The Novelty Had Worn Off

I guess we like to think that every baby born is welcomed with a great deal of happiness.  I admit that I have never had a baby myself, so could be accused of being out of my depth… except that I was a baby once.  I know it from that angle, even if I have never had my own child.

I’m pretty sure that my birth was not welcomed with happiness, let alone joy.  There is only one photo of me as a baby.  You see, the novelty had worn off.  I was number three child, and I certainly wasn’t planned.  I came just ten and a half months after my next brother, and my mother will openly admit that my presence was an embarrassment to her.  Two babies in the pram was more than she wanted.

Lately I’ve been thinking a lot about my childhood and wondering just how happy I was as a young child.  My first diagnosis of a mental illness didn’t come until I was 28 years old, but at that time everyone was pretty amazed nothing had shown before then.  I’m inclined to think that maybe there were signs but no one looked, or knew what they were looking for.  When I think about some of the (slightly) unusual things I did as a child, and then as a teenager, I am amazed that no one said “Wait a minute.  What’s going on here?”

But then this is the 1960/70’s I’m talking about and who went looking for signs of mental illness in their kids?

Deborah Serani, psychologist has written a book last year entitled ‘Depression And Your Child‘.  I think I’d like to read it, although the focus of it being about the reader’s child is not what I’m after.  She wrote a blog post, What Adults Need to Know about Pediatric Depression and I found that interesting, although I admit it also made me sad.  She reported that

“In the United States alone, evidence suggests that up to 1% of babies, 4 percent of preschool-aged children, 5 percent of school-aged children, and 11 percent of adolescents meet the criteria for major depression.”(1.)

Wow!  Even one in a hundred babies having major depression is huge, without stopping to think about the older age-groups.  She continues to list ten myths relating to childhood depression, which all parents should know.  It makes worthwhile reading, even for this non-parent here.

I don’t know whether I had depression as a baby or a child, but the odd things I started doing go back as far as I can remember, which suggests to me now that something was up at a young age.  I’m sorry but I’m not going to tell you what those odd things were.  Just know they were a little different from normal, and seem to me like a coping mechanism I used from a very young age.

I’m not saying this to in any way accuse my parents of anything, but I suspect there was something going on that they didn’t realise might give clues to my state of mind.  This is more about my own journey to work out what has made me who I am.  I’m not interested in blame, just in being able to understand myself.

Phew! It makes me sad for that little girl who was me.  There’s no denying that because if my theory is right, then it has had an enormous impact on my whole life.

I need music to finish.  As you will see the lyrics don’t go with the music.  Purposely.  I just had two tunes in my mind, for the child in me.

You with the sad eyes
Don’t be discouraged
Oh I realize
It’s hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small

But I see your true colors
Shining through
I see your true colors
And that’s why I love you
So don’t be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow

 - Cyndi Lauper, True Colors

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It’s Been A While…

It’s been a while since I lasted posted.  Much longer than I had intended, but as you know, that’s the way the cookie crumbles sometimes.  There has been a hard time of depression, which unfortunately still continues.  It’s difficult then to motivate myself into anything, and time has just passed without me being really aware of it.  It seems that when depression isn’t winning the war, then fibromyalgia is.  I seem to swing from one to the other, without as much as a break.

There have been two dilemmas pressing down on my desire to blog right at the moment.  The first is a simple case of needing to protect the privacy of those around me.  Mostly it is simple to disguise identity, but sometimes it is not so easy, especially when I write under my own name and people in my ‘real‘ life read my blog.  The result is that some issues just don’t get written about.  The people around me do not get a choice in whether I blog, so I must appreciate that, and leave them out of the equation as much as possible.  Sometimes it means no posts, and I avoid those topics completely.  It’s far easier than causing offence unnecessarily.  But often anonymity has its attractions.

The second dilemma has been a more difficult and painful one.  From the experience of being lied to, abused and manipulated, I find myself reluctant to ‘put myself out there‘.  While in the past I was willing to write pretty freely of my experiences and feelings, once I got slapped in the face (hard!) I am not quite so willing to be open.  Because the pain came initially through my blog, I think it’s natural that I need time to reassess.

What is it that I am willing to ‘put out there’?  What is it that I am able to share openly, while protecting my own need for safety?  How can I achieve my goal of wanting to write about mental illness recovery, without putting myself at risk of abuse?  These are the questions that I need to answer for myself, and if you have thoughts I’d love to hear them.  They’re difficult questions, especially once someone has broken the trust, and I might take a while yet to work out exactly what I want now.

Ultimately there is always risk when writing openly.  I know that, it’s just that I need to decide for myself how much risk I take.

So meantime…

Do I start posting recipes?

I don’t think so somehow.  While that might have been me 20 years ago (in my days as a foodie… I could afford to be one then), it’s not me now and I think I would die of shock if I found myself posting recipes.  All power to those who do, it’s just not me.

So…

How about I post pictures of my pets?  That usually goes down well, and personally I love seeing photos of pets.  So try this…

Meet my dog, Dixon.

Dixon

Dixon is 34 years old, and has yet to need to be taken for a walk, yet to need to be taken outside to ‘do his business‘.  He hasn’t even needed a trip to the vet.  Oh, except I think an eyebrow needing re-gluing but actually the vet wasn’t required for such a procedure.

While he gives excellent cuddles with a bit of encouragement, he will never wake me up with sloppy, wet kisses to my face.  While there are a few drawbacks to this kind of dog, you have to admit that 34 years for a dog is ‘going the distance‘.

My best friend at high school gave me Dixon, and he is named after her.  She had a similar dog (different colouring).  My friend died tragically in a car accident about 15 years ago, so still having Dixon now is very special to me.

Actually I’d love to have what you might call a ‘real dog’ but Council By-Laws in my city rule that out as an option right now, as it is a requirement to have your property completely fenced if you have a (real) dog.  That’s not something I can do, because of shared property ownership, but no one can object to Dixon.  My neighbours don’t even know he’s here. ;-)

Stay tuned for more pictures of pets, meanwhile I’ll get back to trying to work out just what is right for me in terms of blogging.

One final point.  I love you, my blogging friends.  Please don’t think I don’t.  It’s simply when one person spoils something, it takes work to find the will to trust again.  But I will find it, eventually.  And if you haven’t seen me on Facebook lately, I’ve been taking a break from there too.

“Laugh, even when you feel too sick or too worn out or tired. 
Smile, even when you’re trying not to cry and the tears are blurring your vision. 
Sing, even when people stare at you and tell you your voice is crappy. 
Trust, even when your heart begs you not to. 
Twirl, even when your mind makes no sense of what you see. 
Frolic, even when you are made fun of.
Kiss, even when others are watching.
Sleep, even when you’re afraid of what the dreams might bring. 

Run, even when it feels like you can’t run any more.
And, always, remember, even when the memories pinch your heart. Because the pain of all your experience is what makes you the person you are now. And without your experience—you are an empty page, a blank notebook, a missing lyric. What makes you brave is your willingness to live through your terrible life and hold your head up high the next day. So don’t live life in fear. Because you are stronger now, after all the crap has happened, than you ever were back before it started.” 

― Alysha Speer

Fall Down Seven Times, Get Up Eight…

My mood had been steadily declining as the week went on.  I had made a bargain with myself to get to Wednesday.  The fact that I had to make that deal with myself indicated in itself that things weren’t going well.  I got to Wednesday.  There was never any doubt that I would.  It was my niece L’s third birthday and I was hanging out for some ‘L-time’ and I admit it, I didn’t want to create a family crisis around her birthday.

L-time was perfect.  L, her father, her grandmother and I went out for coffee (and fluffy for L).  In a bit of a daze, having taken some extra meds to get through the day, L and I played with the toys she had with her… teddy, little monkey and Sally, not to mention the cafe’s range of toys available.  We were at a local cafe that had its buildings collapse in the 2011 Earthquakes, and now runs primarily outside (it’s spring here but they provide blankets for warmth in the winter and sun hats in summer).  There’s nothing unusual about that in post-quake Christchurch and it’s good when you have kids (and adults) who need a bit of space.  Oh, and delicious cake.  For local readers, visit Under the Red Verandah Cafe (a shameless piece of advertising).

Spending a few hours with L made a significant difference to my state of mind.  I mean it went from ‘I’m not coping‘ as I (strangely for me) posted on Twitter a few days before, to ‘I can do this‘.  I concluded once again that I must get myself into the presence of L when I feel that bad.  Do not stop, do not pass go… go directly to L’s home and have some quality time with my favourite person.

The thing is I came home feeling better but I still somehow posted this picture on my Facebook timeline that night (with no explanation):

sad_teddy_bear

Image credit: The DawgPoundFreeWeb
I have been unable to find more detail of image credit but would appreciate being advised accordingly if known.

I am not sure exactly why I posted it, but usually I am very careful about posting pictures or comments that could be disturbing and/or worrying to others.  I wasn’t thinking.  I posted it with a sense of being flushed down a toilet, or maybe jumping, and turned off the computer and went to bed.

By morning I could tell that a few friends were concerned about what I posted, but perhaps more so, I realised that for me, what I had posted was concerning.  Time with L hadn’t quite improved my state of mind as I thought it might.  I was still very depressed and struggling for hope.  Living one day at a time, although it had cut down to one hour at a time.  Time to admit there was a problem and get some help.  And time to apologise to to friends.

I guess the thing for me is that earlier in the week I had tried to ask for some help (twice)  from someone close to me, but they didn’t pick up on it.  Perhaps I wasn’t direct enough.  Perhaps there were just other things on their mind, but I had to accept responsibility for the need to keep asking until I got the help needed.  That’s something that is really hard to do with you’re depressed, hopeless and you’ve already tried without success.  You probably know that feeling too.

Yesterday I saw my doctor.  Actually he wasn’t my doctor (who was away) but a very good locum who I have seen on a number of times before, and trust more than my own doctor.  The first thing he picked up on was that last month’s lithium blood tests showed that I was only just in the therapeutic range.  He felt my meds should have been increased at that time the tests came back, considering that I was already showing as depressed at that time.

What worked for me was that I was heard.  The doctor heard that my mood was dropping by the week and that I needed some help.  I am terrified of returning to my years of hospital admissions, suicide attempts and self harm.  It was a never-ending cycle in one hospital door and out another.  I will do anything to avoid going back to that lifestyle (if I can call it that).  My mood might have dropped dramatically but I still had enough life in me to do anything I needed to do to avoid that.  My doctor acknowledged that, as he increased my medication.

I have also now been given six therapy sessions (free) which may help me deal with some of the family issues going on for me right now, and affecting my state of mind.  Meanwhile, today I am going out to see L.  ‘Therapy‘ of a kind for me, and her chance to show me her new scooter and balance bike (birthday presents).

Someone said ‘fall down seven times, get up eight‘.  I don’t know who but I know it’s true.  I just have to keep getting back up.  I know this is a recurrent illness and every time I get back up is another claim of hope that tomorrow will be better.

“Needing help doesn’t make you weak, in fact quite the opposite. It makes you strong, smart, resourceful, and realistic. Being prideful is a weakness. Asking for help when you know you’re in over your head is STRENGTH. Don’t ever forget that!”

 – Unknown

Disappointed By Humanity

It sounds serious, doesn’t it?  Disappointed by Humanity. But I can’t really complain.  According to Maslow’s Hierarchy of Needs, I have all that I need.  I have food, I have shelter and I have clothing.  I have a lot of other things rated on his Hierarchy, so I have little reason to complain.  And one thing that has struck me very firmly in the past few days is that a lot of people have it a whole lot worse than me.  I have every reason to be thankful.

But I have been thinking recently after saying in recent posts that I have been going through a period of depression.  I’m not so sure it is depression after all.  It feels a little different from other times, and while I haven’t headed to my doctor to get his opinion (he’s not usually that interested in either my symptoms or in giving his opinion, so why would I waste my money?), I have been thinking it through.

If it’s not depression, then what is it?  It could be sadness, and I’m not sure where one draws the line between sadness and depression.  But I know that I have been very sad.  Day after day.  So maybe it’s that.

Then I started thinking about the ‘great’ DSM-V (the fifth edition of the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders.) which came out in May, 2013.  I’m not fanatical enough to start wading my way through that but I know there are a few new ‘disorders’ that get a mention in this latest version.

Grief, for example.  Some people claim that grief is now a separate disorder in itself, rather than previously be recognised under Major Depressive Disorder.  Now there is a two-week cut off.  Somehow after two weeks, we are meant to have moved on from our grief, and so I guess anyone still grieving is regarded as having depression.  The key indicator in my small search was that “The grieving individual typically maintains the hope that things will get better”  I presume that if they switch over that two weeks, then they lose hope and fall into depression.  Really?  Hmm.

I admit that it is well over two years since my father died suddenly.  Yes, I said two years, not two weeks.  I still grieve for my father.  Right now I am missing him terribly and would love one of his hugs, let alone a long chat about… well, everything.  Dad was my best friend.  Interestingly he became a better father to me as I became an adult, than when I was a child.  As a child he wasn’t there.  He was pursing his career, vocation, calling or simply his desire to help people.

I don’t imagine I am going to simply stop grieving for a man who made such a difference in my life.  A man who taught me what life was about, and perhaps more importantly, what mattered.

So back to the DSM-V and I admit I’m not sure then, when to diagnose grief or depression in terms of Dad.  They don’t make it easy.  I guess that’s what doctors are paid for.  Not mine though.  He’s there to take my blood pressure, ask me how my mother is (also a patient of his) and send me on my way.  And no, I’m not in the least bit skeptical and dissatisfied with this ‘service’.  And if you believe that, well… another post.

But anyway… I’m still not clear about what is going on for me right now.  Until I had this thought… disappointment is a large factor in how I’ve been feeling.  I am disappointed by many things, how I get treated sometimes (like doctor’s, for example), disappointed when a friend lies to me, disappointed when I suspect others have been less than truthful with me, disappointed when others don’t treat their animals they way I think they should, disappointed by having a hope and a dream and having it whipped away, disappointed when I see my friends being hurt terribly, disappointed by seeing bureaucracy (manned by people) disregard the needs of residents still trying to recover in a quake damaged city.  Yes, I’m disappointed and mostly by humanity.  People let me down.  They might not let me down personally but the way they act towards either me, or other people/creatures who matter to be lets me down.

My mother always used to tell me that my standards were too high.  It was a criticism.  Maybe she was right (but please don’t tell her I said that!) but I always thought she should be grateful if her daughter had high standards.  I think  my father had high standards and that is perhaps where I got it from.  But he had the ability to let it go when people disappointed him.  He had sufficient compassion to let their humanity be.  I don’t find that so easy, and I guess that is one of the things I would dearly love to chat to him about now.

My high standards are about how I treat other people.  That’s where I slip up.  I’m certainly far from perfect and I too, let people down, but like I said in my last post (I Want To Change The World) , I tend to treat people the way I would want to be treated.  Is that so wrong?  Surely not.

My only conclusion is that I need the APA to revise their DSM-V again and this time include a new disorder, Disappointed By Humanity.  It’s not quite the same as depression, but certainly framed by sadness and a difficult in finding joy in life.

I don’t feel the need to have masses of mental illness diagnoses (although I already have a few to my name) but they are helpful personally to understand exactly what is going on inside this head and heart of mine.  Save for a long chat with Dad (which I can’t see is going to happen), this is the only way I can see for moving forward.

“Joy is sometimes a blessing, but it is often a conquest. Our magic moment help us to change and sends us off in search of our dreams. Yes, we are going to suffer, we will have difficult times, and we will experience many disappointments — but all of this is transitory it leaves no permanent mark. And one day we will look back with pride and faith at the journey we have taken.” 

― Paulo Coelho, By the River Piedra I Sat Down and Wept

Remembering Who I Am

It is difficult, to almost impossible, to remember who I am when struck with depression, or indeed, anything that takes my mental health off an even keel.  Any number of the issues caused by the mental illnesses which plague me at times, make me forget just who Cate Reddell is.  That in itself is sad, although usually, at the time I admit I am not aware of it happening.

I become a shadow of me.  Maybe the clothes are left on the body, but the body is gone.  The face might be there but the happiness in the smile and the life in the eyes are nowhere to be seen.  If you only know the ‘surface’ me, you could get away with thinking I am still completely there.  But those few who love me and really know me, know that this is simply a shell of who I am.  Mental Illness has stolen from them, who I am.

The recent weeks have been difficult for me, as I have told you previously.  I have felt sad, lonely, depressed, jealous, angry and even at times, bitter.  Those feelings have been what have made who I have been in that time.  They have crowded out any feeling of being loved, happy, grateful…  and maybe a little bit silly.  Today I am reminded that these later feelings symbolise who I am when my mental illness gives me the chance.

I still feel sad, but not plagued by it.  I have seen a glimpse of the real me again, and I welcome her back.  It doesn’t mean the hard days are over.  They’re not.  I have more to work through.  I’m quite clear on that, but they don’t have to rule my life.  I can let ‘me’ shine again.

It has been said before that I can be a little bit ridiculous.  It’s true.  Actually when either alone, or in the company of people I know truly love and accept me, I can be totally ridiculous.  But let me be clear. I don’t see myself as ridiculous, or even just silly.  I’m just being me.  But I acknowledge that I can be seen this way, and that in the past I have lost some important relationships, because those people were unable to understand this side of me.

I so wish those people had celebrated the ridiculous in me, because it is worth celebrating.  It’s not only who I am but it’s who I once was, perhaps even as a little girl (when it was allowed).  But adults (particularly) have (in my opinion) a bad habit of knocking the ridiculous out of the child, let alone the adult who tries to display that trait.  In an extreme attempt, doctors tried to knock it out of me with Electroconvulsive Therapy (ECT) (see On Being A Little ‘Weird’).  Shame on them.

To give you an example of the ridiculous I am referring to, in the past few days I have changed my personal Facebook profile picture to that of an Okapi.

Image credit: Wikipedia.com

An Okapi, so I have learnt, was initially thought to be a magical, mythical creature assembled from the best parts of the other animals around it.  I like that.  I could also see immediately, that by its physical resemblance, I could liken it (a small way, at least) to having Borderline Personality Disorder (BPD).  My thinking comes from our susceptibility to take on the personality traits of the people we are with.  We do that because of our unstable sense of self.

But in my ridiculous thinking I became concerned for this particular Okapi, and this is what I wrote on Facebook a few nights ago:

“Don’t you feel a little sorry for him?”

(Reply by a friend) “I do. I think he must have some kind of identity crisis going on looking like that. What he needs to do is embrace the fact that he is different and be proud of it.”

“I totally agree. I was thinking he might need some therapeutic help to embrace his individuality. Either that or perhaps positive affirmations. My real worry is whether he might be victim to bullying for being a little different from the crowd. That’s why I have adopted him as my FB profile friend. Anything to support him.”

I recognised immediately just who of my friends could recognise, and appreciate, the ridiculous Cate.  That made the post infinitely worthwhile in itself.  Friends like that will always be treasured.

Why am I telling you this? Because for some weeks I had forgotten how to be the ridiculous Cate, and I realised that this was almost more sad than the depression itself.  That person is who I am.  When I’m depressed it is impossible to remember how to be me.

Does anyone else notice that I can’t be me?  I’m not sure.  I suspect that the few who know me really well, and love me in spite of my silliness, can see if I am just trying to mimic her, but I also suspect that to most of the world, they think they are just seeing me.  That too, is sad.

I read a this statement today:

Image credit: Facebook  – Bliss Sisters

I love that, and it’s what I’m going to try to do.  Maybe if I work hard enough on it, I can drive away the depression.  I am still me, mental illnesses and all, but it doesn’t have to be all of me.  There is much more to me than mental illness… thankfully.

“To be fully seen by somebody, then, and be loved anyhow – this is a human offering that can border on miraculous.”

~Elizabeth Gilbert

No Tears

At the beginning of today I was going to write about a newspaper report from the weekend, which told how the New Zealand welfare authority, Work and Income NZ (WINZ) plan to push beneficiaries with mental illnesses into work.

It sounded just like what is happening in the United Kingdom right now, and was worthy of at least a post or two.  But I struck a problem.

How do I write a post about an article which I simply don’t have the concentration to read? I gave up (for today).  Sometimes I just have to accept that I’m beat.  Right now I have little ability to read any more than around a paragraph.

Going back a few weeks, I admitted (see Blocked) that I was perhaps a little depressed.  It was a ‘perhaps‘ back then, but a few more weeks on and I’m pretty sure that depression is alive and kicking.

At that time I was having problems with starting to draft a post but not being able to finish.  That’s still an issue, but now I don’t even get started.

My heart’s desire is to climb into my bed and stay there.  The stronger that desire gets, the more I know I am depressed.  Sometimes it gets tangled up in the symptoms of fibromyalgia and genuine need to go to bed, but I ain’t fooling no one.  Actually, that’s another issue, but I certainly am not fooling myself.  I know this state of mind oh so well.

The thing about climbing into bed is knowing that I’m safe.  Well safe, from my perspective.  It’s like climbing under a rock.  A strong, solid rock that won’t allow anything to fall on me while I’m not looking.

Actually since the advent of earthquakes in this city, we don’t really have rocks like that anymore.  It’s not really safe under anything except maybe a door frame.  Frankly I’d stay as far as possible away from rocks.  But a girl has got to be allowed to dream, even if Mother Earth changes the rules.

Back under my (fantasy) rock there isn’t a lot of ruminating going on.  I haven’t got that far yet, although no doubt it will come.  It’s just me (and Ted) under the duvet where I don’t have to think, don’t have to feel, and don’t have to interact with anyone.  It’s so much easier.

I’ve been expecting myself to cry.  But there are no tears.  I think that’s almost worse than the depression filled with tears.  Instead I’m numb, and it suits me that way.  Sure, tell me that tears will help but really tears are messy and there is the enormous fear in my mind of…    what if they never stop?

What if tears turn this depression into something worse?  And yes, worse does exist and from days past I know it too well.  I don’t want to go there.  So even without trying now, I stay away from anything that would produce tears. I just stay numb.

The thing about depression is that it’s slightly different for every poor soul who goes through it.  I don’t think there is a right or a wrong.  Just hang onto hope and keep going.

And on that topic, if anyone tells me that hope means:

Hold On Pain Ends

I’ll be around shortly to hit you over the head with my keyboard.

Well maybe not, but its really a bit trite, isn’t it?  Maybe for some lucky souls the pain does end, but for most of us with chronic mental illness, we’re in this for the long haul.  Pain might ease, it might even change it’s nature, we might find ways of living with it, but I’m not convinced that pain ends.

I often write about ‘one step at a time‘, and that’s what I think hope is.  Taking that next step.  Putting my foot out in front of me and moving forward.

 Just keep on going

And you know?  That’s enough for me.   If I can just keep putting one foot in front of the other, then that’s enough for now.  I’ll worry about conquering mountains when I’m not feeling so depressed.

“When you’re lost in those woods, it sometimes takes you a while to realize that you are lost. For the longest time, you can convince yourself that you’ve just wandered off the path, that you’ll find your way back to the trailhead any moment now. Then night falls again and again, and you still have no idea where you are, and it’s time to admit that you have bewildered yourself so far off the path that you don’t even know from which direction the sun rises anymore.” 

― Elizabeth Gilbert

Finding My Voice

If there is one thing that mental illness, and probably in particular depression, did to me was silence me.  My voice, my opinions, ideals I felt passionately about, got sucked out of me as the depression grew deeper and more entrenched.  I didn’t care anymore.  Well, at least I didn’t have the energy to care any more.  I just let things pass.  My own misery was all I could focus on. Actually to be totally honest it was simply a matter of would I live another day?

Before I was ever diagnosed with a mental illness, and we’re talking nearly 20 years ago, I was an opinionated person, but only to a degree.  Now I can look back and see that I had opinions but they were shaped by what, and who, was around me. I held little value in what I really thought, assuming that difference from others meant I was wrong.  And I constantly thought I was either wrong or just dumb.

Often that difference from others meant that I remained silent.  All that really did was contribute further to the growing depression.  It’s a vicious circle.  The silence contributes to the mental illness, and the mental illness contributes to more silence.

I’m sure there are some people close to me who always thought I was too opinionated.  “A dog with a bone.”  But gosh, what’s wrong with a dog with a bone?  They’re happy.  Isn’t that a good thing?  Seemingly not.  Becoming less depressed is not always seen as a welcome thing.

It seemed at times that finding my voice again was troublesome, and it actually did cost me dearly.  When I was at my sickest I didn’t voice opinions, I didn’t disagree (apart from about putting food in my mouth!), I just let life happen around me.

Sometimes I look back at world events across those years and I can’t remember a scrap of it.  These things just happened, and I wasn’t well enough to notice, let alone to form opinions and to have my voice.  Actually the only event I could recall was the 9/11 World Trade Centre disaster.  I was aware of it happening because in a brief psychotic state I believed I had caused it.

Now I’m starting to find my voice, and it feels good.  I’m learning what I believe in, and what I am passionate about.  I find those things are quite different from what I believed previously, but that doesn’t surprise me.  You don’t go through prolonged suffering without being changed along the way.

My voice is not always popular, but that’s ok, because I am learning that my worth as a person is not based on agreeing with those around me.  That is a huge step for me.

I’m learning that a ‘dog with a bone‘ is a good thing because, while some people will hate it (and they do!), ‘dogs‘ with ‘bones‘ achieve change in the world.  Even me, with my one small voice can make change.  Just as each one of us can.

The ‘bone‘ I have been chewing today has been on the issue of disaster tourism in my city, Christchurch, NZ.  Before 2010 I doubt I knew the term disaster tourism even existed.  Now I know it only too well.  Wikipedia (and I know that’s not reliable but it will do for now) defines disaster tourism as:

 “the act of traveling to a disaster area as a matter of curiosity. The behavior can be a nuisance if it hinders rescue, relief,
and recovery operations”

In my opinion it is taking people who have become victims and are possibly traumatised, and turning them into a sightseeing venture. It screams ‘wrong’ to me, but I know that there are many people who think it is a good thing, and many people who make a good livelihood from such ventures and will convince innocent victims that it is in their interests.

It’s happening everywhere around the world, anywhere there has been some type of disaster.  Think of the last natural disaster you saw on the news, and the disaster tourism will be a big business there for years to come.

It’s a big issue in Christchurch, and is becoming bigger now that tourism operators want to take tourists further into what they call the disaster zones.  I’m just not convinced that this is a good thing for the people who have lived through the disaster, and are now rebuilding their lives.  Personally I need normalit, if that is possible.  I don’t need buses full of tourists coming down my street.

You can pick the ‘rubberneckers’.  They drive slow, and their eyes are not on the road.  I live on the edge of the area tourist operators want access to, and frankly I don’t like being stared at.  Letting tourists through doesn’t help me recover in any way. I get told that letting tourists see the ruins helps them to understand my suffering.  Really?  And how does their ‘understanding’ help me recover?  I know it puts money in the pockets of the tourism operators, but I’m not at all convinced.

But I’ll stop chewing that ‘bone’, because that’s not really the point.  What is the point is that having an opinion on disaster tourism (or anything else) is something to celebrate.  It is a good thing to be finding my voice again, and to know (or to be learning) what matters to me.  It feels great.

Not everyone agrees with that though.  Some people in my life wish I would shut up.  Some people might wish that I dropped the ‘bone‘, but personally I think that it is a good thing when people become passionate.  And it is a great thing when people can recover from mental illness, and find their voice.

I’m sorry to those in my life who would prefer me to go back to silence, but I’m only sorry because you miss out on knowing who I really am.

“How would your life be different if…You stopped allowing other people to dilute or poison your day with their words or opinions? Let today be the day…You stand strong in the truth of your beauty and journey through your day without attachment to the validation of others” 

― Steve Maraboli, Life, the Truth, and Being Free

A Bit Mental (Lilo The Waikato)

Lilo The Waikato

Image credit: Lilo The Waikato (used with permission)

Yesterday I watched a great piece of television, and what’s more it was on mainstream television channel TV3.  The scheduling wasn’t great but at least it got there.  The programme was all about raising awareness of depression, and that has to be a great thing.  If you want to watch it, here’s the link.  It will be there for a couple of weeks.

Inside New Zealand – A Bit Mental – Special – On Demand – TV3.

Location map of Waikato River, North Island, N...

Location map of Waikato River, North Island, New Zealand (Photo credit: Wikipedia)

A Bit Mental is a documentary about Jimi Hunt, a New Zealand man who has struggled with depression for two years.  As part of his recovery he created a challenge for himself of travelling down New Zealand’s Waikato River… on a $8 lilo air mattress (in other words cheap!)… and in doing so raising awareness for depression.  If you’re not sure what a lilo is, that’s the yellow thing Jimi is floating on in the picture above.  Just plastic and air.  He went through 11 in the whole trip as he succumbed to punctures.

He described it as:

“a ridiculous journey to raise awareness for a super serious problem.”

For those in other parts of the world, the Waikato River is our longest river at 425 kilometres.  There is some gorgeous scenery but some very serious white water known as the Huka Falls, as well as a few hydro power stations to get through.  In other words it’s a crazy journey that no one had done before on a flimsy plastic lilo, but Jimi did it.  The link above will give you the full story.

Jimi was told by his doctor that his depression had a chemical basis, rather than psychological and so his recovery was about correcting that chemical balance.  I admit I was slightly concerned when he commented that he wasn’t bad enough to need medication.  It was one of those things that just didn’t sit right with me.  Maybe because I was ‘bad enough’ to need medication.  Was he saying that because I needed depression I was much worse?  To me, I was just different.  I decided to drop the issue in my head, maybe I was seeing things that weren’t there (it happens often!).

Back to Jimi’s recovery, he was challenged by his doctor to get some exercise, get fit and set some goals.  And so Lilo The Waikato was born with his aim to raise awareness for depression and funds for Lifeline (a 24 hour telephone counselling line).

The Huka Falls, Waikato, New Zealand

The Huka Falls, Waikato, New Zealand (Photo credit: Wikipedia)

The thing I really liked was that along the journey Jimi set himself up so that he had to ask for help, something which he recognised as key to his recovery, and something that he took a while to learn.  He had to ask for accommodation (the journey took about two weeks) and meals.  He had to ask for the occasional tow.

It was a practical reminder of how asking for help is so important when struggling with depression, and mental illness.  I guess it rang home to me because it is something that I recognise I have struggled with at different parts of my mental illness journey.  Some parts would have been so much easier, and less painful had I asked for help at the time.  Jimi recognised it as something that would have made a big difference to his recovery too.

What Jimi did was pretty amazing.  You wouldn’t get too many people who would take on such a challenge, let alone while raising awareness for mental illness.  And what’s more, there were many people (including more than 20,000 Facebook followers who encouraged, supported and followed his journey).

All this got me wondering, as I watched the programme, what awareness and support could be raised for other mental illnesses?  There is no official hierarchy of mental illnesses, but I’m inclined to think that depression is a little more ‘acceptable’ to the general public than other mental illnesses.  So what if there was a person with say, Schizophrenia or Borderline Personality Disorder (BPD) who could raise this kind of acceptance?  Would it work?  Would the general public just say “s/he’s crazy”?

No doubt plenty of people said that Jimi was crazy.  It’s certainly not something that I would choose to do.  But people got behind him and supported his cause.  It would be great to see more people backing a greater awareness of all mental illness.

Currently there is a woman, Annie Chapman, who is walking the length of the North Island – using the Te Araroa Trail (1600 kilometres), here in New Zealand to raise awareness of the need for better treatment options for those with mental illnesses.  It’s a completely different undertaking being a protest walk (known here as a hikoi) with community meetings along the way.  What interests me is that her Facebook followers amount to under 200.

Why is there such a difference in support?  I guess there are a lot of reasons, but I wonder whether the need to ask for help when you’re battling depression is more acceptable somehow to the public than the nitty-gritty of treatment options for all mental illness.  I don’t know, and perhaps I’m not being fair, but it does raise the question of what is acceptable to the public and what is too much?

What I do know is that what these two people, and probably others I haven’t heard about, are doing is fantastic.  Whatever is done to make mental illness easier to talk about, and more widely acceptable has to be great.

“One must still have chaos in oneself to be able to give birth to a dancing star.” 

―    Friedrich Nietzsche

Is There a Sign On My Back?

I am seriously wondering if someone (who doesn’t like me) has, unknown to me, stuck a sign on my back saying “pick on me” this week.  Mysteriously, each time I change my clothes, I still seem to have the sign plastered there for all to see.  Having spent time with my brother this morning, I sent him a text a few hours ago to ask whether he noticed the sign.  So far he hasn’t responded.  I’m not exactly sure what conclusion I should draw from that.

Some weeks seem just determined to make things hard, and this week has  achieved that for me in so many ways.  I thought bad things were meant to happen in three’s, but so far I’ve counted six.  Here’s a run down (and I promise it’s the short version):

1.  My trial to come off lithium failed (as I told you in Ten Years Later, And I Have My Answer).  You’ll be pleased to know that I am back on the original dose.  Just waiting for it to kick in.

Actually the day after my psychiatrist told me to start the lithium again immediately, my GP (General Practitioner who handles day to day medical issues) objected, and wanted me to wait another week “just to be sure”.  Basically I quoted my last post at him and explained why waiting wouldn’t be a good idea…  and then I ignored him.  Meanwhile as I wait for the lithium to kick back in, I have all the usual symptoms of depression.  It’s a few years since I was last depressed.  I hate that it is back.

2.  The implication of my inability to get off lithium now means that I can not get medication to treat my fibromyalgia (the whole point in trying to come off).

3.  A further implication of my inability to get off lithium is that I can not get adequate pain medication for fibro symptoms that can not be treated.  All I can use is paracetemol (an over-the counter analgesic) and a very limited amount of codeine.  Neither of these do anything for the worst problem, which is nerve pain.

4.  An implication of my inability to get adequate pain medication takes a blow at my intention to use  extra medication so that I could deal with the extra pain caused when I try to giving up smoking again.  (See  Unseen).  Actually my GP denied any knowledge of this issue, and had no willingness to hear me on the issue of pain caused my nicotine withdrawal.  He basically told me to “toughen up and try again“.  I can’t say I was too impressed by his lack of compassion, empathy and helpfulness.

5.  Totally unrelated to  numbers one to four, I saw my endocrinologist yesterday for a routine check-up for my auto-immune condition Graves’ Disease.  This has been in remission for about 10 months now, and I half hoped that he would discharge me from his care and send me on my way (on the understanding that the disease could come out of remission at any time.).  What he told me instead is that it looks very likely that the disease is coming out of remission.  It’s a wait and see game now.  More blood tests in a couple of months to draw a definite conclusion, and a reminder of what to do if acute symptoms return in the meantime..

Grave’s affects a number of areas in the body, but the biggest impact is on the thyroid gland (producing a pretty serious condition  called thyrotoxicosis), the eyes ( I won’t tell you what it does to the eyes simply because the thought of it turns my stomach), and speeding up the heart rate beyond healthy.  It’s not a pleasant condition to have, nor is the treatment particularly appealing for this ‘nuclear-free’ kiwi.  More about that if, and when it happens.

6.  Just when I get to Friday and really think I’ve had enough… today the Pain Management Clinic, a public health service designed to help me find alternatives for pain management has refused to see me.  Apparently I am simply not a priority, to the extent that they haven’t even put me on a waiting list.  Being unable to get off lithium, this referral was essential, but it seems it’s not to be.

So what do you think?  Is it reasonable to conclude that sign is on my back?  Are my stars just not aligned this week?  Is it one of those weeks when I should never have got out of bed? Hmm.

Image credit: farm4.flickr.com/3140/3103360425

What do I choose?

Despair or Hope?

I’ve been struggling to do much reading this week, finding it too difficult to concentrate even on a short blog post.  I manage the first couple of paragraphs and then drift off.  It’s a symptom of depression.  One thing that I did manage to read, made me stop and think.  Hope Is A Choice.  Actually, if you’ve got the time, and the concentration, there is a lot written on this premise.  I’m inclined to think it’s true, that for me hope is a choice.

Hope is an easy word to say, and I know I use it a lot in my writing, but actually it’s pretty hard to practise, especially when times are tough, and there is a ‘pick on me’ badge on my back.  Actually there had been a fair amount of despair going on here in the last few days.  All these health (including my mental health) issues I’m dealing with are chronic, with little to no hope for complete recovery.

When I said in my last post that I had proven to myself that lithium kept me out of prison and out of a grave, I wasn’t kidding.  That’s the reality, especially if I choose to go down the road of despair.

One of the extra difficulties I’ve faced this week is what Borderline Personality Disorder (BPD) adds to this scenario.   BPD enables me to split too easily between my emotions.  What that means is that one minute I can be happy and full of hope, sure that all this will work out.  But shortly after I can be completely depressed, despairing, withdrawn and without hope.

Actually it is this reason that has stopped me from posting this week.  If I post when I’m feeling good, you will get one impression which might be quite different from what reality is.  That has consequences for you, as the reader, trying to understand but it also has a habit of kicking back at me.  It’s hard to explain but I’m sure fellow BPD sufferers know the issue well.

What I really need to say is that this week has been really hard, and it’s not over yet.  I have some practical issues that I am going to have to try to resolve, but as yet I don’t know how I will do that, and frankly it doesn’t seem like I have a lot of support from the medical fraternity.

Sometimes this week, I have seen very little hope.  Other times,  I have had to go back to borrowing hope (see Borrowed Hope).  I felt disappointed to have to do that, but it was necessary because I had lost sight of my own hope.

As for now?  Deep inside I have a sense that this will work out, that my health can be revived and that hope does exist for me.  Although I’m not sure how it will look.  Sometimes I have to look a long way to find that sense of hope and in the meantime I guess I’m suspending judgement.  I’m not choosing despair.  No matter how bad I feel, I refuse to go back down that road again.  I can’t afford to do that to myself.

“to love life, to love it even
when you have no stomach for it
and everything you’ve held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.” 

―    Ellen Bass

Ten Years Later, And I Have My Answer

This week was one of those rare weeks where I had planned (if not actually written) what I was going to blog about, and when.  Today (being 31 October here in NZ) I was going to tell you all about Halloween kiwi style.  Kiwi readers will about now be thinking to themselves “this will be Cate’s shortest post ever“.

They would probably be right and you’re just going to have to wait for that mind-blowing information of what happens at Halloween here.  Meanwhile I want to wish all those that are celebrating the occasion a whole heap of fun.  Especially my friend Eileen, who I know lives for this time of year. :-)

Over the past months, I have mentioned at times that I was planning to come off a medication which I have been on for ten years, so that I would have some possibility of getting medication that would treat my fibromyalgia.  I had some anxiety about doing this because I’ve never been sure exactly how much that medication was doing for me (and an anti-depressant I was put on at the same time).  It was a chicken and egg thing, of not knowing whether the medication had made the difference, or whether it was simply the therapy.  Or maybe a combination of both.

I was a little apprehensive of what the result would be when the lithium was removed so consulted my psychiatrist a few months back.  He wholeheartedly agreed that I should try to wean off it over a number of months.  I did as he instructed (to the letter) and took my final dose on Saturday.  At that point, I had planned to post here about finally being free of that drug (which has quite a reputation), but I was so unwell with fibromyalgia that to post anything would have been completely beyond me.

It’s now Wednesday, and after a month of the lowest lithium dose I could take, followed by three days with no lithium, I know this much with certainty:

Lithium does this for me:

it keeps me alive and

out of prison!

That is no exaggeration, sadly.  For 10 years no one knew whether these medications were actually doing anything, but everyone was too scared to ‘fix what aint broke.’  Fibro made it necessary to find out what happened if we took the lithium away…    and now I know.  Thankfully, I had enough awareness of myself and foresight, to get some medical help fast.

Watching a car crash is never enjoyable, and can be of only limited use to those who must watch, and so I’m not going to go into the details of what happened, except to say that when I realised that I was at a point of considering either murder or suicide, I knew it was time to get help.  I was tearful, not sleeping, and verging on paranoid and delusional.

Thankfully I had the foresight to email my psychiatrist, to see if he thought there was any connection between my mood dropping through the floor boards and the final stopping lithium.  By the time he eventually got back to me (last night) I had taken some other, extra medication to calm me down, and I was feeling a little more rational and calm, although very doped.  He agreed that it was almost certainly the reaction to no lithium and urged me to start it again straight away, because it was clear that it had helped.  He also added that I would now need to stay on it for life.

Relief came first in my mind, because I knew I couldn’t possible live the way I had the last three days.  The disappointment that I wouldn’t be able to do what all this was about, get medication for fibro.  But mostly relief, because I know that in those three days I was heading towards prison and/or suicide, not to mention pushing away the man I love.  I don’t want any of those things to happen.

I need to be clear about something that is commonly misunderstood.  Yes, I take lithium (I started again last night) but I don’t have bipolar.  Most people, including doctors who should know better, assume I do have bipolar.  But any psychiatrist worth anything will tell you that in rare occasions lithium is also used to medicate severe, chronic depression.  That is why I was put on it in the first place back in 2002, when they had run  out of all other options.  Now I expect to stay on it for life.

Lithium has a pretty bad reputation (for a variety of reasons), and I know that it has already caused a serious auto-immune disease (Graves’ Disease) which I now have for life, regardless of whether or not I continue on lithium.  The auto-immune disease contributed ( along with extreme trauma) to the fibromyalgia, so basically I can put my physical health problems down to being caused largely by lithium use.  Still, lithium could cause more damage to my kidney function.  All that suggests why would I possibly want to be on this drug still?

Because it keeps me out of prison and it keeps me out of a grave.  That seems like enough for me.  For now, I have to build up my lithium levels back to a therapeutic dose, and until then I am lying low.  I need a bit of time out.

That said, my mind continues to click over blogging ideas so don’t be surprised to see more from me soon.  And I will definitely be posting on Sunday (4 November) for the BlogBlast4Peace event.  I wouldn’t miss that for anything, and if you’re not yet involved, it’s not too late (even if you are not a blogger).  Check out this to get details.

One final word

Just because I had an extreme reaction to coming off this medication, doesn’t mean everyone will.  And just because I have proven that this medication actually helps me significantly, doesn’t mean it will for everyone.  In my opinion, medication is a uniquely personal thing because each person will  react differently.  So what ever you do, do it in consultation with your doctor.  Social media (including this blog) is not the place to get reliable information on a medication’s suitability or otherwise for you.  What I have shared  is simply my experience, and nothing else.

“Listen to the people who love you.  Believe that they are worth living for even when you don’t believe it.  Seek out the memories depression takes away and project them into the future. Be brave; be strong; take your pills…  Reason with yourself when you have lost your reason.” 

―    Andrew Solomon,    The Noonday Demon: An Atlas of Depression

“I now know for certain that my mind and emotions, my fix on the real and my family’s well-being, depend on just a few grams of salt.  But treatment’s the easy part.  Without honesty, without a true family reckoning, that salt’s next to worthless.” 

―    David Lovelace,    Scattershot: My Bipolar Family