Cure Me, I’m Depressed

Recently I had the opportunity to watch the UK television documentary Cure Me, I’m Gay in which a gay doctor (Dr Christian Jessen) subjects himself to a whole range of treatments and therapies designed to cure homesexuality.  Wow!  I chose to watch it because I find it interesting that some people can see their role as to judge others (who are doing no harm to anyone else).  Personally I find it sad, but that’s me.  I know many people will disagree with me, and that’s okay too (although it’s not really the point of this post).

Let me be clear that no one has ever seen the need to, or tried to cure my sexuality (that they told me anyway) but they have tried to cure my spirituality.  As I watched the Cure Me, I’m Gay programme there were elements of familiarity that sprung up unexpectedly for me.  I realised that back when I was first being diagnosed with mental illness, in some ways I was put on a journey of ‘Cure Me, I’m Depressed‘.  It was all seeming a little familiar to me when I watched the last ‘treatment‘ that Dr Jessen underwent.  That of exorcism of evil spirits and demons.

I should add that at the age of about 15 I witnessed an exorcism of demons from a girlfriend.  I wasn’t meant to be there (judged too young to see such things) but circumstances determined that I had no choice.  The Christian people praying for this were doing so because they believed a demon was the cause of her chronic suicidal thoughts and self harm.  What happened that night was dramatic and downright terrifying for 15 year old me to watch, especially when it was my friend it was being ‘done to‘.  It was something I will never forget, and frankly wished right then that I didn’t have to watch.   Did it work?  Others there told me it did but I had no knowledge on which to base a conclusion.  That said, my friend is alive and well today and eventually overcame that part of her life.

The apparent existence of evil spirits and demons in my life was seen by some as the root cause of my depression.  I should add that I was also being treated for Anorexia Nervosa and Post traumatic Stress Disorder (PTSD) but most people (including those who were taking this approach) were either not aware of that or ignored it.  I might have been literally skin and bone but mostly this was either ignored or actually praised (many thought and said that I looked great and that my diet and exercise regime must be working really well). I suspect they would have had a field day if they’d known of the other issues.

So the focus was on the depression.  As I’ve said before, I was an active Christian at the time and had grown up in a Christian family (although it wasn’t my family that were involved with this search for answers to my decline in mental health).  I knew very well that there were many people praying for me, although I had little idea of what most were actually praying for.  I appreciated their commitment (mostly) but left them to it.  I had no desire to join this prayer effort.  At the time I was sure that nothing, including prayer, would save me.  I simply knew that for many Christians to be able to tell a person that they are praying for them, absolved them of any other responsibility (is that too harsh?) and also put their mind at ease.  They’ve done something to help.  They don’t feel quite so helpless.

My (soon-to-be husband) was very anxious to find a spiritual reason for my illness (the cynical me would suggest that he took this approach to get the heat off his role) and arranged for me to see a Catholic (BTW I was not Catholic) priest who was well known in the city where we lived for having a “successful healing ministry”.  There were about five people in the room including this priest.  Before they prayed I was asked many questions in their attempt to understand the evil forces that were apparently in my life.  They were keen to know how I had sinned and how I might have let ‘the Devil‘ into my life.  They eventually found no reason why there should be such forces in my life until they started to question me about my family background.

The short story is that my grandfather had been part of the Freemasons during his life (by this stage he had died and actually I don’t think he was a part of this organisation during my lifetime).  Some Christian people believe that the Freemasons are some type of secret, evil religion and according to the people I was with that day, they were a completely evil influence.

I was told that it was my grandfather’s fault that I had Depression, and from memory I think they prayed for me that ‘the evil spirits let into my life by my grandfather‘ would be gone.  There was so dramatic exorcism this time, maybe because I was sitting thinking  ‘how the heck can my grandfather who loved me and would never, ever have done anything to hurt me… cause this?’  My heart was definitely not in what they were doing, and no doubt if I went back and questioned why I wasn’t healed of Depression, it would have been my fault.

I don’t believe for a minute that my grandfather contributed in any way to my mental illness.  He would have been devastated to be blamed for my suffering.  Furthermore I think it’s sad that they searched until they had something to hang a nail on, but never once asked me anything that might have lead to the real reasons for my mental illness.

While I do believe that there can be a spiritual element to mental illness, I don’t and never did, believe that to be the case for me.  At the time I probably couldn’t put words to the reasons for my emerging mental illness, it took years before I could even begin to find words.  Now that I have a much better understanding of my illness, I know it was nothing to do with spiritual forces and more importantly nothing to do with my grandfather.  They were grasping at straws, and in my mind were doing so dangerously.

Much like the documentary on homosexuality where ‘therapists’ seemed to be grasping a straws too.  Homsexuality was apparently caused by sin and/or abuse.  It all leaves me sad for those who must carry the weight of those straws.

Postscript
While I was an active Christian for more than half my life, I have since removed myself from any organised religion mostly because of my experience as a person with a mental illness trying to be find a place I would fit.   I still hold Christian beliefs but they are personal, and I have no desire to push them onto anyone else.

I see my own spirituality as a personal expression of belief and I respect whatever beliefs you may or may not have as your right.  All that said, I write about my experiences such as that above, because it has been a major influence in my life and I admit, some of the force behind my illness.  It’s not something I want to deny.  Nor do I have much desire to get into a criticism of beliefs different to my own.  I hope that I have largely avoided that here.  It is simply that what I have  labelled the ‘Cure Me, I’m Depressed‘ approach to my mental illness did not work for me.  That said, if a similar approach has worked for others then I am happy for them.

Who’s Going To Look After Me?

Who’s going to look after me?  Well, I guess that’s Me!

(If you’ve got this far then you’ve got the answer now, so if you choose to skip the rest of the post below, I’ll understand ;-) )

I live on my own and have done so for a while now.  Actually to many people’s surprise, I like it that way.  And I’ve learnt how to look after me, simply because there is no one else who is going to do it.  That means that I know how to do many things that others assume need two people.  Chronic illness (and low income) mean I know how to fend for myself with whatever is in the house, and whatever is missing.  Sure, sometimes it would be nice to have someone look after me, but I don’t need it.  And that is a huge advantage in my life as it is right now.

Today was one of those days where I woke up immediately knowing that fibromyalgia was here for a visit.  With an anthem of Beethoven’s Ode to Joy ringing in my ears (thanks to the still ever-present music hallucinations) I can’t say I was overly enthused about the day.  Played once is lovely but when it’s gone on repetitively for about 30 times, any music turns to beyond ugly.

Add to that, a feeling around my head that brain fog was back (oh yay!) and my body feeling the presence of a hundred rocks and shards of broken glass.  Nothing was looking good, although I don’t want to misrepresent things.  There are plenty of days which are worse, I just knew that today I needed to rest.  Otherwise bad would probably become worse.

As usual there were things that weren’t going to happen.  Perhaps most important (to J anyway) was that I wasn’t going to get my nephew’s birthday present wrapped and posted in time for his birthday on Saturday.  Sorry J.

And the usual support I give to another human being most days, was also not going to happen.  She’s used to this.  She doesn’t necessarily understand the existence of chronic illness in my life but she knows the consequences for her.  And that’s what matters in her world.

I rang and made my apologies.  Right now is the time I most need to hold onto looking after me.  It would be very easy to give in, regardless of how bad I feel, when I hear on the other end of the phone:

What About Me?

followed shortly after by

Who’s Going To Look After Me?

Those are really hard questions to answer, especially when you’ve had almost a lifetime of wonky learning that I have had to re-learn for myself with many hours of therapy and self-talk.  I should stick in right here that actually there wasn’t necessarily anything wrong with the teaching I got.  It simply wasn’t detailed enough.  You see I learnt half the message, and more often than not, failed to get the important part.  While I don’t have children and so I don’t know a whole heap about teaching them, it strikes me that many times something I needed to learn as a child was simplified so much that I entirely missed the point.

I’m not blaming anyone for this. It just happened.  I missed the point so many times, but I know many children taught the same lesson, got it.  Maybe I just learn differently.  Maybe I just needed more specifics.  Maybe… anything.  It’s simply that what I got in the way of teaching didn’t work for me.

One of the things I learnt, rightly or wrongly, was to put other people ahead of myself.  My lessons with Christian based and there is plenty in the Bible that I could misinterpret to believe (as a child) that everyone else was more important than me.  This isn’t a biblical post so I’m not going to get into what the lesson really was meant to be.  What matters is what I learnt.  Anyone on this planet was more important than me and I had to put their needs first.  It’s just a shame that no one realised how wrong I had got this.

While I’ve now learnt that I matter and that I need to take care of myself, the damage was done and in spite of many hours therapy, and many hours talking to the person who taught me as a child, if I’m not careful I still find my thoughts going back to putting everybody else first.  It’s nothing to do with selflessness either.  Just me not realising that my needs mattered.  Actually the line I learnt (from a Sunday School song) was “Jesus first, Yourself last and Others in between”.  It spelt J-O-Y and I was under the impression that I would be happy if I put myself last.  It is still very firmly stuck in my mind, and I have to consciously change my thinking.  It’s really no wonder that I ended up deeply depressed years later.

So today when the question “Who’s going to look after me?” came through the telephone I had to consciously stop myself from leaping to look after her.  I had to put my needs first, and I know that if I hadn’t it would be longer before I could be back to her.

Maybe it seems so simple, and I know there have been a few therapists in my time who didn’t seem to understand how much I had this stuck in my mind.  I guess when I learnt this as a child, even though I got it wrong, I held onto it.  Tight.  So much so that many years later, it is a constant battle in my head to change that almost automatic thinking.

Today I’m looking after me.  Tomorrow I will be too.  And for the third person in this post?  I left her with a few ideas of how she could care for herself today.

“If I had my child to raise all over again,
I’d finger paint more, and point the finger less.
I’d do less correcting, and more connecting.
I’d take my eyes off my watch, and watch with my eyes.
I would care to know less, and know to care more.
I’d take more hikes and fly more kites.
I’d stop playing serious, and seriously play.
I’d run through more fields, and gaze at more stars.
I’d do more hugging, and less tugging.
I would be firm less often, and affirm much more.
I’d build self esteem first, and the house later.
I’d teach less about the love of power, and more about the power of love.” 

— Diane Loomans

 

Going Around In Circles

For a while now this song has been going around in my head.  My head has been going around in circles.  It’s getting tiring.  I just want it to stop.  I just want some clarity about what do I do now.

 

“Oh, Delilah Blue, what do we do now? What do we do now?
Magnolia memories fill my eyes and the sweet bird of youth done flown away
But don’t let anybody ever say
This old dancer never had her day
’cause this old dancer always knew we’d make it through, Delilah Blue.”

There is a growing amount of stress in my mind.  It’s caused by a number of things.  Health, wealth (or absence of it), family, oh and let’s not forget life in general.  Admittedly the first three are perhaps giving the biggest stress, and then because the stress grows inside my head, it eventually becomes a case of everything.  Everything has my head turning in circles, and it don’t feel too good.  It’s time to take some action on the things that I still have a little control over.  Maybe that will make the uncontrollable things seem less daunting.

Some of you might know that I started another blog recently.  If you didn’t know, it’s just that I hadn’t got to you yet.  For those that did know, the blog no longer exists.  I quickly realised that it wasn’t going to serve the needs I had.  Everything is now gone, so if you missed my most recent posts there, then you’ve missed.  Apologies if you think I messed you around.  That wasn’t my intention.  It’s just sometimes it’s easy to see that “this ain’t going to work“.  It didn’t.

For those of you who didn’t know I started a new blog, life goes on as it was.  In time, I may (or then again, may not) publish the material from there on here.  Meanwhile I’m still answering my question “what do we do now?“.

Back to the real purpose of this post though.  There’s one thing I really hate and that’s not being in control.  I spent years with an eating disorder all about that issue.  I couldn’t control aspects of my life so I chose to control how little food I put in my mouth and how many hours exercise I did each day.  So I know control has the potential to bite me (excuse the pun).  Not just on food though, I know it has the potential to destroy me… if I let it.

I seem to have little control over my physical health right now.  I have got into a pattern of going from (fibromyalgia) flare to flare, with nothing in between.  Where are the good days?  They don’t happen and still having not resolved the issue of pain medication, it isn’t fun and it’s doing my head in.

Wealth?  Well most of us have that issue don’t we?  Especially if having to rely on government welfare.  Especially having to face medical costs.  I guess I find winter even harder for the wealth issue, thanks for power bills.  A house that constantly leaks warm air (thanks for earthquake damage) is not helping.  I seriously considered this week shifting myself entirely into just one room of the house.  Impractical as it was, I was reminded of a children’s story I loved when growing up.  The main character broke her back and was shifted, bed and all, into the family lounge so that she could be part of the family.  Considering this for myself left me unsure whether I wanted to laugh or cry.  Anyway, I didn’t do it.

And as for family?  Sometimes, and more often than not right now, I feel exceptionally helpless.  I can watch but can do so little.  This week I have felt incredibly alone with this burden.  Loving someone but not being able to make it better, hurts like hell. And it seems like when I’m not there because of my own health, their health suffers too.   It’s a lonely road, and I know there are few answers that I can actually make happen.  I just have to be there, and often that’s harder than anything.  I guess my family had to watch me fade from their eyes for what was a very long time (thankfully I eventually came back).  I think what I feel now is a little like that.  Watching someone fade.

It hurts.

“Are the days of winter sunshine just as sad for you, too? When it is misty, in the evenings, and I am out walking by myself, it seems to me that the rain is falling through my heart and causing it to crumble into ruins.”

— Gustave Flaubert

 

Time To Call In The Troops (aka I Can ‘Do’ Tough!)

These troops are on their way from Space as you read. http://upload.wikimedia.org/wikipedia/commons/3/3e/Teddies_in_Space.jpg By Cambridge University Spaceflight (University of Cambridge Department of Engineering) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

These troops are on their way from Space as you read.
By Cambridge University Spaceflight (University of Cambridge Department of Engineering) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

Whether you have a chronic physical illness, a mental illness, or whether you’re just ploughing through life keeping one foot in front of the other, and your head above water… sometimes it’s time to realise that just perhaps… it’s time to call in the troops.

Sometimes I’m a little slow to realise that the time has come.  Sometimes I think I can just keep plodding on by myself and “I’ll be okay“.  Sometimes I’m standing, gazing at the sky, wondering just when the troops are going to arrive.  It doesn’t matter that I haven’t called them, I just assume that somehow, magically, they will know I need them and come running (or flying in the case of the image above).

Other times I get a whack in the side of head and realise that unless I ask, it just won’t happen.

And vague mentions of stress are not enough.  When I finally work that one out and actually specify to someone who can help that I need their help… then I’m finally getting somewhere.

That whack in the side of the head (not literal) came yesterday and today, I asked for help.  I called in the troops.

Just in case you haven’t got it yet, that is a major accomplishment for me.

Yesterday I walked away from a situation in tears, out of sadness for a person I love, and an inability to know how to make a positive difference in that person’s life.  I wasn’t even sure it was possible, but meanwhile I felt helpless and frustrated.  Aside from the other person’s needs, I could feel my own stress levels had skyrocketed again.  Again, because I was going through the same helplessness and frustration day in, day out.  And it wasn’t getting any better.  If anything it was getting worse.  What’s more it was something I simply couldn’t run away from (although you can bet I considered it).

I realised that I could sit, feeling helpless and frustrated, hoping that someone would come along one day and help me… but I knew (finally) what wouldn’t happen.  The help wouldn’t come (certainly not magically) and I would simply get sicker, both mentally and physically, as my stress levels continued to rise.  I finally realised that I had to find a way of getting help for myself before I become helpless, not to mention hopeless.  I know myself well enough to know that I walk a very fine line.  It doesn’t take much to tip the balance and end up in despair, depression and hopelessness.

So with all this wise thinking on board, today I went out to ask for help.  It turned out not to be quite the help I was hoping for.  It seemed that bureaucracy got in the way.  Doesn’t it always?  But almost miraculously (maybe that’s going over the top) I got enough help to change my mindset, and actually that’s what I think is the exciting part of all this.

Somehow literally walking down the street and into an office to ask for help, lifted the feeling of helplessness and hopelessness.  Even though the person I spoke to saw me for maybe five minutes at the most, I realised I wasn’t helpless.  Actually I have a hard task ahead of me.  One I would rather not have.  But I’ve got it and today I’ve been able to suck it up and really accept this role.  I’m not helpless and the situation is not without hope (although definitely pretty bleak).  It’s just tough.  But I can ‘do‘ tough.

No one said this to me.  I just got the message myself.  Sometimes weird things happen that way and we find our own strength to do what’s needed.  Somehow by going out to look for help from another source, even though I didn’t get exactly what I was looking for, I did get what I need.  I really hope that’s not too confusing.

Today’s quote might seem like it’s not really relevant, but actually it is totally relevant to my situation and my effort today to take back some control in my life.  If it only means something to me, then that’s okay.  Perhaps the relevance is contained in the parts I couldn’t share.  My apologies.

“The death of democracy is not likely to be an assassination from ambush.  It will be a slow extinction from apathy, indifference, and undernourishment.”

 - Robert Hutchins

 

Flared

Today is day two of my latest fibromyalgia flare.  There seems to be less and less space between one flare to the next.  Actually I’d go so far as to suggest that I have had a bad case of brain fog (it usually partners a flare) for at least a month. I am shamed to admit that the other day I couldn’t do a three-year old’s jigsaw puzzle for the life of me.  My niece, L was keen for me to ‘participate’. I realised quickly that what she was after was for me to do the puzzle and she would ‘assist’.  Hmm.  The only problem with her plan was that I had absolutely no clue what I was doing. My brain was out to lunch.

Eventually L’s father, who was watching this, came to my rescue.  Brothers are so good… when they want to be.  Anyway he had the puzzle sorted in a matter of moments and while I quietly swore at brain fog, I was equally glad that L’s teenaged brothers hadn’t arrived home from school yet. They would have loved that Aunty Cate couldn’t do a three-year old’s puzzle.  They laugh enough when they have to show me how to use my phone.  If it’s not too late I might have to take out a confidentiality contract with L and her Dad.

But back to the flare. I’m used to these.  More often than not they spring up unannounced and unwelcome when there is something going on in my head. No wonder I get fog, there’s simply not enough space in my head.

Today has been Mothers Day here, and I admit it is always a difficult day for me. Last year I skipped the issue by being on the other side of the planet.  Not so easy this year.

I’m not a mother. Never have been, never will be. Aside from pets and the odd ( not that odd) teddy bear.  And don’t think I’m somehow mourning for the mother I am not. I’m not. I am perfectly satisfied with having opted not to have children.  Actually I am relieved I saw sense at another time when my brain simply wasn’t working.

What is difficult for me is my own relationship with my mother. Out of respect for her, I’m not going to go into details except to say that we have always had a difficult relationship.  We have impacted each other’s lives in ways we probably didn’t intend and possibly regret.   At this stage it is something that I don’t expect we can ever resolve for a number of reasons.  It just is.

Actually my mother, at 86, relies on me a lot now. A situation I would never have imagined, but then sometimes life has surprises for us along the way.  I am the person she most relies on, and just as that’s not easy for me, I don’t imagine for one instance that it is easy for her either.  We simply go on from day to day, doing what has to be done.  Personally I think that is more important than grand gestures.

But I draw the line at Mothers Day. It’s not the occasion itself but more the hype.  As we fill lives and screens with pink sparkly images of perfection… Me? I cringe.  Perfection is not always what is real, and it seems to me that we are more able to accept that not every father is perfect than every mother being less than the ideal.  The hype, drummed up by marketers usually, ignores what is real.

I don’t in any way want to be critical of any mother, including mine. I simply think we need to be real. Mothers Day for me today meant picking my mother up after her church service, as I always do, and then back to her home for a shared lunch. Mothers Day wasn’t mentioned.  If that makes me a cruel, heartless daughter, then so be it.

The cost, of course, for me bas been this latest flare. The rest of the day has been spent in bed in a lot of pain. I hope it will ease tomorrow.

“She preferred imaginary heroes to real ones, because when tired of them, the former could be shut up in the tin kitchen till called for, and the latter were less manageable.” 

― Louisa May Alcott, Little Women

Whatever Happened To Lucy?

Remember my post Lucy In The Sound Dome With Diamonds from just over a month ago?  Lucy (that’s me!) was waiting to see a specialist after being told she probably had a tumour being played out in music hallucinations.  Yes, that’s right, a tumour on either my ear drum or my brain.  I had a whole list of other symptoms which I had no idea whether or not they were connected.  Thanks to one of my brothers I finally found a way to be seen by a specialist.  This specialist was an Otolaryngologist (I can’t even say that, let alone spell it!), which means a Head and Neck Surgeon, including the better known Ear, Nose and Throat.

I admit that the night before my appointment I was perusing websites selling hats.  I had, by the time I had nearly three months of hallucinations, convinced myself that I was going to need surgery and what’s more I was going to lose my hair.  All of my hair.

The good news is I’m not losing my hair, but I have decided that hats would be a good look for winter (fast approaching) anyway.

Instead of answering the question I desperately wanted to know, the specialist started off on what I thought were the minor but annoying symptoms – dizziness, nausea, loss of balance not to mention more dizziness again.  I could hardly stand up straight.  By looking at my eyes (it’s a while since anyone has been looking into my eyes!  He had to stand on his tip toes to do so.) while dizziness was induced, he could apparently tell that something was going on with my ears that usually happens after brain injury.  No brain injury here and he couldn’t tell why it had happened to me.  He simply manipulated my head in all sorts of strange directions and sent me into a spin like no spin has ever been.  I admit I swore…  the room was spinning so fast.  He ignored my colourful language and insisted that I keep my head where he’d left it for another 20 seconds.  Easy for him to say.  …and apparently it was fixed, as long as I slept half sitting up for a couple of nights.

But onto the important stuff.  The supposed tumour.  He had an old MRI from a few years ago which apparently told him I was tumour free. It’s still beyond me how an old MRI can tell him how I am now, but the fact that I didn’t have to fork out for another MRI was good.  And he gave every impression of knowing what he was talking about.   He seemed to be one of those doctors who are very knowledgeable but a lacked a little in terms of sharing that knowledge with the patient.  Actually he appeared to be getting tired of my questions, but for the money I was paying why shouldn’t I ask a question or six?

That’s the good news anyway, and don’t get me wrong I am very happy to be tumour free.

But the bad news now.  It may seem like there could be no bad news. After all, tumour-free is fantastic.  But I still needed an answer as to what was causing the music blaring in my ears most hours of the day.  It might not sound that bad to you, but it is like a form of torture and my biggest fear was that I would be told I just had to live with it… forever.

The music hallucinations are apparently being caused as a side effect of the pain medication I use for Fibromyalgia.  It has taken two years to find a medication I could use (in this case, Codeine), and now I can’t use it.  What’s more he was quick to add that the only other pain medication I had been able to use (Tramadol) is also likely to cause the same side effect.  In other words, I can’t use either.

Understandably the specialist wasn’t an expert on pain and so has sent me back to my usual doctor to work out what I do now, but it looks very much like I am back to only being able to use over-the-counter medication,  which does nothing.  Lucy is not happy.

Do I want pain?  Or music?  That might seem easy, but I don’t want either.  Maybe I’m expecting too much.

At least I don’t have a tumour.  At least I am not going to lose my hair.  But nor am I going to lose the pain or the music.

But hey, I bought a couple of hats!

“He took his pain and turned it into something beautiful. Into something that people connect to. And that’s what good music does. It speaks to you. It changes you.” 

― Hannah Harrington, Saving June

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Shifting The Goal Posts Is Okay

 

Recently I have seen a  number of statements and general topics on social media formats which show what I see as a resignation by sufferers of mental illnesses to a belief that the point at which they are now is where they’re going to be for life.  Examples of statements include:

“It’s beyond happiness now, I just have to exist”

“Getting better is no longer an option”

“I will be depressed for the rest of my life.”

 

I am the first to say that I have been at that point myself.  Ten years ago I simply believed that happiness was not an option for me, and that yes, how my life was then would be how it always would be.

Nothing took away any sense of hope more than these statements.  Actually there was no hope (in my mind) , and I was simply existing.  If I had read a post like this at all, I would have said “it’s easy for you to say” and probably “you just don’t understand my reality“.

But I honestly believe that it doesn’t have to be this way.  Instead, this is what I believe:

“At any given moment, you have the power to say that this is NOT how the story is going to END”

― M.H.S. Pourri

 Frankly I have as much reason as anyone else to close the book, shut up shop and say “this is how it’s going to be“.  I have two decades of diagnosed mental illnesses.  I have been told repeatedly by doctors, who were ready to give up, that this is just how it’s going to be for me.  I know what it feels like to have no hope.  My family knows too how it is to have no hope for me.

25 years ago I was healthy, relatively happy and quickly climbing my way to the top of the corporate ladder.  My goal was to be Chief Executive.  It’s almost funny to think of that now, because that corporate world I was a part of (and loved) seems so foreign to what my life became just a few years later.  One unexpected bout of ill-health, followed by post-viral depression, and my life just spiralled down from there.

I know now that I’m never going to achieve that career goal.  Actually it’s not what I want anymore either.  But I’m not prepared to settle for nothing.  I don’t want to accept that there is no cure, so that my life will be as it is forever.  And I strongly believe that if I accepted that fate, then I would simply be fulfilling a very bleak prophecy.

Credit: Wikipedia.com

Credit: Wikipedia.com

As you may know, I am a Kiwi.  We New Zealanders take a fair bit of pride in thinking we know more about our national sport, rugby, than we actually do.  I admit from the outset that I’m not a rugby fan (there are a couple of us in the country!) but I know enough to know that sometimes it’s okay to shift the goal posts.

One end of a rugby pitch to the other is a long way, especially if you’re being chased by the entire opposing team.  Just watching them, I know it’s a fair workout from one goal post to the other.  I think it’s 100 metres.

Now think about rugby for school children.  We know that full distance is too far, and so young children play ruby across the field (70 metres).  It just makes sense and it’s realistic.  It’s something they can work at to achieve.

Do you need another example?  Try wheelchair rugby.  It’s one of the toughest team sports I’ve seen.  They play on a basketball court.

It’s the same when you’re learning to swim.  I remember my big goal was to be able to swim the whole length of the pool.  But that was unrealistic for this six year old, and so my first aim was to swim across the width of the pool.  And I was so proud when I did.

I can look back at my life 25 years ago and think I’ll never get to my goal and so I may as well stop right here.  Or I can shift my goal posts and work at something that is achievable, in spite of both my chronic mental and physical illnesses.  That has to be better than sitting feeling feeling I’m doomed… and getting more depressed by the minute.

I know that it’s hard to see beyond mental illness, especially those illnesses that are technically with us for life.  I’ve been pretty sick (thanks fibro!) over the past few weeks and yes, I would find it easy to give up and accept an invalid life.

But I don’t want to.  I don’t know exactly what is ahead of me, or even what is possible, but I have hope for better than I’ve got now.  It’s why I use the blog title I do. Infinite Sadness… or hope? is my expression of choosing  hope over what I have lived with through illness.

I don’t know what ‘getting better‘ looks like.  I don’t know what it is going to involve to get there.  I know that my ‘being better‘ won’t look like the life I had 25 years ago.  That’s just not possible now.  There are so many unknowns and obstacles right now, that it would be so easy to settle for never ‘getting better‘.  While it wouldn’t be comfortable, it would be the easy option.  But I simply can not accept that.  I have to hope that it will be better.

One last thing.  Mental Health Awareness Month begins today (on NZ time zone anyway).  Wouldn’t it be great to have it focussed on hope?  Mental Illness is a terrible thing but I believe that no matter what diagnosis we have, there is hope for all of us.

I strongly believe that this following statement applies as much to the mind as to the heart.

If your heart is broken, make art with the pieces.


― Shane Koyczan (2013)

 

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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What’s Fair?

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

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

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

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

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

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

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

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

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

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

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

Prescriptions And Privacy

About a month ago I saw my doctor, a General Practitioner.  It was just a routine appointment, although it quickly went from routine to fascinating when he said he had been wanting to talk to me.  The result was that after two long years of debating with him my need for adequate pain medication, he finally agreed to prescribe some.

He had previously refused, in spite of acknowledging the level of pain I was experiencing from fibromyalgia, because he believed that my history of mental illness would mean that I would get addicted to the stuff and my mental health would suffer.  One of my arguments was that my mental health was suffering already as a result of the pain I was in on a daily basis.  For some reason unknown to me that argument seemed to count for nothing to him.  It seemed that he didn’t accept it and so was only prepared to let me use over-the-counter medications.  The problem with those is that they did nothing to relieve the pain, perhaps because they are designed to treat a different kind of pain.  Our argument went on over the months.  When I felt I had some fight in me I would raise the issue, but basically he was quite clear that he would never prescribe anything stronger and more appropriate.

Let me say at this point (in case you’re wondering) the easy thing to do would have been to change my doctor.  For me though, that has some difficulties related to my past experiences of doctors.  More about that in a future post… when I’m feeling brave.

In the meantime, what changed my doctor’s mind?  It seems he felt a little backed into a corner.  At an earlier appointment he had arranged for me to have some short-term counselling to deal with a specific unrelated issue that had been affecting my state of mind.  It was only to be six sessions, which always seemed too short, but it was free and it was available.  I had no other options and so I took up the offer.

I had seen the counsellor twice when I went to my doctor a month ago.  That was what my doctor wanted to talk about.  He proceeded to read out to me word-for-word something I had said to the counsellor, on my second visit, about my doctor’s refusal to treat me with pain medication.  I was totally gobsmacked to find that the counsellor was giving my doctor a written report of my counselling sessions.  This was not something I had been told about, nor had I given permission for him to share the details of my sessions with anyone.

That was the end of the counselling sessions.  I guard my privacy carefully and I expect that when speaking to a counsellor or therapist that what I say will remain confidential.  I accept that if I am at risk of hurting either myself or someone else then the counsellor may have to call in emergency services but I could never accept that my doctor needed to hear word-for-word what I said when I was no where near being in a crisis state.

Well that might have been the end of the counselling, but for some reason (he didn’t explain) my doctor didn’t appreciate what I had said to the counsellor, gave me a small lecture about “keeping secrets from him”  (really?) and then handed me a prescription for medication to treat severe pain.  Weird.  It’s like he knew he was discriminating against me and was waiting to see how long he could get away with it.

I finally had my prescription!  Yay!  The only problem is that a month on I declare it totally useless for me.  If my body is anywhere close to horizontal, the medication will put me to sleep (which is one way of dealing with pain) but it does absolutely nothing to take away the pain.  Actually if anything the pain has been worse in the past couple of weeks.  I wonder is he just giving me sugar pills (unlikely, I hope) or just a very small dose?  This coming week I will be going back to my doctor to keep fighting.  I have tried that drug but now I need another.  The fight goes on.

Gotta love doctors (and counsellors) like him.

“Life isn’t as magical here, and you’re not the only one who feels like you don’t belong, or that it’s better somewhere else. But there ARE things worth living for. And the best part is you never know what’s going to happen next.” 

― O.R. Melling, The Summer King