Dragging the weight

Today my care coordinator discharged me from the CMHRS, stating there wasn't anything else for them to offer me, she said although my weight is under what it should be it isn't of critical concern and that I still weigh too much to be able to access the therapies I feel would help me.

This came as quite a surprise after I saw her two weeks ago, when I said I felt I should discharge myself as the work her and I were doing wasn't helping me and she could not accept that I didn't want to treat my eating disorder as self harm. Her view was that we had to delve into my life to find what had happened to me in order for me to self harm by restricting food. 

For me this isn't what my eating problem is about. 

I know abuse and trauma are often key parts of why people become mentally unwell, but I also know that I am not suppressing abuse from my childhood or some traumatic event. 

I told that if she didn't understand that and see it the way I do then I'm wasting their time. I said I would rather contact a private therapist who could work through issues with me and stop focusing on the eating being a form of self harm. Of course restricting food intake can be classed as a form of self harm, but I do not do it cause myself pain or to torture myself for some reason. It's quite the opposite, as not eating makes me feel good. 

She told me I was due to get a new care coordinator today, as she was going to a new job, and she said hopefully the new care coordinator would have a different approach that I would take to better.

So today I turned up ready to meet my new care coordinator. Only to be told that they had discussed me after my last appointment and decided yes I could be discharged. 

My care coordinator said that my consultant had said if I didn't want the clinical management work around self harm then there wasn't anything else they could offer. 

This upsets me, not because I feel rejected from their service but because I have always backed up the NHS. Through it's constant criticism I have always believed that the NHS is a wonderful thing that we are lucky to have. In my job I've been on the receiving of a lot of criticism from patients and families, I always saw their side but also thought 'patients don't see how hard it is for staff, they don't see the lack of resources or the lack of staff, they don't understand that we are doing our best under immense pressure'.

Now, when I talk about the NHS I don't mean physical care. I've had a lot of physical health care hospital stays in my life and the care has always been amazing. 

But the mental health side is lacking so much. 

It isn't nurses fault that there isn't enough money in the NHS, but for nurses and doctors to state so bluntly that you just aren't thin enough for help is almost cruel? I could never even imagine being so blunt to a patient about something that is clearly such a huge issue for them. It left me feeling as if I wasn't taken seriously at all, and made me question if there's even anything wrong with me. 

When I asked my consultant what help I could be given for my laxative addiction, she told me to 'just cut down on them'.. as if I hadn't ever thought of that?

People speak of an obesity epidemic that's hit the world, what about the mental health epidemic? 

So much of the NHS is amazing and there are brilliant mental health services but they are so few and far between. 

Having a mental health illness is like carrying a weight tied around your heart. Some people manage to drag themselves along with the weight, stumbling through life. Some, over time, learn to balance that weight and live a decent life. Others cannot lift that weight alone. 

I've spent the last five years lifting those weights for people. That's what I want my career to be built around. If I can find a way to drag my own along and carry on. 

??

Will I ever be happy with who I am?

As I am now, I have very little energy. I have huge bags under my eyes, my hair comes out in big clumps and snaps at the ends and I've half most of the muscle mass I had. My knowledge on nutrition and the human body tells me I would feel physically better if I ate more and put on a bit of weight. But my brain tells me I can't do that because it may give me more energy in the short run but it will make me feel even worse mentally. Even more depressed and digested and repulsed. 

My knowledge tells me that I am underweight and that's why I'm tired. 

My mind tells me I'm still too fat so I can't eat anymore than I do. Infact I need to keep cutting down what I eat. My mind tells me that people don't think I look thin enough. People think I look a normal weight, probably chubby. 

My mind tells me you have to push harder because 'normal' is too big. I am at constant war with myself because I know logically what is healthy and what isn't. I see people who are healthy weights and people who are overweight and I know they look beautiful, they look attractive and good. So why can I not be happy like that?

For years and years I've restricted my intake, trying never to max 500 calories a day. Clearly some days I do go over this but many days I manage to stay well under. The feeling of only eating an apple is exhilarating in many ways. Like a power that runs through my veins as if my brain is saying fuck you to my body and to science, I don't need to eat. 

But as exhilarating as it is, it's also detrimental to me physically and it's exhausting. 

So how will I ever be content with who I am? 

Will I actually ever know who I am? Will I be constantly at war for the rest of my life? If so, what sort of a life is that? 

The eye of the tornado

Today is the day I should have got my results for the end of year pharmacology exam. The exam that takes you into final year and brings you that step closer to qualifying as a nurse. 

But I didn't get my results as I didn't get to sit the exam. 

Instead my life was, once again, dictated to me by my illness. 

In the same way that my illness dictated which friendships I'd lose, the same way it broke my year and a half relationship. My illness decided it would also change my career path. 

Granted right now I am only having a year out of university, so my career path could stay the same I many ways, and only be delayed by 12 months. But it will be different, because I am different. 

There is no guarantee that I'll go back to university. There is no guarantee of anything really. 

Mental illness is a difficult pill for anyone to swallow, and being in the midst of it almost feels like a tornado. You are pulled this way and that way, pushed down and down and constantly smothered by it. 

It is hard for everyone it touches, not just people who have the illness but their friends and families too. When I first became unwell I thought I could list easily the people who would stand by me, but if I had listed 10 people then I'd have only got 3 of them right. 

You see who is left standing when the tornado hits. 

Along with the people you expect to stand by you, you also expect to still have your job or your university course. You expect, and hope, things could stay the same. 

But the tornado is in control, not you. The tornado is set to wreak havoc and isolate you.

I'm so bitter and angry. So bitter about the relationships I've lost during the last six months. I'm so bitter that my degree has been put on hold. I'm angry that I have no control. 

I am a tiny, insignificant pawn in the eye of the storm.

Happy Monday

I sit on the floor in my hallway, my cat is meowing next to me, scratching at the front door. You want to escape too do you, kitty? Her big eyes stare at me, as if she's saying Catharine just get up and open the door for me. But if I did that, you might never come back to me. I wonder if she knows I'm different now, I wonder if she recognises me anymore. Animals have instincts don't they, they sense when something is wrong, they sense danger and even sadness. I wonder if she senses that I've lost myself. 

I sit there reading an article written by someone recovering from an eating disorder, she writes that she always felt a fraud, like a bad anorexic, because she never fitted what society class as being someone who is anorexic. 

I don't really know what my diagnosis is anymore, but it doesn't make a fucking difference anyway. Some professionals throw around the word anorexic, some say ednos, some think I've simply been abused as a child and won't admit it. But I remember the first time a nurse said the word anorexic, I nearly laughed out loud. How could I be? Didn't she see the rolls of fat through my tshirt? What was she talking about. 

It doesn't matter about the figures and statistics. It doesn't matter that I meet the generally required for diagnosis bmi of less than 17.5. 

I'm still not thin enough.

She was crazy. Everyone is crazy. Maybe I've gone crazy. Maybe my mind has slipped away. I've lost my fucking mind. Beezlebub. 

The situation is dire

There are 202 NHS beds for children and young people with eating disorders. On top of that there's a handful of private hospital beds with NHS funding. 

I'm not sure of the exact number for adults, but when you think how often eating disorders start in adolescence, this figure is disturbing. This situation is dire.

I am, by no means, someone in a bad situation, not in comparison to other people. 

This is not a pity party. But I am someone who is told repeatedly that I am not thin enough to get help, I am still too heavy. My consultant psychiatrist sat opposite me a few weeks ago and asked in an ideal world what help I would like, I replied that I wanted therapy around the way I view food, the way I view gaining weight, in order for my brain to understand that healthy weight gain is not a negative thing. She smiled at me, and said 'oh well you don't weigh little enough to get that sort of therapy'. Again, this is no pity party, but I sat there weighing 45kg. 

Yet that is still too much. 

Therefore I am given 'general' mental health help, from a team once a week, who see people with a range of mental health difficulties.

Although I am grateful for this help, the team I see do not specialise in eating disorders.

When I was referred I was told I was an 'urgent' referral. From my course, I know urgent referrals have an assessment target time of a week. I waited four weeks for my assessment.  

In a way I was lucky, as I only lost a handful of pounds in those four weeks. But for other people, those four weeks could be detrimental. 

As well as the physical side of losing weight, there is also the mental side, and a big deterioration can happen in four weeks. 

I know I will never recover through the help I am getting now, and I am lucky I can choose private help. But not all people have that option.

The situations, the waiting times, the help, everything that people with mental health illnesses face have room for improvement. But people with eating disorders, above all else, are massively overlooked, pushed aside, under-treated and made to wait for far too long.

Having trained as a nurse and worked in several different mental health teams, I know all too well that the money isn't there, there aren't enough beds or staff or agencies to help everyone.

It's all over the news that we are constantly slamming health services for not doing enough but, again having worked in many services, I know that professionals are doing all they can do. There just simply isn't enough of them.

Eating disorders become chronic and completely take over your life. 

The best way to beat eating disorders is to catch them before they become chronic. All I can really say is if you know someone who struggles, or if you are struggling, look for help through your GP or online services like b-eat and look for help before it snowballs into even more of a hellish nightmare. 

The nightmare

I've tried really hard with eating in the last week or so. I'm hardly ever having a day where I eat nothing. I've even bought oats, wheat flakes and dried fruit to make my own cereal. 

Yet every day is still a huge struggle. I can't let myself put on weight, I still have to restrict and laxative. I can't carry things I used be able to, I feel pathetic. At one point last year I could lift 120kg on a calf press. I'd give anything to be back in that place. I have a constant headache, my legs ache and I get tired doing simple tasks.

My hair still has days where it comes out in big clumps. My energy levels are still rock bottom and my mood is still dark a lot of the time, but I am trying.

I wish I could see an end to this. 

I wish I could just avoid mirrors or thinking about myself.

When I see my reflection I wish I could rip the skin off my body. My skin burns with this repulsive, strange and foreign feeling. As if my body is not my own anymore, it belongs to a darkness, not to me. The darkness feels all consuming, Beelzebub alive and breathing. How can there be an afterlife consisting of Hell, surely this is Hell now.

Reflect on your blessings

The last few months have been the worst months of my life. The darkness has been unbearable at times. In the recent week or two I have tried so hard to eat a little more than I was, but it's difficult and I'm still not putting on weight. My laxative use renders me half paralysed at times and makes it impossible to sleep properly at night. My blood tests show my immune system struggling. My hair is starting to die and falling out due to lack of nutrients, and I feel weak almost all the time. 

Due to how dark things feel, I decided to try and think about things I am grateful for.

I don't mean the big things in life that we are all grateful for, like my family, friends, my cat. 

All very important things but I wanted to think about the little things that I probably don't even realise I'm grateful for. 

-The fact my flat has a private garden, my garden is definitely my 'calm place'.

-The fact supermarkets sell low fat iced coffees.

-Tracksuit bottoms and slippers.

-The elderly couple who live a few flats away from me, whom I've never actually spoken to, but who wave whenever they see me.

-Johnson's baby bedtime bath soak, it smells amazing.

-My recent weekend stay in Somerset, I love that place and staying there reminded me how much I want to qualify so I can go and work there. 

-One of my close friends just gave birth to a beautiful baby girl. Looking at this gorgeous baby reminds me I have to get better otherwise I won't ever be able to have a baby of my own. 

On top of these things, I am blessed with a loving family and such caring friends. I know in that aspect I am extremely lucky. 

Out of each week, I probably only have a day, or maybe two days, where I can see the good in life and the things I am grateful for. I also know if I carry on the way I am, my body will continue to shut down and eventually that will be the end. I know the fight is far from won but the things I am grateful for push me on. 

'Reflect upon your present blessings' - Charles Dickens 

Nine circles of hell

Being diagnosed with anything, physical or mental, can be a long and trying process. 

It can take time for professionals to be able to diagnosis or professionals may not always agree with each other. 

A diagnosis is not the be all and end all, but for some people it can be comforting to put a label or a name on the feelings they have. 

The diagnosis for my eating disorder is atypical anorexia nervosa. 

The 'atypical' part means that someone meets the majority of the criteria for anorexia nervosa, but not all of it. There is also atypical bulimia nervosa, and the 'atypical' disorders are often categorised as the 'eating disorders not otherwise specified' (EDNOS). 

In my case, I meet the criteria for anorexia, all apart from the fact that most months I still have my periods. In many ways this makes me feel invalid. 

As time goes on and I see more of my care coordinator and more of my psychiatric consultant, I am repeatedly told that I'm not a low enough weight to get any NHS help for my eating disorder.

I have said time and time again to professionals that I don't want physical help, as in being helped to put on weight. 

I want therapy to help my relationship with food and to help stop me seeing food as an enemy. 

I'm so sick of being told I still weigh too much to be helped. I'm sent for weekly blood tests and the slip I am given each time states 'anorexia nervosa' across the top, yet I'm still too heavy to be given help. 

Obviously there is private help, which I am looking into but I lack motivation to follow these things up or to make effort to contact anyone. Mainly, because I have little hope of this getting better. 

After hours upon hours with professionals, discussing every part of my life, the only statement that is left ringing in my ears, is that I am still too heavy. 

Dante wrote about nine circles of Hell, I am certain I am within one of them. 

Roo's strengthening medicine

My morning routine that used to simply consist of a coffee with venlafaxine, now also consists of two vitamin tablets which claim to have a fruity flavour but definitely do not. Followed by a liquid medicine (Roo's strengthening medicine) full of iron and zinc which tastes frankly revolting. 

The worst part about Roo's strengthening medicine is that I have to take it twice a day.

Once the medications are out of the way, my days consist of watching crap television and occasionally sitting in my garden.

Focusing on anything is difficult, I force myself to attempt sudoku and crosswords but my attention span seems to stretch to only a couple of minutes.

I think sometimes people make the mistake of thinking that if you have depression, that means you're sad, miserable, crying all the time. 

Depression isn't that at all. 

Depression is a lack of energy, motivation, attention. Depression is numbness. I have days and days on end where I feel next to no emotion at all, just an empty numbness. 

Of course, there are days when I feel the sadness people associate with depression, but the sadness definitely does not define depression. 

Where is summer?

Days seem endless, full of assessments, visiting different hospitals to hear about a range of treatment programmes. 

I know almost everybody wants to help but nobody knows what to do. 

Nobody can diminish the darkness. 

I desperately don't want to go into a hospital, but my other options seem bleak. 

I'm tired of being tired, of being exhausted. I'm tired of feeling so mentally drained.

I long for someone to discover a medication that can stabilise this disorder, that can silence the voice of this disorder. 

Someone once said to me that it can snow as late as May but summer will always come in the end. That phrase has always stuck in my mind and all I can do now is to hope that somewhere along the way, summer comes and the darkness ends. 

Stigma/my diagnosis

The stigma that mental health illnesses carry are like dead weights. 

I can only write about things I have experienced myself, things I have heard people say or stuff I've read about. From my experience one of disorders that carries one of the heaviest and most detrimental stigmas is personality disorder. 

The name 'personality disorder' covers a range from avoidant to schizoid to narcissistic to emotionally unstable or borderline. 

Perhaps the most commonly heard of personality disorder is emotionally unstable/borderline. 

Borderline is the name given in DSM-IV and unemotionally unstable in ICD-10, but the criteria for borderline and emotionally unstable are almost identical. 

DSM-IV and ICD-10 both list the features of this disorder, and a person does not have to meet every single feature to be given the diagnosis. 

EUPD, unfortunately, holds a stigma with it that people with this disorder are manipulative, attention seeking and 'badly behaved'. That when/if they self harm or attempt suicide it's always only for attention. They purposely cause arguments and often make false allegations, they can't be trusted and a common phrase I hear about patients with EUPD is that they 'love being in hospital'. 

In actual fact, EUPD means the person has problems regulating their emotions, often leading to self harm. They may have unpredictable mood swings and/or not know why they feel certain ways. They often have identity issues and insecurities, making 

EUPD very common in people with eating disorders. 

But, it seems some healthcare professionals do not deem personality disorder as a 'real' mental illness, and do not view it in the same way they see bipolar or schizophrenia.

Patients with EUPD can be hugely challenging, as can patients with any other illness, but is this a reason to tarnish the name of personality disorder so new patients are almost written off before even being met, simply because of their diagnosis.

My official diagnosis is an atypical eating disorder, co-morbid with depressive disorder and traits of emotionally unstable personality disorder.

I wasn't surprised when I was given this diagnosis and it didn't upset me, but it does make me hope I am not seen as a manipulative or attention seeking patient. Even though it isn't a 'full' EUPD diagnosis, people are still quick to stigmatise. I knew I would be told I had EUPD traits due to my self harm, suicidal ideation and identity issues. 

Luckily, I knew myself for twenty five years before this diagnosis and I know I am not what any stereotype says. However, some people are not as fortunate as me and they get almost consumed by the stigma of disorders. 

Surely the best way to erase stigma is to remember that every illness is a valid illness and to try and see past the difficulties that mental disorders presents.