Lucy In The Sound Dome With Diamonds

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

― A.B. Shepherd, The Beacon

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Scared Of The Dark

Today in New Zealand, is Guy Fawkes Night.  It’s a tradition that is celebrated in a number of countries and has its origins back in 1605 when a man by the name of Guy Fawkes, attempted to blow up the British Parliament.  Apart from the fact that New Zealand is part of the British Commonwealth, I really don’t see why we still ‘celebrate’ it.  Afterall it’s nothing to do with my country is hardly an honourable event.

Celebrations come complete with bonfires and fireworks, and what kiwi child can’t remember their father tying Catherine Wheels to the clothesline, and setting off Skyrockets out of the old glass Fanta bottles?  The fireworks were always pretty but the fear of the noise and fire was overwhelming for me, and I was usually glad it was over.  The bullies after school would set off Double Happy and Tom Thumb firecrackers, throwing them at anyone in the wrong place at the wrong time.  Again, not something I enjoyed.  Thankfully firecrackers are no longer legal.

Nowadays there is a move to official, public firework displays down at our local New Brighton Beach.  I’m quite okay with those, although I don’t ‘do’ crowds so tend to stay away.  Crowds in the dark, with loud explosions, is not my idea of fun, even if it’s professionals out on the sea lighting the fuse.  But still many people choose to let off their own fireworks in their backyards, and last night it seemed that my whole suburb was doing this (perhaps leaving them free to go to the official display tonight).

Yesterday wasn’t one of my better days.  Actually on the fibromyalgia front, it was a pretty good day (finally) but there were a few emotional triggers, a few ghosts from the past,  that set off several (private thankfully) meltdowns of tears.  It was one of those days I didn’t want to be awake anymore so headed to bed early.  Unfortunately at the same time my suburb was letting off fireworks.

See?   I can admit it.  I’m scared of the dark.  Actually I wasn’t as a child, but as life has gone on and trauma has come my way I have come to dread the dark.  I simply don’t like not being able to see what is around me.  I need to be able to see if there are any threats to my safety or sanity.  Some nights are better than others but last night was one of those where I was sleeping with the light on.  What’s more I couldn’t bring myself to close my eyes.  I desperately needed to see.  That doesn’t help in the getting to sleep process.

As I lay there, trying to go to sleep, fireworks were exploding nearby sending both light (through the curtains) and noise into the room.  I was anything but relaxed.  I knew it was probably a window of about half an hour (as it went dark outside) that the fireworks would continue.  I grit my teeth (don’t tell my dentist) and sat it out.

“Someone once told me that none of us are actually afraid of the dark; we’re scared of what it conceals from us. We’re afraid of having something with the potential to hurt us standing right before our eyes and no registering it as a threat. People can be like that too.”

– Unknown

For me, these words are quite accurate.  I wasn’t scared of the dark as a child and generally wasn’t an anxious child.  I’m 48 years old now and I struggle to sleep in  the dark.  Even my darling L (who, by the way,  turns three next week) sleeps in the dark, with an occasional visit from mum.  But not me.  I go through stages of needing a light on somewhere, but right now it’s not a good stage.

I have learned what the dark contains, and what is hidden in the shadows.  I have learnt that there are people and things that can hurt me.  I have only just got over the whole ‘earthquakes in the dark‘ thing that has been hitting my city for three years now.  Imagine a 7.1 quake in the dark if you can, and you soon learn of what you are scared.

More recently though I have discovered there were people standing right beside me, that were a threat to me… but I had no idea for far too long.  They were there to abuse me, and lie to me, determined to ‘play’ with me and perhaps even destroy me… and I had no idea.  Let me be clear.  I knew they were there, but I had no idea they were such a terrible threat to me.

That’s why I’m scared of the dark.  I need to know what, and who is there.  I can’t close my eyes because I might miss their approach.  Now that I know of their existence and threat, I can do (and have done) what I can to protect myself.  But trauma has visited me again, and I remain fearful of anything else that might seek to harm me.

I have some work to do, but meanwhile the light stays on.

“There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.” 

— Laurell K. Hamilton (Mistral’s Kiss (Merry Gentry, #5))

Hurtling In CyberSpace

This post was removed on 30 December 2012.

But I still want to finish with a wonderful piece of music, shared with me by my good friends at Bullying Is For Losers  It’s a message I needed to hear yesterday, and will probably need to keep listening to.  I’m not going to hide my True Colours.  Somehow I’m going to find a way through this.

Illustrating Stigma

I saw this after I had posted earlier and it illustrates the problem of stigma I discussed in Demolishing Stigma.  It is from a wonderful kiwi-based Facebook page called Trying God’s Patience.

Image credit: FB-Trying God’s Patience

Is It Just Me?

Image via

Is it just me?  Am I the only one who feels like I’m stalking people?  That is probably near the worst of things I personally could do to some other human being, and I accept that my reluctance to ‘stalk’, or even ‘follow’ has been heavily influenced by those who had no hesitation to stalk me.

It’s not a nice experience being stalked.  Being followed, watched, talked about, threatened, generally unable to live your own life without knowing full well that everything I do is noted.  I had a shadow hanging over me.  Actually I had two shadows and that just made the intensity greater.

Image representing Twitter as depicted in Crun...
Image via CrunchBase

Recently I (finally) signed up with Twitter.  This is a big step for me.  I knew it would be good to get my blog further out into the wider world but had been putting off the big step for a while.  It took me forever to join Facebook, as a few of my in-real-life friends can tell you.  I only joined because one friend was constantly on at me that this would be a great way for us to stay in touch (we don’t live near each other).  The ironic thing though is that it hasn’t really worked that way.  Sure, she sees my posts and I see hers, I see what she likes and she (I guess) sees what I like.  I see updated photos of her kids and that’s nice.  I can’t believe how fast they grow.  But that’s about it.  We really don’t communicate directly with each other much.  And I have to admit that lack of direct communication, coupled with the ability to simply watch is a little off-putting for me.  Probably some of that is just that neither of us have the time.  I think that’s okay because our lives have headed in different directions that are perhaps hard for the other to comprehend, but I still feel a little sad that it didn’t turn out like it was promised.

Image representing Facebook as depicted in Cru...
Image via CrunchBase

That aside though, joining Facebook was a good thing for me, and as well as putting me back in contact with people from the past, it has also given me the opportunity to ‘meet’ a whole lot of other people who have become very special to me (even though we have never met).  It also enabled me to get involved in mental health support groups.  This was very important in continuing to work on my own recovery as well as now being able to help others.Unfortunately, because I now run two groups on Facebook, I regularly come across trolls, or people who create a false identity in order to create chaos in social media sites.  The chaos that is caused by these people, and I’ve had a few who were expert in their field, puts me off the whole Facebook thing entirely.  I’m not about to leave Facebook because the good outweighs the bad, but it reminds me daily that we don’t really know who we are interacting with across the internet.  Really nothing much can prove an internet identity and I am constantly wary.  Gut feeling counts for a lot but even then, a couple of times I have been badly wrong.

So now I enter into the world of Twitter.  Three days on, and I am following 12 people and I am getting tired already of being asked to follow the New Zealand All Blacks (our national rugby team).  I’m a rare kiwi in that I am not interested in their every move but I suspect Twitter is going to keep asking me to follow them.  No!  Back to the point though, I have this feeling in my stomach that I am stalking those 12 I have followed.  They didn’t give me permission to ‘follow’ them.  I just chose to.  I know what it is like to be followed and frankly I’m not comfortable with it.

The other side is, of course, that while only one is following me so far, I am kind of relieved.  Don’t get me wrong.  If you are a friend I am happy for you to follow me but… maybe if Twitter could just use a different term I might feel more comfortable.  There is also a reverse to this that I must confess.  One person is following me!  Wow! How many people on Twitter have only one follower?  How sad is that?  I know, I know, I can’t be satisfied either way.

(And don’t get me wrong.  I want to interact with both friends and yet-to-be-friends through social media.  It’s just that this voice of caution is always sitting on my shoulder.  I’m also not afraid of anyone in particular.  It’s simply a cloud of, perhaps, irrational fear generated from years of looking over that shoulder.)

I’m going to say this although I fear what your reaction might be.  This bind of not wanting to be followed, yet wanted to be followed is something that happens with real stalking too, and I am only too well aware of it.  Not for one moment would I suggest that being stalked is a pleasant experience because it’s anything but.  Somewhere deep inside, for someone who was full of self hate and doubt, the concept that someone (or two) thought I was worth stalking really did my head in.  When I felt unloved by others in my life there was this tiny voice that said ‘well, they will love you’.  Sick as it is, and I hate it immensely, it’s just one of the many ways that stalking really gets to you.  It becomes impossible to know what is real and what is not.  And they didn’t really love me.  It was an obsession that was anything but love, but the mind plays powerful games.

But again, back to Twitter. 🙂

What do I do?  I don’t like the idea of people knowing what I’m doing, without me knowing that they are watching.  Would I be better forgetting Twitter?  Or should I stick it out?  Is it just me?  Even though I have come a million miles forward to recovery from my lengthy stalking experience, am I just letting it trip me up?  If you have any thoughts on this I would love to hear them.  I need some rational input into what is perhaps slightly irrational.

Meanwhile, my Twitter account is set up and my blog posts are going there, but do I feel comfortable? Not entirely.

Image representing Skype as depicted in CrunchBase
Image via CrunchBase

PS.  I should add that Skype totally does my head in too, although I can see benefits.  The idea of someone, not physically with me, being able to see me sitting at my computer?  No, that’s way to freaky for me.  No doubt though, like Facebook and Twitter, eventually I will give in to this when I someone gives me a good enough reason to abandon such founded but still irrational fear.

All that said, I don’t find WordPress is a problem, so maybe it is all just irrational.

I’m re-training my mind!
Image via FB – A Beautiful Mess Inside

Courage Required

I’m coming to the conclusion that Eleanor Roosevelt was a wise lady.  We need as many of those as we can get.

I’m having a ‘moment’ where my head is way to full to write.  There are lots of things to write about, including a number more Awards, but the family related stuff going on for me is almost paralysing my ability to do much.  It’s very frustrating to feel like my hands are tied, and what I really need is to find the courage to do the things I need to do, say the things I need to say… and get moving again.  You can do this Cate!

Slightly Overwhelmed

Pooh! (Photo credit: mikewoods)

“Don’t underestimate the value of Doing Nothing, of just going along,
listening to all the things you can’t hear, and not bothering.”

 ~Pooh’s Little Instruction Book, inspired by A.A. Milne

Someone (not one of my blogger friends) recently commented that I would be best to get off my ‘bottom’, find myself a job… and then everything would be fine.  Actually the ‘instruction’  was a bit longer than that but you get the idea hopefully.  Right here and now I will say that I would love to have a job, be able to work again for 40+ hours per week, to feel like I was really achieving something, let alone contributing something to the world.  Oh and the money would be great too.  I won’t go into the finer details but existing on next to nothing, courtesy of my Government, is not nice.  If you think it’s a great way to live, you’re demented.  If you think it’s a breeze, you’re fooling yourself.

The thing is that if I could work I would, but my body just ain’t up to it (and I don’t think that person appreciated that fact).  My mental health is better than it has been for years.  I’m a little reluctant to say that anywhere because as soon as I do, I’m scared I’m in for a giant fall.  It’s true though.  I had the hardest year ever last year, but all of it taught me something about living one day at a time (or one hour at a time when appropriate).  Actually I’m quite proud of myself for coming out the other side, but rather pissed that my body is just not up to it now.

Now that my mind is doing better I have been motivated to take on all sorts of things, to feel passionate (check out my Passions Profile Challenge that I’m half way through) about things, believe in things, want them to change.  To be honest, I’ve spent years doing nothing.  My head was just not in a space to be able to do anything.  It wasn’t about being lazy, but rather about simply not being capable.  It’s just what mental illness does to you (and me).

So I have all these things I have involved myself in… and now I’m feeling slightly overwhelmed.  I have mountains of new posts to (write and) read, because I want to follow everyone’s blogs.  It’s not about being nice or anything, but rather about wanting to absorb what others think and feel.  And why not, after so many years of not being able to?  Years of not caring.

I have things I have committed myself to, which mostly involve supporting other people with mental illness.  I feel very strongly about this and it is a priority.  But what do I do when my body won’t keep up?  I’ve always been an all or nothing kind of girl and it’s so hard to operate at less than 100%.  I think I’m operating at about 60% right now and I hate that.  I’ve missed so many years of life (for want of a better word) and I want to catch up, I want to run (figuratively).

When I was diagnosed with Fibromyalgia (a few months back) I was told I needed to cut back on stress.  The stress of last year was highly likely to be a major reason why I landed this illness.  Actually I was told a similar thing the year before when I was diagnosed with the auto-immune condition Graves’ Disease, but sometimes we don’t have much control over what gets thrown our way.

So it should be easy.  Cut back on what I’m doing, get more sleep and let my body do whatever it wants to do (it’s still beyond me when it hurts and when it doesn’t).  But let me throw in this one.  If I cut back on the things I am doing, and the involvement I have in things that are important to me, then I take an enormous risk with my mental health.  Activity does not spare us from mental illness but I know full well after many years at this ‘game’ that if I do less, and I am involved less, then my mood takes a dramatic dive for the worse.

I am so scared that if I ease off as much as my body needs, my mind will react and implode.  It’s just what I know happens for me.  My depression will spike again, and that will cause my Borderline Personality Disorder (BPD) symptoms to start rearing their head.  Oh, and I also know that if my mood drops I run the risk of having problems with my eating disorder again.  I can already feel this creeping in.  I could also continue down the spiral to self harm and suicidal ideas.  I really don’t want to go there.  I’ve been there with all of this, and actually my initial depression and mental illness started when I had Glandular Fever, and my body wasn’t letting me do what I needed to.

If anyone says “it’s not that bad”, I swear I will scream because this is a very real fear.  And I doubt it’s just me that has this fear, when their body says ‘no’.  It’s just I’ve had nearly 20 years of fighting for my life (literally), trying to get my mind back.  It’s back now (although obviously I still have difficulties with some stuff) and I feel like I’m in charge now.  Except my body as objected and said it wants to take over.  It just can’t do the job I need it to do.

Meanwhile I have mountains to do, to read, to write, to say, to contribute… but I know I have to do it all one half day at a time.  I am just slightly overwhelmed by it.

“Sometimes it’s important to work for that pot of gold.  But other times
it’s essential to take time off and to make sure that your most important
decision in the day simply consists of choosing which
color to slide down on the rainbow.”

~Douglas Pagels, These Are the Gifts I’d Like to Give to You