What’s Fair?

I caught myself out last week, saying a sneaky little “It’s Not Fair!!!”  It’s easy when I take a somewhat child-like view of ‘everything is against me‘ and so…  ‘it’s not fair‘.  It’s so easy to slide down that way and to end up feeling completely sorry for myself.

In my family, my second oldest nephew is well known for his “it’s not fair!“.  Of course, being the second oldest, and worse still, the middle child, is first on his list of what is ‘not fair‘.  There’s sometimes bigger issues at stake for him too.  I’ve heard his father (my second oldest brother and a middle child) give Master Thirteen his reasoning for why actually it is fair.  It’s something to do with being fair or equitable.  Actually it’s lost on me, but then his speech was never for me anyway.  Sometimes though, it would be helpful to have someone who would remind me of a better way to look at things than ‘it’s not fair‘.  Sometimes it’s too easy to forget.

Last week I went to the doctor after a few weeks of what seemed concerning and slightly weird symptoms.  I’m never very good at getting myself to the doctor but googling some of my symptoms left me with the clear instruction to do exactly that.  Go to the doctor.  Now.

To cut a long story short (I know you don’t have all day), the doctor started using the words ‘likely tumour‘ and began the process referring me to an ENT specialist.  As he said, my symptoms were out of his league.  I guess at least he was honest.  Then again, that ‘T‘ word is a bit like the ‘C‘ (cancer) word.  Words we don’t want to hear. I didn’t want to hear what he had to say.

I think I was only in the car park when I began on my ‘it’s not fair‘.  Doesn’t it seem like some people go through life with not a problem?  No serious illnesses, no big crises, not even huge relationship breakdowns.  They just glide through life.

And that’s where I got in my rating of fair.  I didn’t need to go any further than mental illnesses and chronic physical illnesses.  It seems like it’s one thing after the other.  I won’t go through all my other woes.  If you’ve been reading you will have an idea of them.  If I simply look back at the last five years?  Wow!  Crisis after crisis.  Wouldn’t it be nice to have a quiet patch?  A space in which life would just flow easily?  Is that too much to ask?

I started to think about what ‘fair‘ actually means.  I didn’t get very far.  What dictionaries suggested was that “fair  was the right way to treat someone, and what they deserve“.  But what does that mean?  Who gets to decide what is right for my life compared to what is right for say, yours?  And even more so, who gets to decide what I deserve?  That starts to suggest karma, and I have to admit that I actually don’t believe in karma (I’ll probably be shot down for that one).  Karma, in terms of retribution makes no sense to me for the same reason as fair makes no sense.  Some people get such a rough deal in suffering when they’re actually very good people, where others just sail through life and are scoundrels.  I can’t accept that this is because of what they might or might not have done, or even what they deserve.

So I’m choosing not to say this latest blow at the doctor’s surgery is fair or not fair.  It just is.  It’s just the next thing that I’m going to go through.  It scares the hell out of me but I don’t deserve this any more than anyone else would.  It’s not about fair, it’s simply about what is.

In the meantime I just have to wait.  The New Zealand Health System is such that I just have to wait my turn to see the specialist.  The doctor told me I am likely to get bumped up the waiting list because of what he called the serious nature, but I still have no idea how long that will take.  Hopefully not too long as some of the symptoms are getting on my nerves, and I sure can’t claim to being a patient person.

“The world isn’t fair, Calvin.”
“I know Dad, but why isn’t it ever unfair in my favor?” 

― Bill Watterson, The Essential Calvin and Hobbes: A Calvin and Hobbes Treasury

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

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

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

Lost For Words

It’s been a while… well, it has been a while for me since I wrote.  In my last post, I commented that I thought I had turned a corner, and I firmly believe that in that I have gained a whole lot of peace that has been missing from my life for months.  It doesn’t mean all the hurts are healed by any means, but it does mean that I can start to move forward.

That said, I stopped writing because I have simply been lost for words.  I still am, but I’m trying to pull a few words together because for some people I owe them an explanation for my silence and absence.  I know that I’m not doing a good job as a friend right now, because I guess I have cut myself off and withdrawn into my own world.  There are a number of reasons for that, some of which I have a better understanding of than others.

Firstly, fibromyalgia.  One of the symptoms of my fibro is my inability to recall the words I want to use in conversation.  It applies to writing too but it simply takes longer, but for a conversation I am constantly struggling to come up with the words I want.  There is a technical name for that, but I admit I can’t for the life of me remember.  Ironic, isn’t it?  But it’s just a label.  It’s also something that is common for fibro sufferers although everyone’s symptoms are different, and so not everyone will struggle with it.

It is good when I have someone with me who knows me well.  They can help me find the words I want, but usually I just look, and sound like I’m old before my time and my memory has gone, or just completely dumb.  My memory hasn’t gone, and I’m not dumb.  It’s simply about the brain processing information.

I admit that I get frustrated with it when it is particularly bad, and so I withdraw.  Any form of communication becomes frustrating.  It’s easier just to not go there.

But there’s another reason for my withdrawal, one which I don’t fully understand but that I’ve seen myself go through before.  This past year has seen a lot of hurt for me.  I haven’t been treated as well as I would like at times, and because of it, I have struggled to trust.  The more I got hurt, the more I withdrew because I simply didn’t want to be hurt again.

It gets out of control when I don’t know who to trust, even my close friends.  When the scared part of me shuts them out, as I have done, I know that I’m in problems.  It’s just that acknowledging the problem is one thing, but changing the behaviour is another.  It’s not that I don’t trust my friends, but it’s more that I don’t trust the world as a whole, and my friends get caught in the way.  I’m sorry.

I have written in the past about Ted (see Real), and in this situation he becomes all that I trust.  He becomes my world because I know he won’t hurt me.  I said to myself a few months back that I wasn’t ever going to write about Ted again because the risk I took in my honesty about a very vulnerable part of my life was abused.  But if you don’t get anything to do with Ted, then you won’t get me.  Ted is, in part imaginary, as well as in part real.  It’s confusing, I know.  Over a long period of time he has been my way of coping with the world.  When the world gets too much, I withdraw back to him.

Withdrawn is not a place I want to stay but if you haven’t heard from me, if I haven’t replied to messages, if I haven’t commented on your posts… this is why.  I’m trying to learn to be a part of the world, a human, a trusting human again.  I have got some peace, but now I need trust.  Please bear with me in the meantime.

“If ever there is tomorrow when we’re not together… there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart… I’ll always be with you.” 

― A.A. Milne

  • Real (infinitesadnessorhope.wordpress.com)

You Should Have Protected Me

Since I started to write about my life experiences and journey with mental illness, I have had a variety of responses to my experiences from friends and family.  That’s not surprising.  Often I reminded them of things that had happened in the past, people who had been in our lives, and often too, they have also gained a different perspective to our shared histories.

“I wish there was something I/we could have done”

“I wonder if I/we could have helped”

“Perhaps I/we could have protected you”

Sometimes their responses were affirming for me, but other times I admit I wished I hadn’t written it in the first place, because now it seemed that some were holding guilt for something past (whether or not it might be warranted).  It’s hard, because it wasn’t something I was seeking.  For most of the bad things that happened along the way, I wasn’t consciously blaming others, although I know that, mostly, unconsciously there was a conversation going on in my head of “if only“.

“If only it could have been different”

“If only someone had been there”

“If only someone had protected me”

But ‘if only‘ didn’t happen.  Or perhaps if ‘if only‘ had happened then I wouldn’t have been writing about it.

For that conversation in my head, I have had to travel a journey of forgiveness and letting go.  Sometimes it has been easier than others, and I admit I am far from completely through that journey.  Sometimes I think I’ve got there, but then it hits back and I know I have more work to do.

Perhaps the bigger battle though, has been the statement that I see now that I have spent most of my life telling myself…

“You should have protected me”

I should have protected me.  Right or wrong, that’s what I’ve been saying.  I should have made sure the harm I came to, or the experiences I went through, didn’t hurt me.  I should have protected me.

What strikes me is that even as a child I expected myself to be the one doing the protecting.  That seems like an awfully big ask for a child.

I realise I continue in my life today saying I should have protected me.  If I look at the events in my life of the past year or so, I have struggled more so with somehow letting myself down, than with what anyone else might have done to me.

As I have written recently, I felt let down by my gut instinct (see Gut Instinct).  My gut instinct appeared to have not warned me of danger.  I felt so sure of what I was doing, certain I was on the right path… only to crash and find I was ‘wrong’.

I put that in inverted commas because I felt wrong.  I was certain I had got it wrong, but I’m starting to accept that while my gut instinct didn’t lead where I thought it was going, it wasn’t necessarily wrong.  And that is a huge thing for me to be able to start to say (actually a friend said something similar to me a while ago and I couldn’t possibly see what she meant).

Right now I have little idea how it can be can be ‘not wrong’, but I’m willing to let it be a possibility.

While I have had another outstandingly, horrible week, I’m learning in the process of pain.  I’m learning to forgive myself.  To remember that I am human too.  I am allowed to make mistakes, and I don’t have to punish myself for a lifetime ever after.  I admit I know very little about self-forgiveness because I’ve never given myself that chance.  I’ve been so hard on myself that self-forgiveness was never an option for me.

Today, I realise that I can forgive myself.  I can allow myself to be human.  Just as I allow others to be human, it counts for me too.  I think I’ve turned a corner.

“Therefore, you really need your inner protector to stick up for you: to put your weaknesses and misdeeds in perspective, to highlight your many good qualities surrounding your lapses, to encourage you to keep getting back on the high road even if you’ve gone down the low one, and – frankly – to tell that inner critic to Shut Up.”

 - Rick Hanson, Wildmind

World Mental Health Day 2013 (Kiwi Time)

Today (10 October) is World Mental Health Day.  Yes, I accept that for some of you I am a day early. That thing called time zones always has me a day ahead of everything, but maybe that just means we can have two World Mental Health Day’s.  What do you think?  Twice the coverage?  It would have to be good.

My first task on this day was to go look at what the World Health Organisation (WHO) have set for the theme of the year.  This year’s theme is the elderly and mental health.  Personally I think this is a great theme, not simply because we are all getting older, but because I have an 85 year mother for who I have some responsibility to help as she copes with what old age throws at her.  Old age ain’t pretty (and I’m not talking looks) but it’s actually not what I have on my heart today, so I’m deviating from the theme.  Apparently that’s allowed.

I am worried about what is happening about the mental health needs of those on our planet who aren’t fortunate enough to live in first world countries.  From where I’m looking it doesn’t seem like there is a whole lot of support for people with mental illnesses in the third world, and perhaps war-torn countries, let alone for those who are simply trying to maintain a good level of mental health.

Look at the globe depicted in the hand in the image above, and that says a lot to me.  Because it seems that all the world’s focus is on the countries who actually probably have the resources to handle their needs, if they just managed them properly.  But where are the poorer, less resourced countries?  They are the ones that need to be targeted.

I like the focus there is on veteran mental health, and the need identified for post traumatic stress support and treatment for those who have served in war zones.  But what about the people who live in those lands as their home?  What are we doing to treat their post traumatic stress?  They experience trauma too.

A few weeks back there was a major (7.7 magnitude earthquake in Balochistan, Pakistan).  Having lived through a number of catastrophic earthquakes in Christchurch, New Zealand, I admit my ears prick up when I hear there has been another major quake somewhere in the world.  While this doesn’t directly relate to World Mental Health Day, what struck me then was the scant media coverage of the tragedy.  For some reason the people of Pakistan suffering and being killed was of seeming little importance to the world media, and so it sadly becomes of little importance to the world.

And that’s where I get back to World Mental Health Day.  When world media decide for themselves what they class as important, people miss out on the aid and treatment they need.  The survivors of that quake will be in all sorts of need for mental health support right now, but what’s the bet that half of us didn’t even know it happened?

What else matters to me?  I’ve been thinking about the situation in Russia with the open abuse and restrictions on those people who identify with LGBTQ.  I wonder if you are a transexual, Russian woman how you access good and safe psychiatric care for your Bipolar Disorder?  The gay, Russian man with suicidal depression?  I’m wondering whether they are of any priority to the people and services who have the skills and resources to treat these people?  They need and deserve the same standard of care as the heterosexuals in that country.

I don’t know the answer to these questions but I damn well hope someone does.  I hope someone has these peoples needs on their priority lists.

World Mental Health Day is a wonderful tool if we use it to ensure that mental health services stretch right around the globe.  If World Mental Health Day is just for the first world countries then I think we are all letting down our fellow human beings.  We are one planet and we are all worthy of quality mental health.

“I’ve always thought of wholeness and integration as necessary myths. We’re fragmented beings who cement ourselves together, but there are always cracks. Living with the cracks is part of being, well, reasonably healthy” 

― Siri Hustvedt, The Sorrows of an American

Something Better Than Today

Every few months I get a little bit desperate.

The pain and fatigue of fibromyalgia gets too much, and even more so, does my inability to access adequate medication to treat it.

I know I should just stay away from Google and search engines.  They are often up to no good.

But as I said, I’m a little bit desperate…

…and so anything will do (almost).

Don’t worry though, as I am still a little bit careful about what I read on the internet about fibro (and anything else).

As I say though, I’m a little bit desperate… again.

Sometimes things we already know, come off the screen at us and we feel the shock of reality all over again.  This time I was reading about the use of medicinal marijuana to treat pain, something I have had recommended to me many times, from many different places.

This is what I read (first paragraph on the page):

Fibromyalgia, a chronic pain syndrome, is hard to treat and impossible to cure. With pain so debilitating, patients may wonder about trying medical marijuana to ease their discomfort.”(1.)

I knew everything contained in those two sentences but that “impossible to cure” hit me hard.  I had heard “there is no cure” at the time I was diagnosed, but I guess I hadn’t really heard it.  I knew it, but I hadn’t really taken it on board.  This time I did.  Ouch!  It hurt.

Why?  Because my options look slim, and while fibro is not going to kill me, it does kill my ambitions and dreams for the rest of my life, when I can’t find some form of treatment that will enable me to manage my symptoms.

I want to be working again.  I want to use the skills I’ve have, and have purposeful employment that can give me a sense of achievement.  I’d even like to earn some money doing it.  Being flat broke isn’t easy.  I don’t actually want to be reliant on welfare handouts for my existence.

It’s not my mental illness that is stopping this from happening, but the fibro, and my inability to get relief from the ongoing symptoms.  I can’t even say “well, I’ll work two days a week” because I have no idea which two days in a week I would be able to do the job.  I don’t know from one day to the next, how I will be, and whether I will be able to work.  No employer in their right mind would take me on.

There are lots of possibilities for alternate ways to treat fibro, but that’s not what this post is about, except to say that most alternatives are expensive and beyond my budget, or interfere with my current prescribed medicine regime (for my mental illness).

This post is about something that I’ve been struggling with for a while, and was part of the reason I chose last week to stop blogging for a while.  It is that lack of hope.  It is realising that this isn’t something for six months, or even a few years. This is impossible to cure (and it’s not just WebMD who say this).

Regardless of whether we’re talking physical or mental illness, who of us doesn’t want to be able to have a realistic hope for the future?  No matter what it is.  Just something that is better than where we are today?  Maybe it’s being able to get out of the house without panic, or maybe working part-time?  Maybe pursuing an interest beyond ourselves?  Maybe achieving some long held goals?

Maybe all of that is too hard right now, and that’s ok.  I spent many years not being able to see beyond each day.  But is it fair to say that we want something better than today?

That’s all I want  Something better than today.  For the past week I have had a rough run with fibro symptoms.  I’ve spent most of my time in bed, with sleep (if I could get it) the only escape from pain.  I don’t want that for the rest of my life, and that doesn’t seem unreasonable.

Unfortunately that seems to be exactly what my doctor is happy with for me for the rest of my life.  Easy for him to say.  He’s not the one living this life.  I know that means I need to get serious about finding another doctor, because I want hope.  A doctor who shared my hope for something better than today would be great.  I simply don’t want to spend the rest of my life mostly in bed, and in pain.

I know that particularly with any type of mental illness it is really hard to look ahead.  I get that.  But I also get that when I enrolled at university, I did it because I finally hoped there would be something more than hospital admissions and ER visits.  And there was more, much more.  I eventually got my degree and then got a job (albeit part-time) doing something I loved.  Even if you don’t believe that there is more, just know that someone (that’s me!) can see there is more for you.  Something better than today.

And right now I need to see more for me than ‘impossible to cure‘.  Like my mental illness (BPD), a cure might be more than I can hope for, but I can manage my fibro with the right treatments.  I can live a functional life in spite of it.   And that’s simply all I want to be able to do with fibro too.

To be fair, I know that there are some alternative theorists who say that a cure to fibro is possible, but I have yet to see how.  It seems more to me that there is so much controversy about even the existence of fibro, that a lasting cure seems unlikely right now.  There is still way to much argument of whether it is ‘real‘ or ‘all in the head‘ (which for the record, I believe it is both.  See my post It’s All In Your Head!).

PS. Please don’t give me sympathy.  I don’t need it, and it will only make me cry.  Many of us bear burdens of pain (just different types of pain). I am no different than you, just bearing a, perhaps, different load. What I need right now is practical hope that this can be different.  WIthout that, I’m struggling.  Without that, I admit that I can’t see the point.

And yes, a few days ago I did say I was taking a break.  Maybe I still am, but this just needed to be said.  Why?  I don’t know. I’m just going with it.

“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.

When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.” 

― Alison Lurie, The Last Resort

An Anniversary I’m Not Celebrating

Twenty years ago this weekend, I dived off the platform into the murky waters of mental illness.  Twenty years!  It does seem like a long time ago, but twenty years?  That is a good chunk of my life down in those muddy waters, trying to hold my breath and not drown.  I celebrate that I didn’t drown, but twenty years?

I had won a weekend holiday in Queenstown (a tourist trap for kiwis and plenty of overseas tourists).  My boyfriend, D and I chose this particular weekend to take the trip because it had been my birthday during the past week, we had just got engaged the weekend before, and we both needed a break.  Over the past couple of months I had Glandular Fever (mononucleosis) and was still feeling pretty fatigued.  A weekend away (from Auckland where we were living then) was just what was needed.

The weekend started okay.  We flew to Queenstown and picked up a rental car.  We were feeling pretty lucky to have won this weekend because money was tight and it’s not something we could have afforded.  I had been off work for about six weeks and was only back part-time.

But life was pretty good.  I was a career girl in a job I loved, I had shifted to Auckland the year before and so had finally escaped the stalkers who had plagued my life.  I had good friends.  I owned my own home,  I was a committed Christian who was at church twice on Sundays, and most of all I loved the lifestyle I had.  But wow!  How life can change?  Twenty years on and I am a completely different person.

Back to our weekend away, I wasn’t really aware of anything but at one point D said to me that I had been really negative all day.  It wasn’t about anything specific, just everything.  I hadn’t realised but now that he mentioned it, I started to realise he was right.  So I stopped talking.  That seemed like the best way (at the time) to fix the problem but by the end of the day everything had got too much and we were back in our hotel room, me bawling on the bed.  For hours.  Once I started, I couldn’t stop.

D had no idea what was wrong, or even why I was crying.  Neither did I, really.  I just knew my life had crashed somehow and I couldn’t stop crying.  The glass in the mirror had shattered, and somehow I knew I couldn’t put it back together again.

And so began 20 years of mental illness.  It seemed my mental health had got on a plane to Queenstown, but didn’t come back.  First, I was diagnosed with Depression and Post Traumatic Stress Disorder (PTSD).  Next, those two triggered Anorexia and that became a whole different ball game as not only my mental health but my physical health was under fire.  Much later came the diagnosis of Borderline Personality Disorder (BPD) and Adult Attachment Disorder.  It seemed like once it started, there was no stopping it.

As I said earlier, up until that weekend it seemed like I had life together.  Sure, bad things had happened in my life but I had held myself together and survived.  The thought that I would dive into the mental illness pond was the furthest thing from my mind.  It wasn’t anything anyone else seemed to expect for me either. My parents had only recently given me a birthday card which said “for the woman who has everything“.  I never thought of myself that way, but life was pretty good at that stage.  I assumed it would just go on that way.

But life has a way of surprising us, doesn’t it?  Really, I had a lot of things go wrong in my life and my strategy was to hold it all together, rather than deal with it.  The years of stalking had a price to pay, and now I know that when the trauma ends, that is the time the effects of it really hit.  Until then you’re just fighting for survival.  But I could finally relax.  Perhaps it was finally safe to let go and cry. But then I couldn’t stop.

I remember in the early days reading a book about a woman who had depression for two years.  I was appalled by the idea of two years of this hell.  I couldn’t consider I might be depressed for months, let alone years.

Contrary to popular opinion I don’t believe that everything happens for a reason.  I also don’t believe that, as I was taught as a child, I should be thankful for all things.  What I do believe though is that I can learn from all things.  I have learnt many things across that twenty years.  I have learnt that kindness and compassion extend to all people, regardless of who or what they are.

I’ve learnt a lot of things I’d rather not have learnt too.  But that’s how life goes.  We don’t always get to pick and choose.  I’ve seen a lot of things I’d rather not have seen.  I wouldn’t choose this route.  I would never choose mental illness over health and life, but having gone down that route I choose to let it be.

I finish with this thought.  For a (very) long time I wished for my life back.  I wished for a return to the ‘old days’.  I know that’s not going to happen now.  This is my life as it is.  That old life is gone and wouldn’t be relevant to me now anyway.  I went to Queenstown as one person, and came back as another.  If twenty years of mental illness has taught me one thing it’s to live one day at a time and accept what I have.  I won’t always have the answers to why, but I can just let it be.

“An infinite question is often destroyed by finite answers…To define everything is to annihilate much that gives us laughter and joy…If I try self consciously to become a person, I will never be one. The most real people, those who are able to forget their selfish selves, who have true compassion, are usually the most distinct individuals” 

― Madeleine L’Engle, A Circle of Quiet