Ten Years Later, And I Have My Answer

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

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

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

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

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

Lithium does this for me:

it keeps me alive and

out of prison!

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

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

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

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

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

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

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

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

One final word

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

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

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

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

―    David Lovelace,    Scattershot: My Bipolar Family

This Is Getting On My Nerves

Or an alternative title which I could turn into a song?

‘There’s Coke In My Veins’

How does that sound for a song title?  Lyrics have never really been my thing, but I had this brainwave so decided to share it with you.  Let me be clear though, that I am not talking cocaine here,  I mean coke, as in coca-cola.

Image credit: Mike Gonzalez (TheCoffee) Wikipedia.com

Right now my fibromyalgia is getting on my nerves, both literally and figuratively.  This past week I have started tingling (according to the texts) but I prefer fizzing.  I feel like someone came along in the middle of the night (Sunday night, I think) and switched my blood for coke.  It’s not just my hands and feet either.  It’s every where.  And I have this weird, what seems like a permanent state of feeling like all my hairs are standing up on end.  I am in a permanent state of shock.

I know using the word permanent is probably exaggerating, but on day five it feels like it has turned permanent, and I don’t like it.  Actually it’s very… uncomfortable and weird.

I learnt quickly that fibro is one of those conditions that is different for each person.  For me, it seems that nerve pain, fatigue and brain fog are perhaps the worst of the following list of symptoms.  Don’t be mistaken though, and think this is the complete list.  I’m sure most fibro sufferers could identify other symptoms that exist for them.

Here’s some of the symptoms of fibro:

  • Chronic muscle pain, muscle spasms or tightness
  • Moderate or severe fatigue and decreased energy
  • Insomnia or waking up feeling just as tired as when you went to sleep
  • Stiffness upon waking or after staying in one position for too long
  • Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”)
  • Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
  • Tension or migraine headaches
  • Jaw and facial tenderness
  • Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
  • Feeling anxious or depressed
  • Numbness or tingling in the face, arms, hands, legs, or feet
  • Increase in urinary urgency or frequency (irritable bladder)
  • Reduced tolerance for exercise and muscle pain after exercise
  • A feeling of swelling (without actual swelling) in the hands and feet (actually I get this in my knees)

Fibromyalgia Health Center, Web, MD

As you can probably tell, it’s not fun.  As I said, one of the biggest struggles for me is nerve pain, which doesn’t even really show up on this list.  Regularly I feel like I have electricity pulsing through my body, some times burning as it goes, now tingling as it goes.  (My brother, who is lucky I love him dearly, kindly suggested I remove my fingers from the light socket).  The weird thing about nerve pain for me is that it doesn’t physically prevent me from movement, and actually sometimes movement is best because it masks the pain.  But then fatigue means that constant movement isn’t such a good idea, let alone a possibility.  I’ve learnt that the hard way.

This week has been a write-off as a result.  The fatigue and brain fog, added to feeling like a bottle of coke, leave writing too much for me.  My brain just won’t work how I want it to, and without the aid of spell-check you’d be unable to read this.  Reading other bloggers posts has also been pretty much out of the question because I just can’t focus.  I try, and find myself either distracted, or simply going back and forth over the same line.

So if you’ve missed my posts this week, this is my excuse. And if you think I’ve missed that special post you wrote and thought was a major contender for ‘fresh pressed’?  I haven’t missed it.  I will get there.  I have an enormous pile of posts to read.  It seems to be growing by the hour, and probably serves me right for developing an addiction to the word ‘follow’.  Meanwhile, fibro wins.  Damn it!

PS.  No sympathy required.  We all have our trials and battles, This one is simply one of mine.  Just send dark chocolate.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”   

―    Haruki Murakami

When Things Go Viral

“He who passively accepts evil is as much involved in it as he who helps to perpetrate it. He who accepts evil without protesting against it is really cooperating with it.”

― Martin Luther King Jr.

Last week in my post What Battles To Fight?, I was frustrated by having too many battles I wanted to fight.  Too many things I disagreed with strongly.  I knew I couldn’t tackle every battle, and if I did, it simply wouldn’t be any good for both my mental or physical health.  It was nice to know (from the comments that followed) that I wasn’t alone in this frustration.  I’m suspecting that perhaps there is a certain type of person (of which I haven’t yet defined) who just can’t let go of the need to try to make things better in this world.

One of the battles I mentioned in that post was about how news media, social media and some mental health organisations were handling the news  of a suspected suicide of a young woman who had a pretty hard time at the hands of others before she apparently took her own life.  At the time, I made a comment on a blog post hosted by a mental health site but elected not to get involved any further.  As time as gone on though, I have got more concerned by this situation.

I’m purposely not giving specifics here because I refuse to add to the mayhem.  I’m sorry if you find that frustrating.  I guess the issue got personal for me yesterday and I came away from that really worried about the consequences of when things ‘go viral’ on this wonderful invention called the internet.

Yesterday I was asked by another young woman (through social media) to view a video she had made and placed on You Tube.  I was reluctant, but agreed to watch it simply because I was concerned about what message others who I have contact with, might end up watching and possibly be disturbed as a result of viewing.

It was disturbing.  It covered topics of bullying, mental illness and self harm.  It was in a very similar style to the original video I had been concerned about last week.  The video, that I understand has now been freely viewed by more than six million viewers.  After watching the new video I had the opportunity to talk briefly to the young woman who made it, and asked me to watch it.  After setting some boundaries (based on the role that I was in) I asked her what she was hoping to achieve by making and posting the video.  Her reply?

“IDK”

“I don’t know”  Actually as our conversation continued, I became more convinced that she did know, but she just didn’t expect anyone to question her intentions.  I can only guess at her intentions now, because shortly after she ended the conversation (apparently I took the matter too seriously), and she was gone.

I certainly hope that this doesn’t end the way of the original video,  (Please God, no!) which she had pretty much copied, although added that she herself was a bully and individually named some people who she considered were also bullies.   In the time we spoke, I had enough information to be concerned, but not enough to warrant trying to get some professional help for her.  I also didn’t have the time as she elected to end the conversation.  But this much I know… she needs professional help and I hope she reaches out and gets it.

At that point my responsibility had to turn to others who also witnessed my exchange with her (including some who also watched the video and made same connection I did).  Maybe this was all about trying to seek attention?  I don’t know.  If it was, then she got some attention, but perhaps not quite what she was hoping for.

My concern is about how many other hurting people are seeking attention, or crying out in a similar way to the first person?  How many millions watched that first video (perhaps after being encouraged to watch it by media organisations) and assumed this was the way to get noticed, get attention, make someone hear that they too are struggling.  How many chose to self injure, and then show evidence of their injuries because perhaps they got that idea from what they saw?  How many choose to act out suicidal thoughts because they think that is the only way to be noticed, and to end the pain they are in?

When I questioned the author of the original post (from where I had got the original video link), why she had provided her readers with the link to that original video I got the reply that everyone else was doing it so why shouldn’t she.  A further comment to another reader also suggested that young people will see harmful stuff everyday, so somehow it didn’t matter if she encouraged viewing.   She also added that it was the wish of the mother of the dead young woman, that people see and learn about the realities of bullying.

I have no desire to hide from the reality of bullying, mental illness or self harm.  Actually I think it is important that these issues be discussed openly so that we avoid stigma, and also so that the secrets that some people carry with them, do not have to have the harsh consequences of shame.

That said, how these issues are discussed is crucially important in taking care of the people who view.  The mother of the dead woman apparently wanted other parents to watch the video her daughter had made because other parents need to be aware of the risks of bullying.  I totally accept that was her wish, and I don’t mean to criticise that at all.   The problem I have is that those parents are not the only people who watch such videos.

It would be interesting to view some statistics of those who watched the original video.  How old were they?  What was their reason for watching?  Did they have some personal issues of their own which were reflected in the video?  And perhaps most  important to me, did they have somewhere safe they could talk about what they saw?

There are consequences when things go viral.  Both positive and negative.  Yes, we get a message ‘out there’ about the need to stamp out bullying, but we also get already hurting people, hurting more and probably having nowhere to turn to get help and support.  On what do I base my opinion?  That I am fairly sure that had I watched that video five years ago when I was trapped in  self harm behaviour and addiction, I would probably have felt the need to harm myself as a response to what I saw.  Thankfully that is not my reality today, but I suspect for many it would be.

I read an interesting blog post on this subject today. The writer took a different approach to mine, but s/he made a good point:

“We cannot kill the current state of the internet to protect people, because keeping the internet open and free is a great means to protect the very same people.” (1.)

The internet serves a good purpose in providing an access to support for many people.  There is no doubt about that in my mind.  But it can also be an access to triggering and emotionally disturbing material for those same people.

All I would like to see is that both sides of the coin are considered equally.  Personally, I would not have left the original video on You Tube.  It could be useful in some monitored setting, but the potential harm is too much to risk, in my view.  Immediately on viewing it I could recognise that there were potential triggers for people regarding suicide, bullying and self harm.  I am sure it could have been edited to eliminate some of these triggers, but still keey the message her mother wanted.  It could also have had help-line contact details at the end, so that people needing help could access it.

Yes, I am an idealist.  Ideally, this young woman who died would have been spared the pain she went through.  Ideally, she would still be alive today.  Ideally, others would not be traumatised by watching her video.  Ideally, viewers would have got the message that young woman’s mother wanted to get across.  Ideally, the other young woman, with whom I had contact yesterday, would also have found another way to feel loved and important.  Ideally she won’t go on to self harm further, and she will get help.

I know we don’t live in an ideal world, but I am convinced that we can take more care.  When things go viral, we need to consider all the consequences.

Image credit: Wikipedia.com

“When  written in Chinese, the word ‘crisis’ is composed of two characters. One  represents danger and the other represents opportunity.”

 – John F. Kennedy

“I Am Worth Loving Too” Challenge

My friend Kevin from Voices of Glass has inspired his fellow bloggers with another Challenge, and while I usually choose to avoid the Challenge suggestions that float around the blogosphere, this one appealed to me.

Remember cassette tapes, and recording your own mix of favourites?  True love was about making a tape for your beloved.  Ahhhh!

But back to reality, Kevin suggests that it time to look at how we see and treat ourselves?  How do we treat ourselves  especially in our times of need?   Actually I completely agree with him.  After years of ignoring the whole idea of looking after myself, because I thought stupidly thought it was selfish and vain, I’m learning fast that actually I deserve some love and care from me too.  So here’s how it works (straight from Kevin’s blog):

“Get a pen and paper (or pull up a blank word file on your computer) and compile a lit of songs which remind you how loved you are and/or remind you that you are worth loving.

They should be songs that mean something to you and my advice is to aim for about 10-12 songs.

Once you have written your list or lists set about finding and obtaining those songs.

Once you have them all, burn yourself a CD or set up a playlist on your music player, that you can use any time you are feeling down or lacking in self-worth and need some encouragement.

And how about sharing the fact that you have taken up this challenge on your blog and sharing your list with others.  You can even share why certain songs mean so much to you.  Oh and feel free to link back here so that I can check out your songs too.”

Great idea.  I love music and while I used to participate, via voice and flute, now I just listen.  Music means a lot to me because it often expresses things that I can’t find the words to say.  While I love music I admit I’m not someone who has music on all the time as background.  It just becomes noise to me, and being ‘slightly challenged’ in the hearing department, it actually prevents me from hearing other things going on.  So when I have music on, it is to listen to.

I’ve made my playlist (see below).  I couldn’t quite decide when it came to narrowing it down, so I’ve exceeded Kevin’s suggested limit by going to 14.  But hey, rules were made to be broken. :-D

How have I chosen these songs?  Well, they’re not my favourites, although my current favourite is included (I’m not disclosing which it is, but feel free to take a guess).  For lots of different reasons, including the music, the words, the memories, the feel, the people the song reminds me of,  and my mood at the time I was putting it together…  these songs are my ‘feel good’ songs.  They remind me it’s actually okay to feel good, and head me in that direction.  Simply put, listening to them is a way to look after me.

If you read A Late Entry… Music (Passions Profile Challenge #3) you’ll know that music is one of the things I am passionate about.  I have a wide range of tastes, and this list doesn’t completely capture the diversity of my tastes.  As I’ve said before I love music from my country so  there are a couple of kiwi musicians in there on the list.  Have a listen.  I hope they leave you feeling good too.

The magic 14 are:

Louis Armstrong – What a wonderful world

Marc Cohn – Walking In Memphis

Van Morrison – These Are The Days

Celtic Woman – Pie Jesu

Tiki Taane – Over The Rainbow

Finn Brothers – Nothing Wrong With You

John Lennon – Woman

Eric Clapton – You Look Wonderful Tonight

Cher – You Haven’t Seen The Last Of Me By

Lou Reed – Perfect Day

Tiki Taane  – Always On My Mind

Joshua Kadison – Jessie

Pink Floyd – Wish You Were Here

Aaron Neville – Ave Maria

“Music expresses that which cannot be said and on which it is impossible to be silent.”

― Victor Hugo

“And those who were seen dancing were thought to be insane by those who could not hear the music.” 

―    Friedrich Nietzsche

‘Pink & Sparkly’ From Aunty Cate

Beautiful! But it’s as pink as I do.
Image credit: Mary/flickr.com/photos/virgomerry/402534971/

I love pink tulips and you’ll be my friend for life if you ever give me some, but actually I simply look ridiculous if I try to do ‘pink and sparkly’.  Be under no illusions.  I don’t do ‘pink and sparkly’.  Ever.

I learnt that lesson back in the 1980’s when we went through the pink and grey fashion phase.  In an attempt at the time to be the 1980’s equivalent of hip, young and cool I had a pink and grey outfit for work.  I wore it regularly but never looked anything but pale, washed out and completely ridiculous.  Eventually I learnt my lesson that simply because something is fashion, doesn’t mean I should adopt it.

Pink just isn’t me.  I don’t suit the colour (I also learnt in the 80’s that I’m more autumn colouring) and it really just doesn’t suit my personality either.  As for sparkly?  I can’t think of anything more ridiculous than me with diamantes, glitter, fairy dust and the like.  Who am I trying to kid?  Sometimes it takes a while, but  I always think it is important to accept who I am, and move on.

That said, never fear.   I do have a ‘pink and sparkly’ outlet.  It comes in the form of nieces, and coming up soon two nieces have birthdays, so I get my chance.  The fact that their parents might not do ‘pink and sparkly’ either, gives me more incentive to make sure these two girls get ‘pink and sparkly’.  Of course it helps that the older of the two (who will be turning six this year) has always been very out and proud about her love of all things ‘pink and sparkly’.  In recent years I have made sure that both Christmas and birthdays were marked appropriately, regardless of her parents distaste of such things.

This year (and to my friends who know her, please don’t spoil the surprise) I have got her a pink and sparkly duvet cover for her bed.  She will love it, even if her parents don’t appreciate the hand-wash label.  Look at it this way.  It means her parents don’t have to indulge her pink and sparkly side because they know full well that her aunty will.  That is one of the wonders of being an aunt.

The second niece birthday approaching is just two weeks later, with the centre of attention being L (who I have talked about often) who will be turning two.  The other day when I was visiting she was taking great interest in the rings I was wearing, so I’m sensing ‘pink and sparkly’ will be in order for her too.  At least this time, I know her parents won’t grimace and be thinking “How dare Aunty Cate!”.  Between now and then I’m going to need to do some serious shopping.

I have a third niece, the older sister of the six year old.  She has never done ‘pink and sparkly’ so don’t worry, I don’t inflict it on her.  She is into doing craft activities and so this year she got a craft project to work on, which she apparently loved.  Her parents readily accept that craft is also beyond them, but at least I know there is a perfectly capable, and crafty nanny on the scene to help.  And in case you’re wondering so far, none of the boys are showing any interest in pink and sparkly, so yes, I am able to adapt my gifts to their taste.  Actually the boys are always much more interested in chocolate.

That’s the thing about being an aunt, to boys or girls.  I get to give them things they would like, rather than perhaps what they should have.  For all parents worrying right now, I promise that I try to keep their parents’ views in mind but I guess I take the ‘all care and no responsibility’ line. Okay, so ‘no responsibility’ isn’t quite right.  If they are in my care then yes, I am responsible. Mostly what governs my attitude towards my six nieces and nephews is love.

I don’t have children of my own, but these kids are very much connected to my flesh and blood.  They are my brothers’ children, and it’s a place I can share some love and affection. Right now they’re also all at good ages to be able to accept and appreciate it (in their own ways).  Unfortunately three of them don’t live nearby and so I don’t see them or know them as well as I like, but I’d still do anything for them.

It’s funny because I know people who hate the term aunt or uncle and don’t want to be known as one.  I love it.  My own aunts and uncles were never close to me, again because of geographical distance, but they are still important to me, and I respect them each greatly.  When I use the term aunt or uncle to describe their relationship to me I do so with honour.  I am proud to call them by that term.  It’s the same with being an aunt.  Actually the first people to call me Cate (instead of Catherine) were my eldest nephews.  Aunty Cate was a whole lot easier for them to learn to say than Aunty Catherine.  It stuck.  The ‘Cate’ and the ‘Aunty’.

Like everyone, I have family issues too.  None of us have the perfect family and we’ve probably all been hurt by them at times.  For me, I think it hurts so much sometimes because family matters.  Even if I wanted to, I can’t walk away from them because we have a connection of blood that binds me to them.  I know I am fortunate to not have had the problems with family that some experience.  It simply reminds me to be thankful for what I’ve got.

Going back to ‘pink and sparkly’, it’s not who I am… and that’s fine.  But I love it in the right place, and at the right time.  And much as families are hard work, when it comes down to it I love them (even the adults). :-)

“Families are messy. Immortal families are eternally messy. Sometimes the best we can do is to remind each other that we’re related for better or for worse…and try to keep the maiming and killing to a minimum.”

―    Rick Riordan,    The Sea of Monsters

“No one fights dirtier or more brutally than blood; only family knows it’s own weaknesses, the exact placement of the heart. The tragedy is that one can still live with the force of hatred, feel infuriated that once you are born to another, that kinship lasts through life and death, immutable, unchanging, no matter how great the misdeed or betrayal. Blood cannot be denied, and perhaps that’s why we fight tooth and claw, because we cannot—being only human—put asunder what God has joined together.”  

 –    Whitney Otto,    How to Make an American Quilt

What Battles To Fight?

Image credit: FB/Women’s Tea Time

Is it just me?  Or do other people get swamped by how many battles there are to fight?

I admit, before my family tell you, I am a stubborn, opinionated ‘dog with a bone’ at times.  I’m passionate (as you’ll know if you followed my Passions Profile Challenge a while back) and I feel strongly when I see things that I don’t think are right or fair.  When I see people being treated badly I want to jump up and down and tell the whole world that it is wrong.

The thing is though that I know I can’t fight every battle I see.  It’s actually not good for my health, mental or physical.  And if I ranted here about absolutely every battle, I suspect I’d lose readers pretty quickly.  If I fight every battle then I end up just being ignored because “she’s just at it again“.  I am probably already gaining myself a reputation that I’d really rather not have.  I dont’ want the ‘crazy’ label.  I want people to say “she makes a good point“.

Yesterday was one of those days where I was bombarded with things on social media and news sites that I just ‘had’ to fight back.  Thankfully I was a little wise and saw the pattern.  I did fight back on one issue, but I stepped away and breathed instead on the rest.  Except I was still frustrated because people were being treated badly, portrayed badly, or money was being wasted on things that just don’t seem right.  By the end of the day I was exhausted simply from having it all in my head.

Here’s a list of some of the things going around, and around in my head yesterday:

1.  Fixing children’s paddling pools gets priority in earthquake recovery in my city over people getting homes to live in.

2. One young person’s suicide is highlighted (irresponsibly in my view) by the media and mental health organisations over, and over again taking the focus away from what really matters.  She’s not the only one.  How do we handle this responsibly, with thought given to others who might read but are suffering themselves from bullying, self harm, depression and suicidal thoughts?

3.  A person labelling another as ‘sick and twisted’ (among other things) because they didn’t like their actions.  Both people are likely to have mental illnesses.

4.  Churches prioritise spending millions of dollars on ornate buildings to ‘worship God’ when (I think) they should be prioritising expenditure on feeding the poor and hungry.  This applies to governments too.

5.  A young person wants to give up the fight for her life (again) because she can’t get adequate help from mental health services.

6.  Fancy sports stadiums are more important than people who need food, shelter, safety.

I won’t go on because I’m sure you’re getting the idea.  Issues of earthquake recovery in my city leave me more, and more disturbed because individual people’s needs are not important.  Maybe I’m a biased on that partly because my needs don’t get a look in on that front either, but there are so many people much worse off than me.

And mental illness (and yes, I’m choosing to use the term mental illness rather than mental health purposely because this is making people sick… or dead), especially concerning stigma and the media’s portrayal of it just sickens me.

But for the sake of my own health I have to draw the line.  I can’t fight every battle, but I want to.  I feel strongly about all these things, and what I hate is that from each of these issues and more,  there are individuals suffering.

Today my fibromyalgia has flared up again.  Certainly yesterday was an dificult day because it had been my Dad’s birthday, but this is what fibro does to me.  The emotional stress inside converts to physical pain, brain fog and fatigue.  I know myself well enough to know that probably both things contributed to today’s reality.

So I’m wondering?  Do other people struggle like this?  How do you choose wisely what battles to fight?  How do you rest easy if you choose not to fight a battle?

“Unless someone like you cares a whole awful lot, Nothing is going to get better. It’s not.”

~Dr. Seuss, The Lorax

“He who passively accepts evil is as much involved in it as he who helps to perpetrate it. He who accepts evil without protesting against it is really cooperating with it.”

― Martin Luther King Jr.

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Perspective

Image courtesy of [Rawich] / FreeDigitalPhotos.net 

 The more I age, the more relative age becomes.  Today would have been Dad’s 78th birthday.  Happy Birthday Dad.

I remember when I was 12, my maternal grandfather turned 78, and I thought that was really impressive.  Wow!  Granddad (and he always insisted it was spelt that way) was 78.  That was so old.  I don’t know why 78 stuck in my mind as being an impressive age to live to, and actually he lived until just short of his 90th birthday.

Granddad was a kind-hearted, but outwardly seeming austere man.  Well that’s how he seemed to me and that might have been that because of geographical distance I didn’t see him that often.  I was a little scared of him.  He wasn’t scary.  It’s just that even at my young age I somehow thought I wouldn’t be good enough for him.  I find that sad now because I think I missed out on a wonderful person, simply by not being confident to be myself around him when I had that opportunity.

There are three unrelated things that stick out in my mind about Granddad.  Firstly, he smoked a pipe.  The little girl, who would eventually take up smoking cigarettes herself, loved that he smoked a pipe.  I think it suggested to me a little bit of rebellion from the ‘nice’, Christian lifestyle led by most of the family.  I loved the smell.  I loved watching him prepare, and smoke his pipe.  Actually it seemed like so much work for a few moments of smoke, but it was Granddad.  He always has his pipe and tobacco.

The plaque reads: “Presented on the occasion of the running of the last electric tram in Christchurch. 11 Sept 1954″ (exactly 11 years before I was born).

My grandfather was a Chartered Accountant by profession, and through that he was on the Christchurch Transport Board when the electric trams in the city were finally stopped (and replaced by buses).  He was given one of two old tram bells in 1954, as a commemoration of this event. As a child, we would stay at his house when visiting Christchurch on holiday and it was tradition that the tram bell would be rung to signal meal times.  It was so exciting to be allowed to ring the bell.  I loved it.

When Granddad died in 1989 he left me the tram bell, because he knew how much I loved it. It remains one of my most treasured possessions.  To anyone else it is probably just an old bell stuck to a bit of oak, but to me it reminds me every day of the great man who I was lucky to have in my life.  Actually it hangs on the wall just above my computer.

The third thing that comes to mind when I think of Granddad is what he taught me about love.  My grandmother, his wife, had Alzheimer’s Disease .  In time, caring for her was too much for Granddad, and she was moved to a geriatric hospital.  For 13 years, my grandfather drove across the city to go and visit her every day.  Eventually she no longer recognised people, and there was no conversation was possible.  Granddad always suspected she knew it was him, when he visited, but there was no certainty of that, and really not much in his visits for him.  The woman he had known was gone.  But he kept going anyway.  His day was structured around going to visit, simply to be there with her.

For my young mind I admit I wondered why he bothered.  It appeared that she wouldn’t know whether he had been there or not.  What could possibly be the point?  With age I have learnt that love was the point.  He never stopped loving her, and he continues to be an inspiration to me in loving through the hard times.

Both my grandparents died a long time ago now.  A few years ago I became friends with someone who was a carer in the hospital where my grandmother had lived.  One day we worked out that she had actually cared for my grandmother regularly.  Again it was years ago, but the thing my friend remembered was how much my grandfather loved my grandmother, and how he came to visit anyway, regardless of his visit not even being acknowledged.

At 13, my family came to Christchurch for a gathering to celebrate my grandparents 50th wedding anniversary.  Wow!  50 years!  My grandmother was living in the hospital by then, and she certainly had little idea of who I, or any of her grandchildren, were but she came out to their home for the day.

That was actually one of my final memories of my grandmother.  Granddad wanted his grandchildren to remember her as the woman she had been when she was healthy, and not the shell she deteriorated to, so while she lived for another 12 or so years, he didn’t want us to visit her in the hospital.  I visited her a few times after that but largely we respected his wishes and didn’t go.  I still am not sure whether I agree with what he wanted, but I respect it, and know that now, most of my memories of her are of the very capable, good woman she had been.

As a teenager all this was almost a bit much for my mind.  I didn’t really understand the extent of my grandfather’s love, let alone what had happened to the grandmother I had previously known.  Today, my Dad would have been that ripe old age of 78, and I realise that I am well over half way to 78 myself.  Suddenly 78 just doesn’t seem that old anymore.  Of course I still think I’m 28, like I’m stuck at that age permanently, but that’s okay.

There’s not much point to regret, but I do wish that I’d had a closer relationship with Granddad.  I wish I has been able to tell him how much I loved, and respected him, and how much he taught me.   When I think about what love means, I always think of Granddad.  He showed me by his life, what love was about.

I was fortunate that I had a good relationship with my Dad, and apart from some hard times at the time of his death, he knew how much he meant to me.  But one thing I have learnt is to say the things I need to say to the people I love when I have the time, because we never know if that time will come again.

“There is a certain part of all of us that lives outside of time. Perhaps we become aware of our age only at exceptional moments and most of the time we are ageless.” 

―    Milan Kundera

How Do I Love A Human?

A few weeks ago I read a really interesting blog post, How to love someone with a mental illness.  It’s well worth popping over to have a read.  But falling out of my mouth, at the time I shared it on Facebook, was “love them the same way you would love someone who didn’t have a mental illness“.  Isn’t it obvious?  Well, maybe not.

First let me be clear that I’m not at all critical of the post.  I wouldn’t be recommending you read it if I was.  Actually I think she describes very well some of the difficulties of loving someone with a mental illness.  I guess though what concerns me is why is loving us any different?

The writer says of her husband something that my ex-husband experienced too:

“He has watched the women he fell in love with, the happy, go lucky, larger than life lover drop into a deep depressive
hole with no escape.”

Many of us have been that person who fell into the deep hole of mental illness, but many of us too, have been the one to watch helpless as the person we love and thought we knew, almost disappear before our eyes.  The person we knew appears to have vanished, and we are left wondering just what is real, what can we do to help this, and will we get the person we knew back? 

Maybe I’ve been fortunate to have been on both sides of the fence.  It at least gives me some perspective on what is happening, although for each person the experience of mental illness is different, so just because I have been through depression doesn’t mean I will completely understand someone else’s depression.

I can vividly remember when I was depressed, fighting for my life, and was still in my marriage; I would regularly be told by ‘well meaning’ (don’t you love that term?) people how lucky I was to have my husband.  They told me that he was so good to me and it was so great that he had stood by me.  I knew I was probably meant to be grateful but it actually just left me feeling angry and belittled.  What I heard them saying was that I was too much, and that I didn’t deserve the love my husband had for me.

Actually it just gave me more ammunition to hate myself (and my husband).  Had I simply become his social project?  Was he simply ‘doing good’, even his duty ,by sticking with poor Cate?  I’m quite sure that’s not what the people were saying, but mental illness has an incredible way of distorting everything and so that is what I heard.  I used it as a way to hurt myself, and my husband.

Mental illness does make the relationship road a very bumpy and potentially heartbreaking one, particularly when it is a life-long issue.  But so do other difficulties in life.

We don’t have the exclusive rights to ‘difficult’.

Other people, with other challenges, can also be ‘difficult’ and can make relationships hard work.

Try loving someone:

♦  with a chronic physical illness.  Throw in on top that it is a so-called ‘invisible illness’ and it is difficult for anyone.  It’s not just the physical symptoms that feature but the emotions surrounding the symptoms, and the lack of hope for recovery.

♦  at the same time as trying to love and care for a disabled child, or an ageing parent.

♦  who works 90 hours a week and just isn’t there.  Maybe they travel for work regularly too, so they’re not even there at the end of the day.

♦  who has a high-profile, public life.  Yes, they probably get paid better for it than you will ever be paid for having a mental illness, but money doesn’t make love any easier.

There are endless scenarios, and I’m not at all taking away the pain of mental illness but at the end of the day, it surely comes down to this.  We are all humans in need of the same thing. Love.

Maybe I’m being simplistic, and I certainly am no expert on love.   I’m more an expert on avoiding love, but now I find myself constantly challenged to think repeatedly about what love means to me.  When I say ‘I love you’, what do I mean by that?  Am I prepared to love the mental illness too?  Am I prepared to love all the challenges (other than mental illness) that this human being puts it front of me?

‘For better or for worse’ or ‘in sickness and in health’ (both in, and outside of marriage) is easy to say but not so easy to do, especially when the person we love is doing un-loveable things and maybe hurting us.

A while ago I wrote about my view of What Love Isn’t; about the difference between what I had been taught about love when I was growing up, and what I found love was not to be.  It was quite a difference, and I guess that’s why I have been an expert in the past at avoiding love.

I don’t want to dare to attempt to define love, because what I am sure about is that it is different for each one of us, dependent on so many factors.  But I do find myself always coming back to what I learnt as a child, while I continue to develop my own definition.

Image credit: Facebook – PositiveMed

I have to get past thinking that it is just a nice passage from the Bible  that I learnt as a child, and it’s just words.  For me, I have to break each part down into what that means in loving the person I do.  I have to make a conscious choice to do each part.  I don’t pretend that it’s easy to do, but it’s what I’m working on right now.  And actually, it helps me understand and know exactly what I mean when I say ‘I love you’.

What occurs to me though, is that if I take this definition and use it as a guide to how I love someone, I also have to use it in how I love myself.  Regardless of the situation, I deserve the same love from myself as I offer to someone else.  I have my own needs and in honouring myself, I have to try to make sure my needs are met.  That’s not always easy when the other person is consumed by mental illness, or any other ongoing challenge.  I don’t have the easy answer but I know I have to take care of myself.  It’s a ‘put your own oxygen mask on first’ scenario.  If I don’t ensure I am getting adequate oxygen there is no way I can ensure the person I love gets the necesssary oxygen too.

Loving someone with a mental illness is not easy, but then loving anyone is not easy.  It is even more difficult when we have our own issues and needs, which can’t always be met.  But again, that can be the case in relationships regardless of the presence of mental illness.  So how do I love a person with a mental illness?  Exactly the same way as I would love any other human.

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”  

 –  Lao Tzu

“Those who love you are not fooled by mistakes you have made or dark images you hold about yourself. They remember your beauty when you feel ugly…your wholeness when you are broken…your innocence when you feel guilty…and your purpose when you are confused.”

- African saying

Meet Duncan… A Black Dog

To bring a close to my posts related to Mental Health Awareness Week, I’m taking a different approach.  I really hope that as a result of the awareness challenge, that someone can feel more supported my their friends and family as they fight for mental health.  I hope that someone has a better understanding of the challenges involved in achieving mental health for some of us.  I hope people are talking more about mental health and mental illness.  I hope people are more prepared to help us fight stigma.  But meantime, I am a little concerned.  For the black dogs of our world.

Many of us know how hard it is to be stuck with labels but imagine how hard it must be to be seen as a representation of something as awful and destructive as Depression.  Yes, I’m talking about the poor black dog.

Winston Churchill is the one who made famous the connection between a black dog and depression.  He described his depression as a black dog.  But actually the connection started back as early as Greek and Roman mythology, where a black dog was symbolic of the for-telling of death.  I’m not going to bore you with a complete history lesson, except to say that there is more reading below if you are interested.

This week, in collaboration with the World Health Organisation (WHO) to mark World Mental Health Day, writer and illustrator Matthew Johnstone (originally a kiwi of course) told the story on You Tube of overcoming the “black dog of depression”, adapted from his book, Living With a Black Dog.  This four minute clip has been flying around social media, but if you haven’t yet seen it, have a look here:

It’s pretty good isn’t it?  And I think what Matthew Johnstone and WHO have done is excellent in promoting awareness of Depression.  But to tell you the truth, I’m slightly concerned about the reputation black dogs are getting.  The rate we’re going they will be in as much danger as Big Bird.  To assist me in my attempt to restore their reputation, I have the help of Duncan, my six month old canine nephew.

As you can no doubt see, Duncan is a black dog but I can assure you that he is not depressed, nor is he adding to anyone’s depression.  Duncan is an over-grown, exuberant puppy.  He’s very enthusiastic, although not too good with commands yet.  Thankfully I had the assistance of one of my nephews in getting Duncan to stay still for the photo shoot.  The only thing about Duncan that is anywhere near Depression is that he gets lonely when the family are off to work and school.  Lonely yes, but not depressed.  There is a huge difference.  As soon as anyone comes into view or even sniffing distance, Duncan is back to his cheerful self.

I accept this is a bit of a silly post, but it does concern me that as we spread the word about Depression awareness, we aren’t painting a good picture of black dogs as a whole.  Matthew Johnstone’s book is an excellent description of Depression, and for that reason I am in total favour of it.  But is it fair on the real black dogs of the world?  It’s one thing to use a pink ribbon, or a lime green one for that matter.  But a black dog?  I certainly wouldn’t like it if I were a black dog.

In attempting to demolish stigma of mental illness, and in particular Depression, I wonder if we might be worsening stigma against black dogs?  Duncan is not happy ( yes, he did tell me) and on behalf of him, I feel I should do something if that is the case.

What do you think?  Am I simply off the planet?  If you have a black dog, what does your dog think about this?

And to finish, some wise words from the man himself.  It is absolutely nothing to do with black dogs, but everything to do with Depression.

“We have not journeyed all this way because we are
made of sugar candy.” 

―    Winston  Churchill

What Are The Scars All About?

CAUTION: This post contains details of self harm (although no images) which may be disturbing to some readers.  Please take care of yourself in reading.

The sad truth for many.

“Everywhere Peter turned, he felt bombarded by misconception about self-harm. Why couldn’t anyone understand what he was going through? It was as if he had awakened to find himself on a different planet, where everyone spoke another language.  It’s not that he didn’t understand that self-harm can be scary and confusing to people who don’t harm themselves.  He did.  But the thing he couldn’t understand was why they couldn’t get beyond their misconceptions and hear what he was saying.  Just last week, he had got into an argument with an ER nurse about why he’d cut himself.  No matter how much he insisted that he had no intention of killing himself, she kept telling the other staff that he’d attempted suicide, and paged the psychiatrist on call to get him hospitalized.  Then, to make matters worse, the next day his father accused him of cutting himself to get attention, even though he’d tried to hide it from everyone.  Why couldn’t anyone understand that he was just trying to relieve some of his pain and cope with his depression?”

 – Kim Gratz & Alexander Chapman, Freedom from Self-Harm (p. 23)

As part of Mental Health Awareness Week I want to talk about self harm, because I believe that it is one of the hardest things for people to understand and get their head around.  It’s not often talked about, especially in polite company, but it’s out there happening, and literally tearing lives apart.

Perhaps one of the biggest issues in terms of it getting understood in the wider community is the shame that people who self harm carry with them.  It’s incredibly hard to talk about openly, especially if you don’t fully understand the reasons why you do it.  It’s fairly hard to avoid judgement, and even if you can, you are so fearful of what reaction you might get, that it’s simply easier to pull down your sleeves and pretend it’s not there.

This is how my self harm began, recorded in my book, Infinite Sadness:

“That night I started scratching my arms raw with my fingernails.  I would scratch and scratch with no feeling of pain.  Eventually I would look down and see the red, raw and bleeding skin.  I would realise what I had done and be horrified.  It wasn’t until I looked down at it that I would finally feel the pain.  The pain was bad, like a friction burn.

 I was disgusted that I could do such a thing to myself.  I had never had an urge to do anything like it, but had now just found myself mutilating my arms.  How?  Why?  Questions flooded my mind.  What was happening to me?  But then how could I answer those questions, for that would entail admitting to another human being the horror of what I had done.

 By the next day, I knew I needed help.  I wondered about the 24 hour Surgery but couldn’t bear the thought of a strange doctor questioning me.  Eventually I decided I would tell my friend Amy.  I knew I had to tell someone, and I thought that through her friendship and her nursing training, she must surely know what I should do. 

 I went to Amy’s house.  We drank coffee.  We talked for an hour and a half, but I couldn’t find the words to pull up my sleeves and show her the damage of the night before.  I left having not told her.  I think that I was so disgusted by what I had done that I just could not bear to admit it.” (p. 106,7)

I was 30 years old, so note that self harm is not just a teenage fad.  It’s serious, and it affects people of all ages.  Scratching my arms was never going to be a suicide attempt.  I simply made one heck of a very painful mess.  As for attention?  That was the last thing on my mind, simply because I was so disgusted by what I had done.

I didn’t even know what self harm was.  I had never seen evidence of it on anyone else, nor had a read anything about it.  It was completely new to me.  And in case you’re wondering, by that time I had spent a lengthy time in a psychiatric hospital, and while I accept that I was very sick at the time so might not have been very observant, I didn’t notice any sign of self harm amongst other patients.  The reason I say that is because a myth that exists is that people ‘learn’ self harm behaviours from watching others.  I didn’t.

Back to the story though.  Several days later I finally plucked up the courage to confess what I had done to both my doctor (a very wise, and trusted General Practitioner) and my psychotherapist.  By that time I had also self harmed again, but still had little idea of why I was doing it, or what I was achieving.

Both these health professionals immediately (and quite separately) told me that my self harm was a good thing.  They were both pleased that I had done it because I was apparently expressing my feelings.  I admit that I had great difficulty up until this point in expressing my feelings.  I simply didn’t have the words, and expressing feelings was not something I  had ever been encouraged to do.  Tearing my arms to shreds was apparently a good thing.  Of course no one, including myself, knew what those feelings were that I had been expressing but that didn’t seem to matter.

Image credit: FB-A Mental Illness Is Hidden

Fast forward 15 years.  In that time I graduated onto more serious, and dangerous methods of self harm.  At times I was self harming while dissociated, and this was the case in the worst damage I ever did to myself.  Now though, I have fought back and found other, healthy ways to express myself (if that was what I was doing), and to reclaim control over my life.

Beyond what was suggested initially I worked out that I self harmed because I felt totally out of control, and if I cut myself then I would somehow bring everything back into control   I also self harmed sometimes because I needed to see physical blood, and experience physical pain to comprehend the emotional pain I was in.  I self harmed sometimes to punish myself.  In this respect, it was more a case of thinking that I didn’t deserve to not harm myself.

While I don’t believe this is the case for all people who self harm, the self harm became a kind of addiction for me.  It was something I needed to do, and I had to break that pattern so that I could recover.

I don’t accept that self harm is ever a good thing, and while I still have a lot of respect for those people who told me it was, I completely disagree with the stance they took.  Recently I read something (which of course I can’t find now) that suggested that self harm shouldn’t be seen as a bad thing.  The article I read suggested that by judging the behaviour of self harm as bad, then we are judging the person as bad.  I don’t agree with this either.  Anything that we do that harms us has to be a bad thing, but that is not a judgement on the person.

I also don’t accept that one form of self harm is better or worse than another.  Yes, some forms are more dangerous, and can have more lasting consequences, but any harm that we do to ourselves has to be bad.

There are a lot of myths relation to self harm, some of which include

  • it is the same as a suicide attempt
  • superficial self harm is fine, and is not dangerous
  • people use self harm behaviours to manipulate others. and to get attention
  • self harm is a female problem
  • if you self harm, you must have a mental illness (no doubt, Borderline Personality Disorder)
  • only teenagers self harm
  • self harm is a copy-cat behaviour
  • if you self harm you are a danger to others
  • self harm is a response to childhood abuse

Self harm is difficult to understand, if you’ve never felt the urge to do this.  If you haven’t, be very thankful because the fight that goes on internally is terrible.  It’s made more difficult because of the stigma related to self harm.  The inclination is to think that a person who engages in self harm is ‘completely screwed up’ and maybe even ‘beyond help’.  Nothing could be further from the truth.

There is hope.  Recovery is possible, but it takes a lot of work and unfortunately many of the people struggling with this don’t get the long term therapeutic help they need.  Because of some of the things I am involved in when I’m not blogging, I know many people (men and women) who are fighting this battle every day, and also many people who have won the battle.  It is possible.  It is a really hard battle to beat this, but it is possible.

Self harm is a dangerous activity but the people who use it in order to cope, are no different from anyone else who might use destructive behaviours.  They deserve compassion, acceptance and help… just like any other human being.

An interesting story to end with shows this isn’t always available.  It is my experience of seeking help after my worst self harm, about ten years ago.  I had cut myself badly while dissociated, so actually I felt nothing.  I went to the Accident and Emergency Department of my local hospital (it was after-hours) and the doctor who treated me refused to give me a local anaesthetic while he stitched the large wound.  He told me that I had done this to myself, so I could take a bit more pain.  And yes, it was very painful.  Whether he thought he was being smart, or teaching me a lesson, I don’t know; but there certainly wasn’t much compassion or acceptance of the struggle I was having that night.

“Do no harm & leave the world a better place than you found it.”

―    Patricia Cornwell

Gratz,K.L. & Chapman, A. L., ( 2009). Freedom from Self harm: Overcoming Self-Injury With Skills From DBT And Other Treatments. Oakland: New Harbinger Publications.

Sutton, J. (2007). Healing the Hurt Within – Understanding Self-Injury And Self-Harm, And Heal The Emotional Wounds. Oxford: How to Books Limited.