During the months and years when my son's anorexia was at its worst and he was at his most volatile and violent, I was caring for him alone. My husband was working away. Okay, he was back at weekends which did take some of the strain off me, but for quite a long time he didn't 'get it' which raised a risk of him 'undoing' any good that had been done. Eating disorders have a habit of encouraging triangulation within a family and 'taking sides' with the person most likely to allow the illness to continue its destructive path. And so I found myself taking on the lion's share of the care - and, as a result, the flack that was hurled back at me from the eating disorder. There were all the other issues, too, like fighting to get him treatment and battling to find a common ground with his treatment team so we were all 'on the same page' and not colluding with the eating disorder or undoing any progress that the other may have achieved.
Don't get me wrong: I'm not implying that I was uber-courageous and noble by caring for / coping with my son while my husband was working away and that my experience of caring for a son or daughter with anorexia was far worse than any other family's experience of living with the many, many issues that an eating disorder can throw up (excuse the pun).
It wasn't. All our experiences are unique and hellish. But what ties us together is the love and fear that drives us, as parents, to get our child through this terrible thing.
What I'm trying to say is that during the period when my son's anorexia was at its worst, I developed a technique for switching off.
It was the only way I could cope for another day... another hour... minute...
I'd say to myself "I have no thoughts on this" which acted as a trigger to shut down my emotions. Sometimes I'd wander off to the bottom of the garden and examine the vegetables growing. Other times I'd just sit there. Or curl up on the bed.
This shutdown became part of everyday life and a very 'normal' reaction for my brain - and it's got stuck.
While my son carries on re-building his life and making up for all those lost years, I am still in shutdown mode.
Not now and again, however, but much of the time.
Underneath the shutdown is a sea of anxiety: a dual layer with numbness at the top and whirlpools of anxiety underneath.
Kind of like a thick sheet of ice covering an area of rip tides and strong currents.
My brain has got stuck there. And at night when I'm asleep it's as if it's all let off the hook. The anxiety is given a green light to play havoc, which is why I have such vivid nightmares and why the themes recur over and over again.
I've already mentioned the Pure Evil nightmares which involve really evil scenarios where I'm trying to escape from Pure Evil of some kind or another and where there is a genuine likelihood that it will get me in the end. This kind of nightmare pulverises my brain and makes me feel terrible for much of the following day, not to mention dog tired.
Then there are the anxiety themes, always involving desperately needing to do something or get somewhere but with countless obstacles in my way. Or exams I haven't revised for, play lines I haven't learned, that kind of thing.
And finally there are the 'loss / grief' nightmares which usually revolve around a final day at school school (reflecting the loss of Ben's promising school experience and my own as deputy chair of the school PTA) and other places / things that meant a lot to me but which I lost.
All of the above is surprisingly insidious. By this I mean that it has surprised me that, just as I thought things had reached a climax with the C-PTSD, it gets worse. I really hope it doesn't get worse than this: the numb hermit-like existence where my whole being has been anaesthetised, yet with this underlying torrent of anxiety.
Ah I wish it were as simple as being able to 'get a life', 'wake up and smell the coffee' or 'snap out of it'.
Because if it were that easy, I would have done it by now, believe me.
I hope other parents can identify with this.
Hi Bev
ReplyDeleteFirstly can I say what a brave post this is - it's hard to be vulnerable publicly but I think this is probably far more common than one would believe from the lack of acknowledgment. I've recently read your book, having followed your blogs from time to time since I too have been supporting my 18 year old son through his ongoing battle with ED. 5 years ago my youngest son struggled acutely after his brother's initial recovery and was diagnosed with chronic PTSD, which eventually improved. I have also experienced similar symptoms during periods of remission. I recommend a book called What doesn't Kill You by DR Stephen Joseph, amongst others. If you are interested in discussing this further I can email you my contact details.
You have my empathy.
Hi Toughbattler,Thank you for your comment and I hope your son is heading in the right direction and you can see the light at the end of the tunnel. So sorry to hear about your other son. It's not surprising when you think about it that anyone who is closely involved in this struggle and who also has emotional / family ties is going to be seriously affected. Thank you for the recommendation I will look that book up. It would be good to have your contact details if you would like to email me via my website. xxxx
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