My shocking anorexia treatment and how the NHS has abandoned me again

After a recent spell of in-patient treatment for anorexia after my BMI had nearly gone into single figures, I returned home with no community support - a common problem for many with eating disorders.

How I look today. An image of me a month ago would be too bad for people to see

I had no diet plan, no professionals to speak to and no idea of what to do, with emails asking for help or advice ignored. Since then, my wife and I have had to go it alone in a bid to keep my weight from plummeting again, while dealing with the daily mental struggles that living with anorexia brings.

For those who are unaware, anorexia is the biggest killer of all mental health conditions. It is also that rare thing - an illness which the sufferer doesn't often want to recover from. 

I know that from personal experience. It is why my family and I have spent years asking for help but receiving none from the NHS, and even having referrals to specialist hospitals who can help me blocked.

My weight is now around 6 stone 5 (a BMI of just over 13), a weight which I really like even though I know it's not healthy for me. How, then, do I find the motivation to put on weight? And if I do put weight on how do I not panic that it will keep increasing to a point where it becomes unbearable?

During my recent course of treatment I had to give up my daily exercise and was banned from leaving my ward, while given a meal plan which saw me gain a stone of weight in one week - well above the guidelines and which left me in danger of refeeding syndrome which could have caused substantial damage to my health.

Not only that, the meal plan caused significant IBS and nerve pain flare-ups, leaving me in agony all day in my bed as I was banned from walking. 

I had to fight off being fed through a tube, I had to have someone watch me every time I ate, and the food I was given sometimes contained ingredients I am intolerant to even though I requested free-from meals.

To say it was traumatic would be an understatement.

Back at home and feeling physically and mentally broken, my wife and I have been left to pick up the pieces and to try and navigate our way through this nightmare together - whether it be trying to devise meal plans ourselves or stop me from over-exercising or having a mental health crisis every time we check my weight.

We're also fighting to get me proper eating disorder support which incorporates my other conditions of Functional Neurological Disorder and IBS.

To say this has been tricky is an understatement. As expected, I came home in a state of euphoria and willing to try different foods which previously had felt intolerable. I was just so happy to be able to get my life back and to be surrounded by family again.

My weight only dropped a fraction in the first week and I felt so determined to not let myself get so ill again, even though I knew deep down this euphoria would never last.

So two weeks in, where am I?

Every morning and evening is a struggle of my mind. Any surge of energy, drop/rise in hunger or IBS flare-up is taken as a sign that I'm either gaining or losing weight, causing panic.

I've managed to continue having three meals a day (up from two previously) but have gone back to exercising on my cross trainer every morning despite hoping to have kicked the habit.

I've lost weight and wanted to cry, I've gained weight and wanted to cry. I've tried to find ways to occupy my mind so I don't think about food, which in turn has driven me a bit insane as I struggle to pace myself.

The pain and exhaustion has at times left me wondering what's the point. I'm still no closer to a long-term solution, and whenever I'm alone (which is often) I go mad. 

From not wanting to know my weight I now want to weigh myself every two days. One day I want to starve myself, the next I panic my weight is dropping and I over-eat to such an extent that I physically can't stand the sight of food any more.

Right now, I'm not coping. I've reached out for help but there is no community dietician able to help me. There is no psychological support. And even private consultants won't help because my BMI is still so low that they don't feel comfortable working with me.

I have nobody on a daily basis other than my wife who calms me down, helps me decide what to eat when I can't decide, helps me prepare it when I'm too ill to do so and brings it out for me every night, even when she is tired and needs to go to bed after a long day of parenting and working.

The good news is the fight is still there. I'm determined to be there for my family, but anorexia is evil, and with my pain and IBS there is only so long I can sustain this before I end up breaking.

I write this not for sympathy, but to raise awareness both of anorexia and the shocking way people with eating disorders are treated in this area. I know I am not alone with these experiences, while some have been less fortunate and have sadly passed away.

If anyone needs help, please do get in touch. I'd love at some point to start a support group for people with eating disorders in the Peterborough/Whittlesey area where we could meet up and just talk openly about our lives. 

If enough people came forward, I would definitely look at setting something up.

Thank you to those who have read this, and my other blog posts which highlight previous failings in my care. And to the people denying me appropriate treatment, I hope you feel ashamed.