Lucy In The Sound Dome With Diamonds

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

― A.B. Shepherd, The Beacon

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Involuntary

‘Involuntary’ is a word many of us feel uncomfortable using in terms of mental illness.  Personally I have always hated the fact that sometimes an involuntary admission to hospital is exactly what is needed.  I’d like to think that we are always in control of ourselves enough to make the appropriate decisions on care for ourselves.  Unfortunately it’s not the case, and it’s something that has come to my mind this week.

I think I had about four times when the decision to hospitalise me was taken out of my hands.  That’s out of many more ‘voluntary‘ admissions – more than I can count over nearly 10 years.  A couple of times my (now ex) husband made the decision for me, the others saw the decisions made my the hospital staff because there was simply no one around to make that choice for me.

Of course there was no ‘choice‘ for me.  I kicked and I screamed.  Literally.  I was a totally different person than the person I am today, simply because I was so unwell.  I hated my husband, although usually I loved him.  How could he do this to me?  He knew hospitalisation was the last thing I wanted, but he did it anyway.  Ouch!  That really stung!

When it wasn’t D making that choice, it was people who didn’t even know me.  That stung too, and it felt like the whole world was against me and there was no one around who loved me enough to be able to save me from what I dreaded.  Of course, no one was going to ‘save’ me, in the way I meant.

I had all the psychiatric treatment you could imagine across the years, but each time I knew that it boiled down to being my choice.  The ironic thing though, is that even when you are voluntary patient, you know how easily that can change. Strangely you only know that once you are inside the walls of the hospital.   ‘Involuntary’ can get slapped on you so fast that you wonder what ‘voluntary’ really meant anyway.

I started to realise this week just how grateful I now am, for those decisions being taken out of my hands.  I read (as you possibly have too) of a woman, who struggling with mental illness and the ongoing effects of prolonged domestic abuse  committed a crime.  She’s now facing charges for the attempted murder of her children.  Apparently family members tried to have her hospitalised the day before but she wouldn’t accept the hospitalisation.  Obviously I don’t know all the details, but I wish for her that decision was taken out of her hands.  It sounds like she was too unwell to be having to make that choice, and of course the choices she made in the next 24 hours were catastrophic.  I dearly hope that somehow she gets the treatment she needs anyway, instead of the current round of judgement and condemnation.

When I was admitted on an involuntary basis, my life was at risk and I’m ashamed to admit that one time, it was a life other than my own that was at risk.  Me being ‘locked up’ was to save that life.

To be ‘locked up’ at the discretion of a judge was the last thing I wanted.  But had that not happened, I probably wouldn’t be alive today.  And other possible consequences mount up in my mind beyond being able to put into words, nor is it something I want to talk about any more openly in such a public forum.

I am glad my husband signed my rights away those times.  I have no idea how difficult that must have been for him, simply because we don’t have a relationship now where we could talk about it.  It must have broken his heart to see his wife so unwell that he needed to take this step.

To commit someone involuntarily must be easier when the family don’t have to be involved, as was the case for the other two times.  I have never been in a position where I had to direct someone to take a loved one’s rights away but finally, all these years later… I can see that they did the right thing.

So to D, and to those hospital staff, thank you.  I hated you at the time, but you saved my life. For that I will always be grateful.

“The horror of the Pit lay in the emergence from it, with the return of her will, her caring, and her feeling of the need for meaning before the return of the meaning itself”.” 

— Joanne Greenberg

Seeking… Opinions

Caution:  This post contains discussion of suicide attempts and their effect on those close to the person who attempts.  However the post contains no details of specific suicide attempts and no images.  Please know that I am in no way offended if you choose not to read this post.

Sometimes it’s really necessary to gather the opinions of others  in order to find a way forward.  That’s where I’m at right now.

Recently someone in my life expected me to visit, and when I didn’t, she got worried.  I had said a visit would be unlikely because I was sick (fibromyalgia) but that was in some way misheard.  Next thing I get a phone call asking me whether I was killing myself.  She jumped to a conclusion that because I hadn’t visited, then I must be in the process of committing suicide.

At the time, my mental health was pretty good.  I certainly hadn’t been entertaining the thought of suicide or any sort of harm to myself.  It was my physical health that was the issue but I simply had to ride that out.  I had given the person no reason to think I was in danger, and she later agreed that there was no reason for her to be so concerned.  But I recognise that something must have triggered her worry.

I was pretty surprised by the concern she expressed.  I thought, “where did that come from?”  I knew that somehow I had to get my head around it and understand where she was coming from in order to be able to address her concern.

Jump back 16 years and I was clearly labelled by my psychiatrist and mental health workers as having “chronic suicidal ideation“.  That is, suicide was something I was pretty much constantly thinking about and planning.  I had a number of suicide attempts across a period of maybe four years, including two very large and ‘serious’ attempts (actually all attempts are serious).  Even when I stopped making attempts (the last was 16 years ago) I continued to have those chronic thoughts for a number of years yet.  It seemed no amount of therapy, ECT, medication or hospitalisation would shift the thoughts.  Even though I wasn’t actively trying to kill myself, I was still very much thinking about it.

Time has changed that though.  As I have written here previously, I have found some hope and purpose for living.  I am not having suicidal thoughts any more, although certainly there are still the tough times.

The person who raised concern for me the other day lived through all of this, although at a geographical distance.  I don’t in any way want to undermine the effect that my actions, and what she knew of my thoughts, had on her or other people close to me.  I know she (and others) literally waited for ‘the’ phone call, and at one stage she had every reason to believe she had got it.  That must be an incredibly painful way to live your life, not knowing what would happen next.

I suspect that the history of all my attempts and chronic thoughts had a much bigger impact on my family and close friends than I ever thought.  I was after all, caught up in my own hell and, at the time, had little appreciation of theirs.  Not because I didn’t care about what my actions were doing but simply because I was drowning in my own stuff.

A psychiatrist once told me that in his opinion, once you had carried chronic suicidal thoughts with you, that it isn’t something you could completely put behind you.  What I’m wondering is whether it is also impossible for loved ones to put behind them?

After all that happened to me all those years ago, am I always going to have a ‘suicide risk‘ label hanging around my neck (in the minds of those who love me)?

I want to say “can’t we put this in the past and move on?”  But maybe it’s not so easy.  Maybe they see the words ‘mental illness’, which will always be in some way part of my life, and continue to live in fear of getting ‘that‘ phone call.  Maybe when they expect me to turn up and don’t, they automatically now think ‘this is it‘?  I really hate the thought that they live in such fear for me, even after all these years, but is it something impossible to let go of for them?

I’ve never been in the situation my family were in for so long when I was chronically suicidal, but I want to see it from their perspective.  I admit I was just a bit affronted when I got this phone call.  I thought ‘can’t we let this go?’, ‘at what point do I become free to move on from that time in my life?‘ and ‘are we always going to have this hanging over us?‘.  To me, I want this to be the past, but is that too hard or even impossible for those who had to stand by and watch (and wait for the phone call)?.

So I’m wondering what you think?  Maybe you’ve been in the same situation as me.  Then again, maybe you’ve been a family member/friend who had to watch as your loved one went through this.  Or maybe you’ve got yet another perspective.

I know suicide as a subject is really difficult to discuss for all of us, and if you can’t or don’t want to, then that’s fine.   I just want to try to understand whether my loved ones will always carry this fear with them.  And is it something that is possible to resolve?

PS.  Please understand that I have absolutely no criticism of my family or others who loved me through this period of my life, and I have no desire to hurt them beyond what I have already caused.  I know enough to know that it was an incredibly difficult journey for them, as it also was for me.  I appreciate, beyond words, that they stood beside me at all.

“Time does not heal wounds. It’s a body’s ritual that does. The instinctual cleansing with rain or other waters, the application of salves. Despite the sting. Even neglected, the body begins to take care. To repair itself. Blood clots, tissues regenerate, flesh scars. Soon, the thin white line is the only evidence of the pain. It is the body, not time. Time does nothing except create distance between the body and that which caused it harm.”

― T. Greenwood

I Am Not A Demented Chameleon!

Do you remember back in the playground when the overweight kid got called “fatty”?  And the one who told some fibs was branded “liar”?  There were endless names that children named other children without a care in the world.  We (and yes, I probably was one of them too) didn’t know how hurtful those names could be.  Perhaps half the time we didn’t even know what the words meant.  We had simply heard them from others, and thought we’d give them a try ourselves.  I think it’s where the re-phrased “sticks and stones will break my bones but names will always hurt me” fits.  And yes, those names did hurt.

Today, I and all my friends who have Borderline Personality Disorder (BPD) with me, got called names.  We were called  ‘demented chameleons‘.  Apparently Borderlines (like Sociopaths) they said, are ‘demented chameleons‘.  The original name was tossed at sociopaths (as the site was focussed) and my thoughts about that are another issue   I just got angry when I saw someone throw Borderlines into the fire, calling us the same name, with probably no thought at all.

It’s something that I can walk away from.  I’m used to it.  This type of name-calling happens for people with BPD all the time sadly.  Actually it happens to all people with mental illness all the time.  I can walk away and that’s what I did.  The person who labelled me a ‘demented chameleon‘ probably doesn’t personally know anyone with BPD, and simply read it somewhere on one of the awful websites that set out to degrade us.  It is probably a combination of stupidity and ignorance… and so it deserves my walking way.

The difficulty I am left with though, is that ignorant comments like that get read by others, and believed.  It’s what builds up the stigma against both BPD and mental illness as a whole.  That’s what really gets my blood boiling.  How dare they blast me with their stigma but also contribute to the overall stigma that all of us with mental illnesses face.

This is my idea.  For each time I see such a combination of stupidity and ignorance, I need to post here, my opposing view.  Maybe it might not be the same people that read both accounts, but in my world one can still outweigh the other regardless.  If people choose to feed the world with negative views of me, then I can feed the world with the positive.  Does that mean you are going to be reading posts like this everyday?  No, that’s not my intention.  But when my blood boils, I need to speak out.

People with BPD are not ‘demented chameleons“.  If you stop to get to know someone with BPD you will find that actually we are beautiful people.  We are generally very caring people.  That’s part of our disease.  But we are not demented.  While we may change aspects of ourselves in how we come across to the world. we are not cynically one thing one day and another tomorrow.  Moreover that changing does not happen out of an intent to hurt and manipulative.  It is simply who we are as we battle with the internal struggle to own who we are.  It’s not easy having BPD, and name calling such as this doesn’t help us.

I suspect that most people have no idea about BPD.  The label tends to draw a blank expression on the faces of those who hear it.  BPD is  not well known (like say, Bipolar) and is certainly not well understood.  But I will not sit quietly and see myself and my friends named as ‘demented chameleons‘.  That simply comes from ignorance.

And now having said that, I walk away and breathe.  Frankly, the people who choose to live in such ignorance are missing out on you and me.  Emphasis on the missing.  I almost feel sad for them.

Ending on a lighter note… I have been called a ‘demented chameleon‘ but I’m still waiting for the ‘incorrigible’.

Image credit: Used with permission of Sue Fitzmaurice. Facebook: Sue Fitzmaurice, Author

Image credit: Used with permission of Sue Fitzmaurice.
Facebook: Sue Fitzmaurice, Author

PS.  Victory after Publishing.  I’m happy to see that the offending material has now been taken down

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” 

― Maya Angelou

Prescriptions And Privacy

About a month ago I saw my doctor, a General Practitioner.  It was just a routine appointment, although it quickly went from routine to fascinating when he said he had been wanting to talk to me.  The result was that after two long years of debating with him my need for adequate pain medication, he finally agreed to prescribe some.

He had previously refused, in spite of acknowledging the level of pain I was experiencing from fibromyalgia, because he believed that my history of mental illness would mean that I would get addicted to the stuff and my mental health would suffer.  One of my arguments was that my mental health was suffering already as a result of the pain I was in on a daily basis.  For some reason unknown to me that argument seemed to count for nothing to him.  It seemed that he didn’t accept it and so was only prepared to let me use over-the-counter medications.  The problem with those is that they did nothing to relieve the pain, perhaps because they are designed to treat a different kind of pain.  Our argument went on over the months.  When I felt I had some fight in me I would raise the issue, but basically he was quite clear that he would never prescribe anything stronger and more appropriate.

Let me say at this point (in case you’re wondering) the easy thing to do would have been to change my doctor.  For me though, that has some difficulties related to my past experiences of doctors.  More about that in a future post… when I’m feeling brave.

In the meantime, what changed my doctor’s mind?  It seems he felt a little backed into a corner.  At an earlier appointment he had arranged for me to have some short-term counselling to deal with a specific unrelated issue that had been affecting my state of mind.  It was only to be six sessions, which always seemed too short, but it was free and it was available.  I had no other options and so I took up the offer.

I had seen the counsellor twice when I went to my doctor a month ago.  That was what my doctor wanted to talk about.  He proceeded to read out to me word-for-word something I had said to the counsellor, on my second visit, about my doctor’s refusal to treat me with pain medication.  I was totally gobsmacked to find that the counsellor was giving my doctor a written report of my counselling sessions.  This was not something I had been told about, nor had I given permission for him to share the details of my sessions with anyone.

That was the end of the counselling sessions.  I guard my privacy carefully and I expect that when speaking to a counsellor or therapist that what I say will remain confidential.  I accept that if I am at risk of hurting either myself or someone else then the counsellor may have to call in emergency services but I could never accept that my doctor needed to hear word-for-word what I said when I was no where near being in a crisis state.

Well that might have been the end of the counselling, but for some reason (he didn’t explain) my doctor didn’t appreciate what I had said to the counsellor, gave me a small lecture about “keeping secrets from him”  (really?) and then handed me a prescription for medication to treat severe pain.  Weird.  It’s like he knew he was discriminating against me and was waiting to see how long he could get away with it.

I finally had my prescription!  Yay!  The only problem is that a month on I declare it totally useless for me.  If my body is anywhere close to horizontal, the medication will put me to sleep (which is one way of dealing with pain) but it does absolutely nothing to take away the pain.  Actually if anything the pain has been worse in the past couple of weeks.  I wonder is he just giving me sugar pills (unlikely, I hope) or just a very small dose?  This coming week I will be going back to my doctor to keep fighting.  I have tried that drug but now I need another.  The fight goes on.

Gotta love doctors (and counsellors) like him.

“Life isn’t as magical here, and you’re not the only one who feels like you don’t belong, or that it’s better somewhere else. But there ARE things worth living for. And the best part is you never know what’s going to happen next.” 

― O.R. Melling, The Summer King

My Letter To America

It’s pretty clear to me that readers of my blog from United States outnumber all other countries by leaps and bounds, and because of that it’s important for me to say that I know what I am about to say might not fit too comfortably with those readers.  I know my country of New Zealand and yours, are quite different.  It is over twenty years now since I visited your country and I know how different what I saw then was from where I live.  Even though we might look the same, or similar, I think it is fair to say that our culture and society is quite different.  This post, which is basically about the use of guns, is not my attempt to sway your opinions on gun laws but rather I want to acknowledge that your environment is different to mine but clearly both have some issues to address in terms of guns.

In the past few days, New Zealand has been rocked by the news of the murder of two children, aged six and nine, (by their father) followed by the suicide of their father in Dunedin, one of New Zealand’s four largest cities.  It was not a mass shooting.  It is 24 years since we had a mass shooting in New Zealand (Aramoana, 1990).

The father shot dead the children in their beds, before turning on gun on himself.  Those children come from a school now in mourning, and while I hate to say it, I suspect this type of incident happens every day in your country.  In my country though, it is not common, thank God.  The mother of the children, the man’s ex-wife, had run next door to get help.  It’s hard to begin to imagine the hell she must be going through now.

The man apparently had a mental illness and was on medication for it.  To his family’s knowledge he did not have a firearms licence, necessary in New Zealand to own a gun.  It’s hard to imagine how he would have held a licence with a string of breach of protection orders in the past year.  Questions that are all being asked now.

Personally I am very glad that it is not easy to obtain a gun in my country.  I won’t pretend to be anything other than anti-guns, although as I said already I recognise that my society and yours are quite different.  But I will always stand up for more control on gun ownership.  I have no desire to live in a world where owning a gun is necessary, or even desirable.

I was 15 years old when my ex-boyfriend J loaded a rifle, gave it to me and told me to kill him.  He didn’t want to live if I wouldn’t be his girlfriend.  He owned a gun (he was 18 at the time) for hunting but I strongly believed both then and now that he should not have access to one.  Why?  He was too impulsive.  I knew he could shoot himself, or me for that matter, without too much thought.  The thought would come later, when it was too late.  And that is the problem I have with guns.  Act now, think and get the facts later.

I can still remember thinking how easily it would be to pull the trigger.  By then J had been creating a lot of problem for me by stalking.  Fear thankfully got the better of me, aside from the fact that I’m not the sort of person who could fire a bullet at anything, anyone. Harming anything is difficult for me.  I just wouldn’t do it.  Instead I dropped the gun and fled, running about three miles home.  He followed me on his motorbike.  Who knows where the gun was by then.  I didn’t stop to ask.

In spite of the fact that I would have arrived home hot, sweaty and out of breath I didn’t tell anyone what had happened.  My family was all home, it was Saturday night, and no one knew a thing.  It was many years before I ever let that burden go by telling my family (when I wrote my book).  The trauma of that night was something I carried with me from then on.  I didn’t tell anyone because I thought it must be my fault.  What’s more I had been told I must show Christian compassion to J, and frankly that seemed so unfair.  It still seems unfair and totally wrong to me.  I hate the thought of people being guilted into this Christian compassion.

That night was over 30 years ago now and, in spite of a lot of therapy, I still carry it with me when I see things like the Dunedin shooting reported.

It’s too easy to pull a trigger.  From what that man had with him, he had apparently gone there to burn the house down.  Who knows whether the shootings were part of the deal.  Maybe it was simply too easy.  I don’t know, and I guess no one will ever know.

I don’t want to get into a gun lobby debate but when this story hit me I needed to say that while I hate that those children have died, and I hate that their mother is now alone, I am very glad that guns are not common in New Zealand.  Tragedies like this happen but not often.  Thankfully.  Frankly I wish it was harder still to get our hands on guns here.  I simply don’t believe there is a need, although I accept that maybe your country is different.

“I became what I am today at the age of twelve, on a frigid overcast day in the winter of 1975. I remember the precise moment, crouching behind a crumbling mud wall, peeking into the alley near the frozen creek. That was a long time ago, but it’s wrong what they say about the past, I’ve learned, about how you can bury it. Because the past claws its way out. Looking back now, I realize I have been peeking into that deserted alley for the last twenty-six years.” 

― Khaled Hosseini, The Kite Runner

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Being Heard

ISOH Ear

It’s amazing how some of the most simple words can have such an enormous impact.  I think it is a fact that we all too often forget, or pay no heed, but Anna Rose of Rose with Thorns wrote a comment on my last post.  It was, exactly what I needed.  She said that she had heard, as other readers would have.  Being heard is one of those things that simply makes everything better.  Someone has heard me.

The post I wrote was not full on detail and that’s just the way it had to be in order to protect other people’s privacy.  I know that when I do that, it is going to be difficult for readers to fully grasp what is going on in my world.  I nearly deleted the post simply because I knew I couldn’t say what would make my pain make sense to the reader.  But there are lots of times in blogging, and in life where what we say might not make sense to the reader.  That’s okay for me.  For me what I need to know is that someone heard.  And Anna Rose, probably without realising how important it was to me, told me very simply that I had been heard.

When I think about what I most want to achieve in blogging, it is to be heard.  That someone has heard the thoughts I haven’t been able to speak (often) in my own world.  I don’t need you to agree with what I say.  I don’t need advice even. I don’t even need you to understand what I say.  Unless you have been through exactly the same experience, you can’t possibly understand exactly what I am going through.  All you can do is try to understand…  but we all know how limiting that can be.

“Being heard 
is so close to being loved 
that for the average person, 
they are almost indistinguishable.”

― David Augsburger

I came across the quote of David Augsburger above and asked myself whether being heard is the same as being loved.  For me, I don’t think so and that is because so often the people who come out of the blue and indicate they heard me, are not the people I would expect to be loved by.  So often for me, it is an almost complete stranger who will tell me I was heard and will make that big difference for me.  So often complete strangers will get it.

That said, if someone who loves me, also hears what I say, then that kind of seals the deal in some ways.  It is after all, what we often want from the person who says they love us.

I think too often we listen with the intention of understanding, and while that is an admirable wish, it seems like something that usually we won’t ever achieve.  Unless we walk in the world of the person we are listening to,  Unless we experience the same hardships and the same stressors, then it will be very difficult to understand entirely what they tell us.

I would rather someone listening to me, ensure that they hear what I say.  I don’t expect people to understand what, for example, my mental illness is to me.  They probably won’t because while others have the same collection of diagnoses, they don’t have the background I bring to it.  Their experience of that mental illness is going to be different, although admittedly sometimes similar.  If they are too busy likening their experience to mine, they are likely to miss exactly what I have said.

Stephen Covey said we listen to reply.  I think there’s truth in that.  We listen, and as we do we’re thinking of what we will say next.  By doing that, you’ve missed exactly what I said.  And that piece that you miss might just be crucial (to me) that you hear.

This doesn’t just apply to mental illness though.  Take for example physical illnesses which are often very difficult to understand if they are what is termed invisible illnesses (where you can’t see the evidence of the illness).  Because you might not have the same illness and symptoms as me, I don’t expect you to understand how limiting my pain is.  I’m way past the point of needing people to understand the nerve pain associated with my fibromyalgia (unless you have the same illness in which case we might have the same symptoms).  But what makes the difference to me is when you hear how this is for me.  I don’t expect you to take it away.  I don’t even expect that you will understand how that nerve pain feels.  I just want you to hear how it is for me.

I suspect that is a common wish for us all… to be heard how it is for us.  I suspect if more of us had that in our lives then there would be more acceptance of our individual burdens, there would be more sense of togetherness, and actually I’m sure it would result in less suicide and less mental distress.

Being heard made a difference to me in something that I knew most people would not understand the detail, because most people simply haven’t had that specific experience in their life. You don’t need to understand me.  You probably won’t.  But if you’re prepared to listen and hear, that’s enough for me because I, and my words are now valid.  Thank you for hearing.

“Listening is the most dangerous thing of all, listening means knowing, finding out about something and knowing what’s going on, our ears don’t have lids that can instinctively close against the words uttered, they can’t hide from what they sense they’re about to hear, it’s always too late.” 

― Javier Marías, A Heart So White

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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Play Nicely With The Other Kids

As a child I am sure I was told by my parents on many occasions to ‘play nicely with the other kids‘.  And that’s what I did.  Mostly.  I wasn’t one of the popular kids in the playground, but was one of the next tier down.  The middle of the road kids who were okay.  I had lots of friends, no real enemies except for the one class bully, and even her, I tried to be friends with.  I guess I wanted to be friends with everyone, rightly or wrongly, and pretty much, I achieved that.

It’s not an easy task to get along with everyone, and now to be honest, I wouldn’t be so open.  Now I’m more selective, but as I child I did what I was told to do.  What’s more, at that time as a young girl, I didn’t have a mental illness that contributed to how I ‘got along‘.  Now I do.

You don’t have to look very far on the internet to come across the sites that talk about what awful people those of us with Borderline Personality Disorder (BPD) are.  Those sites, which I’m not going to quote or name, will tell you that Borderline’s are really hard work to have in either your family or circle of friends.  Actually they probably warn you not to have Borderline’s in your circle of friends.  And do what you can to distance them from your family.  They’re simply too much work, and you’re just going to get hurt.  Sites by health professionals are also in abundance telling you that Borderlines are the worst patients you could have, and actually if you are a health professional, those sites would probably just tell you to steer clear of us Borderlines.

Those sites are ones that I purposely avoid, as they simply contribute to the large amount of stigma that exists toward Borderlines.  And actually, that is not what we need.  Apparently we have low emotional intelligence.  We are also impulsive and  aggressive.  We act like children and we are very sensitive to rejection.  Basically we are too hard work, and as a non-Borderline you would probably best to run a mile (or 100 miles) from us.

I’ve been aware of those attitudes to Borderlines for a long time, but have wondered how much of that I am seen to fit with.  I know BPD is a difficult illness to live with (for the person who has it!) but I’m not convinced there is the need for such strong feeling towards us.

I know that I don’t fit the classic mold of a Borderline.  My psychiatrist would go as far as saying that possibly I don’t have BPD.  I can’t afford to keep visiting psychiatrists until I get a definite answer, but so far BPD does seem to fit for me.

But while I played with everyone in the playground, and in my early adulthood was referred to as being a ‘people person’ who got on with anyone (and I mean anyone!),  now I start to wonder.  I’m too much of a recluse for a ‘people person’ anymore. I prefer my own company, and my own world.  I am an introvert naturally, but more and more I prefer being alone.  There are lots of reasons for that, and I admit that one is to do with repeatedly being let down by other people.

The people around me in my life actually don’t seem to want to be near me.  I’m not feeling sorry for myself, or having a pity party.  I just don’t get on with people as well as I did.  And those in my life seem more interested in distancing themselves from me.  We just don’t fit anymore.

Earlier this year I was victim of some lies told about me.  It was a situation where there was very little I could do about it.  I simply had to let it be, and hope that people worked out the truth in time.  I became quite paranoid, mostly because I didn’t know who had been told the lies.  I became very wary of people.  Another reason to withdraw, and I admit I found it hard not to do so.

I continue to be wary of people.  It’s hard to know who I can trust, and it’s hard to know who would choose to be on my side.  Would they bat for my team?  Somehow life has changed so that the people I thought would bat for my team, I suspect won’t anymore. And that is rather sad to find that those I thought would always be there have different lives and lifestyles from me, and we just no longer fit.  Time changes.  And time has changed me.  I choose to be alone, so much more than I did.  My own world knows my name, and I can be content there.  Can’t I?

Has BPD changed me?  Have the events in my life changed me?  Maybe it is the other people themselves that have changed, but then it’s always easier to blame the psych patient, isn’t it?  I don’t mean to accuse anyone of anything in this post, but rather I simply see that there has been a radical shift in my life.  I’m actually okay with the solitude I have now, but I do wonder what happened to the little girl in the playground who was friends with everyone.

“I live in that solitude which is painful in youth, but delicious in the years of maturity.” 

― Albert Einstein

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