What I Did And Didn’t Want

Do I exaggerate? That’s a rhetorical question for most of you.  My family (who might or might not be reading) are welcome to try to answer that question but you must be kind.  Very kind.  Your purpose in attempting to answer must be purely to educate me and not to, in any way, attack me or get back at me for some random, unrelated misdemeanor.  The question is really one for myself if I am completely truthful.  It won’t be the first time I try to answer, and it certainly won’t be the last.

I just have got the impression over the years that those people close to me have the impression that yes, I do exaggerate.  Personally I don’t think I do.  I think that I feel things strongly and that I notice a lot of what is happening around me.  Perhaps more than others.  But when I express it, it’s not exaggeration but simply what I am seeing and/or experiencing.

This past week I have been through a lot, and for some of the people around me, they have been through even more.  It has been really hard.  Emotional, soul-searching and stressful.  And no, that’s not an exaggeration.  It has been hard on us, and it’s not over yet.  Actually in some ways I suspect it is only just beginning.  For some of us, it has been something that we always knew might happen, going even as far back as childhood.

It comes down to what I did, and didn’t want.  Clear as mud, I know!

It’s always important to me that just because I am a blogger, that doesn’t mean those around me must have their lives printed here too.  As such, there are no details.  If you’ve been reading my blog for a while, you will know that is how I sometimes write in order to protect the privacy of those people.

For what seems like a long time, I have been very concerned about something that others around me seemed to not see.  Of course, we see not only what is apparent but also what we are open and willing to see.  In addition, we can only see what is there.  If it comes and goes, if at times it gets hidden, it is pretty hard for others to see.

No one has said it out loud but I got the impression that they thought I was exaggerating.  Maybe they thought that was because of my mental illness.  I don’t know.  No one has ever said.  Maybe they thought I was simply too emotional and reacting too strongly to what I could see.  Again, I don’t know.  No one has ever said.

This week finally, some other people told me that they could see what I could see.  Wow!  That was such a relief (in some ways!).  As I watched them, watch what was going on, I was quietly terrified that they would say they couldn’t see it.  They didn’t.  They could see it clear as day.

It’s hard because I wanted them to see, but at the same time I wanted to be wrong.  I know that will make little sense, but I guess it’s just human nature.  I wanted to be right, but I also didn’t want to be right.

I was right, and actually those other people assessing what was happening, were even more concerned than I was.  I didn’t know how to feel then.  I wasn’t quite ready for the depth of their concern, even though I was glad they could see and were concerned.

What had been sometimes unspoken, and sometimes barely whispered, had now come amongst us.  I had really hoped it never would.  Others around me had hoped it never would.  Even those who had passed on hoped it never would.  But now, here it was, and there was no denying it… for any of us.  I got what I wanted.  I wanted others to see.  But now I really didn’t want what I had got.

I can’t wind back the clock, and that is painful.  I want the clock set on today when everyone concerned can see what I see, but I so don’t want it.  It’s totally thrown me off-balance, even though I wanted this, I also knew that what I wanted was the last thing I would ever want.

If you’re confused, then I apologise, but just imagine how I might be feeling with all this in my head.

I think I need a rest.

“Because that’s life, you know? Good and bad. You can’t have one without the other. The bad brings out the good in us, and the good can be corrupted by the bad. It’s always a struggle—to fight for the good, so it tips the scale. – Jet Phoenix”

― Rachael Wade, Repossession

 

Why Can’t I Have Both?

It’s been a while… I know.

It’s just on two months since I disappeared off the blogging trail.  No explanation, just not there.  My apologies for the ‘no explanation’, but it just had to be.  The short story is that I came to a point where it was necessary for me to question whether my participation in the blogosphere was helping or hurting me.  Was I getting out of blogging what was good for me, or was it actually causing pain?  Ideally it would be great to say my participation couldn’t possibly be hurting me, but that’s simply not true.  I have yet to resolve the issue in my mind, and so in the meantime I will only be posting sporadically, when something is weighing particularly heavy on my mind.

I admit too, that pulling back in my participation has also included cutting back on how much I have been reading others’ posts.  That has simply been too hard, particularly with writing comments.  But I do still have a desire to support the blogs I follow and I will be back eventually.

Meanwhile, a dilemma falls before me.  It’s not one that is new to me, but perhaps this time it is a bigger issue because of the consequences involved.  Two options are before me and I wish so much that I could have both.  Unfortunately it doesn’t always work that way and particularly in the issue of mental health versus physical health.  So often it seems the option is one or the other.  Why can’t I have both?

This past week I finally got in to see a Pain Specialist to consider how best to treat my Fibromyalgia.  I’ve been waiting for this for several years now, so it was so great to finally be there.  Regular readers will be pleased to know that I also finally changed my doctor (General Practitioner) a few weeks back.  That, and seeing the Pain Specialist has finally given me some hope that treatment is possible.  Unfortunately though, it looks like it might come with a cost.

The Pain Specialist has recommended a medication for me to try, which if it works for me, could turn my life around in terms of the pain and fatigue that I have on a daily basis. What the medication recommended isn’t important to this post as the last thing I want to do is get into a conversation of ‘what works for who‘.  I don’t see the point in that simply because we all respond to medication differently.

It was not possible for me to start on the medication straight away as it was necessary to get funding approved from the New Zealand health system.  The hope was that by the end of next week I would be able to start.  It would take some weeks to get to optimum dose and so to work out if it was effective.

It was all sounding great, until I came home and did my own research on the drug.  I am particularly careful to read up on medication I intend to start on because of firstly adverse interactions with other medication but also because of those lovely side effects we all dread.

The interactions were listed as moderate, but I had discussed it with the specialist and we agreed that with careful monitoring it would be ok.  But the side effects were different.  All the usuals, including my dreaded weight gain… but here’s the one that stopped me in my tracks:

“you should know that your mental health may change in unexpected ways and you may become suicidal (thinking about harming or killing yourself or
planning or trying to do so)”

Added to that was:

“….panic attacks; agitation or restlessness; new or worsening irritability, anxiety, or depression; acting on dangerous impulses; difficulty falling or staying asleep; aggressive, angry, or violent behavior; mania (frenzied, abnormally excited mood); talking or thinking about wanting to hurt yourself or end your life; withdrawing from friends and family; preoccupation with death and dying; giving away prized possessions; or any other unusual changes in behavior or mood”

It speaks for itself.

I know that this is not the first, or only, medication that has these possible side effects.  There is the well-known anti-smoking medication which I have always said I would never risk taking because of the possibility of suicidal thoughts.  Then there are of course, many anti-depressants and other medications for mental illnesses which have similar risk.

I know that.   I don’t like it.  I think it is crazy, but I know that’s the pharmaceutical world we live in.  What bothers me is that I am stuck between a rock and a hard place.  Yes, these are possible side effects and might not happen but I have to be prepared for their possibility.

For just a few hours, from leaving the Pain Specialist to getting home and doing my own research, I had some hope for the possible end of my pain (or at least significant reduction).  I started to think about being able to get back to work, and was even mentally rewriting my out-of-date CV.

This drug offered me hope… but at the expense of my mental health.

Do I restore my physical health while risking my mental stability?  Or do I say no to the drug, continue to be limited in my physical health, but be sure my mental health is maintained (at whatever level it is currently at).

This is a really hard one.  Yesterday I was by chance reading Lulu’s post on her blog Sunny with a Chance of Armageddon on a similar issue she was facing. Which do we preserve?  Mental health or Physical Health?  It seems that this is a common dilemma we face when we have mental illness, and I’m coming to the conclusion that we each have to make our own decision.  For each, it will be different.

Personally, while I haven’t reached a decision on my dilemma, my inclination right now is to preserve my mental health (which would practically mean avoiding this particular medication).  While my mental health is relatively stable now days, I continue to struggle.  I have been at the bottom of the pit in terms of mental illness. Years of hospitalisation, heavy medication, ECT and the many harmful things I did to myself including suicide attempts.  I had suicidal thinking for a very long time.  I have no desire to go back there.  I suspect I would find it difficult to crawl out of the pit again.

Do I try for stable physical health?  Or stable mental health?  I hate the way my life is dominated with pain right now, but perhaps surprisingly, I think I would rather have that physical pain than to go back through the mental pain I lived with, the worst of which was through the late 1990’s.

On Tuesday I will see my (new) doctor and talk to him.  Maybe I’ll find the cash and go see my rather expensive psychiatrist too.  The problem for me is that while my medical notes are full of mental illness, none of the doctors involved knew me at the worst of my mental struggles.  They haven’t seen that Cate.  They don’t know how bad it can get for me.  I do.

There are no guarantees in this game.  I could have no side effects and get good pain results too.  It just might not happen… but I’m not a lottery player and even so, I just don’t like my odds.

But forget about my dilemma for a moment…   what would you do?  Maybe you’ve already faced this issue.  How did you deal with it?

“No amount of love can cure madness or unblacken one’s dark moods. Love can help, it can make the pain more tolerable, but, always, one is beholden to medication that may or may not always work and may or may not be bearable”

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

Lessons I Must Have Missed

Do you ever get the feeling that perhaps you missed some of life’s essential lessons?  Somehow you just weren’t there for that lesson, or maybe you had something distracting you, so you just weren’t paying attention?  I’m not talking about school lessons but rather lessons in the things we needed to know to be able to function adequately as a human being.  Lessons in things that would substantially help us get through life.

I’m coming to the conclusion that I very definitely missed some lessons which could have made life a whole heap easier and maybe even less traumatic for both myself and those close to me.  The missing lessons for me centre around emotions.  I seriously don’t think I ever learnt anything useful until I was very sick and depending on a very good therapist to get me through.  It’s more than a little sad really, and it goes along way to perhaps explaining where my relationship with Borderline Personality Disorder (BPD) came from.

BPD is a hard disorder to get your head around simply because there are so many variations. We are certainly not all the same, as many websites suggest.   There are usually many things going wrong to warrant a diagnosis, but in my mind it all centres around emotions and the ability to express and manage those emotions.

So here are a few of the lessons that I may have missed, and which may have contributed to the existence of BPD in my life.  They may seem a little disjointed, but bear with me.  There is very definitely a pattern.

Lesson Missed #1
It’s okay to feel hurt

Remember that awful little rhyme that has wrecked havoc on the minds of so many girls with curly hair?

There was a little girl
Who had a little curl
Right in the middle of her forehead
When she was good, she was very, very good.
But when she was bad she was horrid.

Who quotes that at their daughters?  Who tells their little daughter that they are horrid?  It’s horrid that anyone should even write such a rhyme let alone quote it at small girls.  And yes, it was quoted at me.  Apparently it was written for me.  My guess is that I was around four or five.

It’s difficult to remember an emotion back that long ago but my guess is that there was no expressed emotion.  I just knew that I was bad. It was a fact, indisputable by the presence of that word ‘horrid’ being applied to me by people I loved and trusted.  Did they think it was funny?  There is nothing funny in name-calling.

If I was that five-year old again, I hope that I would feel hurt, even betrayed.  It seems only appropriate, but then appropriate emotions were something I didn’t know about for a long way to come.

Lesson Missed #2
It’s okay to feel angry

By the time I got to around 15 I was struggling for a number of reasons. Not that anyone outside my immediate family would have known.  To the outside world I was a good teen who seemed to be doing all the right things.  I turned up at school (and anywhere else I was supposed to be), I passed my grades, I had friends, there was nothing I was doing wrong.  But my family knew differently.

I was a bomb waiting to explode but I had little idea of what was going on.  I guess now that I was mostly angry and frustrated but I had no idea how to express that.  I didn’t even recognise what that meant.  I would simply explode and physically lash out.  That was the only means I knew of getting what was inside out.  It would literally be an exploding bomb with no words.  No words because I didn’t have a clue how to attach words to what I was feeling.

Eventually I didn’t trust myself.  I didn’t understand what was happening, so why would I?  Being unable to temper that lashing out I made some big decisions at that point which have significantly impacted the rest of my life.  I was simply doing the only thing I knew how.  I was holding myself in.  Protecting myself, and more importantly, others.  Too scared to express anything.   Only my family know who bore the brunt of that, aside from me.

Lesson Missed #3
Feelings are NOT thoughts

Fast forward to 30.  I’m in residential treatment for a variety of mental illnesses (although not BPD).  Sitting in my therapist’s office, he has asked me how I felt about something that had happened in my life.  I tell him what I think about it.  He asks me again, and this time points out to me that how I feel about something is quite different to what I am thinking about it.

Bingo!  It might seem obvious to you, but at 30 I had no idea.  I was so shut off to my feelings that I didn’t even know they existed.  I literally thought ‘feelings‘ was another word for ‘thoughts‘.  I am an intelligent person.  But I simply hadn’t had that lesson.

That was a very big day of learning.  Life didn’t get easier because now that I was feeling, I felt every one of those emotions eventually.  It hurt like hell, but at least I was on the right road.  There was some hope.

There were more lessons to come.  I was completely closed off to experiencing what I felt.  It seems I had been right from childhood.  Why?

There are lots of possible answers to that ‘why?‘  I’m not going to get into blaming anyone, including myself.  Right now that just wouldn’t be of any help to me or anyone else.  It just was.  What I can do with having worked through this is to understand better where the BPD diagnosis eventually came from, and continue to work from there toward recovery of some sort.  I think too, that some of the other attributes of BPD which I also have perhaps came about as a means to coping.  If I went into that now, this post would become book length.  But maybe it’s time to explore those in future posts.

“Your perspective on life comes from the cage
you were held captive in.”

— Shannon L. Alder

 

Psychiatric Medication Saved My Life

Image credit: CDC via Wikimedia Commons

Image credit: CDC via Wikimedia Commons

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Facing The Mundane Realities Of Chronic Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

― Byron Katie

Love Doesn’t Cure Mental Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I knew that I was unlovable

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

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

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

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

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

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

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

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

― Elizabeth Wurtzel

 

“That’s Nice, Dear”

Excuse me for a moment while I rant.

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

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

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

End of rant.

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

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

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

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

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

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

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

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

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

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

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

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

………

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

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

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

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

I am thawing.” 

― Laurie Halse AndersonWintergirls

Claiming My Voice Back

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

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

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

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

I’ve been kissed by a…

Rose

Monster

Person With A Mental Illness

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

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

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

Here’s the story,

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

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

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

We lived happily ever after…

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

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

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

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

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

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

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

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

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

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

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

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

― Jennifer Brown, Hate List

Cure Me, I’m Depressed

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

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

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

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

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

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

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

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

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

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

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

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

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

Trauma Takes Me Back Again

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

For  me, there are such triggers as:

A smile from the ‘wrong” shape of lips.

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

A television/movie segment that springs from nowhere.

Watching something happen in the street.

A physical resemblance

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

A touch.

A lie.

And many more, usually random events

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

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

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

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

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

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

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

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

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

— Jim Grimsley (Winter Birds: A Novel)