“That’s Nice, Dear”

Excuse me for a moment while I rant.

Here’s a bit of free advice.  Well, anything here is free but this is worth taking if you’re not too strong in the ‘wise‘ department.  Don’t under any circumstances say “that’s nice, dear” to anyone unless you’re absolutely sure that ‘that‘ is actually ‘nice‘.  If you say it just to be ‘nice‘ but haven’t checked whether it is actually nice, haven’t even heard what was actually said, or just making conversation… you’re getting yourself into hot water.  Being told “that’s nice, dear” is not at all nice when ‘that‘ is anything but nice.

What does ‘that’s nice, dear‘ mean anyway?  Nothing.  It’s simply something to say when you can be bothered saying something real.  In other words, it’s not worth saying, so don’t say it.

And just while we’re at it, forget about ever saying “I told you so“.  That might seem obvious but I heard that one this week.

End of rant.

It’s been a trying week in Cate’s world.  A little too much of ‘Cate versus Cate’s mind’.  A few ‘that’s nice,dear‘s didn’t go down too well, especially followed up by “I told you so“.  They never do, but this week I just wasn’t in the mood for meaningless words.  I would rather have had silence.  Actually I always prefer silence.  Silence in a wonderful thing… until you start thinking too much.

I know that it is often said that we should let go of the things we have no control over.  But that is so hard.  I have so much in my life right now over which I have no control, and actually letting some of them go is not an option.  I’m the first to admit that I could let go of some of those things, the problem is that I don’t want to.  Yes, mindfulness would work… if I wanted it to.  That might sound crazy but I’m one of those people who likes to have worked everything out in my mind before I let it go.  I want to understand the puzzle, understand what I could or couldn’t have done differently.  I want to know that others in the situation are okay, and even if I have no control over that, I still want to work it all out in my mind so I can get some peace.  If I simply let it all go, my mind might be easier in some respects but I feel like I don’t have closure.

For a moment, let’s go back to my last post, Claiming My Voice Back.  It wasn’t the easiest to write, let alone press ‘publish‘.  Once I had though, I began to feel pretty good.  I had done it!  It had taken me a year (minimum), but I had finally done it.  That felt good.  But then I started thinking, because in that situation of my atrociously awful internet relationship there are a whole heap of unanswered questions, which ultimately I have to simply let go.  I’m never going to be able to know for sure.  I know that, yet my mind that wants to ‘work everything out‘ wants the answers anyway.  So by the next day my mind was spinning wildly.  And frankly, it was making me emotionally sick.

It’s a bit like when you know you want some more ice cream, but you know you’ll explode if you eat anymore.  You give in to one side of your brain, and end up later feeling sorry.  I did this to myself.  I made myself emotionally sick , yet I couldn’t stop trying to piece together the puzzle.

The other issue in ‘the things Cate can’t control‘ discussion, is those things that I might not be able to control, yet backing away isn’t an option.  Just sometimes we have to stay in the situation anyway.  Those times are hard.  I’m not sure if I’m sitting waiting for the train wreck in front of my eyes or just watching the sun go down.  The one thing I know is that I can’t back away or for that matter, turn my back.  It’s really hard to handle those situations.  Much as I like having control in my life, I realise that I can’t have control over everything (damn it!) and I have no control over the lives of those I love.  I simply have to watch.

With all these things going on this week, I’m starting to think I need some help.  The atrociously awful internet relationship has had a huge impact on my life in so many ways, and while I have dealt with so much of that in the past year, I am still find it incredibly hard to trust people.  Anyone.  Fairly intense paranoia would be a good description and I can feel myself pulling away from humankind.  I realised this week I might just need some help with this.  Maybe I can’t do it on my own.  So I’m thinking about whether to go back to therapy for a while.

I’ve done a lot of therapy in the past and I don’t think I need anything long-term, but I am starting to realise that I can’t do this alone.  It is too big.  Too much went terribly wrong and it’s finally dawned on me that it is too much for this one woman.

I’m not sure how I’m going to make therapy happen, but I realised one thing this week…

When something bad happens in my life, I can use it as an excuse to destroy me… or I can get back up, tend the wounds and keep going.

If more therapy is what I need to be able to keep going, then I will find a way to make that happen.

And if anyone says “that’s nice, dear“…

“Another page turns on the calendar, April now, not March.

………

I am spinning the silk threads of my story, weaving the fabric of my world… I spun out of control. Eating was hard. Breathing was hard. Living was hardest.

I wanted to swallow the bitter seeds of forgetfulness… Somehow, I dragged myself out of the dark and asked for help.

I spin and weave and knit my words and visions until a life starts to take shape.

There is no magic cure, no making it all go away forever. There are only small steps upward; an easier day, an unexpected laugh, a mirror that doesn’t matter anymore.

I am thawing.” 

― Laurie Halse AndersonWintergirls

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)

Going Around In Circles

For a while now this song has been going around in my head.  My head has been going around in circles.  It’s getting tiring.  I just want it to stop.  I just want some clarity about what do I do now.

 

“Oh, Delilah Blue, what do we do now? What do we do now?
Magnolia memories fill my eyes and the sweet bird of youth done flown away
But don’t let anybody ever say
This old dancer never had her day
’cause this old dancer always knew we’d make it through, Delilah Blue.”

There is a growing amount of stress in my mind.  It’s caused by a number of things.  Health, wealth (or absence of it), family, oh and let’s not forget life in general.  Admittedly the first three are perhaps giving the biggest stress, and then because the stress grows inside my head, it eventually becomes a case of everything.  Everything has my head turning in circles, and it don’t feel too good.  It’s time to take some action on the things that I still have a little control over.  Maybe that will make the uncontrollable things seem less daunting.

Some of you might know that I started another blog recently.  If you didn’t know, it’s just that I hadn’t got to you yet.  For those that did know, the blog no longer exists.  I quickly realised that it wasn’t going to serve the needs I had.  Everything is now gone, so if you missed my most recent posts there, then you’ve missed.  Apologies if you think I messed you around.  That wasn’t my intention.  It’s just sometimes it’s easy to see that “this ain’t going to work“.  It didn’t.

For those of you who didn’t know I started a new blog, life goes on as it was.  In time, I may (or then again, may not) publish the material from there on here.  Meanwhile I’m still answering my question “what do we do now?“.

Back to the real purpose of this post though.  There’s one thing I really hate and that’s not being in control.  I spent years with an eating disorder all about that issue.  I couldn’t control aspects of my life so I chose to control how little food I put in my mouth and how many hours exercise I did each day.  So I know control has the potential to bite me (excuse the pun).  Not just on food though, I know it has the potential to destroy me… if I let it.

I seem to have little control over my physical health right now.  I have got into a pattern of going from (fibromyalgia) flare to flare, with nothing in between.  Where are the good days?  They don’t happen and still having not resolved the issue of pain medication, it isn’t fun and it’s doing my head in.

Wealth?  Well most of us have that issue don’t we?  Especially if having to rely on government welfare.  Especially having to face medical costs.  I guess I find winter even harder for the wealth issue, thanks for power bills.  A house that constantly leaks warm air (thanks for earthquake damage) is not helping.  I seriously considered this week shifting myself entirely into just one room of the house.  Impractical as it was, I was reminded of a children’s story I loved when growing up.  The main character broke her back and was shifted, bed and all, into the family lounge so that she could be part of the family.  Considering this for myself left me unsure whether I wanted to laugh or cry.  Anyway, I didn’t do it.

And as for family?  Sometimes, and more often than not right now, I feel exceptionally helpless.  I can watch but can do so little.  This week I have felt incredibly alone with this burden.  Loving someone but not being able to make it better, hurts like hell. And it seems like when I’m not there because of my own health, their health suffers too.   It’s a lonely road, and I know there are few answers that I can actually make happen.  I just have to be there, and often that’s harder than anything.  I guess my family had to watch me fade from their eyes for what was a very long time (thankfully I eventually came back).  I think what I feel now is a little like that.  Watching someone fade.

It hurts.

“Are the days of winter sunshine just as sad for you, too? When it is misty, in the evenings, and I am out walking by myself, it seems to me that the rain is falling through my heart and causing it to crumble into ruins.”

— Gustave Flaubert

 

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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Lucy In The Sound Dome With Diamonds

I’m not about to debate the true meaning of ‘Lucy In The Sky With Diamonds‘ by the Beatles, but it sprang to mind when thinking about writing this post.  Am I seeing diamonds in the sky?  No.  But the popular belief that the song has something to do with drug-laced hallucinations is appropriate.

No, I’m not doing drugs.  Well, not anymore than the small mountain of prescribed psychotropic and pain medication.  I am, however, living my life in a sound dome.  Where I go, it goes.  It’s actually very clever.

The connection for me is that I’ve been having hallucinations for six weeks now.  I am hearing music that is not there, nor can anyone else hear it.

I’m not seeing things, but I am hearing plenty.  Plenty of music, that is.  And while we’re about what ‘is‘ and ‘isn’t‘… I’m not psychotic (confirmed by a doctor!).  This is nothing to do with my mental health, although it’s fair to say that as time goes on, it is having a great effect on my mental health.  The music hallucinations I am having are related to my ears, and not some psychotic illness.

If you want to know more about music hallucinations, you can do your own googling.  What I want to talk about is how these auditory hallucinations are doing my head in right now.

You might think that six weeks of music that is almost constant in my waking hours, would be welcome, especially if you’re not having to pay for it.  But actually this is anything but welcome.  Let me explain:

  • I don’t have any control over when it plays, or at what volume;

  • I don’t have any control over what type of music plays.  Right now, I being inundated with full ensemble, church music.  Yes, that’s hymns, mostly with orchestra, choir and at times, a full pipe organ.  It’s not the type of music I would choose and actually having such a full exposure to this in my earlier life, it really does nothing but press emotional buttons;

  • I don’t have control over the quality.  I regularly hear wrong notes and off-key singing.  I regard myself as enough of a (even if lapsed) musician, that I find the errors mostly offensive.  How about when the instruments aren’t in time with the voices?

  • Sometimes my brain gets really clever and plays two separate tunes at once.  That’s fun.  Actually no it’s not, it simply becomes noise.

I don’t know why my brain/ears are choosing to do this.  That’s slightly freaky especially as with time, it seems to be getting worse and louder.  I’ve had a medical opinion (as I mentioned in What’s Fair?) but I’m still waiting to see the specialist.

Musical hallucinations running about 95 per cent of every day are also affecting the rest of my life.  Again, let me explain:

  • As an introvert, I like my silence.  Oh, how I miss it.  The only thing that successfully drowns the sound is the television (as long as I totally focus on it and don’t just have it as background noise).  But then that’s just more noise.

  • As someone who is hearing impaired and who has worn hearing aids for the past six years, I also find background noise stops me from hearing the things I need to hear.  Now days I don’t often listen to music for this very reason.  But now I am overloaded in background noise flowing from my left ear;

  • As someone who needs plenty of sleep, I need quiet.  I am trying to use a Sleep App and while that generally works for me when I am dealing with a loud case of tinnitus, with the hallucinations I just find the Sleep App creates more noise.  Oh, if I could temporarily amputate my head and leave it in another room!  Okay, I’m only half joking;

  • As a fibromyalgia sufferer, I need stress-free everything.  With an increase in stress, partly because of the noise and partly because I don’t have any definite knowledge of what is really going on in my head, that all adds to more stress in my life.  That is resulting in more pain, more fatigue and what seems like permanent brain fog.  None of that is good or welcome;

  • As a reader (yes, including your posts) I simply can’t concentrate to read when I have this noise going on.  I’m not sure if that is a by-product of past Electro Convulsive Treatments (ECT) or the brain fog related to fibro.  What I do know is that I am really struggling to read anything;

  • As a writer (and blogger), the same applies.  That’s part of the purpose of this post to explain to you why I haven’t been posting regularly.  I apologise, especially to the many who have recently followed me.  There’s nothing like following a blogger and never getting any new posts to read.  Today I am using my trusty Sleep App again as I write.  It’s not really working, so if this is the most poorly written of all my posts, you’ll hopefully understand why;

  • And finally as someone with a small pile of mental illnesses.  I started to realise last week that these hallucinations are affecting my mental health.  I’m fighting not to slide back into Depression.  Some of the worst of my Borderline Personality Disorder (BPD) traits are rising to the service and I find myself constantly argumentative and irritable.  Trying to withstand idiots has been beyond my ability at times, and I want to change the world… NOW!  Oh and one more thing.  It doesn’t seem related but I have absolutely no interest in eating right now.  That’s not good for someone with a history of Anorexia but I’m watching that one. Right now all of these issues have me taking a break from Social Media (except for WordPress).  Hopefully that way I won’t offend anymore people.

That’s probably more than you wanted to know but as you can see, these hallucinations are affecting my whole life.  I have a list of other symptoms for the ENT specialist when I get there.  I really hope s/he can help me as there wouldn’t be much worse than being stuck with these hallucinations for life.  That scares me as much as anything.

Please don’t give me advice (unless you are a ENT specialist).  I didn’t post this to get advice, but more to explain just what is going on for me and why you haven’t seen much of me lately.

My quote to finish is one more problem I have right now.  And it is perhaps the scariest of all.  I really struggle with it at night when I think the noise I can hear is someone breaking in.

“I no longer knew what was real and what wasn’t.  The lines between reality and delusion had become so blurred.” 

― A.B. Shepherd, The Beacon

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