Anything Other Than A Smile

As long as there is a smile on my face, is that enough? 

Does that please the masses?  

Does it convince you that all is well? 

Unfortunately in some quarters it seems to be the case…
that if I am smiling people who matter to me choose to ignore the rest. 

And that hurts like hell.

Someone who apparently knows me well, they have certainly been there to watch the journey I have been on for years.  I’d like to think that if they were me, if a friend of mine who I had known forever, if I had seen her go through massive up’s and down’s through many years… I’d like to think that I would know that there is so much more that lies behind the smile.

Smile though your heart is aching
Smile even though it’s breaking
When there are clouds in the sky, you’ll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining through for you

 Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That’s the time you must keep on trying
Smile, what’s the use of crying?
You’ll find that life is still worthwhile
If you just smile

That’s the time you must keep on trying
Smile, what’s the use of crying?
You’ll find that life is still worthwhile
If you just smile

(Smile – Nat King Cole)

That’s what I’ve been told all my life.  To smile.  Apparently that’s what people want from me and even I can see that a smiley face is so much nicer to look at, and a smiling, laughing person is so much easier to bear than a depressed person. 

It’s a big dilemma because while I was told to smile I have since been taught to have my feelings as they are (through many years of treatment and therapy).  It’s no wonder that I struggled in the beginning of this journey to even know what a feeling was, let alone know what I felt.  I had no idea because I had spent so many years of my life being what I thought people wanted me to be. ‘Happy’.

At the weekend I was visiting family and was laughing with my 19 month old niece L (who I mentioned a few weeks ago in Child’s Play).  She is simply adorable when she laughs.  Actually she’s adorable all the time but her laugh is infectious.  She was laughing at me (and the Imagined Ugliness part of me was trying to ignore this fact because I wasn’t sure what I had done or how bad I might have looked).  The more she laughed, the more she made me laugh, and so it went on.  I don’t think either of us had much idea what we were laughing about but it was fun, and I loved that I was with her after an awful week of pain and distress.

Today I learnt that my laughter with L was taken by someone else in the room to mean that I was all better and that my pain and fatigue were gone.  I’m guessing that they also thought my mental illness was gone.  Sigh.  If only it were that easy. 

This is such a familiar place to be, that an ability to have a few moments fun is wrongly assumed to mean everything is fixed.  No problems.  I tried to explain that this wasn’t the case and that actually I had still been in a lot of pain, but that my pain was not something L would have understood or even known about.  The ability to have a little fun with L made my weekend.  She wouldn’t have connected with me quite like she did if I’d sat in the corner, being how I felt – sad, tired and sore.  She wouldn’t be interested in that kind of Aunty Cate.  And fair enough.  At her age, it is all about being in the moment – carpe diem perhaps.

And that’s okay for L.  She’s 19 months old.  But somehow I expect different from adults.

This has gone on for years, and I admit that my ability to put on an act doesn’t help.  For years I could put aside the outward display of depression when in the company of others, so that I could be what I thought they wanted of me.  They mostly couldn’t cope with my depression, despair or sadness and clearly most people didn’t want to hear about the tortured thoughts and feelings.  So for a while, I could be what they preferred.  I was told this was ‘the old Cate that we always loved and knew’.

I was very unhappy on the day of my wedding and even said to my father (outside the church) “don’t make me go in”.  We did go in, and I did get married.  For hours that day I smiled and looked like I was having a wonderful day as the bride.  Interestingly I don’t have any memories of the day (even shortly after).  I knew I said those words to Dad because it was unfortunately loud and clear as day on the video when we all watched it later.  (and yes, my new husband did ask a few awkward questions).  It was taken as me joking with Dad.  I must have been joking because I appeared so happy throughout the day.

I’ve spent my life putting on an act, so much so that at times it’s hard to know which is the real me.  Part of it comes from Borderline Personality Disorder (BPD).  In a display of my distorted sense of self I adapt to my circumstances.  I know it works against me in the long run, but at the time it saves me.  It makes me fit into my environment when otherwise I would be at a compete loss.  Another part comes from me the Preacher’s Kid.  The expectations on Preacher’s Kids were then then quite hard.  We were expected to be nice, quiet and…   of course, happy.

Combine that with a general public inability to get their head around the fact that everyone does this play-acting to a certain extent.  We all know no one wants to see or hear all the time that we are in pain (physical and/or mental). 

And I can take it from L.  I don’t expect her to comprehend any of what I face each day but I do expect people who are adults, who know me well, who should have some understanding of pain to realise it doesn’t all go away, the moment there is a smile on my face.

A good ending…
It was so nice when my sister-in-law rang later and asked if I was okay that day.  She knew that me laughing with L for a few moments did not take everything else away.  She chose to see that there was more than the smile and laughter, and her acknowledgment of that made all the difference.  It helped me feel a little less invisible to the world.

“I am an invisible man. I am a man of substance, of flesh and bone,
fiber and liquids — and I might even be said to possess a mind. I am
invisible, understand, simply because people refuse to see me.

 - Ralph Ellison

I Need A ‘Dislike’ Button

Don’t put me in a box!
Image via jobpostings.ca

“All that is necessary for the triumph of evil is
that good men do nothing.”


- Edmund Burke    

Maybe you will decide you want a ‘dislike’ button on my blog when you’ve read this, and that’s okay.  I love feedback, regardless of whether you agree or disagree.  All of it (with the exception of being personally abused) is welcome.  I believe it is important to react to what we see and read.  It’s all too easy to just let things slide.  To think I don’t want to be the party pooper, so I won’t say anything.  To leave it for someone else to say.  And that’s covers negative AND positive feedback.

That’s why when I see something that doesn’t sit right with me, I try to make sure I speak up.  It might not be right but it is my opinion.  It’s hard though, especially if I know I will be going against the majority.  When I know that some people won’t appreciate what I think.  I have to remind myself that I’m not speaking up to be popular, I’m speaking up for what I think is the truth.

At the weekend a pic came up on my Facebook news feed that I struggled with.  Actually nowdays it is a miracle when anything shows up correctly on the news feed, so I should be grateful.  Instead I was disturbed.  I sat on it for a while to give myself time to try to see it from different perspectives.  I know that as someone with Borderline Personality Disorder (BPD) I can be prone to impulsiveness, let alone inappropriate anger.  So it’s important for me to give myself time to be sure of my reactions.

“Today is International Disturbed People’s Day

Please send an encouraging message to a disturbed friend… just as I have

I don’t care if you lick windows, take the special bus, or occasionally pee on yourself…

You hang in there sunshine, you’re friggin special.”

The pic included with the text was of a cartoon-typified nurse in uniform.

Don’t get me wrong.  I can see a funny side to this too.  I do actually have a sense of humour and have personally been in that ‘special bus’ (thankfully without signage) and have peed on myself more than once(when I had ECT) and had to walk back to the psych ward through a public hospital reception area.  So there are things I can relate to personally.  But that’s not enough for me to think it is a great joke and share it on.

I have no problem with laughing at myself but draw the line at laughing at someone else’s behaviour, especially when they may not have control of it.  It’s not fair on those individuals (because they are real people) and it paints a picture for the community at large that this is how we recognise a ‘disturbed person’.

I’m not even sure who qualifies as a ‘disturbed person’.  Obviously the behaviours above must indicate ‘disturbed’ but is it just if you fulfil all those criteria?  I dared to Google the term and came up with all manner of definitions, but because there was such a wide range I settled for the first (on the basis that many people would simply go to the first).  It said:

dis·turbed
adj.

Showing signs or symptoms of mental or emotional illness: crimes that could only be committed by a disturbed person.  (1.)

I show signs, or symptoms of a mental or emotional illness, although to date have committed no crime, that I am aware of.  I guess that makes me sort of disturbed.  Hmm.  But currently I don’t do anything described above and it is at least 12 years since I have, yet because I am a ‘disturbed person’ the joke is on me.

Image via cadbury.co.nz

People make a lot of jokes about people with mental illnesses and in my country saying someone like this is ‘special’ could also easily be taken as something to laugh at.  It doesn’t really mean they are special in terms of the standard definition of the word.  We also joke in this country that a person might be “a jaffa short of a packet”.  A jaffa, for those around the world, is a Cadbury chocolate/orange candy.  There are masses of jokes like that and I read some of them as comments below the pic I have described.  And it’s one thing to describe yourself that way, but in my mind it is completely unacceptable (no matter how funny it might seem) to describe someone else that way, especially if they are not in a position to be able to defend themselves, or correct the portrayal.

There is a constant stream of jokes about people with mental illnesses, or for that matter any disability on social media forums.  And it is easy to say that it’s okay to laugh at jokes about ourselves with the line I often hear “it’s better to laugh than cry”.  That’s got some truth in it, and I don’t have a problem with people laughing at themselves so long as they have thought about the consequences of that laugh.

I believe that jokes like the one above only add to the stigma associated with mental illness, and I believe that even having a laugh about yourself in that situation adds to the stigma.  We all can say that we want stigma to be reduced but I think that these jokes are just one of the ways that adds to how the general public view people with mental illnesses, and then display that attitude of stigma.

Time to think
Image(s): FreeDigitalPhotos.net

Think about this for a moment.  At the time I last checked that Facebook post I referred to, about 300 people had ‘liked’ it but 600+ people had ‘shared’ it.  And anyone who uses Facebook will know how these clips snowball.  I don’t know whether those people were ‘laughing at themselves’ or ‘laughing at those with mental disturbances’.  But if all those people read that description contained in the pic, and then assume that means all people with mental disturbances behave that way…   then they draw the conclusion that I lick the windows.  Is that what I want people to think Iu do (because I have a mental illness)?  I’m not ashamed (mostly after a lot of therapy) of what I do because of my mental illness but I don’t want people judging me on the basis of misleading data.

Yes, often I can see the funny side of these jokes and I could say that I’m just having a laugh at myself.  But it grows like a virus and we end up with an environment of attitude and judgement based on information that is misleading, but information that started innocently with a laugh at ourselves. 

If I want to stop stigma, I have to actually do something about it rather than just wish it would go away.  I have to be prepared to only broadcast the truth.  I can’t expect people to stop judging me a certain way when I still put across a mis-formed view of what mental illness is.

But that’s me and maybe I just don’t have much of a sense of humour.  I’d love to hear what you think.

“I have a very strong feeling that the opposite of love is not
hate – it’s apathy.  It’s not giving a damn.”

- Leo Buscaglia

Awards, Awards et al.

I can imagine that if you are not a blogger, then you might perhaps imagine that Blogging Awards get handed around like what we Kiwi’s know as Weetbix cards.  What I mean is the cards/toys/freebies that come (or at least used to come) with cereal packets and then be swapped around by kids.  Actually they mean a whole lot more than that to me, and I suspect to every blogger.

Bloggers can watch their statistics of how many read a post but there is no statistic of books sold or the like.  Comments are an excellent way of getting feedback from readers (including other bloggers) and I love getting comments either through my blog here, or my Facebook page.  But Awards tell me that another blogger recognises and appreciates my writing.  That is a little bit like getting a review printed on mee, and isn’t that what all writer’s want?

In the last couple of weeks I have collected a number of Awards, and because of both what was going on personally for me, and what I had on my mind as that which I needed to say here, I haven’t had the opportunity to tell you about them, thank my nominators and carry about the expectations of each particular Award.

First, came nominations from Kevin of Voices of Glass and from Eileen of …But She’s Crazy for the:

I really appreciate both Kevin and Eileen’s workmanship in their blogs (that’s a big hint to go check them out) so when they tell me they like what I am doing on mine, that means the world to me.  The criteria for this Award is that the blog must be informational, honest, raw, and outstanding.  That’s pretty much how I see both their blogs so to have them recognise Infinite Sadness… or what? for that is awesome.  It’s exactly what I wanted my blog to be.  So a huge thank you to you both.

I want to share with you the comments Kevin made in his post when he announced his nomination of me, because it was something about my country of New Zealand that I had never stopped to consider.  Maybe if you are a kiwi too, you may also not have stopped to think about this:

“Plus she is from New Zealand – a country whose air force – The Royal New Zealand Airforce has as it’s logo (as can be seen from the picture below) i the centre of it.  You have to admire the sheer defiance and optimism of an airforce which has as it’s emblem a FLIGHTLESS bird.   LOL sorry Cate but somebody had to point it out.”

Logo of the RNZAF – as noted by Kevin

Thanks Kevin.  I always enjoy your humour, even at the expensive for us kiwis.

The next Award to arrive in my mailbox was from another of my favourite blogs. Halfway Between The Gutter And The Stars kindly nominated me for

This is a lovely surprise because her blog is wonderful.  I love the amount of work that she puts into her blogging in spite of the trials she lives with, and her wide readership is just one sign of how great she writes.  She is a blogger that I look up to and I very much appreciate the sneak view into her world.  Thank you.  From you, I feel quite honoured to be nominated.

The One Lovely Blog Award  comes with a few requirements of me, one of which is to list seven (unknown) things about me.  Firstly please accept my apologies if I have told you any of this before:

  1. I am hopeless at Maths and seem to be getting worse with age.
  2. I only passed Chemistry at school because my mother had previously been a science teacher and did all my equations for me.  That said, it is probably the one and only time I ever had her wrapped around my little finger.
  3. At high school (and remember this was in the late 1970′s) I assumed girls could be teachers, nurses, typists (with a typewriter not a computer! LOL) or secretaries.  I was adamant I wasn’t going to be a typist or secretary so refused to learn typing at school.  In hindsight, I’m glad I wasn’t ever a typist or secretary (although no offence to those who choose to be) but touch typing would sure be handy now.
  4. My first car was a 1968 Ford Escort.  The first time I drove it through the Mt Victoria Tunnel in Wellington at peak hour (a rather busy stretch of road) the gear stick came off (separated from the care) in my hand.  It was time to panic!
  5. My current car is a 1989 ‘vintage’.  Anything aged older than my eldest nephew (14) must be vintage.  It is a very weird pink colour.  The dealer convinced me it was really red but on the ownership papers it is described as watermelon.  Now I bet no one else has a watermelon for a car? LOL.
  6. I love Cadbury Picnic bars.  You can win me over with one any day.
  7. I am currently reading The Midwife’s Confession by Diane Chamberlain.  I don’t think it’s really my thing but it is advertised as being along the lines of Jodi Picoult, and (for entertainment) I like her books.

That brings me to seven.  I notice though that yet again I have just about written a whole post on each one.  Slight exaggeration but I need to learn to be succinct.  Why can other people just write a few words for each one?

Anyway… moving right along (instead of putting myself down).

Kevin from Voices of Glass has also nominated me for this Award:

This Award is apparently awarded to bloggers who in their writing demonstrate a passion for writing and for the subject matter on which they are writing.  When I think about that it is something that I wanted to be recognised in me for a long time, so this is a great honour to receive this from Kevin.  Thanks again Kevin.

Now the important part of nominations.  As I said, Blogging Awards are something that, while they seem to be flowing thick and fast at times, they do actually mean a lot and so I take the task of handing on nominations seriously.  I have to admit I’ve lost count but I suspect I need to nominate seven for each Award I received, making 28 bloggers.  I’m not going to, because while I could (because I read a lot of blogs) I would rather highlight just a few special bloggers.

Nomination for Outstanding Blogger Award

For the Outstanding Blogger Award, which is for a blog that must be informational, honest, raw, and outstanding, I would like to award this to Brett Batten.  I have learnt so much from Brett (I’m not sure I wanted to know all that I have learnt though… but I’m glad I do now) and have been much inspired by him in the time I have been following him to keep up the message of reducing mental health stigma in our world, sooner rather than later.  This Award is much deserved and I encourage you to check out his blog.

Nomination for One Lovely Blog Award

I am nominating another Canadian, this time Nikki at Just another Canadian Gurl.  I really appreciate Nikki’s fresh style in writing about what comes and goes in her life.  Scratch the surface and there is so much more than meets the eye.  So again, please check out her blog.  You won’t be sorry. 

I’m not sure what it is about Canadian’s (and I’m not being paid by some Canadian Blogger’s Federation or whatever, but they all seem to produce outstanding blogs, in all sorts of subjects.  It must be something in the air up there.

Nomination for Thanks for Writing Award

The final nomination I want to make at this time is to an amazing blogger who inspires me greatly.  To remind you this Award is for someone who demonstrates a passion for writing and for the subject matter on which they are writing.  This nomination is for Being a Beautiful Mess.  This is one of those blogs I somehow picked up along the way, probably because I saw someone else was following it, and I became hooked by her honesty and her passion for not only what she writes about but seemingly for life.  She seems to me to take life by both horns and… make life happen.  Her experience is quite different from mine, and I like that (it is good to read a range of material).  I find I am hanging out for the next post.

So apologies if I have done it wrong, and not by the rules.  It simply means more to me this way and I suppose I am just not a mass market kind of person.  Congratulations to those I have nominated, and a huge thank you to those who nominated me.

“I feel like my peers now are artists like Madonna and the Stones, Michael Jackson and Prince. These are people who were able to take their careers beyond the normal here-today-gone-tomorrow life span.”

 - LL Cool J

Imagined Ugliness

This post is about the subject of body image and eating disorders and so may include content that may be difficult to read. 

I believe it is very unhelpful, to those who struggle with these issues, to use numbers and sizes, because I know from my own experience that we can distort what we read to turn it into new challenges and/or standards for ourselves to strive toward.  Accordingly I will not be using either.  It simply doesn’t help anyone.  If it does anything it just satisfies curious minds.  And I’m not going to do that in case it causes someone else to stumble.

It doesn’t take much to go from a child who has little idea of how she looks, and desperately wants to look like her friends, to an adult who is unsatisfied, still doesn’t know how she looks and eager to learn any of the latest weight loss tips.  One thing leads to another and before you know it is completely out of control… and you still don’t know how you look. 

This not knowing how I look didn’t come from not having a mirror in our home, and I’m not suggesting that it was the definite reason for difficulties later, it’s just that now, I can perhaps see where things might have started.

There is a photo of me as a seven year old, with my brothers, kneeling in front of the Christmas Tree.  Nothing unusual about that except I had no idea that I looked like the little girl in the photo.  My school photos from the same time are similar.  I can’t remember what I thought of those photos at the time but now I can see that here was a pretty, blonde kiwi girl.  It’s just that girl is not who I thought I looked like.  It may as well have been some other little girl.  I saw myself as ugly, straggly hair that was no particular colour and…

 big!!!

That ‘big’, tacked innocently on the end of the sentence is really important to this story because I always thought, actually I knew, I was big.  And what I meant by big was fat, overweight, and different from my friends.  Enormous! 

I wasn’t any of those things in reality, but my mother would regularly tell me I was a big girl.  Those exact words.  Right through my childhood I would hear those words and I grew very quickly to hate them.  I didn’t want to be ‘big’.  I wanted to be small and petite, like at least a few of my friends.  To give my mother the benefit of the doubt, I did end up 5′ 10″.  I wasn’t really tall as a child but I guess I was at the taller end of the class.  But if she meant ‘tall’, why couldn’t she have said ‘tall’?  And if she meant I was older, then why not say that?  ‘Big’ did some damage that I still struggle with today. ‘Big’ is like a red rag to a bull.

The thing is there could be lots of explanations for what Mum told me but what matters is that even as a young child, body image was clearly an issue for me.  And as I grew, the issue grew into a problem.

For a minute I need to talk about body dysmorphia and I chose the journal I did to get a definition, because the title of the article is “Body dysmorphic disorder(BDD): recognizing and treating imagined ugliness.” (1.)  I had a laugh to myself because I have never seen it described quite as accurately as I experience it.  Imagined ugliness. 

But really, it’s no laughing matter.  And to me, it is not imagined.  It is my reality.

“Individuals with BDD obsess that there is something wrong with how they look,
even though the perceived appearance flaw is actually minimal or nonexistent…”
(1.)

That’s what the journal says, but what it means for me is that when I look in the mirror I don’t see what other people see when they look at me.  Actually I have very little idea of how others see me.  I just don’t get what they see.  I can look at myself in the mirror for hours (actually I don’t let myself do that anymore) but can not for the life of me tell whether I am big (like Mum said), small, fat, thin, short or tall.  I just don’t know.

I did this exercise today as I was preparing to write this post and it was almost as if the image in the mirror was constantly changing.  I have lost a little weight recently.  I stay away from scales now (well as much as I can make myself) but a friend mentioned I was looking good and said  I had lost a little weight.  I knew she was right about the weight loss because my jeans are loser, but I literally can not see it.  From when I was of an anorexic weight to an obese weight (and yes, that happens more often than anyone admits – more about that later), the image in the mirror looked the same.  How accurate is it?  I have no idea.  I just don’t see myself how anyone else sees me.

I hate photographs.  They are always a surprise to me because I just don’t know what I am looking like.  Of the last photo I saw of me (taken a couple of years ago) all I could think was that I looked pregnant.  And that was not a good thought.  I choose not to use photographs of myself on any social media because of security issues I have expressed previously, but actually I’m glad I don’t.  Because I hate what I see in the photographs.  Maybe what anyone else can see is different but I am not game to trust anyone on that.  I’m sure that the real truth is that my mum was right… and I am simply big (still).

To be continued…

“. . . hell is wanting to be somewhere different from where you are.  Being one place and wanting to be somewhere else . . . .  Wanting life to be different from what it is.  That’s also called leaving without leaving.  Dying before you die.  It’s as if there is a part of you that so rails against being shattered by love that you shatter yourself first.”

 ―    Geneen Roth,
Women, Food, and God: An Unexpected Path to Almost Everything

References

Phillips, K.A. (2004). ‘Body dysmorphic disorder: recognizing and treating imagined ugliness’  World Psychiatry. 2004 February; 3(1): 12–17.

The Sunshine Pill

The ‘Sunshine’ Pill – just what I need
Image(s): FreeDigitalPhotos.net 

It was Sunday that my right foot started hurting (more than usual) and over the next 24 hours the pain gradually crept up my body.  Fibromyalgia was rearing its head and there is no medication for me, so I just have to ride it out.  The electric blanket on the bed is good but I really need another one on top, and then of course there is the slight problem that eventually I begin to cook.

I wasn’t surprised that my fibro flared again.  I was upset and not quite myself all weekend.  My friend’s death on Friday had hit me more than I expected.  Sometimes it really doesn’t do us any good to know it’s going to happen, because we never know how we’re going to react.  For me, as I wrote in He Was One Of The Good Guys there were good memories of someone who had been a very good friend but overwhelming me were bad memories and hurt generated by someone who we both knew.  That seemed to take over from the grief for lost friend, and to compound it I felt guilty for being stuck in my own memories and hurts rather than taking the time to honour my friend with our good memories.

This time I couldn’t seem to pick myself up, dust myself off and carry on.  And that’s okay.  What I find not okay is that I have learnt that when I get upset and down, then my body fights back with pain and exhaustion.  To the point where I actually have forgotten my emotional pain, because I am now overwhelmed by physical pain.  I’m sorry, I may sound down on myself but that it is so not fair.

So for three days now I have been backwards and forwards from my bed, to the couch, to the bathroom (although taking a shower is completely beyond me) and occasionally to the kitchen for more coffee and food supplies to keep me going (not that I have any desire to eat).  It’s quite a life I lead.  I have hardly even ventured far enough to the computer, and that leaves me feeling like there is something very definitely missing in my life.  My ‘virtual’ friends.

Today I ran out of milk (a necessity for the coffee) and I had a birthday present for my (to be) nine year old nephew that needed to be in the post yesterday.  I called for help.  I find it hard to ask for help at the best of times.  The only person I felt comfortable asking was my Dad, but trips to the supermarket from the after-life are, as far as I know, impossible… so that’s not an option anymore.

I got my milk, and J’s birthday present was dispatched (hopefully it won’t be too late) but I got some advice too.  The person who came bearing milk knows about fibro and knows that it is fibro that is causing my pain right now.  But I got told that when the sun comes out tomorrow (gosh, doesn’t that sound like a song?) I will feel much better.  True, not a word of exaggeration.

A while ago I reblogged Robert Kalman’s LETTER TO PEOPLE WITHOUT CHRONIC PAIN  and only recently I came across a similar letter, Open Letter to Normals.  They are both pleas to people without any sort of chronic pain to not assume they know best and bestow upon us what they consider their wisdom.  Lord save us!  (BTW I have to say I actually don’t like the title of the second letter because I consider myself as ‘normal’ as the next person, but for now I’ll leave that matter and not get side-tracked.)

It’s simply miraculous how someone with no medical training, not even taking the time to ask me how I am or even what my symptoms might be, can conclude that when the sun shines my pain will be magically gone.  My doctor doesn’t even know what to do to relieve me of this, but the assumption that the weather will fix this was too much.  She left shortly after (thankfully because if I had any energy I would have got off the couch and throttled her).

I’m not sure what the weather forecast is for tomorrow but it is winter here in New Zealand and so I suspect it will be another grey, cold, damp day.  That’s okay with me because I’m not holding out hope that the weather will fix this.  But it does remind me that we need to be so careful in how we speak to other people.  Regardless of whether that person has a chronic illness, any other sort of pain, or even if they are simply ‘normal’ we (me included) need to remember to put brain into action before putting mouth into gear.

My pain won’t be gone tomorrow, regardless of the weather.  I am always in pain now.  Maybe it will be less, maybe it will be more.  No one understands fibro that well to be able to predict.  What is interesting is that after the statement was made I was quickly aware again of the emotional pain I was feeling earlier in the week.  Perhaps because I was not understood.  And I was not heard.

And with that I’m going back to bed.

Music Therapy

Image courtesy of FreeDigitalPhotos.net

“Everybody has that point in their life where you hit a crossroads
and you’ve had a bunch
  of bad days and there’s different ways
you can deal with it and the way I dealt with it was

I just turned completely to music.” 

―    Taylor Swift

Sometimes there just aren’t any words.  It’s not writer’s block and I’m not sure if it is actually allowed in the world of blogging but I’m guessing if bloggers can just blog pictures, then this isn’t much different.  There is simply so much going on in my head that I don’t have a point at which I can start.  It’s either all going to come out as one big splurt.  Or there is nothing.

I can tell you that life is hard right now and it hasn’t been this hard for a while.  Too many bad memories and hurts have risen to the surface.  I didn’t expect it.  I just don’t know what to do or what to say.  So I remember that I always found Music Therapy useful.  Music, regardless of the presence of lyrics, always seems to be able to say it for me. 

So this song is another Kiwi tune by The Feelers.  It’s not the best recording (but the best I could find) but it is the live performance from Christchurch shortly after our first and largest earthquake.  So it means something to me.

I’m not sure if I’m trying to talk myself into this, or what.  That’s when I think of the lyrics, which I’ve printed below.  But I love the music too and it made me feel a little bit better today.  So that has to be a plus.

Lyrics to Stand Up:

It’s time to open up the memories of your past
And its time to move on
It’s time to open up the shadows of your heart
And it’s time to move on
Cause it’s a great time to live and it’s time to
Stand up and be counted on
Cause it’s a great time to live and it’s time to
Stand up and be counted on
It’s time to open up and shed a little light
On your soul
Cause the box you put your heartache in got
Lost or swept out to sea
Now it’s time just to move on
And it’s a long long road to carry on I’ve got to
Stand up and be counted on,
It’s a long long Road and I’ve got to be strong. (x 2)
Yea it’s a long long road to carry on I’ve got to
Stand up and be counted on.
It’s a long long Road and I’ve got to be strong. (x 2)

[Lyrics on http://www.lyricsmania.com/ ]

“Those who dance are considered insane by those who cannot hear the music.” 

―    George Carlin

He Was One Of The Good Guys

I didn’t pick this music because of it being any kind of popular funeral favourite.  Not until I read the comments on You Tube did I realise it’s use as a symbol of death.  And that almost made me not use it. 

Actually I chose it because my friend was a damn, fine guitarist and I wanted to  use some music that I related to him.

It’s hard to put reasoning to the death of a friend.  I know A’s suffering is over, and whatever you might believe about life beyond death, I have a fair idea of what he believed, and believe much the same for myself.  He will be at peace now, no longer in the pain caused by the cancer.

But he was only three years older than me, and I’ve known him for over 30 years.  His wife is a year older than me (I have known her for nearly as long).  Too young to be a widow.  His two kids are just getting their adult lives under way.  And now it’s over.  It’s just hard to see it all as fair for them.  It’s hard to see it as fair for any of us who have lost a fantastic friend.

My friend died on Friday after a battle with cancer.  He lives in a city I used to live in, but that has meant I haven’t been able to see him.  My brother had let me know earlier in the week that A didn’t have much time left, so I was waiting… but it still hit me as a firm kick in the guts.

A was one of the good guys.  Always.  He was a lot of fun, he was very talented, he had a heart full of compassion and enthusiasm.   I might not have always agreed with his views but I loved the way he was so passionate about what he believed.  I always knew with A that it would be safe to give him my life for a week, and he’d take care of it.  When I had what I might call a pretty skeptical view of most guys, I knew A was great.

We met in the fourth form.  That’s Year Nine in nowadays education language.  A’s best friend was my first boyfriend.  To make things a little more interesting my best friend was A’s girlfriend at the time.  Of course first romances hardly ever last and the four of us went our separate ways, although staying good friends in the same social groups through the local church.  Unfortunately my first boyfriend couldn’t hear the word ‘no’ and so set about stalking me for many years.  I have written about this in Stalked… But Still Hiding Some Of Me and more in my book Infinite Sadness.

It put my friendship with A in a difficult place, because he became the access point to information about me.  But A was a good friend, we did a lot of music together and he wasn’t a friendship I wanted to lose.  A went on a few years later to marry another good friend of mine, so there was another connection to me.  That said, I am totally confident that A and his wife never compromised my safety.  They did absolutely everything they could to dissuade a stalker who was not going to be put off.

To save you from a very long story, I will fast-forward a few years.  The stalker was still persistent and actually on at least one occasion I had to sneak out the front door of A’s home while the stalker was knocking on their back door.  They held him long enough for me to run to my car and take off.

Even though A and his wife did nothing wrong, never put me in danger, and actually were totally supportive of me, I have to admit that this stalking and some other things happening in my life at the time were literally doing my head in.  I also came to the conclusion (probably unwisely) that I would never go back to A’s home.  There was too much risk, and while I kept contact with A’s wife, who by now was working for the same company as me, I never went back.

And when I left that job, I decided to cut contact altogether.  I decided to leave the city we all lived in, hoping that would end things.  I wasn’t cutting contact with A and his wife because they had done anything to upset me but because the danger of the stalker accidentally getting information about me was too great.  I also didn’t like my friends being put in this position.  In my mind I basically ended the friendship with two very special people because I couldn’t see another way of being safe.  We never talked about it, I simply left town.  I was desperate to end something that was wrecking my life – the stalking.

Image courtesy of FreeDigitalPhotos.net 

Now?  I feel a whole lot of things but find I mentally stop myself going too far with any emotion, I guess because I really don’t want to feel it.  There’s a combination of anger directly partly at myself for deserting a friendship with both A and his wife that meant the world to me, but more so I feel angry with the stalker who cost me those friendships.  A was a good person, as I said, one of the good guys (when I didn’t think too many existed) and his wife is a truly beautiful person.  They never knowingly did anything to harm me.  I know that what I did at the time was just about survival, and therefore I can try to forgive myself.  But I lost out on their friendship.  And that has re-activated the anger I feel to the stalker.

I also struggle with an odd co-incidence.  When I was 14 years old, there were four of us.  Myself, A, my best friend and the stalker.  My best friend died some years ago in a car accident and actually that was the last time I saw A.  I ran away from him because also there was the stalker.  Now I even find it hard to say but the stalker and I are all that is left of that group.  There are all sorts of ‘why’ questions circling in my head.  They are impossible to answer.

The irony is that I know if I went to A’s funeral the stalker would be there too.  And I simply couldn’t risk that, because I know it’s still not over for him.

It reminds me that stalking is never just a nuisance.  And it’s never just a joke.  People get hurt, and there is a price to pay for everyone involved.  Mostly the experts say that when the target of the stalker is gone then the obsession also goes.  This time it didn’t and yes, it hurts.  Actually to be completely honest, this has done my head in this time.  I actually thought I was through the pain the stalker caused and the Post Traumatic Stress Disorder (PTSD) symptoms but the past few days I have found myself right back in the midst of it.

I will get through this and meanwhile I am going to try to remember the good times, for there were so many with A.  He had a way of making good times happen, and for that I am thankful.

Borrowed Hope

Image courtesy of FreeDigitalPhotos.net

“I am a success today because I had a friend who believed in me and
I didn’t have the heart to let him down”

 - Abraham Lincoln

A few years back I was really depressed.  I was very despondent and lacking all hope for any sort of recovery of my mental illness.  It was before my diagnosis of Borderline Personality Disorder (BPD) and I had been dumped in the ‘treatment-resistant depression’ box.  I hate that box because it’s like ‘they’ decide I am not doing my bit to recover and so am just left to founder for myself.  The public Mental Health System had ceremoniously dumped me off their books because I didn’t respond to the Cognitive Behavioural Therapy (CBT) they offered and they simply didn’t know what else to do with me.  And yes, they told me all this.  The public Eating Disorders Service also dumped me off their books at about the same time because they couldn’t work me out or figure why I did the things I did, and didn’t respond to what they tried to get me to do.

I was seeing the therapist I still see, and thankfully he held out hope for me.  But it wasn’t enough.  I thought at that time that the only reason he held out any hope for me was that I paid his bill at the end of the month.  No matter what he said or how super-therapist he proved to be, I could only imagine that he just saw me for the money.

You name it, I’d tried it.  I’d had years of therapy (from several different therapists),I had tried masses of different medications, I had tried Electro Convulsive Therapy (ECT) three separate times, I had two lengthy stays in a therapeutic community and had many hospitalisations (which really never did much except maybe keeping me alive.), oh and did I mention that I left my marriage on the expectation that doing so would cure me (many doctors told me this would happen).  It didn’t… although it did bring an end to my suicide attempts and alcohol abuse so I guess that was a good thing.

I had sunk to a new low.  I thought I had tried everything and nothing worked.  It seemed like nothing was going to help and while I hadn’t acted on suicidal ideation for some years, the thoughts were constant.  I started to realise that this was going to be my lot.  I was always going to be depressed (because that’s what everyone still thought I was).  Another 50 years of this was not a good prospect.  Life as a depressed person did not look like a good prospect and actually I really couldn’t see the point.

I stepped up the self harm, cut down the eating and tried to come to terms with the fact (or what I assumed was a fact) that this would be my lot.  I kept telling my therapist that he was only in this for the money and actually no one really cared about me.  For some reason he kept on seeing me regardless of my attitude about his apparent money-hungry ways.

Fortunately I had someone who believed in me.  My Dad believed in me, believed I was a good person and believed that one day I would be healed and restored to health.  I have to admit that I was very clear that Dad felt that way, but I really just thought it was him being him.  He was very much a ‘glass half-full’ positive person to the extent that it drove me to anger at times.  I thought it wasn’t really real and that one day I would do something to smash that glass and he would realise that the hope he held for me was just thin air.

With a lot of patience and perseverance Dad kept on at me.  Somehow (and I can’t remember exactly how it happened) I slowly started to think that maybe I should hold onto his hope for me.  I had no hope for myself but I kept hearing his belief.  Somehow he convinced me that his hope for me would be enough.  His hope for me would get me through this.  I had no idea how that could be possible but I decided to hang onto life, because he believed it would get better (even though I still had no hope myself).

It worked.  Not overnight by any means but it kept me going day to day, without choosing to opt out of life.  Actually making that decision to hang onto his hope also helped me stop self harming.  The urges were still strong but I could see that if what he said was right and my life was going to be restored, then I didn’t want more scars on my body.  And that was somehow enough for me.

Dad died suddenly last year.  It was a huge shock and one thing that really worried me is what I would do now that he was gone.  What would happen to his hope that was keeping me alive?  I’ve realised though (with time) that his hope can still keep me alive.  He’s not here (physically) anymore but I believe he is somewhere watching over me, and as such he probably still holds that hope for me.

More than that though, I’ve realised that I have a little bit of hope for me now too.  I’m not expecting a total cure from the difficulties I face but I can see that it is possible to live a satisfying life in spite those things.  So with Dad’s hope, and my own new hope I can keep going.

Borrowed hope really works.  I am living proof of that.  So I want to say if you don’t have any hope for yourself, look around and see who does have hope for you.  Pick someone who you trust and can believe that something could be so because they think it is.  Then hang onto it tight.  You don’t have to understand it, just give it a go.  What have you got to lose?

Child’s Play

I’m not a parent, and actually from a young age I always knew I wasn’t going to have kids.  But I do have nieces and nephews (three of each) who are very special to me, not the least being my youngest niece, 18 month old L.  The reason she is so special is that I have been around to see her grow from birth, whereas the others are older and I have lived away from them.  The others, I got to see maybe a couple of times a year at most, although I should point out that L has older brothers nearby too who marvel at my inability to grasp the technological age.  But L is teaching me a few things about the simpler things of life.

Image via FibroTV

Recently I was at her house and L was playing with play doh that her mother had made for her.  I have to admit I looked at this pile of doh and thought L’s parents were a bit boring because they hadn’t coloured the doh.  But L didn’t mind.  She didn’t need the expensive, brightly colours, store-bought variety.  She was having a ball with what she had.  I also was thinking about how I knew you could buy equipment to play with play doh, and initially thought L had life a bit tough because she just had a few bottle tops, etc and a small rolling-pin.  But again, she didn’t mind and it was quite clear that actually she would be happy playing for hours.Outside L has a sand pit, made out of a very large old tyre.  I watched her there too, as she played.  Again she didn’t need expensive toys, she was happy just running her hands through the sand.  It made me realise how much fun she creates for herself out of very little.  I’m not at all saying she is in any way deprived but rather that there is joy in the simple things.

Recently I read a blog post about appreciating the simple things, and for the life of me I can’t find it again.  But one thing I remember is the point that if you set a young child in front of a sink of water they will be amused for hours.  Not me though, it might take my interest for a few seconds if it had bubbles in it but otherwise I would quickly lose interest and walk away.  The same with L’s older brothers who are 12 and 14.  They want the games, the computer, the television, the mobile phone.  They’ve been brought up exactly the same way as L, but now that they are older they want things to keep them entertained.

As I said, I’m not a parent and the last thing I would attempt to do is tell someone how to be a parent.  I have little idea.  But what I do know is that I need to find a way of finding the joy in the simple things.  Find pleasure in what I have rather than always wanting more.  Sometimes it’s all too easy to look at what other people have, and want what they have got.  Particularly when you’re on a low income, there’s a temptation to be envious of others.  I’m realising though that there is no need.  I don’t need the fancy, bright coloured, store-bought play doh.  The plain homemade doh is actually sufficient.

The other thing that L reminds me of is the need to be silly.  I was at her house, and she was laughing.  I have no idea what she was laughing about.  Was it me?  Was it her mum?  Maybe it was the cat or the chickens outside?  I don’t know but she was having fun, again with nothing.  Actually I really like being silly.  I always have, and I always will (hopefully).  I have a pretty broad imagination and use it to be silly.  I’m sure it’s healthy.

I have spoken about it in Silliness is good for my soul! and That Little Girl.  I need to keep reminding myself of this because it’s all too easy to think we need to be grown up, responsible, and serious.  But isn’t it captivating when a young child laughs at nothing?  It brings a sense of joy into the room, and we forget our inhibitions.

L is incredibly good for my mental health because she has the ability to be silly and encourage me to do the same.  Not only that but she can create joy out of everyday things.  She is also very quick to spread her love around.  She is quick to come to me for cuddle and just hangs on.  She doesn’t know the difficulties of trying to make ends met, deciding what to cook for dinner, or even wonder what she should do with her life.  She simply takes life as it comes.  Each day is a new adventure.  It’s really time I started following in her example… before she grows up and becomes like the rest of us.  Unfortunately it will happen way to quickly.

For A Good Night’s Sleep

Wouldn’t it be great to slip off to sleep at 10pm, not waking until 7am?  No waking, no need to go pee, no bad dreams or nightmares.  I don’t actually remember a time when I have ever been able to do that.

I don’t remember being troubled by dreams and nightmares as a child but I do remember lying awake for hours, every night just waiting for sleep to come.  My Dad would occasionally tell me, both as a child and later as an adult, to pray for people while I was waiting to go to sleep.  This was the only advice I ever got about how to make sleep come sooner.  It didn’t help though.  Maybe it helped the people Dad had me diligently praying for, but the task would simply leave me more awake than I started.  Dad couldn’t understand that because he told me praying always sent him off to sleep.  Remember this is a preacher I’m talking about.  It seemed a little odd to me that he would drift off to sleep praying.  But years later I realised that he was one of the lucky people who could go to sleep anywhere, anytime.  But not me.  I hated sleep because I would lie there for hours every night.  I don’t think it helped either that I had a bedroom to myself, so had no one to talk to (except my dolls) to pass the time.

Image courtesy of FreeDigitalPhotos.net 

Sleep patterns continued much the same through life.  Getting to sleep was always a problem regardless of the recommendations of hot milk before bed, visualisations, emptying my bedroom of clocks, the television or radio.  Nothing worked and I went through stages of listening to all-night talkback radio (yes, I was desperate!).  The problem really came in the mornings when I had to drag myself out of bed for school or work.  I remember regularly having to eat cold porridge for breakfast (you really don’t want to try it!) because it took me so long to get up… and then madly running for the bus to school.  I hated mornings now as much as I hated nights.When I began to have mental health problems, everything to do with sleep got worse.  Even with the aid of sleeping medication I would lie awake for hours getting more and more depressed and despairing.  Every night I debate suicide with myself.  I became scared of the dark and for years I had to sleep with the light on.  Nightmares appeared on the scene to the point that I was scared to stay awake but scared to go to sleep too.  Generally my mood would deteriorate as the day went on, so by night time things were pretty bad.

Fastforward to today and I continue to struggle with the sleep part of the day, but the pattern has changed.  Fibromyalgia involves extreme fatigue so most of the time what I want most, is to go to sleep  Now I have to confess that I regularly have an afternoon nap (no, I’m not 90) although that has its drawbacks.  I am so tired and sore that I simply want to curl up in bed and go to sleep, but regularly wake to worse pain.  I wake and all my nerves seem to have caught onto an electrical current and are standing on end.  There is a rush of a burning sensation through my limbs and often my legs feel like they have been literally burnt to a crisp.  If I look at them I can see they are fine, but the feeling is so excruciating that I wish I had never gone to sleep.  And this only happens when I wake from sleep during the day.  It’s quite bizarre but apparently common with fibro.

At night now days I go to sleep pretty quickly, regardless of whether I have slept during the day, but I can’t stay asleep.  I sleep for a couple of hours at the most and then doze the rest of the night.  It makes the night pass very slowly, it feels like torture waiting for the clock to tell me it is finally morning.  Also with fibro, the quality of sleep is disturbed because we don’t go through the deep sleep stage.  It means even if I could sleep for eight hours solid, I wouldn’t wake up refreshed.

But lately I have been having quite a time with dreaming and doing weird stuff in my sleep.  It’s getting to the stage where I fear going to sleep at night, not because it’s nasty, traumatic stuff.  It’s just plain weird.  And I’m not eating thirty-inch pizzas (like Snoopy) before bed either.  I have a reputation for both sleep talking and sleep punching the other person I am sleeping with.  There appears to be no reason for it and while the talking often wakes me up, I have never woken up when I’ve hit the other person and have no memory doing it.  Now I sleep alone.  That solves that problem for now but I regularly wake myself up talking.

A few weeks ago I woke up as I was getting out of bed.  All I remember is that I needed to get into a large cardboard box at the end of the bed (BTW in reality there was no box at the end of the bed).  Don’t ask me why.  I have no idea but I was half way out of bed when I woke.  Also, I have a very special teddy bear that I sleep with and a few nights ago I woke to find myself trying to pull Ted’s head off.  Thankfully I didn’t succeed.  I’d be devastated.  In my sleep though I know I had to take something out of a cylinder and I was pulling it, but in reality I was doing my best to rip Ted’s head off.

Image courtesy of FreeDigitalPhotos.net 

I keep doing these weird things.  I wonder what else I do, when I don’t wake myself up in the process.  Do I drive to McDonald’s for a shake in the middle of the night?  I have no evidence to suggest that and I very much hope not.  I have never found myself outside of the house thankfully.  One thing I know now is that it is definitely not safe to sleep with me.  Future partners be warned!

Am I alone in this?  Do you do stuff in your sleep or wake to find yourself doing strange things?  As far as I know I did nothing like this as a child, it seems to be something I’ve grown into.  I very much hope that for the sake of future relationships (even if it is simply my teddy bear) that I grow out of it too.