Psychiatric Medication Saved My Life

Image credit: CDC via Wikimedia Commons

Image credit: CDC via Wikimedia Commons

I get a little concerned when I become aware of the news of a tragic death being used as a means to increase publicity to a particular movement or way of thinking.  I recognise that many people don’t have a problem with this, and therefore it is important that I state this is my opinion only.  What I say in this post is not fact, and I respect the right of others to have differing opinions.  I know that some of those opinions are based on tragic circumstances and I have no wish to minimise the effect of those circumstances on the people who have and still live them.

If my viewing over the past few days is anything to go by, and I accept that the internet is a large space, it seems to be a growing movement of people against the use of psychiatric medication (and other treatments) to treat mental illness.  I know this is not new.  I’m not saying it’s wrong.  It’s just that there is another side of the story and for some people psychiatric medication is the only life-saving treatment appropriate.

Since Robin Williams’ wife came out and publicly said that he had been diagnosed with Parkinson’s Disease before his death, there seems to have been a swell in people saying that his death was a result of the medications he was taking for this illness.  The reality is that at this stage no one knows the exact cause of his death.  I don’t believe it is fair on anyone, including above all Robin Williams’ memory, to be making assumptions and statements like this.

I don’t mean to take on the whole Anti-Psychiatry movement with this post, but rather because I have seen so many statements about the dangers of psychiatric medication in the past few days, I simply want to be clear that I have another opinion.

Psychiatric medication saved my life.  I have no doubt of that.  In the nearly 21 years of my mental illness I have been on a vast range of drugs, mostly prescribed by psychiatrists.  I am very aware that most of those drugs were of little or no use to me.  Also many were changed too quickly and therefore didn’t allow time for it to work.  I know they were desperate to find a quick solution.

I experienced a whole heap of side effects, which I could have done without.  One of the side effects I ‘possibly‘ experienced was suicidal ideation.  I say ‘possibly‘ because I have no means of telling whether the severe suicidal thoughts I experienced for around 10 years, from before the medication was started, were caused by the medication I was on, symptoms of my specific illness, or the life situation I was in.

It makes no sense to me (as a lay person) to have psychiatric medication that can cause side affects of suicidal thinking.  What are pharmaceutical companies  thinking?  On that I totally agree with anti-psychiatry, but I also don’t believe anyone could point the finger at any aspect of my life and say that was specifically causing the suicidal behaviour.  They would only be guessing.

Around 12 years ago my psychiatrist at the time made what would be one last change to my medication regime.  I’m purposely not going into details of the actual medications prescribed because I don’t believe that is helpful.  We know that responses to medication are different for everyone.  What has worked for me won’t necessarily work for anyone else.

Since that change I haven’t had any more hospital admissions (and I was stacking up admissions before then) and my suicidal behaviour has largely gone.  Yes, I admit there are still thoughts at times, but I can manage them without hospital admissions or crisis intervention.  I have been able to stop self harming.  I have begun to find hope in living.  These are huge changes for me and they literally saved my life.  I continue to take that medication today and will probably stay on it for my lifetime.  That’s okay with me,and yes, even in spite of what it may be doing to my body.

All that said, I don’t believe that all people who suffer from mental illness need to be on medication.  I read a blog post recently that advised sufferers of Depression to eliminate sugar and alcohol from their diet, get out walking and learn to meditate.  That’s pretty standard and I am sure that for some people, that would go a significant way in curing the problem.  But I know that this instruction wasn’t sufficient for me.  I needed more.  I believe that I needed to change the chemicals going on in my brain, and that prescribed medication was the only way to do that.

With Depression I believe that there are different levels of severity(sometimes it would be good if there were different names for those different levels).   Therefore I accept that medication is not always necessary.  If depression can be cured without medication, I think that is great.  But nothing can sway me from believing that for some people medication is the only answer.  I am sure that I would have been dead today had a psychiatrist not taken the time to find the right medication for me, and had I not committed myself to taking it daily.

I also believe that psychotherapy went a long way to contributing to my improvement, but that it is the right medication that really sealed the deal from changing what I will call a suicidal pit to some chance of living.  The medication made the therapy possible.  Without it I wasn’t well enough to undergo that process.  Of course, you probably didn’t know me 12 years ago, but those who do will attest to the fact that my life has significantly changed.

I am not cured and I expect that with the type of mental illness I have, I will continue to have symptoms, but I know that continuing to take the prescribed medication will go a long way to keeping my illness managed and hopefully keep suicide from being an option.

I totally respect people’s right to determine what is right for them.  This was right for me but I understand that it won’t be right for everyone.  But I also believe it is wrong to write off a particular type of treatment which may not be right for one but can be a lifesaver for another.  From all the range of treatments and options available hopefully there is hope.

“Others imply that they know what it is like to be depressed because they have gone through a divorce, lost a job, or broken up with someone. But these experiences carry with them feelings. Depression, instead, is flat, hollow, and unendurable. It is also tiresome. People cannot abide being around you when you are depressed. They might think that they ought to, and they might even try, but you know and they know that you are tedious beyond belief: you are irritable and paranoid and humorless and lifeless and critical and demanding and no reassurance is ever enough.

You’re frightened, and you’re frightening, and you’re “not at all like yourself but will be soon,” but you know you won’t.”

— Kay Redfield Jamison (An Unquiet Mind: A Memoir of Moods and Madness)

Facing The Mundane Realities Of Chronic Illness

There are some things which are obvious about chronic illness, although admittedly when it is an invisible illness even those obvious things are hard to see and be aware of.  I don’t mean for this post to be a ‘moaning Maggie‘ post, so forgive me if you think I am heading there.  But this is on my mind.  With most posts I publish it is my desire that people read them (ok, I’m stating the obvious), but this time I admit that the shame involved in posting leaves me with mixed feelings.  Yes, I want you to read but yes, I am ashamed of what I say.

I read awhile ago that Fibromyalgia doesn’t kill you but you just keep getting sicker.  I don’t know if that is true, or another internet rumour, but this past year certainly seems to have been worse than before.  I feel a bit like fibro has become just one long line of flare symptoms, with little or no break.  My head seems in a permanent fog.

On Tuesday I have a small army of people coming through my house to do yet another assessment of earthquake damage left from 2010/11.  Yes, you’re quite right.  That was a long time ago but recovery takes… forever it seems.

They always promise ‘minimal disruption‘ but around ten people going over (and under and through) the house with a fine tooth comb is not ‘minimal disruption‘.  That’s ok though as I am just happy that someone is doing something.  Maybe one day there will be a decision on just what to do with my poor home.

From many of these assessments before, I am fully aware that they will see everything… including the fact that my house is not just untidy, but also unclean.  And yes, it’s got to that stage where it’s plainly obvious.  I am ashamed at the state of the place, but it has become like that simply because my fibro has been bad enough to prevent me from doing housework.  I also know , like a promised added extra, that when I actually get to cleaning it is likely to land me in bed for a week, simply from the effort involved.

So why am I telling you about my shameful dirty house?  Because if you looked at me you wouldn’t see a reason why I couldn’t have kept on top of it.  I look healthy.  I look able.  I look like there is nothing wrong with me.  Yet I can’t keep up with what is simply a small two bedroom house with only one person to mess it up.

I don’t have a lot of people come to my house usually.  I admit to being somewhat of a hermit.  I have no idea of what judgements those who have been here lately will have made of me.  There is always silence.  And uncomfortable silence where you wish to god that they would just say something.

Right now I am very aware of the judgements that this army of people might make on Tuesday.  Yet there is very little I can do about it.  I can hardly stop them at the door and say “BTW excuse the mess, I have fibro“.  I really don’t think they will care for excuses.  You see, I look fine and so the judgement will be made that I am fine, but lazy.

That old adage “don’t judge a book by its cover” applies in so many ways.  If you walk into someone’s house and notice it is unclean and untidy, stop to think that there may be a reason.  Most of us don’t choose to live in such a state, but some of us find ourselves having to.

You see, apart from when ten people are about to come through my house, I can kind of overlook the state of my home.  I don’t like it, and I would love for it not to be the reality, but my priorities are largely my health and my mother’s welfare.  After those, if I have no wellness and energy to deal with housework, it simply has to be as it is.  I’m learning to live with it, even though I will probably never like it.

It’s not just chronic physical illness that can prevent us from staying on top of such mundane tasks.  Mental illness can too.  Certainly for some people with mental illness, they can find it therapeutic to do those things but for others, it is simply too much.  For some, their illness can be affected by the state of their home, but for others illness almost keeps us from seeing the obvious.  Actually I have no difficulty in seeing the obvious today.

We need to find ways of being kind to ourselves.  I could choose to beat myself up about what I can’t do right now.  It would make sense as more than likely I am going to be judged by it shortly. But this time I’m trying not to get stressed.  If cleaning happens, it happens… and I’ll probably spend the rest of the week in bed.  If I can’t do it, so be it.  It won’t be the end of my world.

And now comes the big question… do I publish or not?  This is, afterall a post about housework and my unclean house.  Can I swallow the pill of shame in order to say out loud that this happens.  It’s real.  Actually I bet it’s real for many more than just me.  Maybe it’s not the housework.  Maybe it’s some other mundane reality of chronic illness.  We can talk about the illness, but there’s more to it than just symptoms.  There are all the realities of just keeping life going.  The best we can do for each other is to be real about them.

“When you argue with reality, you lose, but only 100% of the time.”

― Byron Katie

Love Doesn’t Cure Mental Illness

This week, not surprisingly, there has been a whole lot of talk on our screens about mental illness and suicide.  Having those subjects ‘out there‘ is a good thing, but I can’t deny that unwise words and ill-formed arguments have not helped anyone, most especially those personally affected by the tragic death of Robin Williams, and also importantly, those people struggling with their own mental illness battles and suicidal thoughts.

I read a lot that I really wish I hadn’t read, but one article I came across perhaps summed up the issues for me more than ever.  I have shared that article in several places but if you haven’t seen it I urge you to read the wise writings of Molly Pohlig:

When the Illness You Live With Becomes Breaking News
(I Bet Robin Williams Knew He Was Loved. Unfortunately, Love Doesn’t Cure Mental Illness)
http://www.slate.com/blogs/xx_factor/2014/08/12/robin_williams_and_mental_illness_when_depression_is_breaking_news.html?wpsrc=sh_all_dt_tw_bot

One thing we perhaps know from this week, is that fame, fortune, a great sense of humour, laughter, family and perhaps above all, love does not cure mental illness.  Robin Williams appeared to have all these things.  Depression is not magically spirited away by the possession of such things, and the struggle with suicidal thoughts is not relieved.  Oh, that it could be.  Wouldn’t it be great if mental illness was so easy?

If love were enough, my depression would have been cured years ago.

If love were enough, along with maybe a plate of my favourite food of course,  then perhaps my Anorexia would never have got the dangerous point it did, not to mention halting the permanent damage it did to my body.

If love were enough, I wouldn’t have struggled with chronic suicidal ideation for so long, several times plunging my body close to death.

If love were enough just maybe Borderline Personality Disorder (BPD) would never have become the major stumbling block in my life that it is.

And perhaps finally, if love were enough then Post Traumatic Stress Disorder (PTSD) would have been cured.  But then for me PTSD was triggered into a perhaps worse state by the presence of love in my life.  Now that’s confusing if you believe love will solve all.

Love certainly made the last 20 years of my life better than it would have been without it, but only because in spite of the pain I was in, I knew someone cared and perhaps I wasn’t quite as alone as I felt.

But love didn’t fix the pain for me.  It didn’t cure my mental illness.  I had a family surrounding me who loved me.   It was hard for them to know that their love couldn’t fix me.  I guess that hurt like hell.

As I have said before (An Apple Never Falls Far From The Tree), I tried very hard to prove for myself that my family didn’t really love me.  They did.  I can’t deny that.  Some of them (at least) probably thought they could help me if they could just love me a bit more and provide for the needs I had.  Maybe to sit down with me and watch a Robin Williams’ movie to make me laugh for a while.  I should say that just because I might laugh, doesn’t mean I am cured either.

I had friends who loved me, and though I tried very hard to push them away, some of those people are still my friends today.  No, they didn’t cure me, but they’ve stayed in for the long haul.  Mostly they simply kept being there.  But that didn’t cure me.

And then there was my marriage where for years a dedicated and caring husband tried harder than you could imagine to love my suffering away.  No one could fault him for the effort he made during what were the worst years of my suffering.  Strangely, the more he loved me, the more I kicked up my heels and pushed him away.  He loved me so much yet it wasn’t enough to save or cure me.  In the end was a broken marriage and still a mentally ill woman.

Why?  Obviously this is just my opinion but I think the reason my ex-husband’s and others’ love, weren’t enough to cure my mental illness was because:

I knew that I was unlovable

It wasn’t that I felt unlovable, but that I knew I was unlovable.  It is that certain.  I knew in my heart.  From my earliest days I knew I was unlovable, and actually I would go so far as to say that I knew this before I was born.  That might seem extreme and you’ll have to do without the reasons this time.  Some things are too private.

All the love around me meant nothing to me because I knew that it couldn’t be real, and I knew that eventually I would prove it to be false.  There was no way (in my mind) that those people really could love me like they said.  It just wasn’t possible.  I knew.

It’s certainly not the fault of the people who tried to love my mental illness away.  They didn’t understand that their love meant little because I was unlovable.  I couldn’t have explained it if I tried and so instead, the more they loved me the more of a fake I felt.  The more guilty I felt for not getting well.  This was not something any of them could fix.  It just was.

While I needed the love they were offering,  it was never going to be enough to cure my mental illness.  I can’t speak for others and I don’t pretend to.  This post is about me, and not the thousands who suffer from mental illness.  I can’t say if more love would have saved Robin Williams’ life.  In spite of many contrary opinions voiced this week, I believe that only he could have said what, if anything, could save his life.  And I suspect that he, like me, didn’t know if anything could cure us.

Mental illness affects different people differently.  And what is needed to cure it, if indeed that is possible, varies. To generalize simply isn’t fair on anyone.  I simply know that love was never going to cure me.

Thank you to those who tried to make love enough.  I am lucky to have you on my side and I’m sorry if I disappointed you.  There was nothing wrong with your love, it just was never going to be enough.

I saw a meme yesterday which said that love can cure everything.  I don’t believe that.  If only it were so easy.

“That’s the thing about depression: A human being can survive almost anything, as long as she sees the end in sight. But depression is so insidious, and it compounds daily, that it’s impossible to ever see the end.”

― Elizabeth Wurtzel

 

Claiming My Voice Back

I haven’t shared this journey on this blog, mostly because until now I didn’t think it was my story to tell.  I posted Grieving For My Red Balloon about a year ago, but that is as far as I went.  It was a very carefully constructed attempt to say “help, I’m hurting” while strangely enough trying to avoid stepping on anyone’s toes.  Was I kidding?  Avoiding trampled toes?  It was far too late for that. But then I was still being manipulated… into silence.  That was all part of the game.

I’m healing now and part of that includes claiming this as my story.  It doesn’t belong to anyone else because I’m the one who lived it.  I’m the one who was played with like a toy.  I was a game. Manipulated, abused, lied to and cheated on.  It’s my story and I’m choosing finally to share it with you because I can.

“You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.”

 ― Anne Lamott,Bird by Bird: Some Instructions on Writing and Life

I’ve been kissed by a…

Rose

Monster

Person With A Mental Illness

Take your pick.  You could say that I have been kissed by all three. I could go with the words of the song.  If a man can be a rose (and why not?), then that is exactly how he seemed.  He was a beautiful person with a very loving heart.  Caring, understanding of me and my world, he promised he would never play games with my heart.  He challenged my thinking and he supported my growth as a person.  He wasn’t perfect, like any of us but he was a person right for me.

But later I’d know that I’d met a ‘monster‘.  His term, not mine.  Personally I don’t like calling human beings monsters, regardless of what they might or might not have done. But I’m using the term here simply because he used the term of himself.  I regularly told him that to me he was no monster.  Actually he still isn’t (in my mind).

Eventually, what I only knew is that I had kissed a person with a mental illness.  For that matter, so had he.  No harm in that.  Is there?

Here’s the story,

Back in 2012 Blogger (boy) meets Blogger (girl) in comments section of a Third Blogger’s Post.

(BTW Third Blogger has no responsibility for anything here, except for yet another very thought-provoking post or two.)

Each blogger liked the other’s comments and so a friendship developed, followed quickly by a romance.  I should add here that we were many miles apart, me in New Zealand and him on the other side of the world.  Neither of us were looking for any kind of relationship, let alone one on the internet.  Surprise!

We lived happily ever after…

Hang on a minute.  That’s how it seemed.  We were both very happy and eventually we spent some time together ( I went to visit him) and after that we were planning on a life together.  And this wasn’t an impulsive thing, it was all carefully considered.

It was what we both wanted. I was his ‘soulmate‘.  That’s what he said, regularly.  I’ve never been too sure on the whole ‘soulmate‘ terminology but if there was such a thing, then this was him.  He was the ‘one‘ for me.  I was never more sure of anything.  My gut instinct told me that this was right.

Then one day he announced to me via the internet waves that we treasured so greatly, that he was “too sick to be in a relationship“.  Time out was what he wanted.  My compassionate heart sprung into action and understood completely.  I thought it was a break (that’s what he said) and that we still had a very bright future ahead of us (together!).  Yes, it would hurt but it seemed like the best thing for a apparently very depressed man.

Just days later though, he announced to his Facebook friends (including me at that point) that he had a new ‘soulmate‘.  He was in love with another woman (any mention of me was completely gone).  And they were very happy together.  To add to it, she was married.  That didn’t seem to be an issue though.  Two relationships gone with one hit.

The short version of the rest of the  nightmare is that as well as cheating on me, he had lied.  Actually he had lied the whole way through the year long relationship.  Everything was a lie. He had manipulated me for his own deceitful purposes.  He had abused me in more ways than I care to count.

I discovered that his diagnosed mental illness was not Borderline Personality Disorder (BPD) as he had always said, but was Antisocial Personality Disorder (that’s right… sociopath/psychopath).

It all hurt like hell.  I felt deranged and paranoid.  I no longer knew what the truth was.  I didn’t know what to believe.  Just how he wanted it.  Perhaps worst at that time was that I couldn’t go bang on his door to find out what the heck was happening. I eventually learnt many things.  Others I simply pieced together.  And yet others, I will simply never know.  One of those big revelations was the reason why he would never have visited me in New Zealand.  It boiled down simply to the fact that he is a convicted criminal and wouldn’t have been allowed into my country. He had never admitted that.

So that’s the very brief story of the last two years of my life.  I fell in love with a man who simply didn’t exist.  Oh sure, there was a man, complete with body, but aside from the body, everything was fake.  Everything he said to me was simply a story, all part of the game he was playing.  The extent his lies would go to was simply limited by his acting abilities. And even before anything went wrong, I knew he would make an excellent actor.

Of course all this hurt.  I cried and screamed and yelled and felt so empty, used and abused.  Now days I’m moving on, but it hasn’t been easy.  It was far from easy and very traumatic.  I’m still working on recovering, but I refuse to be held back by this anymore. When I think about all that I have been through the fact of loving someone who really didn’t exist is perhaps the hardest.  I had no desire for the true person revealed.  That person I felt angry towards and then sad for.  Incapable of a real relationship. But I still loved the person I thought I knew.  How do you grieve for someone who wasn’t ever there?

Yeah, I guess I was kissed by a monster (his words, not mine).

Does it seem a little strange that I’m sharing this now, particularly when I’ve said so little in the last year?  I have realised that by staying silent, I am allowing myself to be manipulated further. I need to speak up to claim back control on my life. I have only shared the barest detail. There has been so much more, but that detail is not important.  I am simply saying this is my story to tell to whom I chose. It’s not done in malice but rather in claiming back my voice and with it some peace for myself.

“Just like there’s always time for pain, there’s always time for healing.” 

― Jennifer Brown, Hate List

Cure Me, I’m Depressed

Recently I had the opportunity to watch the UK television documentary Cure Me, I’m Gay in which a gay doctor (Dr Christian Jessen) subjects himself to a whole range of treatments and therapies designed to cure homesexuality.  Wow!  I chose to watch it because I find it interesting that some people can see their role as to judge others (who are doing no harm to anyone else).  Personally I find it sad, but that’s me.  I know many people will disagree with me, and that’s okay too (although it’s not really the point of this post).

Let me be clear that no one has ever seen the need to, or tried to cure my sexuality (that they told me anyway) but they have tried to cure my spirituality.  As I watched the Cure Me, I’m Gay programme there were elements of familiarity that sprung up unexpectedly for me.  I realised that back when I was first being diagnosed with mental illness, in some ways I was put on a journey of ‘Cure Me, I’m Depressed‘.  It was all seeming a little familiar to me when I watched the last ‘treatment‘ that Dr Jessen underwent.  That of exorcism of evil spirits and demons.

I should add that at the age of about 15 I witnessed an exorcism of demons from a girlfriend.  I wasn’t meant to be there (judged too young to see such things) but circumstances determined that I had no choice.  The Christian people praying for this were doing so because they believed a demon was the cause of her chronic suicidal thoughts and self harm.  What happened that night was dramatic and downright terrifying for 15 year old me to watch, especially when it was my friend it was being ‘done to‘.  It was something I will never forget, and frankly wished right then that I didn’t have to watch.   Did it work?  Others there told me it did but I had no knowledge on which to base a conclusion.  That said, my friend is alive and well today and eventually overcame that part of her life.

The apparent existence of evil spirits and demons in my life was seen by some as the root cause of my depression.  I should add that I was also being treated for Anorexia Nervosa and Post traumatic Stress Disorder (PTSD) but most people (including those who were taking this approach) were either not aware of that or ignored it.  I might have been literally skin and bone but mostly this was either ignored or actually praised (many thought and said that I looked great and that my diet and exercise regime must be working really well). I suspect they would have had a field day if they’d known of the other issues.

So the focus was on the depression.  As I’ve said before, I was an active Christian at the time and had grown up in a Christian family (although it wasn’t my family that were involved with this search for answers to my decline in mental health).  I knew very well that there were many people praying for me, although I had little idea of what most were actually praying for.  I appreciated their commitment (mostly) but left them to it.  I had no desire to join this prayer effort.  At the time I was sure that nothing, including prayer, would save me.  I simply knew that for many Christians to be able to tell a person that they are praying for them, absolved them of any other responsibility (is that too harsh?) and also put their mind at ease.  They’ve done something to help.  They don’t feel quite so helpless.

My (soon-to-be husband) was very anxious to find a spiritual reason for my illness (the cynical me would suggest that he took this approach to get the heat off his role) and arranged for me to see a Catholic (BTW I was not Catholic) priest who was well known in the city where we lived for having a “successful healing ministry”.  There were about five people in the room including this priest.  Before they prayed I was asked many questions in their attempt to understand the evil forces that were apparently in my life.  They were keen to know how I had sinned and how I might have let ‘the Devil‘ into my life.  They eventually found no reason why there should be such forces in my life until they started to question me about my family background.

The short story is that my grandfather had been part of the Freemasons during his life (by this stage he had died and actually I don’t think he was a part of this organisation during my lifetime).  Some Christian people believe that the Freemasons are some type of secret, evil religion and according to the people I was with that day, they were a completely evil influence.

I was told that it was my grandfather’s fault that I had Depression, and from memory I think they prayed for me that ‘the evil spirits let into my life by my grandfather‘ would be gone.  There was so dramatic exorcism this time, maybe because I was sitting thinking  ‘how the heck can my grandfather who loved me and would never, ever have done anything to hurt me… cause this?’  My heart was definitely not in what they were doing, and no doubt if I went back and questioned why I wasn’t healed of Depression, it would have been my fault.

I don’t believe for a minute that my grandfather contributed in any way to my mental illness.  He would have been devastated to be blamed for my suffering.  Furthermore I think it’s sad that they searched until they had something to hang a nail on, but never once asked me anything that might have lead to the real reasons for my mental illness.

While I do believe that there can be a spiritual element to mental illness, I don’t and never did, believe that to be the case for me.  At the time I probably couldn’t put words to the reasons for my emerging mental illness, it took years before I could even begin to find words.  Now that I have a much better understanding of my illness, I know it was nothing to do with spiritual forces and more importantly nothing to do with my grandfather.  They were grasping at straws, and in my mind were doing so dangerously.

Much like the documentary on homosexuality where ‘therapists’ seemed to be grasping a straws too.  Homsexuality was apparently caused by sin and/or abuse.  It all leaves me sad for those who must carry the weight of those straws.

Postscript
While I was an active Christian for more than half my life, I have since removed myself from any organised religion mostly because of my experience as a person with a mental illness trying to be find a place I would fit.   I still hold Christian beliefs but they are personal, and I have no desire to push them onto anyone else.

I see my own spirituality as a personal expression of belief and I respect whatever beliefs you may or may not have as your right.  All that said, I write about my experiences such as that above, because it has been a major influence in my life and I admit, some of the force behind my illness.  It’s not something I want to deny.  Nor do I have much desire to get into a criticism of beliefs different to my own.  I hope that I have largely avoided that here.  It is simply that what I have  labelled the ‘Cure Me, I’m Depressed‘ approach to my mental illness did not work for me.  That said, if a similar approach has worked for others then I am happy for them.

Trauma Takes Me Back Again

It doesn’t take much, and more often than not, it’s something quite innocent.  There is no intent to harm or frighten me, but yet something takes me back to live trauma all over again.  In spite of the time gone past, the hours in therapy, the healing and forgiveness… it can be the most innocent thing and it feels like I’m right back there again.

For  me, there are such triggers as:

A smile from the ‘wrong” shape of lips.

A chance comment (which probably had nothing to do with me).

A television/movie segment that springs from nowhere.

Watching something happen in the street.

A physical resemblance

A part (or even just an observer) of a conversation.

A touch.

A lie.

And many more, usually random events

There’s so many more things that can trigger that emotional response in me that take straight back to the scene of the trauma.  It happened to me yesterday.  Little warning but bang, and I was scared and I was frightened.  I was ‘back there‘ with the person who had perpetrated my trauma.  I was re-living it all over again, although I am clear that this was never the intention of the person that triggered me.  Actually they had no idea.

Thankfully I was at home (on my computer actually) and could retreat to my safe place (in my bed with heavy covers over me and my teddy bear by my side).  Safe, where I know there is nothing of which to be frightened. I can feel it physically and emotionally.  I know this routine well.  Thankfully a few words from a very dear friend also encouraged both that sense of safety but also affirmed that what I was feeling was valid.  Perhaps the most important aspect for me in that particular situation.

Eventually my safe place worked and I could feel okay about coming out from there.  But I was shattered for the rest of the day.  If you’ll excuse another earthquake metaphor, it was like the remainder of a day after a large quake.  Shaken, bruised and wondering what the hell would come next.  Wandering around the house, starring at damage, not quite sure what to do now.

I know this well, and you will too if you have Post Traumatic Stress Disorder (PTSD).  I’ve learnt the routine that works for me (eventually) and I know I simply have to get away from the trigger, and get to a safe place (for me).  But you know, what gets me everytime (after many years of this) is how the trauma keeps coming back.  How frightening it is… everytime.  That’s apparently the burden of PTSD.  While I know the triggers don’t affect me quite so often, it seems to come back full force, every time they do.  Not to mention how for some of us we seem to collect more trauma as we go.  That is so not fair.

When trauma takes me back I feel anything but ‘normal‘ (for want of a better word) yet I know only too well that it is ‘normal‘ for so many trauma victims.  This morning, by chance my friend Michelle  of Crow’s Feet (who knew nothing of yesterday) shared in my email an article about transforming trauma into creative energy and action.  It couldn’t have been better timed, thanks Michelle.  It wasn’t just the idea of transforming the trauma but the accompanying story of the therapist who came through the Holocaust and used her trauma to help others as a therapist.  It inspired me.  I’m not sure yet, how to make this happen for me but I like the idea and am sharing it with you.  The link to the article is:

On a good day she would kiss me back: transforming trauma into creative energy and action
by TED COMET

http://www.opendemocracy.net/transformation/ted-comet/on-good-day-she-would-kiss-me-back-transforming-trauma-into-creative-energy

I’m okay today.  Just being cautious of screens I look at and people I see.  I know it’s a random thing.  No one meant be any harm.  It was just my brain travelling back, and ouch, sometimes that hurts.

“He asks, in a softer voice, “Does your arm still hurt?”
You touch it with your hand. The big ache is gone, leaving only the little, underneath ache that will gather and swell against the bone. The blood leaks out of the vein where he grabbed you. But you say, “It’s better now.” 

— Jim Grimsley (Winter Birds: A Novel)

What Matters To Me

Some words of wisdom bounced up onto my Twitter feed a few days ago.  Words worth taking notice of.

“Our main question should be “what matters to this person?”, not “what’s the matter with this person?”

- Sir Mason Durie

To put these words in context, Sir Mason Durie is a now retired psychiatrist and professor of Maori Studies in New Zealand.  He is well known for his leading roles in reform and issues of Maori health and Mental Health Services here.  I admit that when he speaks, I listen.  He knows what he is talking about and more importantly he seems to care about his patient.

We all know the experience of being labelled with illnesses, both physical and mental.  Those labels tend to carry with them some assumptions and stigma.  When I go to see a new health professional, regardless of whether it is my physical or mental health that is at question, I go with some trepidation.  Borderline Personality Disorder (BPD) carries with it some terrible assumptions about the person to which the label has been applied.  I tend to go in armed for battle.  I have to convince this person that the assumptions about BPD are not who I am.  Of course, if I go in too ready to fight for my right to be accepted in spite of BPD, I know only too well that I will then be labelled resistant and argumentative.

Sometimes I just can’t win. There are times I go in with resignation on my mind.  It’s going to be too hard to fight and so I just have to accept that because I have BPD this health professional has already jumped to conclusions of who and what I am.  And of course, sometimes I am simply too unwell to fight.

But why should I have to go into a doctor’s office with labels and battles?  How do they really assist the doctor to treat me?  I can accept that it’s convenient to think of me, the patient, in terms of half a dozen (perhaps more if I’m really facing the truth) labels.  It’s quick.  It’s easy.  Labels are faster than sentences of pain expressed.  So I can see from their perspective it might be simpler.  But do those labels really help me to be treated appropriately?  I don’t think so.

The fact that I have BPD does not make me the same as another who has  BPD.  Actually there are over 250 variations of BPD before we start talking about severity and coexisting problems.  The fact that some psychiatrist along the way diagnosed me with BPD, doesn’t tell any doctor anything about how to treat me.  Any doctor can say what is the matter with me but only if they are prepared to listen to me will they know what matters to me.

How BPD affects my life?

What makes it difficult?

And the all important, how they can help me to live a fulfilling life?

I know that a doctor having the time, let alone the inclination, to ask me, to listen to me, is a bit of a sad joke considering the workloads of health professionals.  A doctor listened to me the other day, and because of it, he was running behind on his schedule for the rest of the morning.  He had to choose.  Did he listen and help with what mattered to me?  Or did he keep everyone else on time?  I appreciate that he chose to listen to me, to hear what matters to me, but I accept that probably no one else in his waiting room appreciated their extra wait.

Yet I’m sure there has to be a way that this can work.  If a doctor, or any health professional, approaches me with an attitude of what is important to me, then I have to get better treatment than if my needs and desires are just assumed on the basis of a label.

My labels don’t tell anyone who I am.  They don’t even tell me who I am.  If I use the example of BPD again, reading the list of what makes up a person with BPD will not tell me, or anyone who I am, what my needs are or how best I should be treated. Having BPD says virtually nothing about me, except give a convenient label.

What matters to me is that someone will listen and hear what I have to say.

What matters to me is that I get taken seriously, and not just dismissed as just another patient.

What matters to me is that they care to ask how this illness affects me.

What matters to me is that someone cares enough to find out who I really am.

When I think about it, I have seen dozens of doctors over the years.  I couldn’t count.  But there is only one doctor (a General Practitioner) I can think of who repeatedly took the time to find out what mattered to me.  By doing that, he helped me.  Maybe I wasn’t cured, but maybe I lived.  That’s what mattered to me.

“Seeing modern health care from the other side, I can say that it is clearly not set up for the patient. It is frequently a poor arrangement for doctors as well, but that does not mitigate how little the system accounts for the patient’s best interest. Just when you are at your weakest and least able to make all the phone calls, traverse the maze of insurance, and plead for health-care referrals is that one time when you have to — your life may depend on it.” 

― Ross I. Donaldson, The Lassa Ward: One Man’s Fight Against One of the World’s Deadliest Diseases

Time To Call In The Troops (aka I Can ‘Do’ Tough!)

These troops are on their way from Space as you read. http://upload.wikimedia.org/wikipedia/commons/3/3e/Teddies_in_Space.jpg By Cambridge University Spaceflight (University of Cambridge Department of Engineering) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

These troops are on their way from Space as you read.
By Cambridge University Spaceflight (University of Cambridge Department of Engineering) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

Whether you have a chronic physical illness, a mental illness, or whether you’re just ploughing through life keeping one foot in front of the other, and your head above water… sometimes it’s time to realise that just perhaps… it’s time to call in the troops.

Sometimes I’m a little slow to realise that the time has come.  Sometimes I think I can just keep plodding on by myself and “I’ll be okay“.  Sometimes I’m standing, gazing at the sky, wondering just when the troops are going to arrive.  It doesn’t matter that I haven’t called them, I just assume that somehow, magically, they will know I need them and come running (or flying in the case of the image above).

Other times I get a whack in the side of head and realise that unless I ask, it just won’t happen.

And vague mentions of stress are not enough.  When I finally work that one out and actually specify to someone who can help that I need their help… then I’m finally getting somewhere.

That whack in the side of the head (not literal) came yesterday and today, I asked for help.  I called in the troops.

Just in case you haven’t got it yet, that is a major accomplishment for me.

Yesterday I walked away from a situation in tears, out of sadness for a person I love, and an inability to know how to make a positive difference in that person’s life.  I wasn’t even sure it was possible, but meanwhile I felt helpless and frustrated.  Aside from the other person’s needs, I could feel my own stress levels had skyrocketed again.  Again, because I was going through the same helplessness and frustration day in, day out.  And it wasn’t getting any better.  If anything it was getting worse.  What’s more it was something I simply couldn’t run away from (although you can bet I considered it).

I realised that I could sit, feeling helpless and frustrated, hoping that someone would come along one day and help me… but I knew (finally) what wouldn’t happen.  The help wouldn’t come (certainly not magically) and I would simply get sicker, both mentally and physically, as my stress levels continued to rise.  I finally realised that I had to find a way of getting help for myself before I become helpless, not to mention hopeless.  I know myself well enough to know that I walk a very fine line.  It doesn’t take much to tip the balance and end up in despair, depression and hopelessness.

So with all this wise thinking on board, today I went out to ask for help.  It turned out not to be quite the help I was hoping for.  It seemed that bureaucracy got in the way.  Doesn’t it always?  But almost miraculously (maybe that’s going over the top) I got enough help to change my mindset, and actually that’s what I think is the exciting part of all this.

Somehow literally walking down the street and into an office to ask for help, lifted the feeling of helplessness and hopelessness.  Even though the person I spoke to saw me for maybe five minutes at the most, I realised I wasn’t helpless.  Actually I have a hard task ahead of me.  One I would rather not have.  But I’ve got it and today I’ve been able to suck it up and really accept this role.  I’m not helpless and the situation is not without hope (although definitely pretty bleak).  It’s just tough.  But I can ‘do‘ tough.

No one said this to me.  I just got the message myself.  Sometimes weird things happen that way and we find our own strength to do what’s needed.  Somehow by going out to look for help from another source, even though I didn’t get exactly what I was looking for, I did get what I need.  I really hope that’s not too confusing.

Today’s quote might seem like it’s not really relevant, but actually it is totally relevant to my situation and my effort today to take back some control in my life.  If it only means something to me, then that’s okay.  Perhaps the relevance is contained in the parts I couldn’t share.  My apologies.

“The death of democracy is not likely to be an assassination from ambush.  It will be a slow extinction from apathy, indifference, and undernourishment.”

 – Robert Hutchins

 

Shifting The Goal Posts Is Okay

 

Recently I have seen a  number of statements and general topics on social media formats which show what I see as a resignation by sufferers of mental illnesses to a belief that the point at which they are now is where they’re going to be for life.  Examples of statements include:

“It’s beyond happiness now, I just have to exist”

“Getting better is no longer an option”

“I will be depressed for the rest of my life.”

 

I am the first to say that I have been at that point myself.  Ten years ago I simply believed that happiness was not an option for me, and that yes, how my life was then would be how it always would be.

Nothing took away any sense of hope more than these statements.  Actually there was no hope (in my mind) , and I was simply existing.  If I had read a post like this at all, I would have said “it’s easy for you to say” and probably “you just don’t understand my reality“.

But I honestly believe that it doesn’t have to be this way.  Instead, this is what I believe:

“At any given moment, you have the power to say that this is NOT how the story is going to END”

― M.H.S. Pourri

 Frankly I have as much reason as anyone else to close the book, shut up shop and say “this is how it’s going to be“.  I have two decades of diagnosed mental illnesses.  I have been told repeatedly by doctors, who were ready to give up, that this is just how it’s going to be for me.  I know what it feels like to have no hope.  My family knows too how it is to have no hope for me.

25 years ago I was healthy, relatively happy and quickly climbing my way to the top of the corporate ladder.  My goal was to be Chief Executive.  It’s almost funny to think of that now, because that corporate world I was a part of (and loved) seems so foreign to what my life became just a few years later.  One unexpected bout of ill-health, followed by post-viral depression, and my life just spiralled down from there.

I know now that I’m never going to achieve that career goal.  Actually it’s not what I want anymore either.  But I’m not prepared to settle for nothing.  I don’t want to accept that there is no cure, so that my life will be as it is forever.  And I strongly believe that if I accepted that fate, then I would simply be fulfilling a very bleak prophecy.

Credit: Wikipedia.com

Credit: Wikipedia.com

As you may know, I am a Kiwi.  We New Zealanders take a fair bit of pride in thinking we know more about our national sport, rugby, than we actually do.  I admit from the outset that I’m not a rugby fan (there are a couple of us in the country!) but I know enough to know that sometimes it’s okay to shift the goal posts.

One end of a rugby pitch to the other is a long way, especially if you’re being chased by the entire opposing team.  Just watching them, I know it’s a fair workout from one goal post to the other.  I think it’s 100 metres.

Now think about rugby for school children.  We know that full distance is too far, and so young children play ruby across the field (70 metres).  It just makes sense and it’s realistic.  It’s something they can work at to achieve.

Do you need another example?  Try wheelchair rugby.  It’s one of the toughest team sports I’ve seen.  They play on a basketball court.

It’s the same when you’re learning to swim.  I remember my big goal was to be able to swim the whole length of the pool.  But that was unrealistic for this six year old, and so my first aim was to swim across the width of the pool.  And I was so proud when I did.

I can look back at my life 25 years ago and think I’ll never get to my goal and so I may as well stop right here.  Or I can shift my goal posts and work at something that is achievable, in spite of both my chronic mental and physical illnesses.  That has to be better than sitting feeling feeling I’m doomed… and getting more depressed by the minute.

I know that it’s hard to see beyond mental illness, especially those illnesses that are technically with us for life.  I’ve been pretty sick (thanks fibro!) over the past few weeks and yes, I would find it easy to give up and accept an invalid life.

But I don’t want to.  I don’t know exactly what is ahead of me, or even what is possible, but I have hope for better than I’ve got now.  It’s why I use the blog title I do. Infinite Sadness… or hope? is my expression of choosing  hope over what I have lived with through illness.

I don’t know what ‘getting better‘ looks like.  I don’t know what it is going to involve to get there.  I know that my ‘being better‘ won’t look like the life I had 25 years ago.  That’s just not possible now.  There are so many unknowns and obstacles right now, that it would be so easy to settle for never ‘getting better‘.  While it wouldn’t be comfortable, it would be the easy option.  But I simply can not accept that.  I have to hope that it will be better.

One last thing.  Mental Health Awareness Month begins today (on NZ time zone anyway).  Wouldn’t it be great to have it focussed on hope?  Mental Illness is a terrible thing but I believe that no matter what diagnosis we have, there is hope for all of us.

I strongly believe that this following statement applies as much to the mind as to the heart.

If your heart is broken, make art with the pieces.


― Shane Koyczan (2013)

 

Remembering Trauma – Anzac Day 2014

 

Image Credit:  Aaron Campbell Photography See his Facebook page at:   https://www.facebook.com/AaronCampbellPhotography

Image Credit: Aaron Campbell Photography
See his Facebook page at: http://www.facebook.com/AaronCampbellPhotography

Today, in Australia and New Zealand, we commemorate Anzac Day. It is a national day of remembrance in both countries that broadly commemorates all Australians and New Zealanders (including animals) “who served and died in all wars, conflicts, and peacekeeping operations”.  It particularly honours those Army soldiers who served at Galliopli in 1915.  

There are many commemoration services held around both countries and at Galliopli, but I have to admit that it’s been a while since I have been to one.  I simply don’t ‘do‘ crowds.  That doesn’t stop me from remembering though.  While I am an advocate of peace, I have great admiration and respect for those who have served in the past, and those who still serve.  I just hope and pray that one day such service will no longer be necessary and we will find a way of living in this world in harmony.

My chief memory relating to Anzac Day lies with my paternal Grandfather.  Let me tell you about his war service.  Don’t worry.  It won’t take long.

My grandfather joined the Royal New Zealand Navy  (RNZN) Intelligence Division as a Lieutenant to fight in World War Two.  He was stationed at home in New Zealand but was required to go overseas regularly.  He was injured in an accident (in New Zealand) and those injuries left him unwell for the rest of his life.

That’s it.  We don’t know anything else.  In the approximately five years my grandfather served, and in the years after, he was never allowed to tell anyone of what he did, and where he went.  Granddad died about 25 years later and took his secrets with him.

It strikes me this year as I remember him, and others who served, that the trauma they witnessed must have been immense.  Now days we are becoming more aware of the affects of the trauma soldiers face.  We recognise the existence of Post Traumatic Stress Disorder (PTSD) and the havoc that can play on their lives in the years following their service.  I know we still have a distance to go in understanding the need for help and treatment but awareness in itself has to be good.

But today, I am struck by the lack of this knowledge and understanding back in the time my grandfather served, and before in previous wars.  I suspect war was very different then, to what it is today, but no less traumatic.  Not just for those who served either.

My father was a child at the time his father was away at war.  Neither he, not my grandmother were allowed to know anything.  Not then, not ever. The hardship and fear they must have carried with them must have been huge.  Remember too, this was a time of no emails, no Skype, simply no communication but the odd letter.

My grandfather, and many others with him, lived both then and into the future with no assistance in dealing with what they had seen, done and heard.  The affect on their lives must be beyond our modern comprehension.

Granddad died, from his war injuries when I was three.  I have just one memory of him playing in this front garden with me.

“They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them.”

 – Laurence Binyon, For the Fallen

 

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