Going Around In Circles

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

 

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

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

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

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

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

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

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

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

It hurts.

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

— Gustave Flaubert

 

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’s Happening To Her?

Image courtesy of  href="http://www.freedigitalphotos.net" target="_blank">FreeDigitalPhotos.net

Image courtesy of FreeDigitalPhotos.net

Yesterday, after a particularly difficult time in therapy, I was thinking about my family who had to stand by and watch me try to self destruct over and over again, as the years went by, and I struggled with mental illness.  At the time the relationships in my family were a bit different from they are today.  In addition to that my father, who was perhaps my staunchest supporter has died, and there is a whole new generation of nieces and nephews, who actually are still too young to know what pain my family went through.  I know that it is not just my pain, they bore theirs too.

I also know that while I pushed many friends away, there were a few who also had to stand by and watch me in my determination to self destruct. I admit I don’t really know what they went through.  I have been in the same situation of watching others go through this journey, but I have always had my own experiences as a kind of backdrop to understanding what was happening.

This morning a friend posted some music on Facebook. Often I pass by other people’s music post but the title caught my mind and I chose to listen (and watch) this time.  It’s amazing.  It is from Ashley Jordan

I was fading away… right in front of my family and friends.  They had no idea how to make a difference, and I know that I made it difficult for them because I was so intent on destroying myself that I didn’t want them to get close.

My fading away took the course of a physical fading as I starved myself through Anorexia.  But I was also fading away as the heavy doses of medication took from them, who I was.  I was different to the person they had known and loved.  They didn’t know how to be with this new, angry but desolate me.

As I repeatedly tried to kill myself, they were left wondering just how long it would be before I achieved my goal.  I know this because one of them had the balls to tell me that he wondered how much longer he would have a sister.  He even said in a letter that in some ways he wished I would achieve my goal…  and then at least my nightmare would be finished and there could be peace.

In addition to the anorexia, heavy medication and suicide attempts, my nightmare journey also consisted of constantly worsening self harm, reliance on drinking and over-medicating to get me through the day… or the night, not to mention the repeated rounds of Electro Convulsive Therapy (ECT).  The ECT also saw their sister, daughter, grand-daughter, wife, friend fading away as my memory was badly affected and to some extent just never returned.

Cate was fading before their eyes, and there wasn’t a damn thing they could do about it.  Those that could, poured money into treatment but it produced no results.  Those who I allowed, tried to let me know they loved me.  But then I was pretty determined to not let anyone near, and I had a husband who enabled that to be in his thinking that he was doing the right thing.  He kept them away.

And as for the husband, now an ex, I have little idea what was going through his mind.  While he wasn’t the right person for me, he still was an essentially good person who had somehow landed himself in the situation of loving someone who was fading away fast.

There is a chapter in my book, Infinite Sadness, about the role that family and friends took.  Of course it is written from my perspective, and not theirs.  Their perspective is hard for me to even imagine, but I know it had to have been rough.

“…It is strange how when I most needed people I couldn’t bear to be with them.  I hid from many phone calls.  The answer phone and Dave proved very useful.  When people knocked on the door I hid and pretended to be out.  I couldn’t stand myself or my feelings and I couldn’t handle the thought of others seeing me like that and maybe agreeing with me. What if they couldn’t stand me either? I maintained that I was not lonely but rather just very alone.  There is a difference and being with people wasn’t going to help me.  Many times being with people left me feeling totally out of the real world.  I didn’t fit. I didn’t like what I saw of myself and I didn’t want others to reject what I knew they would see….”

“…So why did I push them away?  Part of it was what I didn’t like about myself, that they might see if I gave them a chance.  But more so it was because I didn’t think they could understand.  Perhaps too, at times, I felt it was partly their fault that I was suffering so much.  Of course it wasn’t their fault.  There were definitely things about my life growing up with my family that were now affecting me, but equally there were things that had happened since I had become an adult.  I couldn’t blame my family for those things – but I did.  For a while everything was their fault.  I didn’t want to see them or hear from them.  Dave, thinking he was doing the right thing, made this easy….”

(p. 174,5 Infinite Sadness, 2009)

So why am I choosing to write, and cry, my way through this today?  Because when I listened to that song I heard, and thought about my family and what perhaps they felt as they watched me self destruct.  I know for me I constantly thought they didn’t get it.  The truth is that they probably didn’t.  How could they?  They had never faced this before and they were seeing me fade (mentally and physically) before their eyes.  To watch someone you love do that must be devastating.

When I was caught in that nightmare there was little time or even inclination to stop and think how what was happening to me, was affecting those around me.  I will never know how some of it affected people, but I know now that I am not the only person who suffered as a result of my mental illness.  Somehow for me, it is important now to be able to look beyond myself a bit.

I don’t have the perfect family.  Not at all.  Aside all of this, most of us have been through some very traumatic experiences in the past couple of years, what with earthquakes, deaths, health issues and more which have taken their toll on us.  We’re like any other family and some of my family actually had roles in the causes of my illness.  My friends are just like anyone else’s friends.  Human, with feelings and limits.

The good news is that I came back from fading away.  I know plenty of families don’t get their loved one back.  We are all different now, and the scars are clear, but I guess what matters is that we are here.

It’s worth thinking about sometime.  How it might be for our friends and families to watch.  They are pretty much helpless and generally don’t, or won’t understand for their own reasons.  Writing this has made me cry a lot today, because there have been losses.  Isn’t it amazing how a random piece of music (and video) can take our thinking down tracks we weren’t expecting?

And on a slightly lighter note…

“If you cannot get rid of the family skeleton, you may as well make it dance.” 

―    George Bernard Shaw,    Immaturity

Anyone Hungry?

Does that look like a good start for lunch?
Image courtesy of [healingdream] / FreeDigitalPhotos.net

If you’re not,
there are plenty who are, 
including
many New Zealand children sadly.

Spending years with my head buried in requisite textbooks wasn’t that easy for me.  I’m not really an academic person, it was simply a means to an end.  I came out at the end with a degree in Sociology and Social Work, yet still I was frustrated by it all.  I wanted to know how all this academia applied to real people, in real society.  Over the years, before and after that time as a student, I worked in a number of jobs where I was continually confronted by the realities of poverty in New Zealand.

Yes, poverty is very real in New Zealand.  You won’t see it on the tourist brochures, and I suspect if you are so inclined, you could just ignore it and just blame the people who are stuck in that trap.  But it’s there, and we have a particularly big problem in the area of child poverty.  One of the issues that has been in the news lately has been the disturbingly high numbers of children at school with no lunch (in this country children bring their own lunch to school), and many have also had no breakfast.

I don’t have a lot to do with children at the moment, apart from my lovely nieces and nephews, but I know that children are our future.  What happens to children now, defines what happens to our world in the future.  It makes me realise it’s necessary to talk about it, and even more so, do my bit towards seeing that poverty end.

Last week, New Zealand participants took part in the Live Below The Line campaign, which has already been seen in other countries including the United Kingdom, Australia and the United States.

The challenge put to participants was to spend 5 days feeding yourself with NZ$2.25 a day – the New Zealand equivalent of the extreme poverty line.  As a means of comparison, this compares with Aus$2.00 or US$1.25 per day.  That’s not much, is it?  The idea behind it is to get people thinking about how it is to live in the situation of extreme poverty, something faced by 1.4 billion people in our world today.

I was fascinated to read an account of one woman’s experience of being on the Challenge:

“By day two, my coordination was down, I lunged onto someone in a group fitness class, and I only managed half of my usual Wednesday workout before declaring myself too tired! On average I needed an extra two hours sleep a night throughout the challenge, my energy levels were so zapped, and I lost 2kg in 5 days, which didn’t strike me as the healthiest of crash diets. Its (sic) clear that to live like this everyday would be detrimental to your health.

But I think what got me the most during the challenge, was the effect that being hungry has on your brain. I found myself making basic errors, simple spelling mistakes and needing people to repeat themselves on the phone – my concentration was shot to pieces, and one day I wore a top inside out for an  hour before I noticed…

For me it adds huge weight to the current debate about food in schools, having witnessed first hand how useless I was when my brain hadn’t been fed, I can’t see how a hungry child is supposed to learn or retain information at school, and that’s looking at life in a modern, developed country – let alone in countries where people are trying to survive on under $2.25 a day.”  (1.)

This comment really hit home hard to me for a reason, that actually I wasn’t expecting.  I’ve never had to live in extreme poverty thankfully, although my parents were far from wealthy when I was growing up.   I have gone hungry though, although for me it was entirely self-inflicted, via the illness Anorexia Nervosa, which I struggled with for many years.  What hit me is how familiar all this is, although I totally accept that mine was borne out of mental illness and not an issue of a shortage of money and access to services.

Interestingly, after years of starving myself, I learnt not to feel hunger and even though I am recovered today, I still find that I don’t feel hungry, even though I may need nutrition.  For those on the 5 day Challenge though, I’m sure they all felt hunger.

I’m wondering whether my training my body out of feeling hungry is the same for the children who do not have access to regular meals?  Do they somehow learn to not feel the hunger pains?  I suspect they probably do, but actually that is far from good.  We need to have accurate messages from our bodies in order to be able to meet the needs our bodies have.  But when you’re in extreme poverty, you can’t meet those needs.

I don’t claim to be any sort of expert on nutrition, or on the effects of malnutrition, but this quote below, describes very clearly the effects to the author of malnutrition caused by Anorexia, very similar to my own experience:

“Physically, things were less than princess-like.  For a start, my hair was falling out.  My teeth were turning yellow and felt loose, like my gums had shrunk.  My pulse was slow. I was hypoglycemic.  I hadn’t had a period in four months.  I was dehydrated.  Constipated.  I was suffering from severe malnutrition and freezing all the time.  My hands, lips and feet were blue.  My eyes were dead.  My body chemistry was all over the place.” (2.)

Not for one moment am I suggesting that eating disorders have some connection to malnutrition caused by extreme poverty.  But it’s clear that malnutrition, of any cause, has a major impact on the body and it’s ability to function adequately.  As well as the matters highlighted above, my body has taken a lasting hit in terms of loss of bone density, reproductive ability and no doubt other matters of which I have yet to learn.  

I was an adult when I inflicted this on my body and mind, but imagine what the malnutrition (regardless of the cause) must do to a child and their ability to function.  I found it extremely difficult to concentrate and focus on standard every day activities.  Simply my brain wasn’t working adequately to cope.  How then, can a child learn and grow when they are constantly under-nourished?

One more thing to consider.  We know that childhood experience has a huge impact on mental health in future years.  My own mental illnesses were in some ways (but not all) a result of things that happened in my childhood.  What concerns me is that if a child is unable to function and grow, what is that doing to their mental health?  Both now and for the future.  I believe that the hunger faced by children in New Zealand, and many other developed countries, is going to have a detrimental impact on the health (including mental health) of our populations of the future.

New Zealand doesn’t look like a country that would have a child hunger problem.  It’s always been said that it is a great place to raise children, and in that respect I know I had a good childhood.  But you don’t have to scratch the surface very deep, to see that children (and adults)are regularly going without food, and that there is a constant battle for some people of whether to pay the rent or buy food for their families.  There’s simply not enough to cover both.  What that tells me,  is that those people need practical help now and if they don’t get it, from you and me, the future for us all doesn’t look good.

.

“The test of our progress is not whether we add more to the abundance of those who have much; it is whether we provide enough for those who have too little.” 

―    Franklin D. Roosevelt

Notes

2.  Robinson, Sancia (1996). Mary Jane – Living through anorexia and bulimia nervosa. Sydney: Random House, Australia.

The Post That Nearly Didn’t Happen

Svenska: Självbetjäningsbutik i Svedmyra

Image credit: Wikipedia.com

“You can get the monkey off your back, but the circus never leaves town” 
―    Anne Lamott,    Grace (Eventually): Thoughts on Faith

This is one of those posts that has sat in my ‘drafts’ box for several weeks as I’ve tried to summon up the courage to identify and write about my atitudes.  Then this week rolled around, and in some parts of the world it has been Body Image And Eating Disorders Awareness Week (BIAEDAW), and so I thought it would be good to get it done for that.  But fibromyalgia leapt up and attacked me for a few days this week and I find it is Saturday (in my part of the world) already.  I’m just scrapping in.

Body image and eating disorders are hard to write about, and I think the reason for that is that they are so personal.  I also accept for people who don’t suffer from problems of either, it is hard to get your head around just how much of a struggle it is.  After all, “why not just eat your dinner and be done with it?”  Or “just stop bingeing, stop vomiting” … sure it’s simple.  But it’s not.

What about the view in the mirror?  “Just don’t look”.   That could solve the problem but the reality is I don’t need to look in the mirror to struggle with how I look.  My mere physical existence can be too much for me some days, and it’s not a case of how everyone at some times hates what they look like.  It’s much more than that, and it invades every part of life.

It’s impossible to escape food, and to escape our physical bodies.  If I never had to eat again I think I’d be sorted, but as it is, I have to eat regularly to maintain that physical body I still loathe, and so I can’t hide from either.

One of the things that can be difficult is the normal, everyday task of a trip to the supermarket.  A lot of people struggle with this chore, for a variety of reasons and in the past I too have regularly run from the supermarket crying, leaving half a trolley of groceries standing in the aisle.  It just simply got too much for me.  I know for a lot of people this is about anxiety, but it wasn’t so much that for me.

A trip to the supermarket, or where ever you buy your groceries, can be a great experience (apparently) through to a nightmare, depending on a number of issues.  For me there are two issues that affect my experience.  One is the availability of money to pay for the groceries, but the much bigger issue for me is that of my attitude to food and my body.

For nearly 20 years I have had a diagnosed eating disorder, of varying degrees of severity.   I used to fit (pun intended) into the Anorexia Nervosa category but more recently have been classed as ED-NOS.  That sounds like it should be a food additive on nutritional information labels but actually it means ‘Eating Disorder – Not Otherwise Specified’.  That can be defined for me as having disordered eating patterns and attitudes while I don’t meet the medical category of anorexia anymore because of regulation of menstruation and weight.  So for me it was a good thing.  It was heading towards recovery.

Recently my psychiatrist told me that he didn’t think it was an issue anymore although accepted there were still problems with my relationship to food and weight.  Somehow I suspect it will always be a battle although now that I am committed to life , it makes an enormous difference to putting food in my mouth.

While there are different categories of eating disorders, commonalities can be seen.  But how an individual’s eating disorder plays out is exactly that, individual.

My reaction to walking into a building full of food (known as a supermarket) will have similarities to others with ED-NOS (and other types of eating disorders) but there are also big differences.  I need to be clear in that because what I share here is my experience only.  It is not necessarily the case for anyone else.

Here’s what happens for me when I enter a supermarket, depending on my mood, even down to what I’m wearing, and how physically comfortable I am;

  1. I’m going to prove I don’t need/want any of this.
  2. I’m going to let myself have whatever I want.
  3. There are too many choices and I can’t decide on anything.
  4. This food is ‘out to get me’ and make me look fatter.
  5. Everyone else in the supermarket sees me as a fat slob who can’t control her desires.
  6. I don’t deserve any of this.
  7. I can’t afford any of this, and I’m going to deprive myself.
  8. I’m going to choose wisely what I need.
  9. I’ll choose all this food but then put it in the food bank bin, because they need it more than me, and I really can’t bear to have it in the house.
  10. Get me out of here… fast!

It’s a battle of wills (the whole way) between the healthy Cate who knows she needs and deserves food, and the disordered Cate who can’t deal with all the decisions about something she really doesn’t want to think about anyway.

Sometimes I can go through the whole store and purposely walk past what looks good and what is my favourite, just to test myself.  And as my eating disorder has always been about claiming control on my out of control world, I can do this really well.  It’s just that I get home and have nothing.  But hey, at least I’ve saved money this week!

Usually I don’t know which of numbers one to ten will be the issue on any given day.  I am getting more aware of my attitudes now and can identify what the problem is.  Sometimes I can now re-think, and sometimes it’s actually just best to go home and try again tomorrow.

Another thing that I struggle with is shopping with someone else.  I hate it because not only am I making the judgements on myself the whole way but I assume the other person is also making these judgments on me.  Last year while I had my parents living with me I struggled with this, and would often end up without the things I needed.  It simply wasn’t as easy as putting the food in the trolley and then paying for it.

My bet is that every person with an eating disorder will battle with this everyday chore.  There is a huge element of ‘I don’t deserve this food’ for many and I know that there will be different issues for every person.  So if you know someone with an eating disorder, spare a thought for them this week.  Everyday, and even mundane, tasks are far from easy.

“I am angry that I starved my brain and that I sat shivering in my bed
at night instead of dancing or reading poetry or eating
ice cream or kissing a boy…” 

―    Laurie Halse Anderson,    Wintergirls

I’m Just Plain Weird

The Butterfly Emerges                         Image credit: imgpress.com

Yesterday afternoon I had an appointment with a new psychiatrist.  My last one, who I hadn’t seen for two years, had flown the nest and because I needed some advice on medication I was referred to this new one.  Now I don’t have a lot of faith in psychiatrists (no offence intended to my friend who used to be one) because in my experience they leap to the wrong conclusions about me.

I have never been a textbook case of anything, so I guess I make it difficult for them.  And then they are always pressed for time so don’t have the time to really find out what it is that makes me who I am.  So I was a little hesitant and stress levels were rising in advance.  That said, I was also curious because I know I have come a long way in my recovery and I wondered what a psychiatrist would make of it.

What I wanted to do (and got the okay to do) is to come off lithium (gradually), which I have been on for about 10 years.  I want to come off it because it is standing in the way of getting some reasonable medication to treat fibromyalgia, which was diagnosed earlier this year.  I talked about this in To Earn Trust After Past Mistakes.  While lithium has created some real problems for my physical health, it has been great for my mental health and my concern was for what might happen if I came off it.  Would my level of mental health go downhill?  Time will tell.

But of course seeing a new psychiatrist involved the full psychiatric assessment. One and a half hours later this new psychiatrist, who seemed to know his stuff, and I felt comfortable with, told me his conclusions.

I’m weird.  I actually already knew that, but it’s interesting to be told that by a psychiatrist.  Next time I’m asked for my diagnosis, do I say ‘weird’?

He also told me that while he could see I was severely depressed in the past and suffering from Post Traumatic Stress Disorder (PTSD) he didn’t see that there was any label he would give me now other than having some serious attachment issues.  As for Borderline Personality Disorder (BPD) he could see that there were aspects of this in me but he didn’t accept that it was ‘the issue’ for me now, as diagnosed two years ago by the last psychiatrist.  We talked about the eating disorder but he didn’t seem too interested in that, accepting that I seemed to have it pretty much under control now.  One thing that he did say is that there were perhaps five or six labels that could be assigned to me, but he didn’t think they are necessary now.  I’m just weird. :-)

Wow!  It’s nearly nineteen years to the day since I was first diagnosed with a mental illness.  I have been collecting numerous labels ever since, although struggling a bit because no label ever seemed to fit me perfectly.  When I was given the dreaded BPD label two years ago it actually felt a bit of a relief, because I could finally see something that actually fit.

Now it seems I don’t have any labels.  This is very odd.  I’m sure ‘weird’ is not in the DSM-IV, although I prefer it to some other labels I’ve had.  Maybe it is in the DSM-V, which is on it’s way.  Obviously (as he said) I still have some issues, that I’m working on in therapy.  And while he was happy for me to wean off lithium he wanted me to stay on the anti-depressant I have also taken for 10 years as a precaution against the depression returning.

This has completely blown my mind.  I think he expected me to dance for joy and I can see that element, but my first statement to him was “so you’re saying I’m nothing“.  Of course he hastened to assure me that wasn’t the case, and then wanted to understand why I would think that.  He then suggested I shouldn’t think too hard about it, and in that he summed me up perfectly.  It was exactly what I was inclined to do.

I am only too well aware that BPD is a personality disorder and is such part of who I am.  My understanding of that has always been that it is not something that one recovers from.  Yet perhaps I have.  I don’t know, and part of me wants to race to another psychiatrist and check that the first one is right.  But as I paid NZ$345.00 for this information today, I won’t be rushing to another any time soon.  At that price once in two years is quite enough.

This information is still sinking in and weird is exactly how I feel.  One on hand it is great news to not have those labels and to know my hard work has paid off, yet for nearly 20 years I have been labelled a psychiatric patient.  And believe me, I did it in style.  If one can call it that.

So what am I now?  Other than weird?  I’m not sure.  Time will tell.  Life is far from perfect, but it is so much better and the butterfly is finally emerging.

I am spinning the silk threads of my story, weaving the fabric of my world…I spun out of control. Eating was hard. Breathing was hard. Living was hardest.

I wanted to swallow the bitter seeds of forgetfulness…Somehow, I dragged myself out of the dark and asked for help.

I spin and weave and knit my words and visions until a life starts to take shape.

There is no magic cure, no making it all go away forever.  There are only small steps upward; an easier day, an unexpected laugh, a mirror that doesn’t matter anymore.

I am thawing.” 

―    Laurie Halse Anderson,    Wintergirls

Hope For Discarding The Imagined Ugliness

Image credit: FB-Observing the Sounds of the World

A few weeks back I wrote Imagined Ugliness as an introduction to my battle with body dysmorphia, an issue which means it is  difficult, if not impossible for me to see how I really look.  It was difficult to write and I was relieved to get to the end, but I did promise to pick up on it again…

The ‘Imagined Ugliness’ came from a title of an article I read about the subject, and it completely summed things up for me… except I don’t see it is imagined, I see it as very real.  After sharing this post, a (in-real-life) friend wrote to tell me she always thought I was ‘gorgeous’.  I’ve known her for a very long time, although we live in different parts of the country now so haven’t seen each other for some time.  After the shock died down ( I was gobsmacked that she would describe me that way), I quickly told myself that she was wrong, or she was just saying that to make me feel better, or… well anything other than that she might be telling the truth.  I still don’t know, although I know that I trust her opinion.  I also know she wouldn’t say something unless she really meant it.  That makes it hard because then perhaps I need to believe her?

I realised too why it was so difficult for me to write that last post.  It’s because I don’t think I look like I should to have this issue.  Crazy isn’t it?  I don’t know what I look like but I’m already judging it as not appropriate somehow.  And what right have I to say anyone with BDD should look a certain way?  It’s a little like the eating disorder.  When I was Anorexic I couldn’t see it and so concluded that I didn’t look like someone who would have Anorexia.  I didn’t think I fitted the image.  Interestingly, I can see that I looked the part alright.  The odd photo tells me that loud and clear.  There is no ‘right’ way to look with Body Dysmorphic Disorder (BDD), and it’s challenging for me to realise that actually I don’t only judge myself but also others who struggle with this.  And that’s not something I want to do.

Today I got my haircut.  I have mentioned before that I hate doing this, and actually it is beyond me to understand how some people love it.  What it meant is nearly an hour of my image in the mirror right in front of me.    I couldn’t get away.  Plenty of time for self-examination and self-criticism.  In between answering dumb questions about how many children I might have and what I do for a living (that’s all part of why I hate the process) I actually came to a conclusion that actually I couldn’t possibly look the way I was seeing myself.  It was too distorted and… well I’ve never ever seen anyone else look that bad.   So maybe it’s not possible.  Maybe a part of my brain is lying to me.

Why am I posting all this?  It’s not just for the sake of stripping bare my soul to you.  It’s because I’ve realised that in a way I’m too comfortable with BDD.   The way I see and feel about my body has been this distorted since I started to hear that I was a ‘big girl’ back when I was about seven years old.  While it has caused some serious turmoil and distress over the years, I’ve got used to it.  I have just accepted it, assumed it would always be that way and adapted my life around it.

Today I can see that what I see in the reflection is distorted and I have been making my life accommodate that.  I’ve made a life where I hide from the world, keep myself separate from other people, and stay away from mirrors.  And avoid the hairdresser.

Now I am realising that it’s not what I want for my life anymore.  I want better.  Maybe I will never absolutely love how I look, but I at least want to know what is real.  The reason I am posting this is to in some way hold myself true to this.  Work to change.  It doesn’t have to be this way.  I’ve come far enough to realise that change is possible, and now it’s time to find a way to change this.

I feel quite hopeful.  I’ve got some work to do to turn around the distortion but I’m lucky enough to have good help to do this.  What also helps (interestingly) is that I no longer feel the need to hide.  That fear is being lifted somehow, although I’m sure that in the right location I would still be fearful.  Being stalked over such a long period taught me that hiding myself was perfectly natural.  Actually it made total sense because it kept me safe.  If other people could see the real me (even if not the distorted image I chose to see) it meant to stalkers could see me too.  That was the last thing I wanted if I was to feel in any way safe.

It’s a funny connection between the BDD and the stalking but it makes complete sense to me now (hopefully I’m making some sense in sharing about it here).  I was almost ashamed of who I was, ashamed of what I looked like, because it was that primarily the physical way of seeing me that the stalkers based their obsession on.  They really didn’t know the real me, how I think, what I feel, so it is logical to want to deny who I am physically.  I blamed me for their actions, even though I had done nothing wrong.

I’m tired of hiding me from both myself and those around me.  I’m actually realising that I’m tired of cutting myself off from life.  It goes beyond the physical and involves the emotional/mental side to me.  I’ve been doing it for so long now that it just seems natural, but it doesn’t enable me to be the person I can be, or experience the joy that I know in my heart actually does exist.  I know this isn’t an instant transition but I feel more hopeful that I have for as long as I can remember.  Somehow I am going to make this work.

I’ve posted this music to finish not because I need someone to sing it to me.  I really need to learn to be able to sing it to me myself.  This is a journey.

I’m Not Having A Baby

Woops!
Image via gatewaywomen.com

The advertising that arrived in my letterbox today announced that it is ‘Baby Week’ at my local supermarket.  Actually it’s enough to make me seriously consider going to another supermarket this week, but then the other one that I frequent had a ‘Mother and Baby Week’ last week, so I really can’t win.  What are they doing?  Selling babies?

Well I won’t be going to buy one.  I don’t have one (or six) of my own, and I hate to think what price they would put on them but it is one more reminder that I am not one of the normal people.  I don’t have children.  And usually it’s just best to leave the subject untouched.

According to Statistics New Zealand 13 per cent of NZ women aged 45-49 years (I’m 46) were childless in 2006, up from 9 percent in 1981.  So if 13 percent of us are childless, I think it’s a pretty safe bet to suggest that I’m not normal.  Especially when we throw around the one in four people with mental illness.  Yes, that’s a whopping 25 percent of us in that camp that are not normal.

Let me be clear that I’m not unhappy about being childless, although I prefer the term child-free.  Childless suggests to me that I had one and lost it somehow, and I definitely haven’t ever had one and I haven’t even been pregnant. Unfortunately I had difficulty finding stats on that particular issue so I just won’t go there.  The stats available only seemed to be about women unable to get pregnant.  I wouldn’t know if I was one of those.  I have no reason to suspect it to be the case though.

The thing is that I still think 13 percent of women childless is quite a substantial amount but I always get the impression people think I have three heads or something when I say I don’t have children.  Actually I think I’m normal, just different and I think that it’s a shame that we almost have to hide away.  People don’t know how to handle childless people.  What do they say?  The question about how many kids we have is followed shortly after by stony silence, and after that it’s just damn uncomfortable to all concerned.

It’s been on my mind for a while to write about why I have no children.  It’s a question that people don’t ask.  So I am going to tell you.  There are a number of reasons, which don’t necessarily relate.  I’m going to work backwards and tie each into the age at which each became relevant.  Hopefully I don’t lose you, and let me say that I’m not looking for sympathy or anything like that.  I just think it is something that is part of my life and so I want to tell you about it.

Reason 1 – 46 years

I’m too old now.  Technically I could possibly have a child but do I want a 13 year old when I’m 60?  No.  Not a chance.

Reason 2 –  37 years

My mother was nearly 38 when she had me (I was her fourth pregnancy).  In the mid-1960’s that was pretty old to be having a baby.  It didn’t worry her that much but by the time I got to school and knew how young my friends mothers were, I was appalled to have such an old mother.  I vowed and declared (as that eight year old) that I was not going to be an old mother.  So when I reached 37 years I knew that I had to stick with my declaration.   And yes, I know that women are having babies later in life now, but I was adamant that nearly 38 years was too old.  Sometimes I can be really stubborn.

Reason 3 – 35 years

I was 35 when I discovered I had the genetic blood disorder Alpha-thalassemia.  As an unrelated aside, it’s really weird that I have this because it is very rare in white-skinned people from my part of the world.  Apparently it is generally found in Asian and Mediterranean countries, so unless my father wasn’t really my father (but I looked like him) I have no idea how it happened to pop up in my bloodstream.

The effect that this has on my child-free status is that if I had a child with someone who also carried this disorder, that child would be likely to die within a year of birth, as a result of the disorder.  I only found out by chance that I had this issue and while it is rare, I simply added it to my list of reasons for just not going there.

Reason 4 – 33 years

By the time I was 33, I had six years of mental illness behind me.  I was labelled as treatment-resistant and had been told that I would be on medication for the rest of my life.  This was the point where I decided the risk of passing on a mental illness (which at that stage still hadn’t been correctly diagnosed) was too great.  I wouldn’t inflict mental illness on anyone, let alone for the reason of having a child to love.  I also accepted that I was not in a state to be a good mother because of my mental illness.  I was fighting for my life, in between attempting to take my life, and how could I bring a child into that?  I could hardly look after myself outside of a hospital without trying to look after a child.  It simply wouldn’t be fair and my worst fear (keep reading) of being a bad mother would be realised.  That said, please don’t take this to mean I think that people with mental illnesses shouldn’t be mothers.  I don’t.  It’s simply that I decided that I wasn’t prepared to do it.

Reason 5 – 28 years

I had just got married, and was also very badly depressed and on a heap of medication.  My (now ex) husband was keen to have a family and we talked even about him looking after those children, and me heading back to work.  I had better earning potential (a nice way of saying more skills) than he did and it just seemed to make sense.  Somehow though I could just never picture it (children) happening.  I knew it was what D wanted, and I had gone along with it.  It’s not that I didn’t want children myself, but I just had so many fears.

Another concern was coming off the medication I was on for the duration of the pregnancy.  That didn’t seem a good prospect and I seriously wondered whether I would be dead before the baby came.  I think my staying unwell (particularly anorexic so having no periods) for the duration of our marriage was perhaps convenient to my fear.  For D’s sake I regret that children didn’t come but only because it is something he longed for.   I am pleased for him that he has now remarried and had children.

Around this time that I guess children were most likely I had this fear that I couldn’t bear the thought of another being growing inside me.  It completely freaked me out, although I have never been exactly sure why.  Just the thought was too much.    Actually I have to say that thought of a baby inside me still disturbs me.  Okay, so I’m weird.

Reason 6  – @14 years

Yes, I’ve jumped a long way back to a conversation with my mother.  It was, I suppose, a defining moment for me.  Actually I can’t remember the rest of the conversation, but I suspect it was something to do with puberty, ‘birds and bees’, although I would say that actually I never got that much useful information from Mum on that score.  At 16 I was trying to convince friends that my parents had only had sex four times when I came along, based on four pregnancies (with one miscarriage).  That’s how little I knew and I am mortified as to what my friends made of me when I said that.  They never said.  And I never asked.

But back to 14 and the conversation sitting on the side of my parents bed one afternoon (that’s not that relevant but it is something I remember). Mum told me that she wasn’t a maternal person and neither was my grandmother (Mum’s mother)maternal.  She went on to tell me that this meant that I wouldn’t be either.  What she didn’t do was tell me what she meant by maternal, so I guess I came to my own conclusions based on what I knew of those two women.  I concluded that I would never be a good mother.

For the rest of my life I alternated between feeling condemned as a potential mother so I just should never go there, to occasionally thinking I would prove her wrong.  Unfortunately I veered toward the ‘glass half empty’ mentality and so spent more time telling myself that my mother was right and I would never make a good mother.  Heavy stuff at the age of 14.  Maybe it was her way of preventing teenage pregnancy?  I don’t know.  I probably won’t ever know, but I would like to think she didn’t mean it to have the impact it did.

Only for nieces and nephews!
Image: FreeDigitalPhotos.net 

So there’s six reasons why I never went there.  Interestingly I think the younger I get in the list, the bigger the impact of that reason was.  By far the biggest fear was reason number 6, fear of being a bad mother.  I went on to accumulate a list of my own reasons why I would definitely be a bad mother, and it all made perfect sense to me.  Unfortunately that fear snowballed across the years.  If only it could have been dealt with at age 14, it would have been much easier, but now I can mostly say that therapy saved the day, yet again.

When I was doing some reading on this topic I found that childless women are divided into two camps:  childless by choice and childless by circumstance.  For me?  I think it comes down to both.  I still had the choice (mostly) but circumstances suggested it wasn’t such a great idea.  And of course, fear told me it wasn’t a good idea too.

I’m guessing by now you’re wondering how I feel about all this.  You’re going to have to wait for another post, because otherwise I will have you here all day.  So stay tuned, I will address how I feel about being child-free soon.

Afterthought
One thing I wonder though, and had I done gender papers at university perhaps I’d know the answer, but I wonder why this is only an issue for women?  I don’t see much written about childless men.  Maybe I just haven’t read far enough yet.

**

“But that was life: Nobody got a guided tour to their own theme park. You had to hop on the rides as they presented themselves, never knowing whether you would like the one you were in line for…or if the bastard was going to make you throw up your corn dog and your cotton candy all over the place.” 

―    J.R. Ward,    Crave

Imagined Ugliness

This post is about the subject of body image and eating disorders and so may include content that may be difficult to read. 

I believe it is very unhelpful, to those who struggle with these issues, to use numbers and sizes, because I know from my own experience that we can distort what we read to turn it into new challenges and/or standards for ourselves to strive toward.  Accordingly I will not be using either.  It simply doesn’t help anyone.  If it does anything it just satisfies curious minds.  And I’m not going to do that in case it causes someone else to stumble.

It doesn’t take much to go from a child who has little idea of how she looks, and desperately wants to look like her friends, to an adult who is unsatisfied, still doesn’t know how she looks and eager to learn any of the latest weight loss tips.  One thing leads to another and before you know it is completely out of control… and you still don’t know how you look. 

This not knowing how I look didn’t come from not having a mirror in our home, and I’m not suggesting that it was the definite reason for difficulties later, it’s just that now, I can perhaps see where things might have started.

There is a photo of me as a seven year old, with my brothers, kneeling in front of the Christmas Tree.  Nothing unusual about that except I had no idea that I looked like the little girl in the photo.  My school photos from the same time are similar.  I can’t remember what I thought of those photos at the time but now I can see that here was a pretty, blonde kiwi girl.  It’s just that girl is not who I thought I looked like.  It may as well have been some other little girl.  I saw myself as ugly, straggly hair that was no particular colour and…

 big!!!

That ‘big’, tacked innocently on the end of the sentence is really important to this story because I always thought, actually I knew, I was big.  And what I meant by big was fat, overweight, and different from my friends.  Enormous! 

I wasn’t any of those things in reality, but my mother would regularly tell me I was a big girl.  Those exact words.  Right through my childhood I would hear those words and I grew very quickly to hate them.  I didn’t want to be ‘big’.  I wanted to be small and petite, like at least a few of my friends.  To give my mother the benefit of the doubt, I did end up 5′ 10″.  I wasn’t really tall as a child but I guess I was at the taller end of the class.  But if she meant ‘tall’, why couldn’t she have said ‘tall’?  And if she meant I was older, then why not say that?  ‘Big’ did some damage that I still struggle with today. ‘Big’ is like a red rag to a bull.

The thing is there could be lots of explanations for what Mum told me but what matters is that even as a young child, body image was clearly an issue for me.  And as I grew, the issue grew into a problem.

For a minute I need to talk about body dysmorphia and I chose the journal I did to get a definition, because the title of the article is “Body dysmorphic disorder(BDD): recognizing and treating imagined ugliness.” (1.)  I had a laugh to myself because I have never seen it described quite as accurately as I experience it.  Imagined ugliness. 

But really, it’s no laughing matter.  And to me, it is not imagined.  It is my reality.

“Individuals with BDD obsess that there is something wrong with how they look,
even though the perceived appearance flaw is actually minimal or nonexistent…”
(1.)

That’s what the journal says, but what it means for me is that when I look in the mirror I don’t see what other people see when they look at me.  Actually I have very little idea of how others see me.  I just don’t get what they see.  I can look at myself in the mirror for hours (actually I don’t let myself do that anymore) but can not for the life of me tell whether I am big (like Mum said), small, fat, thin, short or tall.  I just don’t know.

I did this exercise today as I was preparing to write this post and it was almost as if the image in the mirror was constantly changing.  I have lost a little weight recently.  I stay away from scales now (well as much as I can make myself) but a friend mentioned I was looking good and said  I had lost a little weight.  I knew she was right about the weight loss because my jeans are loser, but I literally can not see it.  From when I was of an anorexic weight to an obese weight (and yes, that happens more often than anyone admits – more about that later), the image in the mirror looked the same.  How accurate is it?  I have no idea.  I just don’t see myself how anyone else sees me.

I hate photographs.  They are always a surprise to me because I just don’t know what I am looking like.  Of the last photo I saw of me (taken a couple of years ago) all I could think was that I looked pregnant.  And that was not a good thought.  I choose not to use photographs of myself on any social media because of security issues I have expressed previously, but actually I’m glad I don’t.  Because I hate what I see in the photographs.  Maybe what anyone else can see is different but I am not game to trust anyone on that.  I’m sure that the real truth is that my mum was right… and I am simply big (still).

To be continued…

“. . . hell is wanting to be somewhere different from where you are.  Being one place and wanting to be somewhere else . . . .  Wanting life to be different from what it is.  That’s also called leaving without leaving.  Dying before you die.  It’s as if there is a part of you that so rails against being shattered by love that you shatter yourself first.”

 ―    Geneen Roth,
Women, Food, and God: An Unexpected Path to Almost Everything

References

Phillips, K.A. (2004). ‘Body dysmorphic disorder: recognizing and treating imagined ugliness’  World Psychiatry. 2004 February; 3(1): 12–17.

I Wanted To Be Sick

In more ways than one!

For the longest time I actually wanted to be sick.  I know I’m not meant to say that, but it’s true.

Not more mental illness, I wanted to be really sick.  I wanted a physical illness that could be seen and that could be put down to something going wrong in my body.  I was tired of this overwhelming sense that my mental illness was my fault, it was all in my head,  and so it wasn’t a real illness.

During the time that I have had a diagnosed mental illness, most of that time that illness was described as Major Depressive Disorder.  Depression.  There was a big part of me that said it was just an excuse.  I just couldn’t pull myself together.  It didn’t help when people said all I needed was… and that sentence could be completed with a man, a baby, a job…

Seriously people thought that if I had those things, everything would be okay.  No wonder I wondered for myself whether this was real.  Let me say that had I had those things I suspect I would have killed the baby (yes, really), killed myself to get away from the man (well, yes I tried that more than once), and the job?  I couldn’t have got myself a job if I tried.

I stopped eating when I became depressed and eventually I was diagnosed with Anorexia.  And that actually felt better.  It was something that could be seen and it definitely wasn’t something that would be solved with a baby (not possible considering my body weight and lack of ovulation), a man or a job.  The weird thing was that even though I was skin and bone (literally), and I looked awful, people continued to tell me how good I looked.  The most compliments I ever got about my appearance was while I was Anorexic.  There was nothing good about how I looked but some people think any weight loss is good.  The only problem is that Anorexia (or any eating disorder for that matter) is not about weight loss.  That’s just the by-product.

So I went back to wanting a physical illness.  It didn’t matter what.  A cast on my leg would do, anything that would show I was sick.  It didn’t happen.

Fast forward a few years and I have physical illnesses. In 2010 I was diagnosed with an auto-immune condition, Graves’ Disease, which mostly affects the thyroid, heart and the eyes.  That was caused by spending too many years taking lithium, and unfortunately a doctor who forgot (for a while) to check my thyroid and lithium levels.  I felt so sick that it really didn’t occur to me that I now had my physical illness.

Then last year came the symptoms of Fibromyalgia.  It wasn’t diagnosed until March of this year and one of the problems I had was that nothing could be seen.  It wasn’t until I convinced my doctor to send me to a Rheumatologist that I got a diagnosis.  Having the diagnosis helped me feel like this was actually real, but still it’s not something you can see, so how would one know whether it was real?

I know it’s real.  I know that I am in pain all the time, that I am incredibly tired all the time, that I have unexplained rashes on my body, I am dizzy for no reason and more.  There are lots of things I know, but I still struggle to know whether anyone else thinks it’s real and will accept that I am sick.

I read an interesting article from FibroTV called When Emotional Pain Turns Into Physical Pain.  It tied up with what I’ve been thinking for a while now.  They say that Fibromyalgia is often caused by some sort of trauma, they also say it can be brought on by an auto-immune disease (like Graves’).

So I find I’m back to denying that my emotional pain is of value and is significant.  If the trauma theory is correct then I suspect that my Fibro comes from the trauma of our earthquakes in 2010/11 and my father’s death shortly after.  It’s interesting that I have never felt so physically exhausted as I did the day Dad died and I had to do CPR on him for 20 minutes, while waiting for the ambulance to get through a city blocked by earthquake damage.

If you’ve ever had to do CPR you’ll know that it is exhausting and that 20 minutes is a long time.  I have run 20 kilometres before (several times) and hadn’t felt so exhausted.  What I’m driving at is that it wasn’t just the emotional trauma but the physical trauma of that day.  But you know I’m still back to the realisation that my physical difficulties from fibro are perhaps caused by emotional pain, and to be honest I hate that.

For those of you that aren’t familiar with the ‘joys’ of fibro, it involves periods of worsened pain, fatigue, and what’s known as fibro fog (my brain doesn’t operate properly and feels like I’m trying to move it through a thick fog of resistance).  These are called flare-up’s.  My experience is that sometimes I can predict these coming on, and sometimes it’s just a case of waking up in the morning and discovering you’re in the middle of one.  Interestingly the first flare-up that I had (after I was diagnosed and knew what was going on) was at Easter this year.  The significance of it was that it was also the anniversary of Dad’s death.  I hadn’t done anything physically to bring on the flare up, like more exercise than normal, for example.  I spent the five days of the flare-up adamantly denying that the anniversary had anything to do with it.

Some weeks later I had another flare-up.  I crawled to my therapist, determined to keep an appointment I would have to pay for regardless of whether I was there, and came to the eventual conclusion that actually there was some emotional reasoning that could be given to that flare-up too.

As I’ve explained before I am unable to take medication for my fibro, nor am I able to afford alternative treatments.  If this pain and sickness, which is far from pleasant, is caused by emotional pain, what I am going to have to do is work through it with my therapist.  But to be honest, I’m having a hard job accepting that.  If this is caused by emotional pain I trust my therapist to be able to help me but it’s weird.  Getting my head around feeling so bad physically because of my emotions is really hard when I’ve spent nearly 20 years struggling to accept emotion anyway.

Does that make sense?  It’s like a whole new way of thinking for me.  It doesn’t help that I’m looking over my shoulder waiting for my friends and family to say “all she needs is a baby, man,  or job”.  I’m convinced they’re going to say it.  Maybe not the baby.  Hopefully they’ll accept I’m too old for that but only recently I was told to get a job and everything would be alright.  Somehow I have to accept for myself that actually it’s okay to be sick, and no, I might not have that cast on my leg, but I am in sick.

I’m coming to the conclusion that this attitude of mine is a kind of stigma.  Now it’s not just against mental illness but also physical illness.  I struggle to accept that it is okay to be sick, when no one can see what is causing the pain.  In my head, I can tell myself this is okay for anyone else in the same boat.  But accepting it for myself is so hard, but if I want to reduce stigma, I’m going to have to start with myself.  I have to accept that it’s not only okay to have a mental illness but it’s also okay to have an invisible physical illness.

After all, when a stone is dropped into a pond, the water continues
quivering even after the stone has sunk to the bottom.” 

― Arthur Golden,    Memoirs of a Geisha