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

Will A Haircut Transform My Life?

Anyone for a haircut? "Image courtesy of [franky242] / FreeDigitalPhotos.net".

Anyone for a haircut?
“Image courtesy of [franky242] / FreeDigitalPhotos.net”.

 Among other things, it has been on my mind this week that I need to get a haircut.  Badly.  I hate getting my haircut.  It’s worse than going to the dentist for me, so even thinking about it is difficult.  Actually I hate it so much that while I know a haircut would improve my appearance, I’m sure it does nothing else for me than raise my anxiety levels, not to mention the trauma of putting myself through the ordeal.  I even wonder if Post Traumatic Stress Disorder (PTSD) is a possibility.

So I was curious when I saw this story was the ‘most shared‘ on Facebook on Veterans Day this past week.  This You Tube clip has been viewed almost 14 million times.  A haircut has gone viral on social media.

Here’s a homeless veteran with a history of alcoholism. He was given a makeover back in September, and the results were scheduled to be released on social media on Veterans Day. It was timed to fit with a campaign to raise funds for veterans (by getting a haircut).  The social agency (Dégagé Ministries) involved happened to also make a substantial amount from donations from the social media activity.

Don’t get me wrong.  I’m really pleased for the man.  He got his haircut, some new clothes including a leather jacker apparently, and he finally got listed for some housing  And he’s started going to AA meetings.  That’s great.  Except I’ve got this nagging sense of ‘there’s something not quite right here‘.  I’m wondering was it the haircut that meant this man finally got some help?

Why does he have to change his appearance in order to hit the big time on social media? He’s still the same person inside.  Why does a trimmed beard and highlighted hair enter him into the great social media hall of fame?  I just don’t get it.  14 million people watched this particular clip but there are plenty of other news sites also carrying the story, and particularly the haircut.

In my mind what matters is the person inside.  His appearance doesn’t count for anything.  Somehow because he put on a tie, he has become acceptable and maybe even ‘one of us’.  I wonder though, how he feels.  Social media are raving about the haircut (as I am, ironically) but who cares about the obviously broken man inside?  That’s what matters, surely.

I could go on about this but really I just wonder, am I the only one who thinks we’ve got something wrong here?  What do you think? Is it necessary to get a haircut, in order to access welfare services that should be available regardless of how he looks?

Social media is really good for lots of things, but I really wonder whether we’ve lost sight of what matters.  In my mind the haircut means nothing.  It’s healing the wounds inside and meeting the basic needs of life that will really make this man’s life live-able for him.  If the rest of us want a makeover show then there’s plenty on reality television.

As for me, I guess I’ll eventually get that haircut, but I doubt it will go viral.  I won’t be putting it on YouTube.  I know you’re disappointed, but I’m relieved.

“Beware lest you lose the substance by grasping at the shadow.” 

― Aesop

Lost For Words

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

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

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

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

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

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

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

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

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

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

― A.A. Milne

  • Real (infinitesadnessorhope.wordpress.com)

Something Better Than Today

Every few months I get a little bit desperate.

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

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

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

…and so anything will do (almost).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

― Alison Lurie, The Last Resort

Those In Peril On The Sea

Going back a few years, I remember having to sing hymns in high school Assemblies, three times a week.  The hymn that springs to my mind right now is this one (well, this is the first verse):

Eternal Father, strong to save,
Whose arm hath bound the restless wave,
Who bid’st the mighty ocean deep
Its own appointed limits keep;
Oh, hear us when we cry to Thee,
For those in peril on the sea!

I knew it was a hymn often related to the Navy, and I knew it was old (written in 1861) but I really had little idea of what the words we were singing meant.  Wikipedia tells me it is something related to Psalm 107 about those being shipwrecked and calling for God’s mercy.

My thinking is that those in peril on the sea had no hope, and the issue of being no hope (sometimes) has been weighing heavily on my mind this week.

It was two and a half years ago that a man collapsed in my house and I had to perform Cardiopulmonary Resuscitation (CPR) on him in an effort to save his life.  I did CPR for 20 minutes.  If you’ve ever had to do it, you will know that it is an extremely physical procedure and in that time I completely exhausted myself.  But I had no thought that there was no hope, and so I kept on.  At one stage I heard a rib crack, and I thought ‘Dad is going to be really sore tomorrow with his cracked ribs I’ve just given him‘.  Still, I believed there must be hope…    and so continued.

Eventually paramedics arrived and took over.  They continued to perform CPR for another 20 minutes before telling me (and my mother who was watching all this) that there was no hope.  He had gone.  My Dad had died.

What was I hoping for?  I guess that the treatment I (and then the paramedics) were giving him, would revive his heart and bring him back to the person I knew. To bring recovery. I wanted him to be saved from his ‘peril on the sea’.

Image credit: John Desjarlais/Wikipedia.com

 

Then I started thinking about hope and how it applies to mental illness.  It’s something I talk about regularly because I believe that having hope is what makes the difference to me getting through my mental illnesses.  For me, there is hope of treatment, both pharmacological and psychotherapeutic.  My main diagnosis of Borderline Personality Disorder (BPD) is a little tricky because as it forms part of who I am (my personality) it can’t just be removed.  For me, management of the symptoms of BPD is what I hope for, and right now I am pretty much achieving.

But is there that hope for all mental illnesses?  Most of us at least have hope of management of symptoms , if not complete recovery but it’s occurred to me recently that actually that hope is not there for all illnesses.  What if there is no medication known to treat the illness, and what if therapy is not known to be particularly effective?  What if most sufferers actually aren’t motivated to seek treatment, even if it was available?  While again, I need to emphasise that I am not qualified in psychology or psychiatry, and so I am speaking of my personal thoughts rather than proven fact, it does seem that there is little hope for those people.  And I’m talking about four in every hundred people.

This fills me with sadness because it is hard enough to live with mental illness when at least someone can see hope.  It also fills me with sadness because people close to me are in that number and I desperately want hope for them.  My heart is also filled with sadness because these people perhaps struggle against the stigma of mental illness the most.  I haven’t named the illness purposely, because as a society there tends to be little, to no compassion for these people.  They’re hardly even treated as people.  But what if it were us?

It’s not my role, or my desire, to be dictating who we should, and shouldn’t feel compassion for but I will tell you my own way of looking at this.  Sometimes even people with mental illnesses (like me) do things that aren’t nice, aren’t acceptable and aren’t what healthy human beings would choose to do.  I don’t like their behaviours one little bit.  I don’t like it when innocent people get hurt.  There needs to be appropriate punishment when crimes are committed.

But that doesn’t take away from the fact that the people with mental illnesses who did these things are human beings.  Look at it another way.  We were all once innocent babies, who needed and deserved the best care in the world.  For a million reasons things can go wrong, but we all still need and deserve care and compassion.  They’re not monsters, but babies.  That’s my way of looking at it anyway.

I don’t write this post today because it’s a good topic to debate, but rather because it is something weighing very heavily on my mind right now… because of my personal experience.  I can’t quite get my head around there being no hope for someone’s mental health, mostly because I had to cling onto my own hope (and others’ hope for me) for so long (and still).  Maybe someone will tell me it doesn’t matter because the person probably isn’t motivated toward treatment anyway, but we all have families.  While they might not always be perfect families, at least some of them would want hope for us.  Some of them would not want us to be at ‘peril on the sea’.  And I just can’t accept that these people should simply be left at peril.

“There, but for the grace of God, go I.”

― John Bradford (1510–1555)

“It is often in the darkest skies that we see the brightest stars.” 

― Richard Evans

This Warrior Princess

Xena: Warrior Princess

Xena: Warrior Princess (Photo credit: Wikipedia)

Remember Xena, Warrior Princess?  The television series ran from 1995 to 2001 and while I don’t admit to having been an avid follower, just sometimes I wished I was a Warrior Princess like Xena, played by Kiwi Lucy Lawless.  She seemed fearless.  She could take on any battle.  Oh, and while in the middle of battle she always looked damn sexy and gorgeous.

This Warrior Princess has been fighting this week, to stay afloat.  And it didn’t look pretty.  A fibromyalgia flare stayed firmly with me for the entire week.  I am just starting to feel vaguely human again, but only just.  That’s why I can finally write again.  I spent a fair amount of the week in bed.  When I wasn’t trying to sleep it off I wished I were suspended somehow mid-air.  With absolutely nothing touching me the nerve pain might have been livable.  As such means has yet to be developed, I’m offering someone the opportunity to put all us fibro-ites out of our misery and create such a thing.

To be honest though, I can be a Warrior Princess when it comes to physical pain… if I must.  Fibro pain doesn’t always make sense but it makes more sense than mental pain.  To me anyway.  I know there are people who will disagree with me, and that’s okay.  Just for me?  I’d rather have physical pain than mental pain.

Along with the fibro flare I have been dealing with the realities of having lost some friends.  Whatever happened to Queen’s lyrics

“Friends will be friends

Right to the end”

It’s a nice thought, but it doesn’t always happen like that.  Lately I’ve lost a number of friends.  People who said they’d be there right to the end, and others who I always thought would be there right to the end.  But they’ve gone.  And try as I might to be Warrior Princess-like, it hurts.

Too often I think of something I want to share with one of them, but they’re gone.  Oh how easy it is to block someone on Facebook, or stop following them on some other form of social media.  They’re gone… just like that.  That’s exactly what has happened to me, with no explanation given.  Just gone from my world.

Oh, I can give myself an explanation, but it’s probably not the real reason.  What’s more I could turn up on their doorstep, except their doorsteps are half a world away, so that’s hardly practical.  And if you think that because of distance those people are not important, you’re wrong.

Why is it that in this age of social media it is far too easy to cut people out of our lives?  Why is it that we don’t need to offer an explanation for leaving anymore? And why is it that we don’t stop to tell our friends how much they mean to us, until they’re gone and it’s too late?  Why are friends expendable?  Why is it that when they’ve served their purpose we just push them out of our lives?

Yes, I feel hurt…   and no, I don’t feel Warrior Princess-like.  Thanks to fibro I couldn’t possibly have squeezed my way into Lucy Lawless’ costume, but I wish I could bat away the hurt that easily.

This week it hurts.  Physically and emotionally.  I need my friends this week, but I’m down a few.  I’m not someone who easily gives away a friendship.  Friendships mean the world to me, even those half a world away.  Unfortunately I realise that it’s so much easier for some.

And if you say I’m better off without friends like that, well maybe that’s true.  Maybe one day I’ll be able to think that way, but right now it hurts.  Right now, I’m nowhere near ready to hear that.

“Why did you do all this for me?’ he asked. ‘I don’t deserve it. I’ve never done anything for you.’ ‘You have been my friend,’ replied Charlotte. ‘That in itself is a tremendous thing.” 

― E.B. White, Charlotte’s Web

Beating Myself Over The Head With a Hammer

Why do I do this to myself?  I just do it all the time.  Make myself suffer.  Make me feel sorry for myself.  If it’s not one thing, it’s another and I really wonder why we keep doing the things that we know hurt?

Let me explain.  I can’t work at the moment largely because I can’t get medication to treat my fibromyalgia.  If I could, I would love to work.  Maybe not full-time but at least enough to have me feel like a contributing member of society.  Some income would be nice too, not to mention to make use of that degree I slaved to get to my name.

But I can’t get the medication and so I don’t have much control over my symptoms.  Today my pain is pretty bad and I couldn’t think of standing or walking for hours through a day (or half day) of work.  So I know I can’t work, but I just can’t stop myself looking for jobs.  In other words, beating myself over the  head with a hammer.

This morning there was a job vacancy in my email in-box.  I looked at thought, I’d love that job.  Better yet, I’ve got the skills, experience and personality for it.  I get excited.  Suddenly I’m picturing myself back in the workforce, and of all this thinking about where I would park my car (while at work).  Yes, I had already given myself the job.  Oh, and the starting salary looks good.

That is, until my knees and ankles ever so impolitely reminded me that just sitting today is agony.  And the job would require me to be on my feet most of the time.  My heart sinks, as my knees remind me that actually looking at job vacancies like this is just… dumb.  Not to mention depressing, disheartening, and… shall I go on?

But then I can’t quite bring myself to close the site and delete the email.  What if this is meant to be?  What if I’m just fooling myself over my incapacitation.  There are some people in my life who think I am just a drain on the taxpayer and need to get off my butt and find a job.  Their voices are in my head now, and again I’m thinking, what if they’re right?  The perfect opportunity to doubt my reality.

I fall into this trap so often, and so easily.  It’s never a pretty outcome because I end up frustrated again that I can’t work at the moment, and angry at the pain and fatigue that prevents that.  If you know fibro at all, you will know that this little exercise in knocking myself will only end in… more pain and fatigue.

Would someone please take that hammer out of my hand?  Perhaps cancelling the subscription to all the perfect jobs for me would help too.  I don’t deserve this.  Only a few days I wrote about Being Compassionate To Myself.  It was on a different issue but the basis is the same.  It’s time to be gentle with myself.  It’s time to put down the hammer.

“But this revolutionary act of treating ourselves tenderly can begin to undo the aversive messages of a lifetime.” 

― Tara Brach, Radical Acceptance: Embracing Your Life With the Heart of a Buddha

Being Compassionate To Myself

Ted 002

These are my ‘Dorothy’ shoes, named by my friend Elizabeth.  I don’t do sparkly, diamantes and fairy dust, and so these are probably as close as I am going to go to ‘Dorothy’ shoes.  If you don’t know what I’m talking about, go spend a few hours watching the Wizard of Oz, and keep an eye out for Dorothy’s shoes.

This picture was my Facebook profile picture for a long time, partly for the reason that by seeing the picture I was reminded to imagine myself walking in the shoes of the person I was talking to on Facebook.  That was in my days of my primary activity on Facebook being support groups.

After all, that’s what we’re told to do, isn’t it?  Walk a mile in a man’s shoes before you judge him.  It’s a pretty good philosophy in my mind because it reminds us not to judge another until we know what their life involves.  It allows us to go some way towards offering empathy, something we all want and hopefully are prepared to give.

Empathy, according to the Merriam-Webster Dictionary, is:

the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also : the capacity for this

In the mental and physical pain that many of us carry each day, what we want is for someone to say “I get how it is for you.”  What strikes me is that while we’re on a never-ending quest for understanding, would it ever be enough for us?  I’m not sure.  I’m not convinced that anyone, unless they know me exceptionally well (and there’s very few in that class), can really know ‘how it is for me‘.

I don’t mean for that to be as depressing as it may sound.

Even if you walk a mile in my shoes, that does not mean that you are going to understand who I am.  After all you need to be me in my shoes, for you to understand me.  If you just walk in my shoes, you may have a completely different experience of me.

When I was first diagnosed with fibromyalgia I joined, signed up or ‘liked’ many websites and pages relating to living with fibromyalgia.  I thought I would be understood.  I thought I would meet people with the same experience.  I didn’t.  I thought it would make my experience of fibro better.  It didn’t.  If anything I felt more isolated partly because even these people didn’t seem to ‘get it‘ for me.

I don’t mean to offend anybody because those sites are all offering good information and support, but actually I didn’t feel understood, I didn’t feel I was with like-minded, and like-suffering people and all that happened was that I felt pretty isolated and depressed.  I pulled back, fast.

One thing I did find before I left was a whole lot of posts available for members to share with their friends and family, like this one:

It’s crying out for empathy, but it’s not the way I’d go about it if I was looking for empathy, and I doubt it would be that effective.  Personally I see these types of posts and I groan inside.  Maybe I shouldn’t, but then I’m human.  Maybe I’m allowed to say this because I have fibro (then again, maybe I shouldn’t) but while fibro is a hellish existence which I don’t enjoy, this description of it does not capture fibro for me.  This is begging for attention!  And who likes people who do that?  I would never share this with my friends and family.  Then again, I accept that it could well be the very real experience of the author.  We are all different.

I’ll take another subject I know only too well.  Borderline Personality Disorder (BPD).  People with BPD suffer immensely and the quote above, with a few minor alterations, could be used for us.  But why stop there?  Bipolar, Schizophrenia, Dissociative Identity Disorder, to name a few?  Which mental illness does not include great suffering, and leave sufferers feeling like they are imprisoned?  And who doesn’t want the understanding?  Chronic physical illnesses of all types are also the same.

My point is this.  We can cry out for empathy in these ways.  We can beg people to understand us.  But they never can fully understand what we’re experiencing, because they’re not us.  They can only understand to a limit and then we have to live with our own understanding beyond that.

I don’t have people in my life who fully understand what I am suffering both in mental, or physical terms.  A few have some idea, but then I have to remember that just because they might know someone else with BPD, doesn’t mean they understand my reality of BPD.  Like most disorders there are many variances which make reality different between individuals.

But you know what?  I’ve decided that it doesn’t matter if they don’t get my suffering.  That’s not what I need from my friends and family.  Yes, it would be lovely if people understood exactly what my needs are, but I’m being unrealistic.  What I need is absolute acceptance of who I am, as I am.  If they can give me that, then I can put that with my own compassion toward myself.

I believe that I would be more effective in getting my needs met if I didn’t push my demands for understanding on other people so much, but started practising self-compassion, in order that my needs be met.

I need to focus on what I can do to meet my own needs.  It doesn’t make me a hermit, it just makes me aware of what I need, and find ways to meet those needs… without having to go begging for everyone to understand me.  I also think  if I can love myself and take care of my own needs without begging for friends to ‘get‘ me, then I also become more attractive as a friend to others.  And that leads to more of my needs being met.

Is that confusing?  It would be quite remarkable if we all had friends and family who understood our suffering, but it’s not going to happen.  These are human beings we’re talking about.  If I can appreciate and accept my own suffering, identify for myself what my needs are, and be compassionate towards myself?  Then I am starting to make progress.

One final thought.  Think about the dog or cat who gives you unconditional love.  They don’t understand your suffering.  They just love you anyway.  And isn’t that enough?

“If you celebrate your differentness, the world will, too. It believes exactly what you tell it—through the words you use to describe yourself, the actions you take to care for yourself, and the choices you make to express yourself. Tell the world you are one-of-a-kind creation who came here to experience wonder and spread joy. Expect to be accommodated.” 

― Victoria Moran, Lit From Within: Tending Your Soul For Lifelong Beauty