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

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14 thoughts on “Teetering On The Edge

  1. I thank you for posting this because, aside from the courage I know it took to post this, I appreciate the explanation of what this experience is like for you. I get it — not in relating to food the same way you do, although I have troubles in that area — in trying to control certain smaller aspects of my life when everything else is — or at least appears to be — out of control

    It seems that we as human beings must somehow have at least a tenuous grasp of a piece of our lives or maybe we will indeed go completely insane. I can always tell when I feel things are out of my control when I use various OCD coping techniques. Those I consider to be “average, everyday people” would think I was quite strange were they to see me doing certain tasks. Yet to me they are like a silent alarm system that somehow, some way, and somewhere along the way I set up to enable myself to deal with life while at the same time alerting myself that all is far from well.

    1. That makes a lot of sense to me Kathy. Thank you. I guess we all have our own ways of trying to grab back control. Maybe one day we’ll discover that control isn’t quite what we think it is. Lots of love.

  2. No advice from me :). I just find it disturbing that you know you are at the point where you need help, but aren’t able to get it from your health-care professional. Sadly, I don’t think that’s uncommon…

    1. Hi Janet. I find it sad too and I think you’re right that it is not uncommon. It scares me to think how many people ‘out there’ try to seek help and get a closed door in their face. For me, I’m just thankful that this time I know what it is I need. It just would have helped to have the support I asked for.

  3. I have no advice, I have understanding. I am bipolar and have Multiple Sclerosis. Each decision we make can set off any number of feelings or responses. All that can be done is being open in heart and mind. Best of luck.

  4. I felt similarly when I was given a “Traits” diagnosis. It’s pretty useless….I send my hugs! Some of my friends who experience anorexia and/or bulimia and identify as recovered still go through the very thought process you described.

    1. Thanks. Actually I suspect you’re right about the ‘Traits’. It’s a shame. They’re still relevant and important experiences for those of us who live with them.

  5. Cate, I loved what you said about “no advice please”. I’ve wanted to say that very thing many times, but didn’t allow myself. I’m so glad you did. 🙂 One thing I am learning on my journey is that most of the time, listening and validation are so much more valuable to people than advice.

    1. Hi Leslie, you are so right. You know I used to sit and take advice, thinking it was helping the person giving it because they were feeling helpful in the process. I had people who would say “if only there is something I could do or say…” and that just succeeded in making me feel guilty. Now I’m gradually learning that for my own sake (and sanity) it’s ok to protect myself and say what I don’t want. Sometimes it works, sometimes it doesn’t… Good luck with expressing what you need. It’s ok to do it! 🙂

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