Another Diagnosis, and Sensory Testing.

There isn’t much as usual to report, because my life is nothing but ED these days, and has been nothing but ED for years. The fatigue means when i’m not in appointments, eating, or purging or exercising, I’m trying to sleep.  ’Trying’ because even sleep sucks with ED.

Yesterday i saw Headshrinker, and he gave me a diagnosis that actually FITS me. I’ve suspected for years that i have PTSD. Yesterday he confirmed it – but calls it Complex PTSD. Apparently this is a new label – not yet in the DSM, but will be.  From what I’ve found online so far, it’s like PTSD, but instead of the trauma being a once-off thing – it’s been ongoing over a long period – layers and layers of trauma. Yes, that’s me. And the other things I’ve read describe me to a T.

Goodbye to the Borderline label – Headshrink says I never had that, I have traits, I have traits of many PD’s – like avoidance, like anxiety, like the past self-harm, but I don’t HAVE a PD. I’m so relieved. I have HATED being labelled BPD. I know it’s not ‘bad’ and having learnt a bit more about it, it’s actually more ‘shitty childhood syndrome’ as one friend’s psych calls it. Not my fault. But it’s a horrible label and carries a lot of stigma. For example, it’s been bothering me more recently that members of a couple of groups I’m in for survivors of sociopathic and narcissistic abuse – lump BPD in with Narcissistic Personality Disorder (narcissists) and Antisocial Personality Disorder (sociopaths/ psychopaths). Along with those, BPD IS a cluster B personality disorder… but it hurts to be likened to the very people who have abused you!

My case manager has been helping me find strategies to try and stay present and safe in my own mind – I spend a LOT of my life ‘not quite here’. Life is a minefield of triggers. Smells, sounds, touch, anything, and I’m off into the past, off and away in my own ongoing personal nightmare. A bit like living in a time machine.

Today we did sensory testing. She brought out a pile of different scents and we worked through them. Most things are attached to memories and feelings so it was a very overwhelming session and I was very far away at the end of it. But we found two that help – peppermint and aniseed – both strong, both a shock to the system for me.  Both of them might help me to stay more present when I smell them.

We are also going to do more testing and aim to have my new home when I finally move in set up to be as safe and trigger-free as possible. The sad part is that I can’t plant my favorite plants and flowers – they trigger me even though i love them. But there are more out there to be found.

I also need to get a rocking chair, she says!! not likely! But I hope one day I will. In the meantime, I will challenge myself to forget what people might think and swing on the swings next time I’m at the park.. what fun

Have you been labelled in ways that you don’t believe fit you? How did that make you feel?

Are you sensitive to smell, touch, taste, sound – do particular sensations trigger memories or feelings in you? 

Rhinos flown to new home by helicopter | The Sun |News

Rhinos flown to new home by helicopter | The Sun |News.

these are the most amazing pictures!!! Rhinos flying through the air.

Hope they make you smile too… although the reason for their relocation is sad.

Lots of love to all xxx

Heaven is a Pool.

Another basic day with a happy twist – Hydrotherapy. I’m loving it.

I was given an early Christmas present last week – granted 6 more sessions of hydrotherapy. Before that I was going to have to take it away and do it myself at a public pool after next week. At the moment there is absolutely zilch cash free for a public pool or the necessary equipment, so this is such a relief. Not to mention the hospital has THE best hydro pool in the Southern Hemisphere. Am i a lucky duck? I am!

I never could swim, and I’ve not ever been very confident in the pool. I’m one of those people who no matter how much they thrash around, SINKS. I’m a sinker, not a floater. There have been a few reasons tossed around by my ex-family – not having enough body fat (could be) but more hurtfully – “She doesn’t need to float. Look, she has  gills on her legs and arms [referring to my self harm scars] she can probably breathe underwater.”

Yeah… if looks could have killed, I’d have been free of them a loooooong time ago.

Anyway, back to the pool.. my session begins with walking back and forward then sideways to warm up, then various arm and back and leg exercises. Then, I strap on the running belt and get into the deep end – the scariest part of the pool for me – and run! Deep water running rules! It’s really just glorified doggy paddling – and when you see me doing it, not even ‘glorified’ – limbs flailing about every which way haha – but even though I’m cheating with the running belt, I never fail to get a kick out of the fact that I’m staying afloat and I’m doing actual laps! Today I made it up to 14 laps. Exhausting stuff, but so goooooood

It’s a worry that I have had to have all this physio and hydro – a reminder of how much I have abused my body all these years. But I can walk, I am getting stronger, I am developing actual muscles!!!!!! It’s been a LONG time since I’ve had muscles. I miss them. I’ve missed being lean and strong, not skinny and bony, but lean and strong and able to DO things – I miss the functional things my body could do.

It’s such a gift, to be getting that back to a small degree… and it gives me hope. My body seems to be getting stronger quite fast – and maybe I can end up doing a LOT more than I imagined possible. Maybe I will go back to ballet. Maybe I’ll be a black belt in some martial art. Maybe I’ll climb trees…

I love having possibilities

What do you love that your body can do? What do you miss that it used to be able to do? 

Did you ever have a time in your life where you cared about what you could do, and how you felt, rather than your weight?

Stuff, and the urge to get it.

Sometimes I don’t think I get human beings.. the nutty things we do.

Are these people homeless, or in the midst of some big disaster, lining up at a soup kitchen or something?

No, they are lined up waiting for the stores to open for Black Friday shopping in the US – a day where people storm the stores and buy more than they probably do in the rest of the year combined.

(Photo courtesy of Times – see more at http://www.time.com/time/photogallery/0,29307,2100287,00.html )

We have a similar – but probably not on such a large scale – phenonemon here in Australia on Boxing Day (the day after Christmas).  The few times I’ve been around the shops on that day, I’ve stood back and observed with something verging on awe and slight panic – what drives people to push and shove and even get violent – to buy things they can buy all year round, and the savings don’t really count considering most of them would spend far more than they can afford and buy things they would otherwise not have bought or wanted?

We humans seem to have such an addiction to ‘Stuff’.

My mother was a hoarder. Bags of rubbish, piles of newspaper, hoards and hoards of everything under the sun. She hated throwing things out.  It made our messy and dirty home messier and dirtier. It also felt really controlling to a kid who was just trying to live, when everything you try to throw out is examined, everything you write is read, (and more often than not misinterpreted)… when you can’t walk a few steps without tripping over crap and when the garbage keeps spilling out and creating more mud and dirt in an already filthy environment.

And it’s soul destroying to live that way.

So why? What drives us to hang on to stuff we dont even WANT let alone need?

I think I might understand in my own way. I hang on to food. I hoard it. No matter how much food I have, I can’t get enough. The thought of not having food, makes me panic big time. But having enough food, or even too much food, doesn’t seem to make that panic go away – I still need to keep gathering.

I can’t walk past a restaurant or food store without feeling like the orpans in an old story – A Christmas Carol, maybe – who are peering hungrily in on the feasting rich.  I constantly feel like i’m missing out, like i’m never going to eat again, like i have to prepare for a long famine.

Thankfully, my crap finances limit this a LOT. Despite all the urges, I can’t accumulate much more than my week’s groceries.. if I had money to burn… I can only imagine my flat would be awash with rotting foodstuffs and vermin. So thank GOD for that.

I think I know why this troubles me. My mother did starve me a lot as a child, withheld food as a punishment or used it as a punishment. And then I had to go and withhold it from myself as part of my eating disorder, too. So it’s part starvation, and part deprivation.

I am never going to go hungry again. I never have to starve myself again, and noone is certainly going to do it to me again. I hope that as long as I keep telling myself this, it will sink in, and I will move beyond this.

It sure makes coping with the bingeing and purging tricky though. I am at a point where I can have a week’s worth of food, divide it up, and not touch it till it’s meant to be eaten.  I didn’t used to be able to do that – if it was there, it got eaten. I used to only buy food daily, and only what I needed for that day. However the drive to keep accumulating food beyond my week’s worth is bringing me down here – and I don’t know how to beat it.  I seem to be constantly in one huge cycle of anxiety and urge, anxiety and urge.

I will beat this some day – I won’t stop believing that.

I still don’t understand why people go so crazy at the shops though!

Do you participate in shopping rushes like Black Friday or Boxing Day sales? 

Have you ever had, or do you have, the urge to collect or hoard anything? How do you deal with this? 

 

Ramble about people who aggravate the sh*t out of me – wannabes.

I don’t want to end up having one of those blogs that is nothing but whinge, whinge, whinge!! And yet if I am true to how I’m feeling lately, that’s the way it’s going to go.

Depression is the pits… it’s really weighing me down and tormenting me. Add to that the fatigue… and I’m out for the count. When I’m not sleeping (or trying to sleep) I’m slow, tired, tired, tired tired… boring, selfish, unable to engage in the chats with my close friends meaning that they wonder what THEY have done wrong when it’s really just me being blah…

And this is all part of the whole nightmare of my eating disorder. And there are people out there who WANT TO BE THIS WAY? Call the men in white coats! They are the nuttiest of the nuts, believe me.

Yeah… i don’t understand people who want to have an ED, and why they think they HAVE an ed a lot of the time. I’m sure most of us have seen way too many examples of the people I mean. The “I <3 Ana 4eva” kind of person, whose current weight is over 200 pounds. They call their diet Ana… WTF? If only they knew the reality. Why are there so many of them out there? They infuriate me.

This is a mental illness. A lot of the time it isn’t really even about the food and weight apart from on the surface. The illness is like that onion where you just keep peeling layer after layer away and it takes a lot of peeling and tears to reach the core of it. I know for me, it’s more about just coping with an un-copeable life. With abuse, when I couldn’t bear to deal with it. With self-hatred, when i could only express it in terms of my body. And so much more. But take away the food and weight and it’s still there.

This is not a choice. We don’t have a choice to develop anorexia or bulimia. We don’t just wake up one day and go, “cool, I want to lose weight, I think I’ll go ana.” The only choice we have, is when we know what the beast is, to fight it. I have been fighting it but OH it’s an everlasting pain in the butt.

This post is a bit of a pointless ramble. I wanted to blog, but I had nothing to blog about. life isn’t amazing and glamorous with an eating disorder. It’s stressful, boring, miserable, EMPTY. I don’t work. I don’t play. I don’t do much to report. I go to appointments, I sleep. I have added back walking, reading, computer time, hydrotherapy… and that’s still about it. You can’t have a life and an eating disorder – the two just don’t go together.

So the next time you think you want to lose weight the ‘glamorous’ way and how cool that will make you… think again.

next time you obsess over how pretty ana or mia will make you, consider dry flaky skin, wrinkles, falling out hair, rotten teeth, blue hands and feet, infected nails, infected everywhere, skin infections, acne like you can’t believe.. and that’s just the outside tip of the iceberg.

think of how pretty you will look in your coffin.

If you still want this…

I pity you.

 

Rant, Whinge, Complain – call it what you will…

I’m going to have one. I find it really hard to complain, to rant or whinge, to tell things as they are.

Actually my blogs seem to be one long complaint.. but I feel like I’m holding back. The other day in my shaky ground post I touched on the reality. But I still pretend things are far better than they are.

It’s ALL IN MY HEAD. That is what makes it so hard. Outwardly people are amazed and pleased at how ‘well’ I’m going. I look healthier than I have in years. I look happier. I sparkle. I seem to cope.

The reality is I’m not coping. I’m freaking out. I can’t cope with life, full stop. Every day is filled with dread. I want to crawl into a hole and stay there forever and pretend I’m not even there.

Every day I still wish I could die. Just to get it over with. I don’t WANT to die.. but it seems like life is never going to be okay. I’m never going to be okay. I’m always going to be on the fringe of things, outside, looking in. An observer, a pretender, but not really part of it, because I can’t FEEL the part. I’m numb, lost, scared. But I’m not numb at the same time. I’m anxious, terrified, panicked, frustrated, depressed.

And so, so TIRED.

God, I’m so tired.

We just don’t get a break in life, do we? It just keeps on coming. There isn’t a pause button and there needs to be one!

I don’t know what to do. Something has to give, and yet nothing seems to be likely to. Life is just too hard for me at the moment and yet I have to keep fighting anyway.

How do you cope when life is just too much? 

 

Weight Comments! Arrrgh!

Lately it seems that every man, woman, alien, and their dogs are commenting on my weight! It’s driving me nuts.

Every friend and neighbour I’ve seen in the last few months has, without fail, made a remark along the lines of -

You are looking so WELL, Fiona!

Are you gaining more weight?

You are getting bigger!

And so on. And I am not coping with it at all… every day I feel like the fattest heffalump in the world – despite logically knowing my BMI puts me at underweight, despite my psychiatrist telling me every week I’m still thin. I know he would never lie to me, so that’s kept me a little bit sane.

But then..

Today my psychiatrist commented on my weight too! Arggh! Is this “Comment on Fiona’s Weight” year?

He pounced the moment I walked into his office, before my backside had even connected with the chair -

You are almost the right size to do ballet! Have you ever thought of going back to ballet, for enjoyment? How much did you weigh when you were doing ballet before? Was it about this much?

I mean, WTH – I weighed quite a lot more when I used to be a dancer, not least because I was very strong and muscled, but also because I can’t dance now for a reason – I’m way too weak. I hope that my doctor doesn’t subscribe to the ‘ballet dancers must be thin’ school of thought that would be a huge disappointment.

Of course, his comments on top of the many other comments from people lately, caused me to be even more anxious than I’d already been feeling, so I questioned him about whether he thought I looked bigger, or different, or like I was gaining weight. And he said -

No, not at all.. you look almost normal. No I mean you look very very skinny still, from the knees up.

From the KNEES UP? Huh?

Yes, your calves are really big because of all the walking you do, but from the knees up you are still too skinny.

Thanks Doc. Now I feel so much better. NOT.

ARRRRRRRGH!!!!

Weight comments can be a minefield when you have struggled with an ED. What are the worst and best comments you have received, and how did they make you feel?

 

Shaky Ground Again…

I don’t know if it’s just that it’s very hot lately, and the heat makes me tired and sick, or if I’m on the verge of full-on relapse.

My behaviours are still not good. I’ve maintained my weight but I’ve been bingeing and purging all over the place.  Lately I’ve gone back to that pattern of not keeping anything down at all and finding it hard to eat or drink anyway.

I don’t want to go back.. not after all this time experiencing freedom and a better life than i had.  I just have to think of the HDU to cringe, to want to run and run and never stop running.

And could my body take it again? I don’t think so.

I have to choose, I have to choose to live. Or choose to die. And if I don’t grab life and turn this around, then that is choosing to die.

I am not ready to give up yet. I’m exhausted, every day I wonder if I can possibly keep going another day… but I’m not ready to lie down and let it win. I hope I never am.

Wake Up, Fiona! And Goodbye to a ‘Friend’ who never was.

I seem to have fallen off the planet as far as blogging goes! I know that my friends who also struggle with eating disorders will understand too well – sometimes all we can do is hang on for dear life and try to weather the hard times til life settles down again.

I have still been a lot better than i was for all those years, but struggling more, if that makes sense. I’ve never been ‘recovered’, just better than I was. Stressful times seem to mean that I fall flat on my face and all the flak that flies around me on a daily basis snows me under!

My friend… oh boy. A massive source of stress.

I met this friend, who I will call Miss Drama, or rather, MRS Drama as she’s married – quite a number of years ago on her first admission in the ED program. She was actually there as a prevention process, not having been very unwell with the ED but going downhill fast and definitely at risk. Every now and then, if they happen to have a spare bed (miracle) and someone is at that stage, the hospital seems to go “Oh we might be able to save this person before they go down the gurgler!” Their hearts are in the right place and I think we would be so much better off with early intervention, but unfortunately it’s probably the worst place they could put someone at that stage, with people who are at the complete opposite – drop-dead sick, so it most often seems to trigger them to get worse

Now I thought Mrs Drama was the loveliest girl I’d met. She was sincere, sweet, a Christian, she was caring, a lovely mother… and we made firm friends. We remained close friends to very recently..

Sadly over the years Mrs Drama has been mucking up a lot. Okay I know this is not nice of me, but seriously, after so long in hospital among other patients you get a very finely tuned Bullshit-radar and I could smell this a mile off. Attention seeking behaviour, constant drama-creation, and that wallowing kind of  ”I’m so sick” manipulative stuff I hate so much.

Over a course of at least 18 months, Mrs Drama has been texting me, messaging me, live-chatting me, on a daily, many-times-daily, basis, about how sick she is. She’s always having chest pains, always fainting left right and centre. Passing out for entire weekends. Unable to get out of bed, unable to drive her kids to school, unable to feed them as she’s been too sick to shop for the groceries. I spent an afternoon arranging -with her consent – an agency to go around and help her with this stuff for no cost when this was happening and what did she do, not even open the door when they arrived.

She couldn’t keep anything at all down. She couldn’t eat or drink and have it stay down. And she was addicted to diuretics. She kept going on stupid detox diets.  She developed Kidney Failure and had a heart attack and a miscarriage. And where was her husband in all this? Apparently never home.

We share the same psychiatrist and I was frustrated as she constantly cancelled appointments with him, refused to get the blood tests he ordered done, refused to fill or take the prescriptions he gave her.

She was meant to go inpatient to the private Eating Disorders Program through him – was priority, “top of the list, he says I’m going to die before he sees me next, I’m so sick” but it never happened, because she cancelled every single appointment and he can’t put a patient in hospital if he doesn’t even get to SEE her.

Understandably I’ve been beside myself with worry. I started to cut the crap and talk seriously to her about the fact that she seemed to be in denial, she was sabotaging any attempt to help her, she was affecting her five kids with her behaviour – the oldest a young teenage girl, at that age where food/weight/diet/body image stuff really sticks and makes an impression, especially when it’s your MUM. And the last straw was when she was going to put her daughter on a DIET.

She doesn’t want to know it. And then I found out, she’s been doing all that manipulative “I’m dying help me” stuff to many of our mutual friends. For ages. And her own sister says, there is nothing wrong with her. She’s fine. Days that she was too sick to get out of bed and fainting, she was gallivanting round a local theme park for example.

I was so furious.

So understandably we are no longer friends.

But the fall out is horrific. And I feel like i’ve been run over by a train. To make things worse, I just found out that apparently there are some ‘groupies’ that idolise my eating disorder… mostly from the hospital. That makes me want to spew. Sometimes you really wonder who the sick ones are. To want something that’s been such a hell… they can have it, if only I could give them it!

 

So.. Another lesson in Boundaries, in keeping myself safe, and in taking everything with a MASSIVE boulder of salt until you know for SURE it’s legit.

Sometimes people just suck.

Luckily I have had amazing support from my true friends, who remind me every day that life is worth living and full of wonderful people. And not to concentrate on the few jerks who seem to make it not so good.

Have you had problems with friends you have met who also have been unwell – with boundaries, with their behaviours… or have you just been extremely worried about a friend who won’t see how sick he or she is when everyone else around them can? 

How do you deal with people who seem to want to be like you, when being like you is hell? 

 

Been Missing In Action Lately

I haven’t updated for a while, and I’ve only been making very short comments on my friend’s blogs when I can.  I guess it’s like this:

I have extra time to organise my move to my new place, because the housing department are going to modify it – smoke alarms, doorbell and phone lights for the deaf – before I move in, yet I’m still stalling and having anxiety attacks about the actual packing and moving.

My wonderful Home and Community Care worker has had a promotion – which is wonderful, but it means she’s leaving and I am terrified of having a new worker who I will have to get to know from scratch, not to mention I’ll miss her.

And I signed up for NaNoWriMo – National Novel Writing Month – which is on right now! The idea is to write 50000 words in 30 days – and it all has to be part of your novel, blogs don’t count. That’s easy, right? 1667 words a day is easy. What to actually write is not. Day six, and I think I’ve given up  It’s frustrating as I have SO much to share… and yet I guess, it’s just not the right time. I hate giving up, but I had to admit it was stressing me out and wasn’t the priority either.

So hopefully I’ll be back soon to just blog a bit more. Hope everyone has been well.

What have you been up to?