life and the lives of those around me. More on that another day.

Ka Kite Ano

The last few months part 2

I wasn’t going to post this but then thought this might give some perspective on how I was feeling back in August. Here goes:


I know I haven't written much recently, but it's not been because I haven't wanted to. I am currently struggling with an episode and it's hard to know what and how much to share. I started this blog to help people like me, to share my experiences in the hope that it might make at least one person feel less alone in what they are going through. And also to increase understanding and awareness of what it feels like to have a mental illness. Stigma is a very real problem and I hope that if more people have understanding and empathy then the shame around having a mental illness will decrease. But, I do have to be aware of the consequences of baring my soul to the world - on my job, my child, and my family. It is a scary thing to expose my innermost thoughts to scrutiny, and I have to hope that by doing so I don't inadvertantly hurt anyone I love.

So, with that in mind, here goes...

I have been very unstable for about the last six weeks. I'm not sure why, sometimes these things happen, but I suspect in this case it was a build up of a whole bunch of stressors. I have job stuff, family stuff, financial pressure, health issues, my daughter's challenges and some personal things going on, and my breaking point is a lot lower than other people's. 

In addition to all that, my latest psychiatrist decided a while back that I was over medicated, and I've been on a plan for the last 6 months to reduce my medications significantly. I'm down from 1400mg of Epilim to 600mg per day, and 375mg of Venlafaxine to just 150mg. I'm completely off Temazepan and Quetiapine now as well. Whether that makes a difference is hard to tell. My psychiatrist tells me drugs are ineffective for BPD, though I have chronic dysthymia which is why I'm still on an anti-depressant. I personally think the Epilim (a mood stabliser) was actually helping flatten out the ups and downs in my mood, but I am willing to try and decrease dosages and see what happens. One of the side-effects of being on so many drugs at such high doses was the massive weight gain I've experienced, at one point I put on 30kg from Lithium in just 4 months (I was on Lithium before Epilim). I'm hoping that with a decrease in dosage I'll be able to drop some of the extra weight. 

Whatever the cause, I've been very unbalanced in the last couple of months. I struggle to sleep at the best of times, and my sleep had got completely out of sync.