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Over the last month or so I've found it impossible to even so much as glance at anything to do with eating disorders let alone do anything useful and worthwhile. I even had to make my excuses to the January meeting of the Men Get Eating Disorders Too charity at which I am a Trustee. I seriously couldn't face anything to do with eating disorders. Nothing. Zilch. Zero. So that's why I've been keeping a bit (or a lot) of a low profile for the past few weeks.


I'm also seeing my therapist, Steve, again to try and tidy up the loose ends of the Chronic Post-Traumatic Stress Disorder (C-PTSD) although I am really not sure how much of the eating disorder related C-PTSD is still there. My therapist believes we've 'processed' most of it using EMDR but I'm not so sure.

I've also found myself in a pretty bad depression - the kind where it's difficult to get dressed or washed or put makeup on, although I've made myself do a lot of stuff over the past week and am sure I feel better for it.

It's such a wretched thing, isn't it? Eating disorders. Wretched for the individual suffering from the eating disorder and wretched for the parents or carers who have to go through it with them followed, in many cases, by some kind of PTSD as a result of the impact of sustained and extreme trauma on the brain.
But, anyway, that's why I haven't been around for a while.
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In the summer of 1993 I remember walking along the South-West coastal path in South Devon. I was six months pregnant and my emotions were all over the place. I remember sitting down on a bench overlooking the sea and bursting out into tears. The reason? Because the sheer responsibilities of impending motherhood had just hit me like a ton of bricks. Did I have what it would take to be a good or even reasonably good mother to the son or daughter inside me? Even an average mother? The sheer enormity of the task I was about to undertake suddenly seamed impossible. With my hormones all over the place, I burst into tears and couldn't stop.


This New Year's Eve that has just passed, I sat in our local pub with my husband, observing family groups enjoying an early-evening drink. A young father was holding his toddler, a little girl was playing with her Barbie-pink tablet and a new mother was discreetly breast-feeding her baby daughter.

Again, the enormity of the task of parenthood hit me. I could see the sheer love and care being lavished on these youngsters from parents who obviously wanted to 'get it right'. Ahead of each of these tiny human beings, these parents' much-loved children, there lay a whole lifetime.

I wondered what that lifetime would bring...

Back in 1993 when I was in tears by the sea I could never have imagined what we would end up facing some 16 years later in the summer of 2009 and subsequent summers. And autumns, winters and springs.

For us, parenthood brought with it a weight of responsibility that we could never have imagined in our wildest nightmares as the tiny baby that entered our lives in December 1993 went on to develop hideous anorexia nervosa 16 years later.

And I hoped and prayed that, for these young parents, enjoying a family get-together on New Year's Eve 2017, with 2018 just hours away, that their children would grow up happy and healthy, free of the many horrors that can come with adolescence - and as they get older.

My worry, back in 1993, was that I didn't have it in me to be a 'good mother', a task that seemed way, way beyond what I believed I was capable of doing.

But I hope that, in the years that followed and right up to the present day, I have proved to be a Good Mother. Or even a Great Mother.

But motherhood, as I came to know it during my son's teenage years and afterwards, was punishingly tough and there is no doubt that it has left me with scars as well as ageing and exhausting me.

As it has probably done to other parents reading this blog who are or have been battling with a son or daughter with an eating disorder.

Or worse.

For this first blog post of 2018, I wish all of my blog followers and readers an easier, more peaceful and generally better year than 2017 and / or preceding years.

And for those families from New Year's Eve, I wish for a happy, healthy future, free of all of the stuff that we have had to face as parents.
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The thing is, we parents are unique. We know our son or daughter better than anyone else in the universe. We have lived with them since the day they were born, and for the nine months beforehand. We have watched them develop and change at every stage of their young lives. So if things start to go wrong and the alarm bells begin to ring inside our heads, our unique sixth sense picks up on it and we begin to worry.


Okay, some of us may not immediately recognise the early signs of an eating disorder like anorexia. Back in summer 2009, my husband and I didn't. At that time we didn't know that boys get eating disorders, just like girls.

But even so, as the weeks went on, we knew there was something seriously wrong with our son. As the weight loss and associated behaviours became worse, we began to Google the symptoms.

'Anorexia' and / or 'eating disorder' came up every time.

The point is that, as parents, by the time we take our son or daughter to the GP, we may be pretty certain of what we are dealing with.

It may also become clear to us that the eating disorder has been germinating inside our child for some time.

This means that, by the time we take our child to see the GP, the eating disorder can be quite advanced.

Never forget that you can't tell if someone has an eating disorder just by looking at them. It's not as if our children don't develop anorexia until they are skeletal thin. The green shoots can sprout months or even years before they get to this stage.

Indeed it is possible to be seriously ill with anorexia and yet 'look relatively OK' to people who haven't known the child from birth.

As parents, no-one is better placed than us to recognise when something is seriously wrong with our child and, like any potentially deadly illness, we expect healthcare teams to take urgent action.

Just as they would if we were visiting the GP with a worrying lump or bleed.

SO WHY ARE THERE STILL GPs AND EATING DISORDER TREATMENT TEAMS THAT AREN'T TAKING THE CLASSIC SIGNS SERIOUSLY?

Why are families still being sent away and children still being left to get even more entrenched in an illness than can and does kill?

Why are our concerns, as parents who have known and nurtured our child from birth, still not being taken seriously?

Why are GPs and other professionals still listening to our children but not to us when it's a recognised fact that many young people believe they are perfectly OK when they are, in fact, very sick indeed? Why are we still seen as 'helicopter parents' getting 'over anxious' over nothing?

Why are there still parents who have to virtually chain themselves to railings in order to get something done?

Why are parents still having to fight the medical profession at the same time as fighting for their child's life?

It is time that every medical professional from the GP upwards was thoroughly schooled in eating disorders and their treatment. Evidence-based treatment such as FBT, not older treatment models that have been proven to be less effective for many adolescents with anorexia.

Because until this happens, there are still going to be far too many young people who will slip through the net and end up in hospital on the end of a tube.
Or worse.
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Last year I didn't do anything on Christmas Eve; I was in the throes of a C-PTSD attack. But this year Ben and I actually made it to the annual carol service which is held in the school chapel every Christmas Eve. We've attended it every year since 2005 (except for last year and one year when it was cancelled due to snow), even through the eating disorder years. This year was the first time, since the terrible Christmas of 2009 (when Ben was roller coasting into anorexia), that I haven't felt triggered in some way.


We arrived just as the congregation was singing 'Hark the Herald Angels Sing' and squeezed into a pew beneath the upstairs balcony. On our left was Mr J, one of the Deputy Heads (now retired) and Ben's former rugby coach from one of the years before his eating disorder emerged. On our right was Mr H who'd been head of rugby back then and who was one of the first people to voice their concerns that something was very wrong with Ben.

By that time (Autumn 2009) Ben had lost a heck of a lot of weight and, as the eating disorder's vice-like grip got stronger, his behaviour began to get out of control. Amongst a long list of other distressing and out-of-character things, Ben had been seen in the school gym, exercising like a robot. Mr H and one of the other PE staff were getting increasingly worried which was why they had a word with Shirley, the school nurse, and why she called me in for a chat which resulted in my husband calling the GP and insisted on a referral for eating disorder treatment.

But, this Christmas Eve... 2017... here I was singing Christmas carols next to Ben who looked absolutely amazing and was in a Good Mood. I could see the two girls in the pew in front of us taking sneaky looks and I felt was a tremendous sense of pride at having such a good-looking son, not to mention a son who'd excelled academically at university and - MOST IMPORTANT OF ALL - a son who had kicked the anorexia out of his life.

Then, after the service, both rugby coaches came straight over to shake Ben's hand and ask how he was getting along. Mr H commented on how "very well" Ben looked. The contrast between the Ben of Christmas 2009 and - worse, due to the loss of even more weight - Christmas 2010 and this Christmas Eve was evident for all to see.

Meanwhile, I stood there, bursting with even more pride as Mr J instructed me to "make sure you bring him along every Christmas" and I replied with: "These days it's him who brings me along!"
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"Is today proving that I'm fully recovered from the eating disorder?" said Ben yesterday (Christmas Day) evening. I gave him a massive hug in a response. Really and truly if you had been a fly on the wall yesterday, nothing in Ben's behaviour would have hinted at any history of anorexia. Ben enthusiastically devoured more than one helping of Christmas dinner followed by a couple of helpings of Christmas pudding, white sauce and Christmas ice cream - and continued to snack for the rest of the day.


And so I am not at all sure how this triggered my evening / nighttime panic attacks, but it may simply have been the fact that it was Christmas. Also we were celebrating Christmas at my sister's house which is where we spent Christmas Day in 2009, our first and worst Christmas with the eating disorder. So that may have acted as a trigger, too.
But the Good News is that Ben was absolutely fine - mood wise and food wise.
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I know from experience that Christmas / the Holidays can be a tricky time for parents of young people with eating disorders and so I very much hope that the eating disorder didn't interfere too much with your festivities. I know how distressing it can be to watch the world going on around you, preparing for Christmas just like any other year, while, inside the house, the eating disorder is running riot. I was "there" at Christmas 2009, 2010, 2011 and, to some extent, 2012.

Following those years I've battled with my own demons at Christmas thanks to C-PTSD (Complex / Chronic Post Traumatic Stress Disorder). The worst C-PTSD Christmas attack was last year when I couldn't do anything. No cards, no carols, no Christmas Eve carol service and - if I hadn't made myself get out of bed and "just get on with it" - no Christmas Day. The 2016 C-PTSD attack took me by complete surprise and just goes to show how you can't always control what the body / brain needs to do.


So I was kind of surprised this Christmas Eve and Christmas Day to feel relatively OK. Not 100% OK but a million times better than last year. I listened to carols, I went to the Christmas Eve carol service and I survived Christmas Day.

Until the evening...

And, worse still, the night.

It was almost as if my brain needed to blow a fuse.

As if, unbeknown to me, it had been simmering away all day waiting to explode.

During the night I had a series of panic attacks - the sort that wake you up shouting or gasping. Some were so bad that I couldn't get back to sleep for some time afterwards. I felt truly traumatised.

As a result I am knackered today and ache all over. (And, no, I didn't overdo the festive vino on Christmas Day!!!)

So this morning I found myself Googling "delayed panic attacks", "delayed anxiety attacks", etc and discovered that this isn't unusual. It's as if the brain simply has to do its stuff at some point and so it does it at a time when the individual is most relaxed - at night. Or, even better, when they are asleep because in sleep there is no conscious or unconscious effort to suppress the anxiety.

Curious, that.

So if this has happened to you over the Christmas period, rest assured you are not alone.
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Late yesterday evening we finally managed to pin Ben down to give him his birthday presents! Ben was 24 yesterday and had spent the past 24+ hours partying with his friends, both old and new. After dropping off the final friend at their house, he popped into the supermarket and returned with a feast of party food which we ate together in front of the fire and TV after handing Ben his birthday presents.


And this time, Ben had actually enjoyed himself!

What a contrast to the solitary eating disorder years...

I have photos of past birthdays and Christmases... 2009, 2010, 2011, 2012... Ben opening his presents alone without any plans to do anything except spend the day with the family.

So the contrast over the past couple of days has been massive.

And very positive.
I wish you all a peaceful, happy and eating disorder free Christmas.
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Ben feels a deep, deep sadness at the way the anorexia stole so many years out of his life - and out of our lives, too. There's a real sense of mourning the "lost years": the years from 2009 onwards. He hates the way the eating disorder isolated him from his friends and all the fun things he could have done during those last three years at school. Although he still sees his old school friends on occasions (like tonight, for instance), it's nothing like it used to be, with Ben at the centre of things. He still feels that his friends treat him as "different" and he hates this.


In fact he hates the eating disorder with a vengeance.

He hates what it did to him.

He hates the way it destroyed so much of his life when things had been so promising.

He also hates the way society is so geared up to "the way you look", the body beautiful, the perfect physique and so on. Although society's obsession with body image doesn't cause eating disorders it can trigger weight loss as young people strive to be what they are not. But they aren't airbrushed perfect people. The world is full of beautifully "imperfect" bodies. Perfect bodies only happen in Photoshop.

Thankfully only a very small percentage of people who diet go on to develop an eating disorder because, it's believed, they are "predisposed" to developing the illness. In other words, it's down to the way their brains are "wired up".

And, as was demonstrated during World War II in the famous Minnesota Starvation Experiment, substantial weight loss and starvation can result in the brain beginning to behave strangely which is when the "textbook symptoms" of an eating disorder can emerge.

It was this social pressure to "look perfect" - the drive to get a six-pack and a beautiful body - that resulted in Ben, who had always been highly critical of himself, losing weight.

And then losing more.

Until he simply couldn't stop.

As I said to him yesterday, things might have been different if he had developed an eating disorder today, in 2017.

In our city, young people with eating disorders are (in theory) fast-tracked into The System much, much quicker. They also receive evidence-based Family Based Treatment (FBT). So if Ben had developed an eating disorder today (and we'd been aware of the symptoms), he might not have lost so many years to the anorexia.

But, as I also said to him, we can't change the past.

And, despite everything, there are Good Things that came out of the experience: Ben's fortitude and courage as he refused to let the eating disorder steal any more years from his life is a major example.

He fought and overcame an illness that can and does kill.

This mourning of the "lost years" is another reason why I don't believe that Ben is heading for an eating disorder relapse.
But, of course, I will always keep my eye on the ball "just in case"...
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I was just about to cancel Christmas due to the all-pervading sense of gloom in our household when Ben walked into the room and began to talk about what's been bothering him. Yes, he suffers from depression (we already know that and he's on a low dose of anti-depressants) and we also wonder whether he may have PTSD. After all, why wouldn't he suffer from it? He went through the prolonged trauma just like we did. However we've both decided to wait for an official diagnosis and then take it from there. He has agreed to do whatever is required to help him manage it, whether that's medication or therapy - or a combination of the two.


What was so sad, though, was that he feels responsible for the eating disorder. He feels that it was his fault that he didn't pick up on it and "snap out of it" during that summer of 2009 when the ugly green shoots began to emerge. He feels that he is to blame for all those "stolen years" from our family's lives and for "messing up" my head with PTSD and so on.

"You weren't to blame," I said, "You know eating disorders are a mental illness. It's the way your brain is 'wired up'. Genes are involved and you can't help your genes. It's like you can't help having blue eyes or freckles; they are part of your makeup. These things are PHYSICAL. The brain is PHYSICAL. Of course it is - it's part of the body.

"Or look at it this way... If you'd had a childhood illness, for example leukaemia, which meant having to put our lives on hold to support you through it, would you blame yourself for developing it? No, of course not, that would be crazy. The eating disorder was no different."

"But I should have been able to fix it when it started," he insisted.

"Ben, none of us knew what we were dealing with back then. We didn't know that boys get eating disorders. We didn't recognise the signs - signs which I now know are textbook symptoms of emerging anorexia, especially in boys. This is why I blog - to help other parents to recognise the signs. If you'd developed anorexia today, you'd have been diagnosed, referred and into treatment - evidence-based treatment - far, far faster. I really believe this. But none of us is to blame for this not happening back then."

This is just one of the topics that came up in our long (and hopefully fruitful) conversation yesterday and it's one of the reasons why I believe that the issues Ben is struggling with at the moment are not a relapse back into the eating disorder.

That, at least, is Good News and I feel a heck of a lot better for it.
And for our talk.
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Yesterday Ben self-referred himself to our local NHS mental health team - I'd told him that he needs to get properly and accurately diagnosed so that he can seek the right help, whether that's medication or therapy. Although, as I said before, there are still sticking points with Ben's reluctance to give up calorie counting and insistence on going for diet meals on the (rare) occasions we don't cook at home. But I do believe that he isn't going backwards as far as the eating disorder goes. I believe that the other mental health issues (Aspergers? PTSD? Bi-Polar?) are separate problems. Having said that, I am keeping my eye firmly on the ball.


These days Ben's weight is pretty OK and for the past four or five years he's been eating a very healthy balanced diet. It's just this calorie-counting sticking point and the fear of throwing caution to the wind as regards eating.

We had a chat about it all yesterday when he was in a better mood. I wanted to kick the wall when he began to quote his CAMHS psychiatrist, though. "She said this... she said that..." (about Weight Restoration) so, to him, her words are gospel...
Aaarrrgghh!!!
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