Hope… I’m Back Writing It

It was six months back, my Last Post.

At that time I was sure that this blog had done its time.  I had my reasons, and they were enough for me to sign off something that I had loved for three years. But I missed it.  I missed you, and in time a certainty grew inside me, that just maybe this blog hadn’t done its time. Now I know I want to be here again, and so I’m back.

You’ll see that there are a few cosmetic changes.  It was time for a facelift.  What remains are the daisies, and that’s because daisies have always been a symbol of what I want to be writing about.

It’s not just hope.  It’s about what daisies stand for. Look at the image above and think about daisies for a moment. The daisies grow almost anywhere. In the grass, they get trodden on, and perhaps worse still get decapitated in a lawnmower. Yet they keep growing back. They are completely resilient and keep growing almost no matter what.

What better symbol for a blog about getting through some really difficult times (both mental and physical illness) with a sometimes underrated thing called hope?

Hope is explained in many different ways.  I don’t think it is possible to put just a few words into one definition. Rather I believe that we each need to find our own definition. Something that means something to me (or to you).

Perhaps most commonly used as a definition is the phrase ‘Hold On Pain Ends‘. If that describes your situation and works for you, then that is something you can use.  But it doesn’t work for me for one reason: the pain doesn’t necessarily end. I have come to a point where I have realised that I have to find hope in spite of pain. I’m working on that.

A little over three years ago, I wrote this about my understanding of hope:

“It’s a specific belief that the future looks better and I can make a difference in my own recovery.”

Hope Is A Four Letter Word I Use Now

Maybe it doesn’t work for you.  Certainly other writers will have penned it better.  That doesn’t matter though, because what matters is that it works for me.

“Better than this”

It’s simplistic, but it’s manageable regardless what type of pain I’m in, and what degree of pain is my current reality. I know that ‘better than this‘ can be and so with that in mind hopefully I keep on going.

So how do you define hope? What works for you?

After six months of very little writing and almost no reading, it’s going to take me a while to get going again.  My reading is completely affected by my concentration levels.  Brain fog, courtesy of fibromyalgia, is to blame for that. As I am able, I look forward to getting back to your blogs. Please bear with me.

Cate

PS: You may notice that I’ve changed my gravatar (see to the right of the screen).  My old one didn’t work for me after three years.  This new one is formed from a photograph of street art built around construction sites in Christchurch, where I live.  I love it, and I believe that ballerinas must from hope in pain as much as anyone.

Further reading

A New Look at Daisy (Bellis Perennis) PositiveHealth.com

Last Post (…Mile, Kilometre, or Lap)

Sometimes you know that your time is up, and this is that time.  It’s time to hang up my blogging ‘shoes’.  I have been blogging on this site for just over three years.  It’s been a great ride.  Well most of it, anyway.

In the few years before I reached my 40th birthday (a ‘few’ years ago) I was somewhat addicted to long distance running.  This was very definitely a stint of over-exercising for me.  Tell me that I was a “jogger” as some people liked to call themselves, and I was offended.  I was a serious runner, in it for the long haul… literally.

My very expensive running shoes in retirement.

I wasn’t much into events.  Running with masses of people destroyed the peace of running for me.  I did a few races but it just wasn’t for me.  However my great aim was to run in the Christchurch Marathon in 2005.

I did it, but only just.  Within the first kilometre I pulled my right hamstring.  Stubbornness (and addiction) kicked in, and although I was in an extreme amount of pain, I decided to keep running.  Actually I was used to running in pain.  My knees never coped with long-distance running.

I was doing the half marathon so only had around 20 kilometres to go.  Of course, the further I ran the worse the pain got.  I never got to that “break through the wall” stage, but I simply kept running.

At the beginning of the last lap, the bell was sounding, just in case I didn’t know I was on my last lap.  Oh, I knew.  By then I was counting every metre, but the sound of the bell told me I just had to run through this park and down the road to the finish line.

I did it.  I couldn’t walk for the next three days.  But I did it.

I admit that this past year of blogging has been a little like that for me, sadly.  I was somewhat addicted.  I have loved blogging but I had hit some issues that were creating pain.

You see, as you will realise I have been blogging under my own name.  That has been very important to me, for a number of reasons but perhaps mostly because I have always believed that until we can speak out in our own names, we won’t crush the stigma of mental illness.

Ok, so I admit defeat (for now).

It’s not so much outright stigma that hit me, but the very real difficulty of protecting the privacy of those I care about.  That wasn’t just my family, but those who were having an impact on my life, and that I wanted to include in my writing here.  Mostly I just couldn’t, unless (as you would have witnessed on a number of occasions) I wrote a very vague, cryptic post.  Sometimes that worked.  Sometimes it didn’t.

Stigma came in as a second issue, in ways that I hadn’t expected.  Stigma is so much more than a public issue.  It is also very personal,painful and sometimes used against us in ways that anyone even realises.  That’s no excuse, but it is a very real explanation of some things that have gone on for me, particularly in the past year.

Calling it quits to blogging on this site is really difficult. My site is me.  Do you know that feeling?  It’s me in so many ways, but now I leave it. It is something that I have considered long and hard. Unfortunately it is my only sensible choice.  I have been silenced (for want of a better word).

To my readers, and perhaps particularly those who have followed this blog for a considerable amount of time, I want to say thank you.  Thank you for reading, and thank you for your comments.  Thank you too, for the ‘likes’.  Whatever way you have opted to interact with me, thank you.  You are the people who made blogging worthwhile. Thank you for making blogging an amazing experience for me.

So what of the future?  I don’t know where the future will take me.  I simply have to admit that this race is finished.  My feet (and my hamstring) are sore, but there is a future (somewhere) ahead.  Time will tell where that future will lead.

 “Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them.”

― Ralph Waldo Emerson

 

“Our lives begin to end the day we become silent about things that matter.”

― Martin Luther King Jr., I Have a Dream: Writings and Speeches That Changed the World

That Pair Of Jeans

Caution: The subject of Eating Disorders and Body Image is raised in this post, so proceed with caution if that is a trigger for you.  I promise that there are purposely no numbers included.  No weights, no sizes.

That pair of jeans has been hanging in my wardrobe for a long time.  A very long time!  When I take them to the Red Cross shop next week, I am sure they will be sent to the ‘vintage’ section.  They are ‘hipsters‘ (before hipsters had their cool phase) and not ‘skinny‘ as we know ‘skinny jeans‘.  But they are ‘skinny‘ in all the wrong ways.

I am clearing out my wardrobe.  It’s something I occasionally do, but I’ve always resisted clearing out this particular pair.  You know how some items of clothing you just can’t bear to part with?  Well this pair have fit into that category, regardless of the fact that it is many years since they fit me.

I bought this pair of jeans from what was known as a ‘Labels‘ second hand shop.  They were meant to be the good quality clothes, and this particular shop was one of my favourites.  I didn’t know I had a brewing case of Anorexia Nervosa at the time I bought these jeans.  I just thought I was fit and slim.  Actually I was too fit (read over-exercising) and too slim (yes, there very definitely is such a thing).  It’s just that no doctor had yet the chance to raise the issue at that time.

As I lost more weight, I thought I was finally starting to look ok.  ‘Ok‘ is as far as I’d go because I still hated what I saw in the mirror.  Actually no matter how much weight I lost, and how loose the jeans became, I still couldn’t like what I saw in the mirror. I could slide the jeans off without undoing them, but I didn’t see a problem.  I didn’t appreciate it when a doctor finally raised the issue.

Eventually the jeans were too big, but I held onto them anyway.  But then in time, I started eating again, simply to keep the doctor quiet.  He had constantly been telling me I needed to put on weight.  He told me I looked terrible.  He saved my life.  Unfortunately friends continued to tell me that I looked great.  I can’t hold my friends responsible for my eating disorder, but they really didn’t help.

The jeans?  Well in time, and I’m talking a long time, the jeans finally became too small, and the doctor was pleased.  I, on the other hand, was not pleased and I had learned nothing of disordered eating and positive body image.  I admit that I’d only learnt to eat so that the doctor would drop the subject.

And that was a long time ago.  Since then I my diagnosis was changed to Eating Disorder – Not Otherwise Specified (ED-NOS), which meant my weight was normal but I still had issues of disordered eating.  It’s still the same today, but no one (read no health professionals) talk about it now.  And the jeans have continued to hang in my wardrobe.

I couldn’t part with them.  The jeans nearly fit again when over-exercising (read too much running) featured in my life again.  I admit I was very happy.  You see, in spite of all the therapy I went through, there was a part of me (that I couldn’t express) who wanted to wear those jeans again.  And I certainly hadn’t learnt anything.

For some very warped reasoning, those jeans spelled ‘healthy’  in my mind.  And perhaps because once my weight was ‘normal‘ again (and even ‘over weight’ in time) no one was interested in helping me with my disorder. No one was interested in helping re-assign what ‘healthy‘ really meant. Unfortunately when the physical was dealt with, there was no interest in helping me with the emotional.  One thing I know now is that is completely the wrong way to treat an eating disorder, but I had to learn that for myself.

So those jeans continued to hang in the wardrobe.  I simply couldn’t consider discarding them.  Yes, a part of me knew I would never be that size again, and I never should be that size again, but another part silently couldn’t wish that size good-bye.

But it’s come time to shrink down my wardrobe.  Soon I will be shifting out of my home for five months while earthquake damage is repaired, and so the less I have in my wardrobe, the less I have to shift.

This time it came easy to give up that pair of jeans (and a whole lot of other clothes).  I doubt that my issues have necessarily become any healthier, but time really does heal.  And this time I can put them in the box to take to the shop.

I was never going to wear those jeans again, so it’s time to let go.

“Food is something I am going to have to face at least three times a day for the rest of my life. And I am not perfect. But one really bad day does not mean that I am hopeless and back at square one with my eating disorder. Olympic ice skaters fall in their quest for the gold. Heisman Trophy winners throw interceptions. Professional singers forget the words. And people with eating disorders sometimes slip back into an old pattern. But all of these individuals just pick themselves back up and do the next right thing. The ice skater makes the next jump. The football player throws the next pass. The singer finishes the song. And I am going to eat breakfast.”

― Jenni Schaefer, Life Without Ed: How One Woman Declared Independence from Her Eating Disorder and How You Can Too

Stand By Me… But Just A Few Will Do

When we live with chronic illness, either mental or physical, it’s all too often that we have to focus on those who don’t stand by us. Those who we thought were friends (or family), but don’t want to know us now.

Over the years there have been many friends like that.  They’re particularly those who didn’t like how I was choosing health treatment options, as if it was up to them.

Then there were those who objected to some of the changes I made in my life.  I can give you a whole list of those who run for the hills when I started smoking.  My overly enthusiastic drinking was always kept under wraps, so that never gave people the chance to exit stage left.  My self harm was also kept under wraps, or at least under my clothes so again, people didn’t have the chance to run.  When I stopped going to church, that was another trigger for some to go.  Over time, plenty just left.  They skulked away presumably just because I was different now.

My ex-husband was one of the first.  From outward appearances it seemed that I was the one who left him.  I was the one, after all who packed my bags and left the house.  My house. But that was only after several conditions that he laid down in front of me.  He wanted me to change, or I couldn’t stay.  I chose to leave.  I think he was surprised (did he think he was that good?), but I guess he got over it.

It’s easy to focus on those people who left.  Yes, it hurts very badly.  Yes, there were times I wondered if anyone would like me ever again.  There were great losses involved when any person who had been close… left.

Image Credit: Squelle, Wikipedia.com
Image Credit: Squelle, Wikipedia.com

But actually there were people who stayed.  Even when I tried to push them away.  While I was hurt by those who weren’t interested in being in my life anymore, strangely those who still wanted to be there, I pushed away.  I was scared that if I didn’t push them away, they might choose (after all) to leave.

The first friend who comes to mind, just kept on coming back.  I know the choices I made for my life were not hers.  I know that some of the choices I made, just made no sense to her.  But she kept being there.  I know some of the things I came to believe in were not her beliefs.  Actually I kept expecting her to walk away.  But she didn’t.  She kept being there.  Nowadays we don’t see each other often, but we can still add up 25 years of friendship.  We live in different parts of the country, and to some extent, we have drifted.  But I know she would be there if I needed her.  And to me, that’s what counts.

The other person who quickly comes to mind has been my friend even longer, and no matter how much I’ve pushed her away across the years, she too, is still there.  I remember not wanting to see her when she came to visit me in a psych hospital.  Visitors are few and far between in a psych hospital but she kept coming, even though I admit I would fake a headache or something so I didn’t have to see her.

Having done that repeatedly embarrasses me now.  It was a long drive to come out to see me, yet I would regularly refuse to see her.  It was really about hating myself so much that I couldn’t bear to be seen.  I understand that now, but I still don’t know if she understood it.  Maybe not.  But she continues to be my friend. Again different parts of the country now mean we don’t get to talk often, but we caught up recently and it was great.  I felt completely accepted, just as I was.  What more could I want?

I don’t have a lot of friends now.  Just a few will do.  Should I say, I don’t have a lot of what we call ‘real life friends‘.  That’s partly been my choice, partly people who have left, and partly something that has come about because of the illness.  People leave just because they don’t ‘get it‘.  Even ‘internet friends‘ I’m not interested in having hundreds of friends.

What I am interested in having is friends like those above, who I know will stand by me.  As cheesy as it sounds I want friends who will be there for me, and will allow me to be there for them. I’m not interested in anything else.  I just don’t see the point.  Judge me and I’m simply not interested.

I think age helps.  In your twenties I get that it’s maybe hard to say a few friends will do.  Even harder to be satisfied with staying in on Saturday nights.  It’s hard again to have a quiet feed on all social media sites.

When I hurtled violently into the world of mental illness, I was in my twenties.  Sometimes it’s hard to remember that I’m not there anymore.  Frankly though, I’m glad I’m not.  Quantity doesn’t matter so much now, I’d rather have quality, or at least those who will stick around no matter what I hurtle through.

It’s a little bit cheesy now, but it’s true, so here it is…

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”

― Henri J.M. Nouwen

To Cope

cope

Pronunciation: /kəʊp

 VERB
[NO OBJECT]

1(Of a person) deal effectively with something difficult:
 

his ability to cope with stress; it all got too much for me and I couldn’t cope

(Source: Oxford English Dictionary)

And now that the English lesson is over for the day, let us get on to more meaningful issues around this word.  Like how do we cope?  What coping mechanisms do we use in order to get through life?  Are those means of coping, healthy or otherwise?

But here’s the catch… I don’t want you to tell me how you cope.  I have enough dealing with my own means of coping.  Tell yourself, instead.  Tell yourself what coping mechanisms you use to manage physical or mental difficulties.  Maybe you have both and so you need to tell yourself about both.  And check with yourself, are they healthy or unhealthy?  And perhaps more to the point, does it matter?  Be honest with yourself.  Know what it is that keeps you going.

And now I will get on with my post. I have had a means of coping with a particular aspect of my life, for a very long time.  Actually I have used this means for as long as I can remember.  I’m talking pre-school.  I can’t remember when I didn’t do this as a way to cope.  This is a very longstanding way to cope.  And it worked.  First as a child, and then as an adult.

There are only two occasions in my life where this coping mechanism of mine was denied (for want of a better word).  Actually they were similar but different.  One involved me sharing some small detail of my means to cope with another, and that other using it to abuse me.  Obviously that didn’t work.  The other refused to accept me if ‘me‘ included that means of coping

Both times I had to weigh up what was more important, my coping mechanism or the people involved.  Both times it required a potentially life-changing decision.  These people insisted I remove the coping mechanism from my life in order to have some type of connection with them.  Actually I chose my means to cope with my life, and it hurt like hell.  But… I never had a doubt that I had done the right thing.

For a third time, this week my means to coping was challenged.  Actually it was more than challenged because of the environment involved.  This time my means of coping was totally chucked out and I was told I ‘couldn’t use it anymore’.  Gone.

If I could go into details, then I could go some way to explain just how devastating that has been.  I can’t.  But maybe it doesn’t matter so much because perhaps my feelings are what are important.  I’m not sure if I can adequately put those in a few words but I will try.

Hurt, denied, shut out.  I was fighting for air to breathe.  Literally my means of life was being denied.  It hurt to the extent that it felt my skin was being peeled off.

I know that it is difficult to comprehend, but go back to your own means of coping.  Maybe one you used from childhood, or something you had to do to keep yourself alive as an adult?  One that actually meant a difference between life and death.  Now have that taken away from you, by someone important in your life.  Maybe it’s happened to you already.  Can you see now a little of how I might feel?

To be honest, I spent most of the week in denial.  There was too much to do, people to face, it couldn’t work any other way.  It simply was the only way to handle it, without totally losing it.  But then I had to go back to the person who did it.  That’s where it felt like my skin was being peeled off all over again. Fuck!

And I felt myself crumbling, not sure if myself even existed anymore…

“You think you’re lost but you’re not lost on your own. You’re not alone. I will stand by you, I will help you through when you’ve done all you can do.
If you can’t cope, I will dry your eyes
I will fight your fight, I will hold you tight and I won’t let go”

— Rascal Flatts

“But He’s Such A Nice Man”

I’m quite sure that utterings of “But She’s Such A Nice Woman” get said at times, but for the life of me, I can’t think of an example in this context.  This past week though, my city of Christchurch, and probably half of New Zealand has come out in support of “such nice men“. They can do no wrong, it seems. “Nice men‘ apparently makes them ‘innocent men‘.

Enough to make me sick for the victims of those “such nice men“.  Those men, who are defended by the masses and often close-minded, sometimes have victims.  And to me, the uttering of “but he’s such a nice man” simply goes far enough to harm the victim all over again.

Shame on us for letting niceties get in the way of supporting victims.

What am I talking about?  Mainly sexual harassment, one of those types of harm that often goes unrecognised.  This past week, in Christchurch, sexual harassment has been top of the list of talk-back topics, social media comments, newspapers and anywhere anyone could get themselves heard.  Everyone, it seems, has had an opinion.  Too often it has been the opinion of the close-minded and ignorant.  The only opinion we haven’t heard is that of the victim, bound to silence by a confidentiality clause.

A man (Roger Sutton), whose name won’t mean a lot to most readers, was accused of sexual harassment by a woman in his office.  This complaint made the big time here because that office is CERA (Canterbury Earthquake Recovery Authority).  Again, a name that won’t mean much, but here in Christchurch where we are recovery  mode from the earthquakes of 2010 and 2011, CERA is perhaps the most important office in the city.  This man was its Chief Executive, and it seems that to many here, he was single-handedly making the recovery of the city happen.  And he was apparently ‘such a nice man’.  I never met him so I wouldn’t like to say although I admit he always seemed to come across well in media interviews.

The details don’t really matter.  What matters in this post is that the claim of sexual harassment was upheld, and there was a victim who wasn’t/wouldn’t/ couldn’t be heard.  She was not only anonymous but also bound by that confidentiality agreement.

The masses were crying such statements as:

“She’s just ugly!

She has no love in her life so has to wreck his life”

“But he’s such a nice man”  (heard repeatedly)

This all gets me angry because this woman who is now being torn to shreds, but remains anonymous and silent in terms of the agreement, is now not only a victim of Roger Sutton, but is also now a victim of the general public (not to mention the media who have also made the most of it).  She doesn’t need to be a victim twice.  What’s more is that too often we (the public) and the media make victims victims.  It’s just so wrong… regardless of how ‘nice‘ he is.

I admit that I possibly feel strongly about this because I too, have been the victim of sexual harassment.  And I too, also became a victim of the onlookers.  My experience was much less public, but for me the victimization of the onlookers actually hurt a whole lot more than the initial harassment.

My sexual harassment was not in the workplace, but rather in a church.  At the time I was a church-going Christian.  I grew up in the church (a minister’s kid) and to a large extent, I saw my church as something of an extended family (especially when most of my family had moved away).

To be sexually harassed by one of the male church leaders was very shocking and hurtful.  These people are supposed to be ones I could trust. I had naively thought that amongst church people I was safe.  Unfortunately that is so untrue.

Eventually I made a complaint to the church authorities.  Thankfully the head of the church, the minister, accepted my complaint.  He had received a similar complaint from another woman who had since left the church.  He and his wife would turn out to be my most supportive people.

The man who had abused me (and harassment is abuse in my mind)  was stripped of his leadership role.  As that became public, and the reasons behind the move were now known, the general public (of the church) quickly turned on me.  I was said to be “wrecking the man’s marriage“, “putting undue pressure on his wife“, and the familiar line came forth:

“But he’s such a nice man!”

He was a nice man, and everyone liked him.  Unfortunately no one wanted to believe what he had done, or was capable of.  I left the church soon after.  There was no space there for me as a victim of this man.  This church was no longer the safe ‘family‘ it had been.

The lesson I learnt since, over and over, is that nice people sometimes hurt people.  Nice people sometimes hurt, abuse and harass people.  I have gone on to learn that sometimes it’s is the nicest people who do the most harm to us.  That has certainly been my experience.  Sad but true.

What really worries me is how many victims have learnt the same lesson?  And what do they do?  It’s not just sexual harassment to which this applies.  It’s any type of harm.  How many victims choose to stay silent because of this?  How many perpetrators run free?

“To those who abuse: the sin is yours, the crime is yours, and the shame is yours. To those who protect the perpetrators: blaming the victims only masks the evil within, making you as guilty as those who abuse. Stand up for the innocent or go down with the rest.”

― Flora Jessop, Church of Lies

 

 

 

Why Can’t I Have Both?

It’s been a while… I know.

It’s just on two months since I disappeared off the blogging trail.  No explanation, just not there.  My apologies for the ‘no explanation’, but it just had to be.  The short story is that I came to a point where it was necessary for me to question whether my participation in the blogosphere was helping or hurting me.  Was I getting out of blogging what was good for me, or was it actually causing pain?  Ideally it would be great to say my participation couldn’t possibly be hurting me, but that’s simply not true.  I have yet to resolve the issue in my mind, and so in the meantime I will only be posting sporadically, when something is weighing particularly heavy on my mind.

I admit too, that pulling back in my participation has also included cutting back on how much I have been reading others’ posts.  That has simply been too hard, particularly with writing comments.  But I do still have a desire to support the blogs I follow and I will be back eventually.

Meanwhile, a dilemma falls before me.  It’s not one that is new to me, but perhaps this time it is a bigger issue because of the consequences involved.  Two options are before me and I wish so much that I could have both.  Unfortunately it doesn’t always work that way and particularly in the issue of mental health versus physical health.  So often it seems the option is one or the other.  Why can’t I have both?

This past week I finally got in to see a Pain Specialist to consider how best to treat my Fibromyalgia.  I’ve been waiting for this for several years now, so it was so great to finally be there.  Regular readers will be pleased to know that I also finally changed my doctor (General Practitioner) a few weeks back.  That, and seeing the Pain Specialist has finally given me some hope that treatment is possible.  Unfortunately though, it looks like it might come with a cost.

The Pain Specialist has recommended a medication for me to try, which if it works for me, could turn my life around in terms of the pain and fatigue that I have on a daily basis. What the medication recommended isn’t important to this post as the last thing I want to do is get into a conversation of ‘what works for who‘.  I don’t see the point in that simply because we all respond to medication differently.

It was not possible for me to start on the medication straight away as it was necessary to get funding approved from the New Zealand health system.  The hope was that by the end of next week I would be able to start.  It would take some weeks to get to optimum dose and so to work out if it was effective.

It was all sounding great, until I came home and did my own research on the drug.  I am particularly careful to read up on medication I intend to start on because of firstly adverse interactions with other medication but also because of those lovely side effects we all dread.

The interactions were listed as moderate, but I had discussed it with the specialist and we agreed that with careful monitoring it would be ok.  But the side effects were different.  All the usuals, including my dreaded weight gain… but here’s the one that stopped me in my tracks:

“you should know that your mental health may change in unexpected ways and you may become suicidal (thinking about harming or killing yourself or
planning or trying to do so)”

Added to that was:

“….panic attacks; agitation or restlessness; new or worsening irritability, anxiety, or depression; acting on dangerous impulses; difficulty falling or staying asleep; aggressive, angry, or violent behavior; mania (frenzied, abnormally excited mood); talking or thinking about wanting to hurt yourself or end your life; withdrawing from friends and family; preoccupation with death and dying; giving away prized possessions; or any other unusual changes in behavior or mood”

It speaks for itself.

I know that this is not the first, or only, medication that has these possible side effects.  There is the well-known anti-smoking medication which I have always said I would never risk taking because of the possibility of suicidal thoughts.  Then there are of course, many anti-depressants and other medications for mental illnesses which have similar risk.

I know that.   I don’t like it.  I think it is crazy, but I know that’s the pharmaceutical world we live in.  What bothers me is that I am stuck between a rock and a hard place.  Yes, these are possible side effects and might not happen but I have to be prepared for their possibility.

For just a few hours, from leaving the Pain Specialist to getting home and doing my own research, I had some hope for the possible end of my pain (or at least significant reduction).  I started to think about being able to get back to work, and was even mentally rewriting my out-of-date CV.

This drug offered me hope… but at the expense of my mental health.

Do I restore my physical health while risking my mental stability?  Or do I say no to the drug, continue to be limited in my physical health, but be sure my mental health is maintained (at whatever level it is currently at).

This is a really hard one.  Yesterday I was by chance reading Lulu’s post on her blog Sunny with a Chance of Armageddon on a similar issue she was facing. Which do we preserve?  Mental health or Physical Health?  It seems that this is a common dilemma we face when we have mental illness, and I’m coming to the conclusion that we each have to make our own decision.  For each, it will be different.

Personally, while I haven’t reached a decision on my dilemma, my inclination right now is to preserve my mental health (which would practically mean avoiding this particular medication).  While my mental health is relatively stable now days, I continue to struggle.  I have been at the bottom of the pit in terms of mental illness. Years of hospitalisation, heavy medication, ECT and the many harmful things I did to myself including suicide attempts.  I had suicidal thinking for a very long time.  I have no desire to go back there.  I suspect I would find it difficult to crawl out of the pit again.

Do I try for stable physical health?  Or stable mental health?  I hate the way my life is dominated with pain right now, but perhaps surprisingly, I think I would rather have that physical pain than to go back through the mental pain I lived with, the worst of which was through the late 1990’s.

On Tuesday I will see my (new) doctor and talk to him.  Maybe I’ll find the cash and go see my rather expensive psychiatrist too.  The problem for me is that while my medical notes are full of mental illness, none of the doctors involved knew me at the worst of my mental struggles.  They haven’t seen that Cate.  They don’t know how bad it can get for me.  I do.

There are no guarantees in this game.  I could have no side effects and get good pain results too.  It just might not happen… but I’m not a lottery player and even so, I just don’t like my odds.

But forget about my dilemma for a moment…   what would you do?  Maybe you’ve already faced this issue.  How did you deal with it?

“No amount of love can cure madness or unblacken one’s dark moods. Love can help, it can make the pain more tolerable, but, always, one is beholden to medication that may or may not always work and may or may not be bearable”

— Kay Redfield Jamison (An Unquiet Mind: A Memoir of Moods and Madness)

Lessons I Must Have Missed

Do you ever get the feeling that perhaps you missed some of life’s essential lessons?  Somehow you just weren’t there for that lesson, or maybe you had something distracting you, so you just weren’t paying attention?  I’m not talking about school lessons but rather lessons in the things we needed to know to be able to function adequately as a human being.  Lessons in things that would substantially help us get through life.

I’m coming to the conclusion that I very definitely missed some lessons which could have made life a whole heap easier and maybe even less traumatic for both myself and those close to me.  The missing lessons for me centre around emotions.  I seriously don’t think I ever learnt anything useful until I was very sick and depending on a very good therapist to get me through.  It’s more than a little sad really, and it goes along way to perhaps explaining where my relationship with Borderline Personality Disorder (BPD) came from.

BPD is a hard disorder to get your head around simply because there are so many variations. We are certainly not all the same, as many websites suggest.   There are usually many things going wrong to warrant a diagnosis, but in my mind it all centres around emotions and the ability to express and manage those emotions.

So here are a few of the lessons that I may have missed, and which may have contributed to the existence of BPD in my life.  They may seem a little disjointed, but bear with me.  There is very definitely a pattern.

Lesson Missed #1
It’s okay to feel hurt

Remember that awful little rhyme that has wrecked havoc on the minds of so many girls with curly hair?

There was a little girl
Who had a little curl
Right in the middle of her forehead
When she was good, she was very, very good.
But when she was bad she was horrid.

Who quotes that at their daughters?  Who tells their little daughter that they are horrid?  It’s horrid that anyone should even write such a rhyme let alone quote it at small girls.  And yes, it was quoted at me.  Apparently it was written for me.  My guess is that I was around four or five.

It’s difficult to remember an emotion back that long ago but my guess is that there was no expressed emotion.  I just knew that I was bad. It was a fact, indisputable by the presence of that word ‘horrid’ being applied to me by people I loved and trusted.  Did they think it was funny?  There is nothing funny in name-calling.

If I was that five-year old again, I hope that I would feel hurt, even betrayed.  It seems only appropriate, but then appropriate emotions were something I didn’t know about for a long way to come.

Lesson Missed #2
It’s okay to feel angry

By the time I got to around 15 I was struggling for a number of reasons. Not that anyone outside my immediate family would have known.  To the outside world I was a good teen who seemed to be doing all the right things.  I turned up at school (and anywhere else I was supposed to be), I passed my grades, I had friends, there was nothing I was doing wrong.  But my family knew differently.

I was a bomb waiting to explode but I had little idea of what was going on.  I guess now that I was mostly angry and frustrated but I had no idea how to express that.  I didn’t even recognise what that meant.  I would simply explode and physically lash out.  That was the only means I knew of getting what was inside out.  It would literally be an exploding bomb with no words.  No words because I didn’t have a clue how to attach words to what I was feeling.

Eventually I didn’t trust myself.  I didn’t understand what was happening, so why would I?  Being unable to temper that lashing out I made some big decisions at that point which have significantly impacted the rest of my life.  I was simply doing the only thing I knew how.  I was holding myself in.  Protecting myself, and more importantly, others.  Too scared to express anything.   Only my family know who bore the brunt of that, aside from me.

Lesson Missed #3
Feelings are NOT thoughts

Fast forward to 30.  I’m in residential treatment for a variety of mental illnesses (although not BPD).  Sitting in my therapist’s office, he has asked me how I felt about something that had happened in my life.  I tell him what I think about it.  He asks me again, and this time points out to me that how I feel about something is quite different to what I am thinking about it.

Bingo!  It might seem obvious to you, but at 30 I had no idea.  I was so shut off to my feelings that I didn’t even know they existed.  I literally thought ‘feelings‘ was another word for ‘thoughts‘.  I am an intelligent person.  But I simply hadn’t had that lesson.

That was a very big day of learning.  Life didn’t get easier because now that I was feeling, I felt every one of those emotions eventually.  It hurt like hell, but at least I was on the right road.  There was some hope.

There were more lessons to come.  I was completely closed off to experiencing what I felt.  It seems I had been right from childhood.  Why?

There are lots of possible answers to that ‘why?‘  I’m not going to get into blaming anyone, including myself.  Right now that just wouldn’t be of any help to me or anyone else.  It just was.  What I can do with having worked through this is to understand better where the BPD diagnosis eventually came from, and continue to work from there toward recovery of some sort.  I think too, that some of the other attributes of BPD which I also have perhaps came about as a means to coping.  If I went into that now, this post would become book length.  But maybe it’s time to explore those in future posts.

“Your perspective on life comes from the cage
you were held captive in.”

— Shannon L. Alder

 

Psychiatric Medication Saved My Life

Image credit: CDC via Wikimedia Commons
Image credit: CDC via Wikimedia Commons

I get a little concerned when I become aware of the news of a tragic death being used as a means to increase publicity to a particular movement or way of thinking.  I recognise that many people don’t have a problem with this, and therefore it is important that I state this is my opinion only.  What I say in this post is not fact, and I respect the right of others to have differing opinions.  I know that some of those opinions are based on tragic circumstances and I have no wish to minimise the effect of those circumstances on the people who have and still live them.

If my viewing over the past few days is anything to go by, and I accept that the internet is a large space, it seems to be a growing movement of people against the use of psychiatric medication (and other treatments) to treat mental illness.  I know this is not new.  I’m not saying it’s wrong.  It’s just that there is another side of the story and for some people psychiatric medication is the only life-saving treatment appropriate.

Since Robin Williams’ wife came out and publicly said that he had been diagnosed with Parkinson’s Disease before his death, there seems to have been a swell in people saying that his death was a result of the medications he was taking for this illness.  The reality is that at this stage no one knows the exact cause of his death.  I don’t believe it is fair on anyone, including above all Robin Williams’ memory, to be making assumptions and statements like this.

I don’t mean to take on the whole Anti-Psychiatry movement with this post, but rather because I have seen so many statements about the dangers of psychiatric medication in the past few days, I simply want to be clear that I have another opinion.

Psychiatric medication saved my life.  I have no doubt of that.  In the nearly 21 years of my mental illness I have been on a vast range of drugs, mostly prescribed by psychiatrists.  I am very aware that most of those drugs were of little or no use to me.  Also many were changed too quickly and therefore didn’t allow time for it to work.  I know they were desperate to find a quick solution.

I experienced a whole heap of side effects, which I could have done without.  One of the side effects I ‘possibly‘ experienced was suicidal ideation.  I say ‘possibly‘ because I have no means of telling whether the severe suicidal thoughts I experienced for around 10 years, from before the medication was started, were caused by the medication I was on, symptoms of my specific illness, or the life situation I was in.

It makes no sense to me (as a lay person) to have psychiatric medication that can cause side affects of suicidal thinking.  What are pharmaceutical companies  thinking?  On that I totally agree with anti-psychiatry, but I also don’t believe anyone could point the finger at any aspect of my life and say that was specifically causing the suicidal behaviour.  They would only be guessing.

Around 12 years ago my psychiatrist at the time made what would be one last change to my medication regime.  I’m purposely not going into details of the actual medications prescribed because I don’t believe that is helpful.  We know that responses to medication are different for everyone.  What has worked for me won’t necessarily work for anyone else.

Since that change I haven’t had any more hospital admissions (and I was stacking up admissions before then) and my suicidal behaviour has largely gone.  Yes, I admit there are still thoughts at times, but I can manage them without hospital admissions or crisis intervention.  I have been able to stop self harming.  I have begun to find hope in living.  These are huge changes for me and they literally saved my life.  I continue to take that medication today and will probably stay on it for my lifetime.  That’s okay with me,and yes, even in spite of what it may be doing to my body.

All that said, I don’t believe that all people who suffer from mental illness need to be on medication.  I read a blog post recently that advised sufferers of Depression to eliminate sugar and alcohol from their diet, get out walking and learn to meditate.  That’s pretty standard and I am sure that for some people, that would go a significant way in curing the problem.  But I know that this instruction wasn’t sufficient for me.  I needed more.  I believe that I needed to change the chemicals going on in my brain, and that prescribed medication was the only way to do that.

With Depression I believe that there are different levels of severity(sometimes it would be good if there were different names for those different levels).   Therefore I accept that medication is not always necessary.  If depression can be cured without medication, I think that is great.  But nothing can sway me from believing that for some people medication is the only answer.  I am sure that I would have been dead today had a psychiatrist not taken the time to find the right medication for me, and had I not committed myself to taking it daily.

I also believe that psychotherapy went a long way to contributing to my improvement, but that it is the right medication that really sealed the deal from changing what I will call a suicidal pit to some chance of living.  The medication made the therapy possible.  Without it I wasn’t well enough to undergo that process.  Of course, you probably didn’t know me 12 years ago, but those who do will attest to the fact that my life has significantly changed.

I am not cured and I expect that with the type of mental illness I have, I will continue to have symptoms, but I know that continuing to take the prescribed medication will go a long way to keeping my illness managed and hopefully keep suicide from being an option.

I totally respect people’s right to determine what is right for them.  This was right for me but I understand that it won’t be right for everyone.  But I also believe it is wrong to write off a particular type of treatment which may not be right for one but can be a lifesaver for another.  From all the range of treatments and options available hopefully there is hope.

“Others imply that they know what it is like to be depressed because they have gone through a divorce, lost a job, or broken up with someone. But these experiences carry with them feelings. Depression, instead, is flat, hollow, and unendurable. It is also tiresome. People cannot abide being around you when you are depressed. They might think that they ought to, and they might even try, but you know and they know that you are tedious beyond belief: you are irritable and paranoid and humorless and lifeless and critical and demanding and no reassurance is ever enough.

You’re frightened, and you’re frightening, and you’re “not at all like yourself but will be soon,” but you know you won’t.”

— Kay Redfield Jamison (An Unquiet Mind: A Memoir of Moods and Madness)

Facing The Mundane Realities Of Chronic Illness

There are some things which are obvious about chronic illness, although admittedly when it is an invisible illness even those obvious things are hard to see and be aware of.  I don’t mean for this post to be a ‘moaning Maggie‘ post, so forgive me if you think I am heading there.  But this is on my mind.  With most posts I publish it is my desire that people read them (ok, I’m stating the obvious), but this time I admit that the shame involved in posting leaves me with mixed feelings.  Yes, I want you to read but yes, I am ashamed of what I say.

I read awhile ago that Fibromyalgia doesn’t kill you but you just keep getting sicker.  I don’t know if that is true, or another internet rumour, but this past year certainly seems to have been worse than before.  I feel a bit like fibro has become just one long line of flare symptoms, with little or no break.  My head seems in a permanent fog.

On Tuesday I have a small army of people coming through my house to do yet another assessment of earthquake damage left from 2010/11.  Yes, you’re quite right.  That was a long time ago but recovery takes… forever it seems.

They always promise ‘minimal disruption‘ but around ten people going over (and under and through) the house with a fine tooth comb is not ‘minimal disruption‘.  That’s ok though as I am just happy that someone is doing something.  Maybe one day there will be a decision on just what to do with my poor home.

From many of these assessments before, I am fully aware that they will see everything… including the fact that my house is not just untidy, but also unclean.  And yes, it’s got to that stage where it’s plainly obvious.  I am ashamed at the state of the place, but it has become like that simply because my fibro has been bad enough to prevent me from doing housework.  I also know , like a promised added extra, that when I actually get to cleaning it is likely to land me in bed for a week, simply from the effort involved.

So why am I telling you about my shameful dirty house?  Because if you looked at me you wouldn’t see a reason why I couldn’t have kept on top of it.  I look healthy.  I look able.  I look like there is nothing wrong with me.  Yet I can’t keep up with what is simply a small two bedroom house with only one person to mess it up.

I don’t have a lot of people come to my house usually.  I admit to being somewhat of a hermit.  I have no idea of what judgements those who have been here lately will have made of me.  There is always silence.  And uncomfortable silence where you wish to god that they would just say something.

Right now I am very aware of the judgements that this army of people might make on Tuesday.  Yet there is very little I can do about it.  I can hardly stop them at the door and say “BTW excuse the mess, I have fibro“.  I really don’t think they will care for excuses.  You see, I look fine and so the judgement will be made that I am fine, but lazy.

That old adage “don’t judge a book by its cover” applies in so many ways.  If you walk into someone’s house and notice it is unclean and untidy, stop to think that there may be a reason.  Most of us don’t choose to live in such a state, but some of us find ourselves having to.

You see, apart from when ten people are about to come through my house, I can kind of overlook the state of my home.  I don’t like it, and I would love for it not to be the reality, but my priorities are largely my health and my mother’s welfare.  After those, if I have no wellness and energy to deal with housework, it simply has to be as it is.  I’m learning to live with it, even though I will probably never like it.

It’s not just chronic physical illness that can prevent us from staying on top of such mundane tasks.  Mental illness can too.  Certainly for some people with mental illness, they can find it therapeutic to do those things but for others, it is simply too much.  For some, their illness can be affected by the state of their home, but for others illness almost keeps us from seeing the obvious.  Actually I have no difficulty in seeing the obvious today.

We need to find ways of being kind to ourselves.  I could choose to beat myself up about what I can’t do right now.  It would make sense as more than likely I am going to be judged by it shortly. But this time I’m trying not to get stressed.  If cleaning happens, it happens… and I’ll probably spend the rest of the week in bed.  If I can’t do it, so be it.  It won’t be the end of my world.

And now comes the big question… do I publish or not?  This is, afterall a post about housework and my unclean house.  Can I swallow the pill of shame in order to say out loud that this happens.  It’s real.  Actually I bet it’s real for many more than just me.  Maybe it’s not the housework.  Maybe it’s some other mundane reality of chronic illness.  We can talk about the illness, but there’s more to it than just symptoms.  There are all the realities of just keeping life going.  The best we can do for each other is to be real about them.

“When you argue with reality, you lose, but only 100% of the time.”

― Byron Katie