Certainty

Certainty is one of those things that we never realise how much we appreciate it until we don’t have it.  I’ve realised that I am lacking certainty, and right now, I miss it dreadfully.

If you have been following my blog for a while you’ll remember that I live in Christchurch, NZ where we have been ravaged by a procession of earthquakes since September, 2010.  The quakes have finally died away (pretty much) but we live with the aftermath on a daily basis.

The most devastating quake to hit the city was on 22 February 2011.  People died, buildings collapsed, and lives would never be the same.  My home sustained substantial damage including basically splitting the building into three pieces and knocking it off its foundations in one corner.  But hey, after some emergency repairs it was deemed liveable.  It’s just not entirely weather-proof (it’s winter here, so I’m feeling that) and the floor slopes to one side.  Aesthetically it doesn’t look too good, but then there are many worse off than me.

Since then, certainty vanished.  I have little idea whether the house can be fixed, or whether it will end up being demolished.  I know that to fix it will take some major work, not to mention money.  In New Zealand we have a government agency, the Earthquake Commission (EQC), whose responsibility it is to fund the repairs of damage caused my natural disasters.  That funding is through a tax levy on insurance.

EQC has become the organisation we love to hate.  Personally I think a lot of that is justified.  Between them and my insurance company (that’s another story entirely because they literally fled the country) they hold my life in their hands.  My certainty is at their mercy.

For some residents of Christchurch, including my parents, their future was determined on the day of that quake.  Their home was immediately deemed only fit for demolition, and they were instantly homeless.  Not entirely homeless, because they just shifted into my home, until we were able to find a new home for them some months down the track.

That would clearly be devastating for anyone, and there were thousands of people in that boat. I don’t wish that for myself, but sometimes I think it would have been a bit easier.  At least I would know.  At least I could get on with my life.

But instead life stopped that day, and it’s been a waiting game ever since (for me, and thousands of other residents in the same boat).  Will my home survive?  I don’t know.  Will I have to shift out?  And where will I go?  I don’t know.  Will there be a fair settlement?  I don’t know.  I’m just waiting.

So today as I write, there is a small army of assessors from EQC roaming my property.  This was last done in September 2011 but they have come to the conclusion that the assessment they did at that time was not accurate.  Basically they didn’t take into account that my home is physically joined to three others.  How could they miss this fact?  I don’t know.  This has particular implications for me because my foundations need to be repaired and to lift the house in order to do that, they would probably have to lift the other houses too.  That starts to sounds complicated, expensive and possibly simply not worth it.

As this team of EQC staff (I think there are about 10 and apparently they are combining the assessment with a staff training exercise) go through my property (and my neighbours) inside and out, I wonder just what will be the result.  I certainly won’t know this today, and I suspect it will be months more before I get any certainty from them.  That’s just the pace they work at.  And this… is just life.

So does certainty matter?  Is it something I need to ensure lasting mental health even?  I’m inclined to think it does matter, simply because I like to know what is ahead.  Even if change is ahead, at least if I know, then I can prepare for it (mentally and physically).  But in this situation that’s not possible.  It’s no worse for me than for many other residents of this city.  We all face this indeterminate wait, with a foreboding that our future is in someone else’s hands.

Perhaps the major thing that I have learnt in this whole earthquake nightmare (which included the subsequent death of my father) is to live one day at a time.  The only problem is that sometimes it is just so damn hard to do that.

Some days I can do the ‘one day at a time’ philosophy.  I can accept that at some stage I am going to have to leave my home, either permanently, or temporarily while repairs are undertaken.  That I don’t know when that will be, and when it happens I probably won’t get much warning.

But other days, like last night when I was trying to sleep, it just seems all too much.  I just want to know.  I just want that certainty of what is ahead. Some days I can live with the uncertainty, but on others it seems like my entire mental health rides on those 10 EQC assessors who are here today.  But then here in Christchurch, that is the only certainty so many of us have.

“The world is a wonderfully weird place, consensual reality is significantly flawed, no institution can be trusted, certainty is a mirage, security a delusion, and the tyranny of the dull mind forever threatens — but our lives are not as limited as we think they are, all things are possible, laughter is holier than piety, freedom is sweeter than fame, and in the end it’s love and love alone that really matters.” 

― Tom Robbins

Related articles

• When Your World Turns Upside Down (infinitesadnessorhope.wordpress.com)
• In My Corner of the World… There Is Hope (infinitesadnessorhope.wordpress.com)

Anyone Up For A Game Of Truth And Dare?

One of my favourite Facebook pages is The Nutters Club NZ.  Their mission is to

“to forever change the way people, feel, think, talk and behave in relation to our mental, physical, emotional, spiritual, cultural and sexual well being; and in doing so encourage us all to take ownership of our own health and well being.”

It’s not a bad aim, in my books, and they do it through humour, as well as a television/radio programme fronted by kiwi comedian, Mike King,  seeking to de-stigmatise mental illness.  My only problem is that kiwi media lords give them such late night spots that I often don’t get to see/hear them.  But I love what they are doing on Facebook.

Yesterday I came across a clip on their page, of Stephen Fry and Andy “Electroboy” Berhman briefly discussing Electroconvulsive Treatment (ECT), sometimes called ElectroShock Treatment.

It’s one of those topics that my eyes spring wide when I see it mentioned, and I just can’t help but want to read.  Why?  Because ECT is something that I had, numerous times, over   about eight years.  It’s an important topic worthy of discussion simply because it seems that few have much understanding of it, or of what the long-term consequences are me, and the thousands of others who have had this treatment.

My eyes sprung so wide when I saw this clip, and some comments on The Nutters Club NZ page, that it was worth dropping back in from my ‘vacation’ of ‘baking pies’ (see Blocked).  For your sake, I hope I can make some sense,

You can read about my experience of ECT either in ECT – How It Was For Me or in my book, Infinite Sadness, 2009 which you will find on Scribd.com.

It’s now 10 years since I had my last lot of treatments, at which the psychiatrist administering the treatment sat me down (just after I had woken up from my general anaesthetic) and told me he felt I had received “too much ECT”.

In the state I was in at the time, I was hardly fit to ask what he meant by this.  My mother was with me (she had to drive me home) but knew so little about ECT that she didn’t ask what was meant either.  I never saw that doctor again, nor has any doctor been able to tell me what he meant.  Was I now an over-charged battery?  Had he fried my brain and left it charred?  I don’t know.  I was simply left to live with it.

What troubles me (more) about ECT is the lack of reliable information available.  Since writing about my experience, I have had a number of people ask me whether I thought they should have ECT, as it was being recommended to them.  Obviously I have no medical training and therefore can’t recommend anything.  All I can do is explain my experience. And I am more than happy to do that so that others have more information that what I had to go on.

There simply isn’t enough information available.  At the time anyone is being offered ECT I would suggest that they are probably not in a fit state to be making such a decision.  It’s one of those ‘last ditch efforts’ by doctors who simply don’t know what to do with a patient who they have classed as having treatment resistant depression.

I was ‘offered’ ECT on three occasions in 1995, 2002 and 2003.  On the first of those occasions my (now ex) husband decided for me.  On the other two, I just had to go along with it because there was no one else to decide for me, and there were simply no other options.  I simply had to let them do what they ‘thought best’.

It’s not a very satisfactory situation.  It really comes down to the doctor’s opinion.  And what I’m now wondering is, if those doctors had been the one’s being ‘offered’ ECT, would they take it?  How many doctors would submit themselves to repeated treatments of ECT?

Not only am I concerned about the lack of information, and the hardly ideal situations for making such decisions, I am growing increasingly concerned about how little appears to be known (and publicised) about the long-term effects of ECT.

Whenever I read about so-called long-term effects, it is about the effect on memory in the time following the treatment.  What I’ve often read is that while memory can be affected in the short-term, that in the months following memory will be returned to normal.

That’s coming from health professionals, but what I know from my own experience, and from listening to others who have had ECT, is that it is different for everyone and for some, memory is never returned to normal.  That’s two quite different scenarios.

My own experience is that over three separate courses of treatments my memories of about a year around the courses have gone.  I just don’t remember anything of the year around each course of treatment. That’s a considerable difference to what I have been repeatedly been told by psychiatrists, but then of course they haven’t lived it themselves, have they?  They’re simply going on theory.

I also believe that my cognitive functioning has changed as a result of ECT.  Again, I can’t provide proof but I know that before ECT was even a phrase on my lips I was a highly competent multi-tasker (actually I was employed on the basis of my ability to multi-task).  I had no problem balancing a number of issues in my mind, but now I struggle with more than one. I can’t even have music on while I’m writing now.  I need absolute silence in order to be able to think and write.

I accept that I have no proof that this decline in cognitive functioning is due to the ECT I received, but I can look at my university studies prior to ECT, and that after ECT, and see a difference in how I managed the material I was studying.  It was much more of a struggle after ECT.

One person’s experience does not make it true.  I know what.  That’s why I’m thinking a game of ‘Truth or Dare’ might be good.  I came across a paper by the United States Food And Drug Administration on Research Findings on Memory and Cognitive Impairment in ECT published by PsychCentral.  It read pretty much as I had ever had memory issues explained to me by health professionals.  I’d like to see those dare to put their own brains under repeated treatments of ECT, and see if they say the same thing afterwards.

If they’re not prepared to do this then it’s time that we started listening to those who have actually been through this experience.  What was the real experience?  Rather than the theoretical?

I think it’s really important that ECT is talked about more openly, but also that it is talked about factually.  Let’s not just listen to the professionals, but be open to hearing from those who have undergone ECT.  Let’s really understand not only how it works, but what are its long-term effects.

Related articles

• ECT – How It Was For Me (infinitesadnessorhope.wordpress.com)
• Infinite Sadness, 2009 (scribd.com)
• Research Findings on Memory and Cognitive Impairment in ECT (psychcentral.com)
• The Nutters Club NZ (facebook.com)

Blocked

I know from my reading of other blogs, that many bloggers at times, sit at their screens desperately waiting for inspiration of what to write about that day.  I don’t do that.  I don’t even actually get as far as sitting at my screen unless I have something specific on my mind that I want to share with you.  Any less than that, and I think that I am being unfair on you, my readers.  But that’s me, sometimes a little different.

Anyway I haven’t been sitting at my screen, and it hasn’t been because I have nothing to say.  Actually if you looked at my ‘drafts’ folder you would see that I have lots of things I want to say.  Getting the ideas is not the problem.  They are flowing thick and fast.  My problem is that I am having great trouble getting from the idea, through to having a presentable post for you.

I guess this is my version of writer’s block.  Probably if we could all meet for coffee (and tea, for those of that persuasion) I could tell you what I’ve been thinking.  But I just can’t get it onto the screen right now.

Other things in my life suggest to me that I am perhaps a little depressed right now.  It’s not crisis material, just time to take care of myself for a bit.  So if I’m not posting at what once was my regularity, then don’t worry, I will be back soon.

“If you get stuck, get away from your desk. Take a walk, take a bath, go to sleep, make a pie, draw, listen to ­music, meditate, exercise; whatever you do, don’t just stick there scowling at the problem. But don’t make telephone calls or go to a party; if you do, other people’s words will pour in where your lost words should be. Open a gap for them, create a space. Be patient.” 

― Hilary Mantel

Celebrity Rating Of Stigma

What makes me any different from Stephen Fry?  Or any other celebrity who speaks out about living with mental illness?  So I’m not a celebrity, but after that, we’re all the same.

There has been a lot in various forms of media this week about Stephen Fry coming out about his suicide attempt in 2012. Describing himself as a victim of his moods, he said that he views his role as head of the charity, Mind “is not to be shy and forthcoming about the morbidity and genuine nature of the likelihood of death amongst people certain mood disorders“.

I think it is great when anyone is ‘not shy and forthcoming’ about mental illness and suicide, but a celebrity adds the advantage of perhaps a wider audience than the rest of us. It got me thinking though…

Do we think it’s easier for Stephen Fry, or any other celebrity, to talk openly about their mental illness?  I ask, because sometimes I think that we rely too much on celebrities for this, saying “it’s easier for them”.  Somehow their money, and their status means they apparently have less to lose in being open.  I’m not so sure.

Stephen Fry has friends who might judge him, just like me.  He has family who might criticise him, just like me.  He even has a job he could jeopardize.  I don’t have that right now, but I have in the past.  He also has an audience through his employment.  They could judge him too.

It’s interesting because earlier this week I read an article that suggested that celebrities exposing their mental illnesses actually make the stigma  of mental illness worse.  Apparently celebrities give a warped impression of what mental illness is really like.  They don’t have the same fears as the rest of us about the repercussions of coming out.  Oh, and they’re “less seriously ill” than the rest of us.

It seems to me that celebrities can’t win either way.  If they speak out about their mental illness, they’re somehow judged as not having a clue what ‘real life with mental illness’ is like.  Somehow we think they have it easy.  We can think they have less to lose by coming out.  On the other hand, we rely on them to speak out, even when we’re too afraid to do it ourselves.

I don’t think celebrities have it easy with mental illness.  Anyone with a mental illness will go through hell, regardless of their social status.  Maybe Stephen Fry’s own version of  ’hell’ is different from mine, but if I choose to judge his ‘hell’ as not being ‘good enough’ then I am no better than the people who judge me… or you.

Personally I believe that the more celebrities who come out about living with mental illness, the better.  But only in that they reach a much greater audience than perhaps you or I might reach.  What is really needed is for people from all walks of life to be speaking out about mental illness.  After all mental illness doesn’t discriminate in who it affects.  It affects  all types of people.

I think the lesson we need to take from Stephen Fry’s decision to share with the media is that we should share too.  No, I’m not saying you or I ring up the local newspaper or television station but simply sharing with one other person, maybe a friend or family member, contributes to destroying the stigma that all of us bear.  It doesn’t have to be a big thing.  Simply telling one person we trust makes a difference.

“But just as we can all agree on what is red, even if we will never know if we each see it in the same way, so we can all agree – can’t we? – that no matter how confident we may appear to others, inside we are all sobbing, scared and uncertain for much of the time. Or perhaps it’s just me.

Oh God, perhaps it really is just me.

Actually it doesn’t really matter, when you come to think of it. If it is just me, then you are reading the story of some weird freak. You are free to treat this book like science fiction, fantasy or exotic travel literature. Are there really men like Stephen Fry on this planet? Goodness, how alien some people are. And if I am not alone, then neither are you, and hand in hand we can marvel together at the strangeness of the human condition.” 

― Stephen Fry, The Fry Chronicles

Related articles

• Stephen Fry: recent attempted suicide a ‘close-run thing’ (guardian.co.uk)
• Stephen Fry reveals attempted suicide (comedy.co.uk)

• Do celebrity disclosures promote mental illness stigma? (theglobeandmail.com)

• Coming Out (infinitesadnessorhope.wordpress.com)

Now That Was Really Nice

It’s really nice when someone who knows what journey you’ve been on, and for how long, takes the time to tell you that they’re impressed with what you’ve done and proud of you.  That’s what happened to me today, and it was so nice, and so unexpected, that I simply had to share it with you.

I haven’t always been very polite here, about my doctor (a General Practitioner), and I have come very close to finding myself a new one.  I might still, as this doctor and I often don’t see eye to eye, especially over the treatment of my fibromyalgia.  I’d go so far as to say that I suspect he’s one of those doctors who doesn’t quite believe that fibro is real.  He certainly wasn’t the doctor who diagnosed mine, and I really get no help from him in managing my symptoms.  But that’s not the issue though today.

My mental health journey has been going on for almost twenty years, and while this man hasn’t been my doctor all that time, he has indirectly watched my whole journey simply because he was my father’s doctor.  My father (who has since died) was always very concerned for me, and often felt helpless because either I was living away from him, or I chose at times to distance myself from my family.  I’ve always known that Dad used his doctor as something of a therapist for himself almost, as he struggled with his daughter’s illnesses.

Ten years ago this doctor became my doctor when I shifted to Christchurch, and I would add that I never felt he crossed any boundaries between his two patients.

Today I saw my doctor, just for a routine visit to pick up a prescription for the medication I take.  He told me that he was really proud of what I had achieved in my recent trip to England.  He said it was amazing to see me do that trip and have everything work out so well.  He was quite surprised and very happy for me.

He knew full well that for years leaving the house, or the hospital, was a huge achievement for me, but to see me fly to the other side of the world…    on my own…     meet a boyfriend who I had met on the internet through blogging…  have a fantastic time…   and then fly all the way back again…    was simply incredible…  and he was really proud of me.

It was far from easy to do what I did.  And it wasn’t without times when I almost backed out.  Actually I sat alone, in the departure lounge at Christchurch International Airport, crying because I didn’t think I could do it.  I was so close to walking out and catching a bus home, but somewhere I found the courage.  I so glad I did.

It took my doctor a few seconds to say what he said, but it means the world to me.  He told me that he wouldn’t want to make that trip alone himself, yet I had done it.  I think the best thing of him saying this to me was that it made me stop and say, “Wow!  I DID IT!”

There’s no way I could have done what I did two years ago, let alone ten or even nearly twenty years ago.  There is so much that I wouldn’t have coped with.  My mind was so muddled much of the time that if I had managed to get to the airport I probably would have ended up in the wrong part of the world.  But I DID IT!

To simply enjoy life is no mean feat, as anyone with a mental illness can tell you. But that’s exactly what I spent six weeks doing.  I DID IT!

I am so proud of myself. . . and appreciate the time my doctor took to remind me.

My message to you is that there is hope.  We can all do it (whatever ‘it’ is for each of us).  Sometimes it takes a while, but never give up!

Oh, and a final thought.  I told my doctor about my therapist’s fees (see yesterday’s post ‘Being There’ In Psychotherapy) and how I had finished my therapy yesterday.  My doctor was quite shocked by what my therapist had expected and agreed that I did the right thing in ending the relationship.  He had never heard of a therapist operating with that kind of ‘retainer’ fee system.  If I had any doubt (which actually I didn’t), he confirmed I had made the right decision.

*

“And one has to understand that braveness is not the absence of fear but rather the strength to keep on going forward despite the fear.” 

 - Paul Coelho

*

“Hope is a waking dream.” 

―    Aristotle

Related articles

• ‘Being There’ In Psychotherapy (infinitesadnessorhope.wordpress.com)
• Who Would Have Guessed? (infinitesadnessorhope.wordpress.com)

‘Being There’ In Psychotherapy

Here’s a tip.  It’s free, and well worth taking if you’re going into psychotherapy (or any type of counselling-type relationship):

Make sure you know what you’re paying for.

It sounds sensible, doesn’t it?  Actually it’s kind of obvious.  The thing is that I thought I knew what I was paying for (for eight years)… but I was wrong… apparently.

I should add that even if you’re in the very fortunate position of not having to pay for your therapy, it’s also worth knowing what is on offer before you start.

Jump back a month for a moment, and I was in England visiting my boyfriend.  One morning I was sitting in bed, drinking very nice, and very strong coffee, while I checked my emails that had come in overnight.  I was surprised to see one from my psychotherapist.

It’s just as well by coffee was good because his email attached his account for the six weekly therapy sessions I was missing while I was away.

My therapy is not cheap.  On the basis of the health system in New Zealand I really don’t think I should have to pay anything, but I realised (eight years ago) that if I wanted something that was actually going to make a difference, then I would have to pay cold, hard cash (not helped by the publically funded mental health system telling me a few years back that I was basically beyond their help).

And so I have paid myself, for around eight years now.  I’m not even going to dare to add up all that has cost.  That would be too mind-boggling, except to say that I know it has helped save my life, and therefore it must have been worth it.  It has meant living on an extreme tight budget for that time, but I dont’ regret that.

As I said, what my therapist offers is not cheap, and so the account was sizeable.  He wanted me to pay for each session I missed, regardless of the fact that I was out of the country, and regardless of the fact that I had given him three months notice that I wouldn’t be at those sessions.  Ouch!  That was a bit of a shock to my morning.  More coffee needed.

Right from the start of seeing my therapist I understood that if I missed, or cancelled the odd session, because I was sick or for any other reason, that I would have to pay for that session.  My understanding of that, for eight years, has been that this is a regular practise for many health professionals, used when a client doesn’t turn up or cancels the appointment at the last-minute.

I accepted that.  It’s hard to pay so much money for something you’re not getting, when you’re lying in bed sick and have to miss an appointment, but I could understand it from his perspective.  I just never expected that after giving three months notice of my intended absence from the country, that he would still charge me for those appointments I would miss.  And that’s where we have come undone.

Since receiving that email, and then in my weekly appointments when I got back to New Zealand, we have discussed this.  His expectations and mine are vastly different.  Apparently even though I wasn’t there for those appointments, and was not even in the country, he sees that he was providing me with a service.  He was ‘being there’ for me… even though I wasn’t there.

It made me ask the question of what it is I’m actually paying for.  From my perspective I always thought I was paying for a 50 minute appointment for therapy.  Outside of that weekly 50 minute appointment, I didn’t think I was paying for anything other than it being helpful if he would remember (in the way that works for him) the details we discussed from week to week.

He has always said I could telephone him in between appointments if I was really struggling and needed his help.  I guess (although am still not entirely sure) that was what he meant by ‘being there’.  It took a long time before I got a specific answer to my question… and then it wasn’t at all specific.

In eight years I might have rung for help outside appointments twice.  I find it very difficult to ask for help and have never felt comfortable with doing this, even though he made it clear that I could.  Actually that’s an whole other post just to cover why I haven’t used this.  But  it’something he and I have been very clear about in terms of my need.

As for the six weeks I was away, he had said (before I left) that I could speak to him by telephone, Skype or email if I needed to, although I made it clear that I wouldn’t telephone or Skype (I’m not good on those mediums), and doubted I would have the need to email him.  I guess he was saying if I needed help, then he would ‘be there’.  And from what I can ascertain, that is the basis on which he charged me for appointments I wasn’t there for.

Is this getting confusing?  Apologies.  It’s taken a bit of brain power for me to get my head around this but at the end of the day, it appears that he is charging for one thing, but I have been paying for another.  Yes, for eight years.  I actually don’t see any reason why I would pay anyone to ‘be there’ in this way for me.

My therapist knows that I am not willing to pay that money (nor do I have such funds).  I am also not prepared to be charged on that basis, anytime in the future.  I have never heard of anyone having to pay for therapy on that basis, and would be interested to hear, if you have.  Is this as odd as I think it is?  I’d also like to know what any therapists who might follow my blog, make of this arrangement of paying to ‘be there’, even if not there physically.

I’ve decided that I need to end this therapy relationship, because I’m not prepared to pay on this basis.  I’ve told my therapist this today.  Why is it that when you have to talk money that people start playing mind-games?  I have nothing I against my therapist but don’t appreciate the way he has handled this particular issue.  It was a relief to finish and leave today.

While this is a really big step for me, because I know this therapy has helped me considerably over the years, I know too that I can make it without his help from here on.  It’s not going to be easy to not have that sounding board or the unique understanding of me that he has had.

My therapist has been really good.  I have no doubts about that.  But I feel that while everything is not perfect in my life, and never will be, I am at a good point to do this.  Hindsight is always a great thing, but I don’t think I would have gone into therapy with him, if I had understood what it was I was paying for… some obscure idea of ‘being there’.  I’d go so far as to say that it’s a little spooky for me.  But that’s just me.  I like to know that someone is there in front of me, and that is what I pay for.  I actually don’t want anything else.

I think I will do more writing, and drink more tea (or coffee).  Maybe I will finally take up meditation.  Oh, and talk to my teddy bear more.  He doesn’t charge for ‘being there’…  regardless of whether he is (or I am) there.

“A combination of fine tea, enchanting objects and soothing surroundings exerts a therapeutic effect by washing away the corrosive strains and stress of modern life. [... It] induces a mood that is spiritually refreshing [and produces] a genial state of mind.” 

―    John Blofeld,    Chinese Art of Tea

Teetering On The Edge

This could be my shortest post ever.  Why?  Simply because it is so hard for me to write about.  It’s something that has been on my mind to write about for a number of weeks now, but I haven’t been able to find the courage.  These posts are really hard.  It’s much easier to just walk away but I know that right now I am teetering on the edge, and I need to address the matter.

‘Not Otherwise Specified’

‘Not Otherwise Specified’ is one of those terms that is attached to a lot of mental illnesses.  For me, it is attached to an Eating Disorder.  Yes, one of my labels is Eating Disorder – Not Otherwise Specified, or ED-NOS.

I’ve been carrying that label around with me for a number of years now.  Basically it says that I have a pattern of disordered eating but I no longer meet the physical requirements of another eating disorder like Anorexia, Bulimia or Binge Eating Disorder.  If you have been following my blog for a while you will know that I suffered from Anorexia for a number of years.  Now that my weight is not below the specified limits of Anorexia, and menstruation has returned, I am classed as ED-NOS.

This is where I get a little cynical, because I really don’t think that the fact I have ED-NOS is of any interest to anyone who is involved in my health care.  It is something I carry alone.  It seems to be that the ‘not otherwise specified’ tacked onto the end of a diagnosis is an excuse to ignore.  [My apologies to those health professionals who do not ignore].

That matter of being ignored has left me this week teetering (alone) on the edge.  I tried to get help earlier this week, when I realised the problem, but failed.  The person (a health professional who knows me well) was unwilling to listen.  I have enough self-awareness though to know that I am struggling, and to start to identify why by myself. I’ll try to explain.

While I was in England I was aware that I was having difficulties with food again.  It wasn’t really a new thing but when I am at home, and living on my own, I can just cope with the difficulties and ignore them if I choose.  When I’m suddenly living with other people, it’s not so easy.

One of the things I struggle with is choice.  Give me too many choices of food (like going into a cafe and choosing something to eat) I really struggle.  I go through this whole process of what I would like, what would be healthy, even what others will expect me to choose.  In the end, it is easier to choose nothing because I am getting flustered.  And so I do.  Even though I might be hungry, and I might want something. I have nothing.

Another difficulty I faced (which I hasten to say is no one’s fault, it’s just how it is) was being overwhelmed by too much food.  A large plate of food, even if I’m hungry, just seems too much and I struggle to eat it.  I struggle to know when I’ve had enough, and so I struggle to know when to stop.  Even my perception of how much is actually on the plate is distorted.

These issues may sound small but were affecting me each day as I faced meals, and snacks.  The pressure in my head was immense, and that just made it worse.

Coming home to New Zealand last week, saw me getting more stressed the closer I got to New Zealand.  Not for the same reasons this time, but rather a number of unrelated issues that I knew I had to face, and deal with, when I got home.  In my own way I started to panic and feel out of control.

When I feel out of control I rush to try to place control in parts of my life where it is possible.  A week on I have realised that I took that control I needed by controlling my intake of food again.  I have chosen not to eat as much as I know I need.

This is what Anorexia was about for me, all those years ago.  I felt out of control of my life at the time, so took control of one thing I knew I could.  Food.  And then I also took more control by laxative abuse and over-exercising.  I did it for years and made myself very sick, yet it was something that made me feel better because I at least had control of something in my life.

Right now I don’t have Anorexia and I am not underweight.  I just realise though how easy it would be to slip back into that disordered pattern of eating.  Reacting this way to other aspects of my life, which might seem out of my control, is not healthy.  I know that, and it’s not something I want to do.  But I can tell you that having that small bite (pun intended) of control is completely enticing.

Recovery from an eating disorder would be so much easier if we didn’t have to eat.  Yes, I like food but I hate how it screws me up and how I have to face that disorder several times a day.  There is no getting away from it.  It’s something that I must have in order to live.  If you don’t have an eating disorder, stop and think for a moment how difficult it is to face potentially deadly poison (like say a drug you are allergic to) several times a day.  It is literally like teetering on the edge.

PS.  One of the difficulties about writing this is the fear of advice.  I don’t want any.  I have a pretty good awareness of what is going on and what I need to do, and unless you have been through the same thing, then it is difficult to gauge what would be in any way helpful.  So please, don’t be offended by me saying ‘no advice please’.  I’m simply sharing my experience to raise awareness. 

I haven’t blocked out comments (because comments are always welcome), but in order to protect myself emotionally I won’t be responding to any advice that might be come through in spite of my request.

“It’s dark because you are trying too hard.
Lightly child, lightly. Learn to do everything lightly.
Yes, feel lightly even though you’re feeling deeply.
Just lightly let things happen and lightly cope with them. 

I was so preposterously serious in those days, such a humorless little prig.
Lightly, lightly – it’s the best advice ever given me.
When it comes to dying even. Nothing ponderous, or portentous, or emphatic.
No rhetoric, no tremolos,
no self conscious persona putting on its celebrated imitation of Christ or Little Nell.
And of course, no theology, no metaphysics.
Just the fact of dying and the fact of the clear light.

So throw away your baggage and go forward.
There are quicksands all about you, sucking at your feet,
trying to suck you down into fear and self-pity and despair.
That’s why you must walk so lightly.
Lightly my darling,
on tiptoes and no luggage,
not even a sponge bag,
completely unencumbered.” 

―    Aldous Huxley,    Island

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It’s Not All About Me

Recently I had cause to want to say something to someone, who like me, has Borderline Personality Disorder (BPD), or the new name Emotionally Unstable Personality Disorder (EUPD).  I wanted to say to her “It’s not all about you.” I could see her doing, what we with BPD always run the risk of, in taking a situation that wasn’t anything to do with her, and making it all about her.  I quickly came to the conclusion that it was best to keep my thought to myself this time, as otherwise it would have indeed, become all about her.

I should say that I know us well, and so if you have BPD and are thinking that I’m talking about you…  I’m not.  You know that song “you’re so vain, I bet you think this song is about you“?  It’s true.  This is nothing about you.

That said, all of us with BPD will know our tendency to think that the world revolves around us.  Whatever is said, must be about us. Whatever is said, must be confirmation that we have just been, or about to be, abandoned.  Whatever is said, must be an indication that the speaker doesn’t like us.  We use it to feel rejected, hurt and abandoned.  Every time.

The problem with it is that not only do we take the wrong message from what has been said, but we also run the risk of making that rejection happen.  People get tired of us taking things the wrong way.  They get tired of us making what has been said, all about us, when really it has nothing to do with us.  The ultimate is that we end up abandoned, as we feared, because of out own actions.

This is something I know about, because I have been doing it for years.  I could have gone on doing it too.  I could just say “it’s just my BPD that makes me do that“.  I might not be popular for saying it but BPD can be used as an excuse way to easily.  For me, I know my BPD makes it likely that I will interpret situations/conversations to be all about me, but I’m trying to make it different.

I’m trying to say “hang on a minute, this is not all about me.”  Actually, it’s probably got nothing to do with me and I would be a much better friend to myself and those around me, if I could distance myself from the automatic reflex of ‘it’s all about me‘.

I know what I am suggesting is not easy.  Actually it’s really hard to un-do a lifetime of reacting this way.  But I realise that while BPD is part of my personality, I don’t have to let it rule my life.  I don’t have to let that reflex kick in.  It is possible to do things differently… if I try.

BPD isn’t something that can be cured.  We know this, but I don’t believe I have to be permanently disabled by it either.  I can teach myself to react differently.  I can tell myself “hang on, this isn’t about me, how about I react differently?“

Maybe you have BPD, and disagree.  That’s okay.  I know that this is really difficult to do, and maybe you’re not in a space to be able to try.  This is just something that I have been trying for myself, for about six months now, and while no one else might be able to see a difference (and that’s okay), I know that for me, there is a huge difference to how I react to the things that happen around me.

I admit it’s still not an automatic thing for me.  I think it takes time to make things automatic, and maybe even the existence of my BPD will mean it’s never automatic.  But I’m not going to let that stop me.  I know that if I am to have a good life and healthy relationships I had to make a change.

It’s about self-talk.  There are no miracles and each time I see or hear something I consciously have to say to myself ‘it’s not all about me‘.

It’s hard, and it won’t happen for me unless I make the conscious decision to do things differently. When the person I referred to above tried to make a conversation all about her, I too (and I know that sounds crazy) had to then tell myself that her response was ‘not all about me’.  It ran the risk of snowballing for me, but this time I was able to stop myself and remind myself to do it differently.

Now, a reminder for readers who have BPD.  What I have written is ‘not all about you’.  What you choose to do with this information is your choice.  I have not written this about you, or even for you.  How do I know that?  Because this written ‘all about me’.

And if you don’t have BPD?  Believe me, that this is a big issue for us.  We struggle with it in every connection we have.  It’s disabling to the point that it prevents us communicating with others.  But I’m not willing to let it disable me anymore.  If I want to have healthy relationships then I have to find a way to beat this aspect of my personality.

“It is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.” 

―    Abraham Maslow

Sunrise… To Improve Mental Health

Whether we have a mental illness or not, we all have varying degrees of mental health, which we should treasure.  One of the things that I happen to know does wonders for my daily mental health, is to witness the sunrise.

I’ve always liked a good sunrise.  No matter how I’m feeling, it somehow lifts my soul to see the beauty of our universe put on display for me (and you) every morning.  In my younger, fitter and healthier days I used to run regularly at the crack of dawn.  I chose this time primarily because, other than other runners and walkers, there is generally no one else around.  But it also gave me the chance to watch the sunrise.

On particularly energetic mornings I would run to New Brighton Beach to see the sun come out of the sea, and then home around the Avon River in the stunning morning light.  It was impossible not to stop and go

“wow”

It doesn’t matter what your beliefs are about how that sunrise was created, it is beautiful, it is everyday and seeing it is so good for my mental health.  A great way to start the day.

Now that fibromyalgia has put paid to running, I admit I don’t see the sunrise as much as I’d like.  It’s just too hard to get out of bed early enough, but this past week I have been lucky enough to witness two sunrise experiences that are not usually within my reach.

I was flying home from my stay in England this week.  It was 41 hours of travelling and I might have snatched a few minutes snoozing, but not anything worth counting.  Planes and sleep just don’t seem to go together… for me anyway.

Early Monday morning (about 1am) I arrived at Dubai Airport where I had an eight-hour wait for my next flight.  It was going to be a long night.  I set about upping my caffeine levels, as firstly coffee on planes doesn’t even resemble coffee (other than it is wet, warm and brown) and… because it was going to be a long night.

I can tell you that coffee served in airports is also fairly insipid and not resembling the dark, strong brew I prefer.  At 4.20am I was sitting at the Nestle Toll House Coffee Stand.  The coffee was reasonable, the staff were friendly and most importantly, it was quiet (just what I needed!)

At that moment, over the public loud-speaker, came a male voice which I’m not sure whether I should describe as a wail, a chant or a song.  My limited knowledge of religion in that part of the world suggested to me that perhaps this was some kind of sunrise call to prayer.  It went on for about four minutes.  It wasn’t at all intrusive, although it was certainly different from the music that had been playing, interspersed with announcements.

I admit I had absolutely no idea what the words he sung/chanted meant but I liked it.  I liked the idea of calling people to pray, and I don’t really care which religion you or I are thinking of.  For me it was a chance to take a few moments to be thankful for the day.

Having left my boyfriend in England the day before, I hadn’t been very thankful for anything.  I was very upset to have left.  But this unknown-to-me chant, encouraged me to be thankful.  It was a good thing for me, because it turned my emotions from upset to calm.  That had to be good as I faced the rest of my trip home.

Shortly after the chant finished, I walked around the terminal to where I could hopefully see the sunrise (believing that the two coincided).  Actually in Dubai, it’s hard to see the sunrise (and the sunset for that matter).  There is a very thick brown haze over the city.  Of people I asked about it, some said it was smog (air pollution), others said it was sand in the air, heat, and yet more others said “oh, that’s just Dubai“.  Actually I suspect it was a combination of all four, but whatever it was it made the sunrise or sunset rather hazy and difficult to appreciate.

Later that morning my flight continued on to Bangkok, Sydney and then finally Christchurch, on Tuesday afternoon.

On Tuesday morning while flying east across Australia I had the opportunity to see the most amazing sunrise I have ever seen.

“wow”    “wow”    “wow”

Unfortunately the camera on my phone doesn’t work (and I really need to go and replace the phone) so I don’t have a photo of it to show you.  I did find a link to a sunrise similar to what I saw.  I don’t have permission to show it here, but if you are interested… check out this link:

http://www.travelblog.org/Photos/7972?fb_action_ids=463709203717651&fb_action_types=og.likes&fb_source=timeline_og&action_object_map=%7B%22463709203717651%22%3A10150243191270737%7D&action_type_map=%7B%22463709203717651%22%3A%22og.likes%22%7D&action_ref_map=%5B%5D

Excuse me for going on about it, but it was even better than that photo (which is pretty amazing).  It started out terracotta red.  Now sunrises in New Zealand are never that colour, just the ordinary pinks and reds, so I knew I was in for something special.  If you can imagine this, it developed into a rainbow effect flat along the horizon for as far as the eye could see (with the colours in their order right down to the red at the horizon).  I could even see green in the sky.  Yes, really.

I have never seen green in the sky as a natural colour, and was completely blown away as I watched for maybe 20 minutes.  When the sun finally came up it was molten gold.  Wow!

That sunrise made my day.  It made me happy.  It made me glad I had been on that plane, at that time, even if it had meant leaving England.  When my brother picked me up at Christchurch Airport, it was one of the first things I told him, even though it was some nine hours on.  It had completely lifted my spirits to see something so natural, be so beautiful.

So maybe getting up to watch the sunrise isn’t your thing.  That’s fine, but there are other times of the day where we can just marvel at the beauty of the universe.  Why not?  What harm can come of it?  Go outside and watch the sunset, or check out the moon and the stars when it is dark.  Do what works for you.  For me it is the sunrise, but also seeing the moon always connects me somehow to my friends on the other side of the world.  I know that they will see that same moon soon.

It’s only a little thing but appreciating the beauty of this earth, and universe is a good way to lift our mental health.  Give it a try sometime.  See what it is that you appreciate.

An excuse:  Two days on, I am still jet-lagged and trying to catch up on sleep, and myself.  So please forgive me for rambling.  I just knew I needed to share the moments.

“And yet day and night meet fleetingly at twilight and dawn,” he said, lowering his voice again and narrowing his eyes and moving his head a quarter of an inch closer to hers. “And their merging sometimes affords the beholder the most enchanted moments of all the twenty four hours. A sunrise or sunset can be ablaze with brilliance and arouse all the passion, all the yearning, in the soul of the beholder.” 

―    Mary Balogh,    A Summer to Remember

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Imagine What This “Crazy Accident” Does to Mental Health

It’s been a while since I have posted, because as I said in my last post, I am currently in England. While there have been many things I have wanted to write about, circumstances have meant that is just hasn’t happened.

Then yesterday I saw a random news article.  Initially I was speechless… and then I started to rant (I do that sometimes).  Then I decided I simply need to share this with you.  Not for the sensationalism that I’m sure some ruthless writers could capitalise on, but for the wake up call that this has to be.

“It is easier to build strong children than to repair broken men.”

Frederick Douglass

Before telling you about the article it is important for me to say that this is about guns and I don’t like guns.  I don’t agree with the public having ready access to guns, and even though I recognise that in some countries, people claim their ‘constitutional right to bear arms’, I personally disagree with this.  That said, I don’t come from such a country and so some may say I have no right to comment.  Except that free speech is a right too, is it not?  I have little interest in debating gun control, but I have a lot of interest in considering ways in which we can protect the mental health of the public at large, both child and adult.

Described as “just one of those crazy accidents” the news article, to which I refer, told of an incident this past week where a five year old boy in Kentucky, US accidentally shot dead, his two year old sister.  This “crazy accident” occurred using a 2.2 calibre rifle the five year old boy was given as a gift last year.

I admit that I had no idea that there were guns made specifically for children.  How naïve?  I can’t imagine what possible need there would be for children to have guns in their possession.  It’s not worth anyone trying to tell me what need there is, because I simply won’t believe you.  Personally I have enough trouble with a five year old having access to a toy gun, but to a real gun?  With live ammunition? Absolutely not.  It is just wrong.  Why can’t children be children?

What really concerns me is the effect that such things has on the mental health of the people involved.  How does a five year old comprehend what he has done in killing his sister?  How does he cope with that, both now, and for the rest of his life?

How do his parents cope with what their son has done?  But perhaps even more so, what they have done in allowing their son the access to the gun?

Of course I am not a parent, and therefore can only begin to imagine what their thoughts and feelings might be right now.  I don’t want to judge the parents, but I do see the need to ask what happens to the mental health of the family (as a group and as individuals) when children have access to guns.  There are a number of mental health labels that I can see becoming a very real part of this family.  Is that what we want for our societies?

My opinion is that it is not in any way what we want.  I can not see a single reason why a five year old child should have a gun or ammunition.  Surely children need to be children.  We shouldn’t be turning them in mini-adults by giving them either the tools or the skills to kill (whether by “crazy accident”or not).

The right to bear arms becomes crazily out of control when children have their own guns.  It strikes me as interesting that there is so much concern about people with mental illnesses having access to guns, yet meanwhile our children, even pre-schoolers, are given guns.  How do they have the ability to determine what is right and what is wrong?  Without a doctorate in psychology I probably can’t comment except to say that I don’t believe children can make the decisions they need to be able to, in order to manage a gun.  That said, I’m not convinced I can either (and that has nothing to do with my mental illness).

I feel incredibly sad for that five year old.  It is beyond me how he can cope with the feelings he has after accidentally killing his sister this week, both now and in the years ahead.  I believe he will need a lot of support for the rest of his life.  Maybe the news media want to call it ‘a crazy accident’ but I can’t.  It was a tragedy waiting to happen.  I hope that parents who allow their children the access to firearms will act now to stop it happening again.

“If you want your children to be intelligent, read them fairy tales. If you want them to be more intelligent, read them more fairy tales.”  

 - Albert Einstein