Liar, Liar, Pants On Fire!

I was sitting outside (okay, so I admit I was having a cigarette) when I saw one of my neighbours walking up the back path towards me.

I said: “Hi”
He said: “How are you?”
I said: “Good”

And that was it. I had lied through my teeth, but it was okay because he just kept on walking and then walked in his door, leaving me to contemplate what I had just done. The conversations (if you can call them that) I have with this neighbour never amount to much more. I have similar conversations with another neighbour. I lie to him too. But that’s how we talk to most neighbours, isn’t it?

This time I was struck with how easily the “good” rolled off my tongue when actually I was feeling anything but good. Would it matter if I said, “good” in answer to any such questions, for the rest of my days? Does anyone actually want anything beyond this lie?

It’s easy to say, and it’s easy to hear. I’m not requiring anything of you when I answer your question this way. You can just keep going about your day. Even for friends and family, it’s easier that way. No need for you to do or say anything. I’ve given you a ‘free pass’.

But I could get side-tracked by that as I write. It’s easier for me if I don’t tell you how I really am here, on my blog, either. Maybe it’s easier reading for you too. But I’m going to push myself to not opt for the easy. You see, I’m not good. Actually, I’m struggling.

I know you want to read positive stuff on a blog that refers so often to hope, but right now I’m struggling to find my hope.

My mood is dropping and I am fairly sure it has to do with the stress in my life right now. The more stress, and the more I struggle. My stress comes mostly from caring for my mother. She needs more from me now, but has less to give me in return. She mostly knows who I am. She certainly always still recognises me, but clearly has trouble connecting that recognition to the right person. Me. Sometimes she thinks I’m her sister and she used to mistake me for my father. That doesn’t happen so much now. She struggles to remember him at all (he died nearly six years ago). Nearly 54 years of marriage seemingly wiped from memory! This illness is so cruel.

It’s hard. I don’t have expectations of her, but it’s not easy day after day, teaching her the same things. Telling her stories of her life. It would be heartbreaking no matter who she was, but this is my mother. All the things she taught me as I child, I now teach her. And I feel very alone in this.

There’s more, though.

My eating is considerably off track, and to even admit that much takes an enormous amount of courage. Much more will require more than simply an empty screen before me. You’re just not going to get the details, this time anyway.

In the last year, I have lost 17 kilograms with no conscious effort. I know, lots of people would love that to happen, and true I love that I have lost it. I needed to, I was overweight (yes, people who have had Anorexia twice can be overweight!) but I hadn’t done anything to lose it. It has really gone through firstly ill health back at the middle of 2016, and the rest I guess, has been through stress.

The reason I’m telling you this though is that unless you have been where I’ve been you have no idea how tantalisingly dangerous it is. Seventeen unconscious kilos are tempting me to consciously step back onto the eating disorder ‘merry-go-round’ (don’t think for one moment though, that such a move would be the fun of the fair!).

I don’t make it a habit to weigh myself, mostly because of this reason. It’s too easy to get taken in by one kilo lost and before you know it I’ve been sucked into losing 20 or 50. I was weighed when I was admitted to hospital briefly back in July. I saw then that I had lost seven kilos. Then I was admitted to hospital briefly a few weeks ago for an minor procedure. The deadly mistake was looking down at the scales. And I choose to use the word ‘deadly’ because that’s exactly what it can be when you have an eating disorder.

So I admit it. I am back to considering every mouthful. And part of me hates being back there, but I admit, part of me loves it. That’s the ‘deadly’ part.

But then, there is more…

  • My black and white thinking is very definitely more black and less white.
  • There is no light at the end of the tunnel. Whoever said there was, was fooling me.
  • Everyone is against me. I struggle to think anything different. I can’t believe that anyone would be on my side.
  • I said a few weeks back that I would write about anxiety. Meanwhile,it’s just getting bigger and bigger. And yes, more consuming
  • Is the sun going to rise tomorrow? Right now, I just don’t know.
  • I’ve come to a new appreciation of people who choose to keep their curtains pulled shut through the day. Sometimes it’s a way to cut the world out. They can’t get me! I fool myself so easily!

I’m sorry if you came here for a post full of recovery and hope. I guess what I need to say to you is that recovery and hope is not a linear journey. Sometimes the dark overwhelms us. Sometimes people are throwing so many lemons at us, that it is almost impossible to make the damned lemonade. Sometimes all we can do is throw the lemons back. Let someone else make the lemonade, I’d rather have a coke.

Thanks for reading

 

Cate

“The Untreatables”

I need to clarify something. For my own sake as much as for anyone else. One of the terms I hate most in the psych world is ‘Treatment-Resistant’. I’ll explain why in a moment, but first what was a new term for me. Maybe it’s not new to you, but I wish it didn’t exist at all. I was quietly checking my Twitter feed recently when these two words came flying off the screen at me. “The Untreatables”. Ughhh!

“The Untreatables”? Really? Does anyone else take an immediate dislike to this term? (As an aside if you’re interested, the tweet I read contained a link to this article). ‘The Untreatables’: the people for whom there is no treatment.

If I had skills in the cartoon drawing you would see now a group of ‘Untreatables’ gathering together in what might be some type of 12-step group aimed at recovery from untreatable mental illnesses. But I can’t draw to save myself so I’ve hopefully left the image in your mind.

I think I have gained entry into this group three times. Firstly, I was pretty quickly labelled with the ‘treatment-resistant depression’ label. It only takes two different types of anti-depressants tried unsuccessfully, and you’re there. I don’t remember how it was put to me, that this was how I was now seen but I always thought it was an odd term. I thought it applied to me personally whereas it actually applied to the illness. A small but necessary difference.

There was I thinking”but I’m not resisting my treatment!?!” I had been taking my pills, careful not to miss a dose, and I had been going to my therapy (with a man who seemed decidedly odd. But that’s another post.). How could I be defined as ‘treatment resistant’?

The second time this applied to me was many years later when I was discharged dumped by the Adult Mental Health Service in my city because I wasn’t responding to their treatment. This time, ‘treatment-resistant’ was being applied to me, the person. A social worker had been working with me using Cognitive Behavioural Therapy (CBT) and I didn’t respond as I should (apparently). Actually, I suspect the term ‘Untreatable’ was used because that’s really what they were saying. There was no treatment for me.

The same thing happened a short while later with the Eating Disorders Service I had been seeing. There I had been in group therapy (using CBT again) and I hadn’t responded as they thought I should. I was discharged dumped again with my untreatable eating disorder. Fortunately, I had got myself past the Anorexic phase before I even got seen by their Service (sitting on a waiting list for years) otherwise, I suspect I would be dead by now.

My point in sharing what was a very frustrating but also depressing stage in my life is that in each case, mental health professionals were leaving me with a sense that all this was my fault. I was either resisting treatment or I was untreatable because I didn’t respond to CBT.

I accept that in the first case, the psychiatrist involved may well have been clear in saying that my depression (the illness rather than me personally) was treatment-resistant, but in my frame of mind, I took it to be about me. It wasn’t. I wasn’t doing anything wrong. I simply hadn’t responded to the anti-depressants he had chosen. It was actually more about him than about me. It was about choices he had made.

When I saw the tweet that hit me between the eyes, I took exception to that term ‘The Untreatables’. It’s an awful description as well as being an easy way out. Class us as ‘untreatable’ and you can send us on our way.

I take exception too, to the term ‘treatment-resistant’ if it is used to describe a person.

To any mental health professionals who happen to read my blog, please think before you use either term whether it is to the patient or not. How you think about it will determine how you see your patient, regardless of whether you use the terms in front of them.

And to mental health patients, please hear me when I say

You are not treatment-resistant.

Your illness may be treatment-resistant, but not you. And I hope that you are never made to feel ‘Untreatable’. Don’t believe it, and know that it is not your fault.

There are theories that some mental illnesses are untreatable, particularly Personality Disorders. I don’t accept that, but then I’m no professional. I think it comes down to how you understand the term ‘treatment’. The Mental Health Services who chose to discharge dump me from their services could have chosen a different treatment path. They could have simply listened to me. Instead, they put a distressed and unwell person out of their systems without support. It wasn’t until a few years later when another mental health professional worked out that I had Borderline Personality Disorder (BPD) and not just depression and an eating disorder, and that is perhaps why I hadn’t responded to the earlier interventions.

I am convinced that sometimes it is just about having the time to work beyond the ‘treatment resistant’ or ‘untreatable’ labels.

Thanks for reading

 

Cate

 

To See A Light That Shines

Source: To See A Light That Shines

“For me, and maybe for you, if you’re in a similar situation, it became harder to let my light shine as I got older. As my mental illness took over, it became a life and death battle to keep that light shining. Depression wanted to suck the life out of my flame. It wanted to kill the spirit within me. It wanted to change, and even murder, who I was. Actually, there were times when Depression, Anorexia and Borderline Personality Disorder did a good job.”

To See A Light That Shines is my latest post on A Canvas of Minds…

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

Love Doesn’t Cure Mental Illness

This week, not surprisingly, there has been a whole lot of talk on our screens about mental illness and suicide.  Having those subjects ‘out there‘ is a good thing, but I can’t deny that unwise words and ill-formed arguments have not helped anyone, most especially those personally affected by the tragic death of Robin Williams, and also importantly, those people struggling with their own mental illness battles and suicidal thoughts.

I read a lot that I really wish I hadn’t read, but one article I came across perhaps summed up the issues for me more than ever.  I have shared that article in several places but if you haven’t seen it I urge you to read the wise writings of Molly Pohlig:

When the Illness You Live With Becomes Breaking News
(I Bet Robin Williams Knew He Was Loved. Unfortunately, Love Doesn’t Cure Mental Illness)
http://www.slate.com/blogs/xx_factor/2014/08/12/robin_williams_and_mental_illness_when_depression_is_breaking_news.html?wpsrc=sh_all_dt_tw_bot

One thing we perhaps know from this week, is that fame, fortune, a great sense of humour, laughter, family and perhaps above all, love does not cure mental illness.  Robin Williams appeared to have all these things.  Depression is not magically spirited away by the possession of such things, and the struggle with suicidal thoughts is not relieved.  Oh, that it could be.  Wouldn’t it be great if mental illness was so easy?

If love were enough, my depression would have been cured years ago.

If love were enough, along with maybe a plate of my favourite food of course,  then perhaps my Anorexia would never have got the dangerous point it did, not to mention halting the permanent damage it did to my body.

If love were enough, I wouldn’t have struggled with chronic suicidal ideation for so long, several times plunging my body close to death.

If love were enough just maybe Borderline Personality Disorder (BPD) would never have become the major stumbling block in my life that it is.

And perhaps finally, if love were enough then Post Traumatic Stress Disorder (PTSD) would have been cured.  But then for me PTSD was triggered into a perhaps worse state by the presence of love in my life.  Now that’s confusing if you believe love will solve all.

Love certainly made the last 20 years of my life better than it would have been without it, but only because in spite of the pain I was in, I knew someone cared and perhaps I wasn’t quite as alone as I felt.

But love didn’t fix the pain for me.  It didn’t cure my mental illness.  I had a family surrounding me who loved me.   It was hard for them to know that their love couldn’t fix me.  I guess that hurt like hell.

As I have said before (An Apple Never Falls Far From The Tree), I tried very hard to prove for myself that my family didn’t really love me.  They did.  I can’t deny that.  Some of them (at least) probably thought they could help me if they could just love me a bit more and provide for the needs I had.  Maybe to sit down with me and watch a Robin Williams’ movie to make me laugh for a while.  I should say that just because I might laugh, doesn’t mean I am cured either.

I had friends who loved me, and though I tried very hard to push them away, some of those people are still my friends today.  No, they didn’t cure me, but they’ve stayed in for the long haul.  Mostly they simply kept being there.  But that didn’t cure me.

And then there was my marriage where for years a dedicated and caring husband tried harder than you could imagine to love my suffering away.  No one could fault him for the effort he made during what were the worst years of my suffering.  Strangely, the more he loved me, the more I kicked up my heels and pushed him away.  He loved me so much yet it wasn’t enough to save or cure me.  In the end was a broken marriage and still a mentally ill woman.

Why?  Obviously this is just my opinion but I think the reason my ex-husband’s and others’ love, weren’t enough to cure my mental illness was because:

I knew that I was unlovable

It wasn’t that I felt unlovable, but that I knew I was unlovable.  It is that certain.  I knew in my heart.  From my earliest days I knew I was unlovable, and actually I would go so far as to say that I knew this before I was born.  That might seem extreme and you’ll have to do without the reasons this time.  Some things are too private.

All the love around me meant nothing to me because I knew that it couldn’t be real, and I knew that eventually I would prove it to be false.  There was no way (in my mind) that those people really could love me like they said.  It just wasn’t possible.  I knew.

It’s certainly not the fault of the people who tried to love my mental illness away.  They didn’t understand that their love meant little because I was unlovable.  I couldn’t have explained it if I tried and so instead, the more they loved me the more of a fake I felt.  The more guilty I felt for not getting well.  This was not something any of them could fix.  It just was.

While I needed the love they were offering,  it was never going to be enough to cure my mental illness.  I can’t speak for others and I don’t pretend to.  This post is about me, and not the thousands who suffer from mental illness.  I can’t say if more love would have saved Robin Williams’ life.  In spite of many contrary opinions voiced this week, I believe that only he could have said what, if anything, could save his life.  And I suspect that he, like me, didn’t know if anything could cure us.

Mental illness affects different people differently.  And what is needed to cure it, if indeed that is possible, varies. To generalize simply isn’t fair on anyone.  I simply know that love was never going to cure me.

Thank you to those who tried to make love enough.  I am lucky to have you on my side and I’m sorry if I disappointed you.  There was nothing wrong with your love, it just was never going to be enough.

I saw a meme yesterday which said that love can cure everything.  I don’t believe that.  If only it were so easy.

“That’s the thing about depression: A human being can survive almost anything, as long as she sees the end in sight. But depression is so insidious, and it compounds daily, that it’s impossible to ever see the end.”

― Elizabeth Wurtzel

 

An Anniversary I’m Not Celebrating

Twenty years ago this weekend, I dived off the platform into the murky waters of mental illness.  Twenty years!  It does seem like a long time ago, but twenty years?  That is a good chunk of my life down in those muddy waters, trying to hold my breath and not drown.  I celebrate that I didn’t drown, but twenty years?

I had won a weekend holiday in Queenstown (a tourist trap for kiwis and plenty of overseas tourists).  My boyfriend, D and I chose this particular weekend to take the trip because it had been my birthday during the past week, we had just got engaged the weekend before, and we both needed a break.  Over the past couple of months I had Glandular Fever (mononucleosis) and was still feeling pretty fatigued.  A weekend away (from Auckland where we were living then) was just what was needed.

The weekend started okay.  We flew to Queenstown and picked up a rental car.  We were feeling pretty lucky to have won this weekend because money was tight and it’s not something we could have afforded.  I had been off work for about six weeks and was only back part-time.

But life was pretty good.  I was a career girl in a job I loved, I had shifted to Auckland the year before and so had finally escaped the stalkers who had plagued my life.  I had good friends.  I owned my own home,  I was a committed Christian who was at church twice on Sundays, and most of all I loved the lifestyle I had.  But wow!  How life can change?  Twenty years on and I am a completely different person.

Back to our weekend away, I wasn’t really aware of anything but at one point D said to me that I had been really negative all day.  It wasn’t about anything specific, just everything.  I hadn’t realised but now that he mentioned it, I started to realise he was right.  So I stopped talking.  That seemed like the best way (at the time) to fix the problem but by the end of the day everything had got too much and we were back in our hotel room, me bawling on the bed.  For hours.  Once I started, I couldn’t stop.

D had no idea what was wrong, or even why I was crying.  Neither did I, really.  I just knew my life had crashed somehow and I couldn’t stop crying.  The glass in the mirror had shattered, and somehow I knew I couldn’t put it back together again.

And so began 20 years of mental illness.  It seemed my mental health had got on a plane to Queenstown, but didn’t come back.  First, I was diagnosed with Depression and Post Traumatic Stress Disorder (PTSD).  Next, those two triggered Anorexia and that became a whole different ball game as not only my mental health but my physical health was under fire.  Much later came the diagnosis of Borderline Personality Disorder (BPD) and Adult Attachment Disorder.  It seemed like once it started, there was no stopping it.

As I said earlier, up until that weekend it seemed like I had life together.  Sure, bad things had happened in my life but I had held myself together and survived.  The thought that I would dive into the mental illness pond was the furthest thing from my mind.  It wasn’t anything anyone else seemed to expect for me either. My parents had only recently given me a birthday card which said “for the woman who has everything“.  I never thought of myself that way, but life was pretty good at that stage.  I assumed it would just go on that way.

But life has a way of surprising us, doesn’t it?  Really, I had a lot of things go wrong in my life and my strategy was to hold it all together, rather than deal with it.  The years of stalking had a price to pay, and now I know that when the trauma ends, that is the time the effects of it really hit.  Until then you’re just fighting for survival.  But I could finally relax.  Perhaps it was finally safe to let go and cry. But then I couldn’t stop.

I remember in the early days reading a book about a woman who had depression for two years.  I was appalled by the idea of two years of this hell.  I couldn’t consider I might be depressed for months, let alone years.

Contrary to popular opinion I don’t believe that everything happens for a reason.  I also don’t believe that, as I was taught as a child, I should be thankful for all things.  What I do believe though is that I can learn from all things.  I have learnt many things across that twenty years.  I have learnt that kindness and compassion extend to all people, regardless of who or what they are.

I’ve learnt a lot of things I’d rather not have learnt too.  But that’s how life goes.  We don’t always get to pick and choose.  I’ve seen a lot of things I’d rather not have seen.  I wouldn’t choose this route.  I would never choose mental illness over health and life, but having gone down that route I choose to let it be.

I finish with this thought.  For a (very) long time I wished for my life back.  I wished for a return to the ‘old days’.  I know that’s not going to happen now.  This is my life as it is.  That old life is gone and wouldn’t be relevant to me now anyway.  I went to Queenstown as one person, and came back as another.  If twenty years of mental illness has taught me one thing it’s to live one day at a time and accept what I have.  I won’t always have the answers to why, but I can just let it be.

“An infinite question is often destroyed by finite answers…To define everything is to annihilate much that gives us laughter and joy…If I try self consciously to become a person, I will never be one. The most real people, those who are able to forget their selfish selves, who have true compassion, are usually the most distinct individuals” 

― Madeleine L’Engle, A Circle of Quiet

I’ve Joined Canvas

I’m really happy to tell you that I have joined a great group of writers at A Canvas Of The Minds, a site used to write about  mental health, through different voices and different perspectives.  I’m going to use my voice to share one more perspective.

I will be writing different material for my Canvas posts, but will share with you the link when I do, so that you have the opportunity to read it too.

My first post (posted today), is about why I choose to blog using my real name rather than a pseudonym.  I know that’s quite different than a lot of bloggers.  I’m sure you’ll find it interesting and…  You’ll find it here.

“I am looking for someone to share in an adventure that I am arranging, and it’s very difficult to find anyone.’ 
I should think so — in these parts! We are plain quiet folk and have no use for adventures. Nasty disturbing uncomfortable things! Make you late for dinner!” 

― J.R.R. Tolkien, The Hobbit

Teetering On The Edge

This could be my shortest post ever.  Why?  Simply because it is so hard for me to write about.  It’s something that has been on my mind to write about for a number of weeks now, but I haven’t been able to find the courage.  These posts are really hard.  It’s much easier to just walk away but I know that right now I am teetering on the edge, and I need to address the matter.

‘Not Otherwise Specified’

‘Not Otherwise Specified’ is one of those terms that is attached to a lot of mental illnesses.  For me, it is attached to an Eating Disorder.  Yes, one of my labels is Eating Disorder – Not Otherwise Specified, or ED-NOS.

I’ve been carrying that label around with me for a number of years now.  Basically it says that I have a pattern of disordered eating but I no longer meet the physical requirements of another eating disorder like Anorexia, Bulimia or Binge Eating Disorder.  If you have been following my blog for a while you will know that I suffered from Anorexia for a number of years.  Now that my weight is not below the specified limits of Anorexia, and menstruation has returned, I am classed as ED-NOS.

This is where I get a little cynical, because I really don’t think that the fact I have ED-NOS is of any interest to anyone who is involved in my health care.  It is something I carry alone.  It seems to be that the ‘not otherwise specified’ tacked onto the end of a diagnosis is an excuse to ignore.  [My apologies to those health professionals who do not ignore].

That matter of being ignored has left me this week teetering (alone) on the edge.  I tried to get help earlier this week, when I realised the problem, but failed.  The person (a health professional who knows me well) was unwilling to listen.  I have enough self-awareness though to know that I am struggling, and to start to identify why by myself. I’ll try to explain.

While I was in England I was aware that I was having difficulties with food again.  It wasn’t really a new thing but when I am at home, and living on my own, I can just cope with the difficulties and ignore them if I choose.  When I’m suddenly living with other people, it’s not so easy.

One of the things I struggle with is choice.  Give me too many choices of food (like going into a cafe and choosing something to eat) I really struggle.  I go through this whole process of what I would like, what would be healthy, even what others will expect me to choose.  In the end, it is easier to choose nothing because I am getting flustered.  And so I do.  Even though I might be hungry, and I might want something. I have nothing.

Another difficulty I faced (which I hasten to say is no one’s fault, it’s just how it is) was being overwhelmed by too much food.  A large plate of food, even if I’m hungry, just seems too much and I struggle to eat it.  I struggle to know when I’ve had enough, and so I struggle to know when to stop.  Even my perception of how much is actually on the plate is distorted.

These issues may sound small but were affecting me each day as I faced meals, and snacks.  The pressure in my head was immense, and that just made it worse.

Coming home to New Zealand last week, saw me getting more stressed the closer I got to New Zealand.  Not for the same reasons this time, but rather a number of unrelated issues that I knew I had to face, and deal with, when I got home.  In my own way I started to panic and feel out of control.

When I feel out of control I rush to try to place control in parts of my life where it is possible.  A week on I have realised that I took that control I needed by controlling my intake of food again.  I have chosen not to eat as much as I know I need.

This is what Anorexia was about for me, all those years ago.  I felt out of control of my life at the time, so took control of one thing I knew I could.  Food.  And then I also took more control by laxative abuse and over-exercising.  I did it for years and made myself very sick, yet it was something that made me feel better because I at least had control of something in my life.

Right now I don’t have Anorexia and I am not underweight.  I just realise though how easy it would be to slip back into that disordered pattern of eating.  Reacting this way to other aspects of my life, which might seem out of my control, is not healthy.  I know that, and it’s not something I want to do.  But I can tell you that having that small bite (pun intended) of control is completely enticing.

Recovery from an eating disorder would be so much easier if we didn’t have to eat.  Yes, I like food but I hate how it screws me up and how I have to face that disorder several times a day.  There is no getting away from it.  It’s something that I must have in order to live.  If you don’t have an eating disorder, stop and think for a moment how difficult it is to face potentially deadly poison (like say a drug you are allergic to) several times a day.  It is literally like teetering on the edge.

PS.  One of the difficulties about writing this is the fear of advice.  I don’t want any.  I have a pretty good awareness of what is going on and what I need to do, and unless you have been through the same thing, then it is difficult to gauge what would be in any way helpful.  So please, don’t be offended by me saying ‘no advice please’.  I’m simply sharing my experience to raise awareness. 

I haven’t blocked out comments (because comments are always welcome), but in order to protect myself emotionally I won’t be responding to any advice that might be come through in spite of my request.

“It’s dark because you are trying too hard.
Lightly child, lightly. Learn to do everything lightly.
Yes, feel lightly even though you’re feeling deeply.
Just lightly let things happen and lightly cope with them. 

I was so preposterously serious in those days, such a humorless little prig.
Lightly, lightly – it’s the best advice ever given me.
When it comes to dying even. Nothing ponderous, or portentous, or emphatic.
No rhetoric, no tremolos,
no self conscious persona putting on its celebrated imitation of Christ or Little Nell.
And of course, no theology, no metaphysics.
Just the fact of dying and the fact of the clear light.

So throw away your baggage and go forward.
There are quicksands all about you, sucking at your feet,
trying to suck you down into fear and self-pity and despair.
That’s why you must walk so lightly.
Lightly my darling,
on tiptoes and no luggage,
not even a sponge bag,
completely unencumbered.” 

―    Aldous Huxley,    Island

What My Doctor Won’t Tell Me

My doctor won’t tell me anything.  I think he has perfected the art, no doubt taught in medical school, of ‘keeping the patient in the dark’.  My guess is that they have a unit on this topic every year of medical school, and it is continually repeated throughout their career when they take off to tropical islands courtesy of drug companies.  Along with taking the Hippocratic Oath, I am coming to the belief that they also take, and renew annually, an oath to keep the patient in the dark.

My suspicion that this is an industry wide oath is because it’s not just my current doctor who does this.  My experience is that 95 per cent of doctors I have seen across my life (and I promise you I’ve seen more than my fair share) have been firmly committed to this way of working.

Information
Information (Photo credit: Wikipedia.com – heathbrandon)

Why would they do this?  Probably simply because it saves time.  They can push me out the door, while welcoming another patient in, all the while earning more dollars.  It makes sense…  for them.  It makes no sense for me, the patient.

I also believe it is about power.  Doctors like to be looked up to, seen as the one with all the answers.  It’s great for their egos and probably even helps them deal with the patients they lose along the way (through any number of means).  If my doctor keeps me in the dark, then I have to rely on him to act when necessary, and he loves that.  The problem though for me is that experience tells me that my doctor has far too many patients who rely on him, too little time, as well as perhaps not enough incentive to make sure I get the care I really need.

Nearly a year ago I was diagnosed with fibromyalgia.  It was my second big diagnosis within 18 months, and yet again I had been sent off to a specialist (this time a rheumatologist) to confirm the general practitioner’s (GP) suspicions.  After a rather large amount of money had exchanged hands, and a very thorough (well, what seemed thorough to me, but how would I really know?) assessment I was told I had fibromyalgia.  She then dumped the news on me that she couldn’t offer me any medication for this condition and that I would just have to get used to it (it was said a little more kindly than that but not much).  And that was the end of my appointment.

Silly me.  I walked back to the reception desk and when the receptionist handed me my receipt, I half expected her to hand me a ‘Welcome to Fibromyalgia’ pack.  You know how when we join a new bank, for example, we get a brochure explaining the services of the bank, details of opening hours, the web site addresses we will need to access the internet banking?  Wouldn’t it be great if doctors provided us with information?  It would suit my information junkie tendencies perfectly.

Being an information junkie runs in my family, and my skills aren’t nearly as well honed as some other family members, but I am one of those who immediately needs to look for information when I am faced with a new issue, problem or just a new subject I get interested in.  I need to read all I can about it.  I search the internet, I look for books, I want all the information I can possibly get my hands on.  For a medical matter I want my doctor to hand over all the information s/he has.

Unfortunately this is where I come to a fast halt.  I get a “let’s just see how it goes“.  I hate that.  I want to know ahead of time how it might go.  I want to know what problems I might come up against.  I even want to know what I can do to avoid those problems, and if I can’t avoid them I want to know what to do.  Sadly doctors never see it my way.  And that means relying solely on what information I can scramble together from sometimes dubious sources.

You see I want to be empowered as a patient.  I want to be prepared.  I want to feel like I can have some control over what is happening to me.  But there seem to be very few doctors, both in general medicine and mental health, who are prepared to help me do it.  I know doctors struggle for time, but I also know that when I know and understand what is happening to my body, then I need my doctor less.  A win-win for both of us.

One of the very real difficulties with a condition like fibro is that everyone’s experience is different.  No one can give me a list of exact symptoms I might face.  And so I don’t get told anything.  Everything comes as a surprise.  Everything that happens to my body, I have to wonder why or what is going on here, and with more than one condition I am always left wondering which one is causing the problem.

Over the past few weeks I have noticed that I have put on a little weight.  Not a lot, but to the extent that my clothes just feel tighter.  I admit that weight gain is a really hard issue for someone who is a recovered anorexic, so I have been quietly starting to panic because there’s one thing I know… I’m not eating any more or less than I was.  All the old fears come into play of being out of control and the need to take back that control by restricting.  I’m not about to do that, but it is a very real war in my head that any recovered anorexic will tell you.

With one of my conditions (Graves’ Disease) I am meant to panic and get straight to a doctor if I have a sudden weight loss.  With the other I had no idea whether it was even an issue.  So information junkie Cate had to start searching again, and found that unexpected weight loss or gain can be an issue for people with fibromyalgia.

For a moment there I could breathe again.  Perhaps that’s the explanation, then again maybe it’s not.  I wouldn’t know because my doctor hasn’t helped me get the necessary information I need about this illness.  Maybe it’s a peace of mind thing, but it would have helped me considerably to know this was a possibility.  Actually it would also explain why last year I had been losing weight without any adjustment to my diet or lifestyle.  I’m just hoping the scale tips shortly and I start losing again.

I know these are not life and death issues I need help from my doctor, but I do feel like fibro is a runaway train riding close to out of control.  The place I get my information from tends to be from other sufferers, and that’s great to have that but it feels like fibro is just happening and I have no say about it.  Not being able to access medication makes it harder.  It seems like I just have to let it happen to me.

I didn’t like it when I had to let depression happen to me for so long, and I don’t like this feeling that fibro has completely taken over my life.  I might have fibro, but fibro is not me.  I need to find a way of taking back the reins and I’d very much appreciate my doctor coming on board with this.

Except I think I’m dreaming.  I don’t think he wants me to be empowered.

“My own sex, I hope, will excuse me, if I treat them like rational creatures, instead of flattering their fascinating graces, and viewing them as if they were in a state of perpetual childhood, unable to stand alone.” 

―    Mary Wollstonecraft,    A Vindication of the Rights of Woman