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

 

Please Understand What It’s Like To Be Me (…Or A Giraffe)

Cate Reddell:

This is my latest post on A Canvas Of The Minds.

Originally posted on A Canvas Of The Minds:

Cate

Click to read Cate’s bio

TRIGGER WARNING:Discussion of issues related to Eating Disorder recovery. No numbers involved.  

Also, there is a rather nasty animal welfare story mentioned in the first two paragraphs.

I read an horrendous story the other day about a giraffe tragically killed in South Africa recently as it was being transported on a busy highway.  The giraffe was decapitated when the truck it was being transported by drove under an over-bridge.  The giraffe was blindfolded (it makes me wonder if the driver was too), and I think that is standard practise for transporting these animals, to keep them calm (personally blindfolding me will not keep me calm).


Somehow the giraffe was expected to know just when to ‘duck’ as they passed under an over-bridge.  The truck driver blamed the giraffe for its own death. It seems to me that the driver totally failed to…

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An Apple Never Falls Far From The Tree

Image credit: Wikipedia.com

Caution: This post contains a (small) mention of self harm and eating disorders.  Read at your discretion.

Today my family are gathering together.  No special reason, except that it is a rare opportunity when we are all in the same place at the same time.  My memory is a little hazy but I’m guessing that it is about 18 months since we have been altogether.  Of course, one important person will be missing.  My father who died over three years ago is a very big absence in the room.  Perhaps especially because Dad was always my reason for being part of the family.  Now I feel a little lost without him there.

Family gatherings are something I find hard.  I have fallen near the tree yet I struggle to find a place for myself amongst that basket of apples.  I don’t fit.  Perhaps I should say I don’t feel I fit.  Actually I have never felt I belonged there.  I guess, that I have felt an outsider in so much of life, and the family context is just one more.

In the past I have tried very hard to get my family to reject me.  I grew up with this notion of unconditional love, which I didn’t believe really existed and also didn’t really understand.  I spent years doing and being something that I expected my family would reject.  I would prove that this unconditional love thing was a hoax.  To my surprise, they didn’t reject me.  Perhaps they didn’t like what I did always, but they never rejected me.  I admit I was surprised.  I was sure I could prove them out, but I never did.  For some reason, largely beyond my understanding, they kept on loving me.

I’m not at all sure that they necessarily like me, or actually ever liked me, but that is a different thing than love.

I don’t fit.  I’m not sure that I fit anywhere in this planet (except maybe surrounded by another family of stuffed animals) and so when I am in a group (whether it is my family or any other) I feel out of place.

While my siblings were creating marriages and families (very lovable families at that), I was creating a canvas across my body of places I had dragged the razor blade, not to mention destroying my own marriage.

When they were building careers, I was focussed on starving myself  and plans for death.

When they were building lives, I was gradually destroying mine.

Admittedly I am not in that destruction phase now, but I know it still hovers not far from the distance.  That’s just what chronic mental illness does.

When their children are growing up (fast), I am by choice, alone.  I don’t know how to be anything else, nor do I think I want to.

My life has turned out (so far) very different from my family.  Practically, I have no idea what to talk about with them.  My interests, let alone my goals are so very different.  But more than that, I just feel like I have no right to belong.  My achievement for life is to still be living today, and while that is big for me, I know it is not easily comprehended by others.  Nor is it something to talk about around the dinner table while the children play.  It’s a conversation stopper rather than anything else.  I just don’t know how to fit into the conversation in the room.

I’m more comfortable outside with my good canine friend Duncan.  He will no doubt be locked in his kennel today, to protect unfamiliar children and Grandma who risks being knocked over in his exuberance and friendliness.  Frankly I would almost be happier out in the kennel with Duncan.  He’s not worried about social niceties, careers and school reports.  He’s not worried about having conversation.

But it’s not like that, is it?  I can’t hang out in the kennel, and to be honest sometimes Duncan’s kennel needs some ‘housekeeping‘.

It’s another time when I have to be with the people, yet I feel so out of place.

My family are good people and I know they love me.  I want, and need them in my life.  I’m still not convinced that it’s unconditional love but I’ve stopped trying to prove that.  I’m not sure that humans are capable of unconditional love, but maybe that’s another topic.

I know my family have suffered in a different way, during the years of my destruction.  But they seem to have little understanding of my life of chronic illness, both mental and physical.  We are two types of apples, from the one tree.  I want to be with my family today, but yet again I have no idea of how to be with them.  Somehow Duncan is so much easier.

“The boughs, without becoming detached from the trunk grow away from it.” 

― Victor Hugo, Les Misérables

“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.

Who’s Going To Look After Me?

Who’s going to look after me?  Well, I guess that’s Me!

(If you’ve got this far then you’ve got the answer now, so if you choose to skip the rest of the post below, I’ll understand ;-) )

I live on my own and have done so for a while now.  Actually to many people’s surprise, I like it that way.  And I’ve learnt how to look after me, simply because there is no one else who is going to do it.  That means that I know how to do many things that others assume need two people.  Chronic illness (and low income) mean I know how to fend for myself with whatever is in the house, and whatever is missing.  Sure, sometimes it would be nice to have someone look after me, but I don’t need it.  And that is a huge advantage in my life as it is right now.

Today was one of those days where I woke up immediately knowing that fibromyalgia was here for a visit.  With an anthem of Beethoven’s Ode to Joy ringing in my ears (thanks to the still ever-present music hallucinations) I can’t say I was overly enthused about the day.  Played once is lovely but when it’s gone on repetitively for about 30 times, any music turns to beyond ugly.

Add to that, a feeling around my head that brain fog was back (oh yay!) and my body feeling the presence of a hundred rocks and shards of broken glass.  Nothing was looking good, although I don’t want to misrepresent things.  There are plenty of days which are worse, I just knew that today I needed to rest.  Otherwise bad would probably become worse.

As usual there were things that weren’t going to happen.  Perhaps most important (to J anyway) was that I wasn’t going to get my nephew’s birthday present wrapped and posted in time for his birthday on Saturday.  Sorry J.

And the usual support I give to another human being most days, was also not going to happen.  She’s used to this.  She doesn’t necessarily understand the existence of chronic illness in my life but she knows the consequences for her.  And that’s what matters in her world.

I rang and made my apologies.  Right now is the time I most need to hold onto looking after me.  It would be very easy to give in, regardless of how bad I feel, when I hear on the other end of the phone:

What About Me?

followed shortly after by

Who’s Going To Look After Me?

Those are really hard questions to answer, especially when you’ve had almost a lifetime of wonky learning that I have had to re-learn for myself with many hours of therapy and self-talk.  I should stick in right here that actually there wasn’t necessarily anything wrong with the teaching I got.  It simply wasn’t detailed enough.  You see I learnt half the message, and more often than not, failed to get the important part.  While I don’t have children and so I don’t know a whole heap about teaching them, it strikes me that many times something I needed to learn as a child was simplified so much that I entirely missed the point.

I’m not blaming anyone for this. It just happened.  I missed the point so many times, but I know many children taught the same lesson, got it.  Maybe I just learn differently.  Maybe I just needed more specifics.  Maybe… anything.  It’s simply that what I got in the way of teaching didn’t work for me.

One of the things I learnt, rightly or wrongly, was to put other people ahead of myself.  My lessons with Christian based and there is plenty in the Bible that I could misinterpret to believe (as a child) that everyone else was more important than me.  This isn’t a biblical post so I’m not going to get into what the lesson really was meant to be.  What matters is what I learnt.  Anyone on this planet was more important than me and I had to put their needs first.  It’s just a shame that no one realised how wrong I had got this.

While I’ve now learnt that I matter and that I need to take care of myself, the damage was done and in spite of many hours therapy, and many hours talking to the person who taught me as a child, if I’m not careful I still find my thoughts going back to putting everybody else first.  It’s nothing to do with selflessness either.  Just me not realising that my needs mattered.  Actually the line I learnt (from a Sunday School song) was “Jesus first, Yourself last and Others in between”.  It spelt J-O-Y and I was under the impression that I would be happy if I put myself last.  It is still very firmly stuck in my mind, and I have to consciously change my thinking.  It’s really no wonder that I ended up deeply depressed years later.

So today when the question “Who’s going to look after me?” came through the telephone I had to consciously stop myself from leaping to look after her.  I had to put my needs first, and I know that if I hadn’t it would be longer before I could be back to her.

Maybe it seems so simple, and I know there have been a few therapists in my time who didn’t seem to understand how much I had this stuck in my mind.  I guess when I learnt this as a child, even though I got it wrong, I held onto it.  Tight.  So much so that many years later, it is a constant battle in my head to change that almost automatic thinking.

Today I’m looking after me.  Tomorrow I will be too.  And for the third person in this post?  I left her with a few ideas of how she could care for herself today.

“If I had my child to raise all over again,
I’d finger paint more, and point the finger less.
I’d do less correcting, and more connecting.
I’d take my eyes off my watch, and watch with my eyes.
I would care to know less, and know to care more.
I’d take more hikes and fly more kites.
I’d stop playing serious, and seriously play.
I’d run through more fields, and gaze at more stars.
I’d do more hugging, and less tugging.
I would be firm less often, and affirm much more.
I’d build self esteem first, and the house later.
I’d teach less about the love of power, and more about the power of love.” 

— Diane Loomans

 

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