Monday, March 21, 2016

Life after Getting Rid of ED

I just reread my last post from 2011 and I wish I could say, life was as 'Ed Free' as I thought it was going to be back then, but alas it wasn't.

Anorexia was replaced with two years of purging disorder, which was also accompanied by depression, cutting, and substance abuse all in the effort to appease the anxiety which turned out to be under lying trigger for everything.

Emily has now been in recovery for three years.  I would like to say she's recovered but you just never know. I do know that all of the behaviours and rules are gone, long gone. She eats whatever she wants whenever she wants and I don't even think about Ed except that I still get a huge rush of delight when she asks for a grilled cheese sandwich, with camembert, apple and butter.

We discovered that once she stopped purging, the depression lifted, the cutting and substance abuse stopped but she didn't have anything to control her anxiety so it ratcheted up to a whole new level.  She tried using CBT but it didn't help.  Finally she agreed to try a therapist who uses intensive short-term dynamic psychotherapy (ISDTP) and eureka it worked.  It took two years for her to complete it, but her anxiety was dramatically reduced after only six sessions.

What she and I both learned is that anxiety isn't a feeling, rather it's a mental activity that we create for ourselves to avoid feeling a negative feeling.  Emily had to learn that anxiety was worse than letting herself feel her feelings.  The work she had to do to relearn how to identify and experience and work through feelings was enormous, but she did it with the help of her remarkable therapist.  Now every conversation we have now is like a breath of fresh air and I just want to drink in her incredible insights and self-awareness and clarity.

She was asked to write this article on her experiences with eating disorders for mental health awareness week at her university.  What she describes is tragically all too familiar to so many people but she is proof that recovery is possible.

To me life after Getting Rid of Ed can be summed up as the thrill of seeing your child become the person you always thought they were going to be before the monster took over.

Monday, September 26, 2011

Pumpkin Cheesecake - Take that Ed!

I am thrilled to be able to write that it has been a remarkable summer of health and recovery for all of us. It has been amazing to watch Emily slowly disentangle herself from the remaining Ed thoughts and behaviours. When I wrote in May, Emily was doing really well with eating and her weight but, she was still very obsessive about food. She spent a good chunk of everyday focussing on food related activities like looking up recipes, shopping for food, and cooking and eating 'healthy' food. This continued over the summer but started to wain about six weeks ago. Now she spends a normal amount of time getting breakfast and preparing lunches.

This morning she told me that she feels like she has started to rediscover her ability to eat intuitively. She said even a month ago if she was hungry she would think, 'will I have a granola bar that has 100 calories, or will I have 300 hundred calories of fruit and dip?'. Now she thinks 'do I feel like having a granola bar or fruit?'. She also told me that the only thing that triggers 'Ed' thoughts is feeling overly full. But the good news is that she recognizes them for Ed thoughts! It gave us the opportunity to talk about how replacing every thought and behaviour associated with Ed would take some time in the same way as it took time for them to build up. She also told me about a memory that just came back to her about the first time she noticed that she liked the feeling of being hungry better than the feeling of being full. That was in grade seven, two whole years before we even started to notice anything. If the disease took over two years to reach it's peak, and two years of rebounds and relapses, then we should expect that it will take two years to dissipate completely.

The things that I still see as being Ed related are her limited repertoire of restaurant meals that can tolerate and her continued outright aversion to a few things she used to love. But there was progress the other night with pizza, something that has terrified her for a long time, after having a small piece, and asking for more, she commented that she was surprised by how she had convinced herself that she hated something that tasted so good.

In the meantime life is blissfully normal. I spent the summer, distancing myself from the role of CEO of the family based treatment process. I can't even remember the last time I went grocery shopping. Today I cracked open a cookbook because I wanted to, not because I had to. But the sight of all of my frantic scribbles from last fall, momentarily sucked me down into the deep dark Ed abyss, reminding me that I have some work to do to shed my own post-traumatic stress. Once I got over my mental lurch I was delighted by the experience of reading the recipes and and seeing all of the possibilities rather than all of the things that Ed wouldn't approve of. I am really looking forward to preparing, sharing and enjoying Thanksgiving dinner this year. It has always been my favourite family meal and even when Ed was with us, it was still enjoyable, but I have a feeling that this year will be extra special for me. I think to mark the occasion I will substitute pumpkin cheesecake for pumpkin pie for the thrill of watching Emily eat cheesecake which for me has become the iconic nemesis of Ed.

So now I find myself, along with others, asking, if Ed will be gone for good. I always believed in the theory that if the brain is not deprived of nutrition for more than two consecutive years, then the disease does not get hard wired into it. I hope this will be the case for Emily and I would not be surprised it is was, but I also wouldn't be surprised if Ed resurfaced. I find myself looking at her behaviours through my Ed filter every couple of weeks. The frequency of doing that is a good measure of my recovery from the trauma. Two years ago I was doing it every waking moment, two months ago it was every week, now every other week. It is not upsetting to have to do it, not like finding my list in the cookbook was, rather I consider it to be my duty to be curious and vigilant until I know she is safe from Ed.

Now that I have so much more time and ease in my life, I am starting to get back to some of my favourite activities like singing in a choir and I just started a 300 hour yoga teacher training program. I will be blogging on the topic of my observations of teacher training as a way to deepen my learning experience. I think the healing power of yoga could benefit the families who are struggling with anorexia so maybe my blog will be helpful in an indirect way. I won't say this will be my last blog on Getting Rid of Ed, but it will be the last one as long as we remain in our current state of health and recovery. I will insert a link to my yoga blog on 'falling in love with myself' in case you have an interest. Namaste!

Tuesday, May 3, 2011

ED's going down!

I don't know if I am capable of conveying my current emotional state in writing without sounding trite and foolishly naive but here goes. My darling, daughter is back. She is better than back, she is a wonderful 17 year-old version of the sweet, charming, vivacious girl we had before the demon ED took over. And I am feeling lighter than air. The weight of the conscious and subconscious worry has been lifted. I feel like I've been released from a prison of dread. I wish every parent who is still in the throes of dealing with ED, could get a dose of this sensation for a day to help them replenish their energy.

It's been a long two years, of rebounds and relapses but now after six continous months of being at the right weight (in her case the 52nd percentile), adequate fat intake, cognitive remediation through playing SET on her ipod, a bout of binging and purging that left her feeling disenchanted with her disease as a friend, followed by a transformational trip to Poland to deliver wishes to terminally ill children, she is back.

I don't think for a minute we have gotten rid of Ed once for all, but I know that she is managing Ed, he's not managing her anymore. And I know that if Ed gets a hold again, we can get back to this place again. I know that every day she is happy, is a gift to be treasured. I know that two steps forward and one step back is still a step forward. I know that food is the medicine, eating is the therapy, and that evidence based knowledge can save children and their families.

I am blissfully grateful to every one of you helped along the way, with your gestures of love and support or your silent well wishes. I owe so much to the parents and the professionals who have been working as advocates for FBT and evidence based treatment. I hope to be able to find my own way to make a contribution to this community. If I can help you please let me know.

Monday, February 21, 2011

When Stomach Flu is a Good Thing

Last weekend Emily came down with a severe bout of stomach flu. It made us a little nervous, but things have been going so well that I didn't feel the need to react to her lack of eating for the first 24 hours. Instead I decided to ride it out and see what happened once she got past the symptoms. By Sunday night she was ravenous and although she choose her items carefully she had no problem eating them with the gusto of person who is hungry and relieved to be able to eat. I kept a close watch on her for the next few days because I was aware that any restriction for any reason can trigger the ED thoughts, voice and feelings in her.

A few days later, as we were driving to the hospital for her weigh in, she shared with me that she was feeling ready to move forward with recovery. When I asked her what had prompted the shift she said it was because having the flu reminded her of two years ago when she was too sick with mono, to eat and how she felt so relieved to have an excuse not to eat. But this time when she was too sick to eat she was disappointed and worried about it. And that made her realize that she is further along in the recovery process than she thought.

While I was overjoyed to hear that she was feeling ready to choose recovery, I wasn't all that surprised because for the last month she has been successfully taking full responsibility for her breakfasts and lunches. I have to confess that we kind of blindly stumbled into her taking control of her nutrition as a result of unexpected house renovations that resulted in Emily having to move in with relatives. At first we talked a lot about meal planning and did the food shopping together but then it just evolved into her taking over most of the planning, shopping and preparation of her breakfasts and lunches with only minimal supervision by her aunt. I feel that in the past we have gave Emily control of her food too early in the process.

I hope that her success with managing her meals without supervision has bolstered her confidence and made recovery seem a little more do-able. But I have been fooled by the ED so many times in the past that I know there is a possibility that her words, behaviours and even her weight could be yet another elaborate rouse on the part of this demon disease. But until I see evidence of slips and relapse I am going to enjoy this bubble of contentment.

Friday, January 7, 2011

Celebrating 8 weeks of Rebound

We have made it to week eight of refeeding without any signs of relapse, slips yes, but relapse no. I attribute this milestone to using the magic plate to deliver the following prescription:
1. adequate levels of fat i.e. 60-70 grams per day
2. nutrition intake at least every four hours
3. a variety of foods

Emily's weight is maintaining at exactly the 52nd percentile of the growth chart for girls, which is roughly the percentile she was at from birth to age 12. Her mood and energy level are largely very good. She is eating her meals with only occasional objections. She is juggling school, friends, water polo and fund raising for a trip to Poland with a normal amount of frustration and success. All in all, I would describe this as the best she has been in at least two years.

We are indebted to Harriet Brown's book, 'Brave Girl Eating' and the good people at the Maudsley Parents website who offer the 'ask an expert' program, for providing us with information and insights that were critical to getting us to this week eight milestone.

While things are good right now there is still work to be done. Emily has rejected the efforts of the Team to provide her with CBT so they have released her from treatment. She will be go in for bi-weekly weigh ins and we will be notified if her weight drops by two pounds. She has acknowledged that she is not prepared to let go of the eating disorder and make recovery her goal. But she is prepared to stay on track with eating to ensure she can achieve her goal of going to Poland in March. And she is not making any movement toward taking responsibility for her nutrition. It is as though she will eat as long as I am in complete control. She will snack on her own but she won't tackle suggesting or preparing a meal.

I have been pondering her inability to let go of the disease and her alexithymia which is the inability to express emotions with words, a term a learned from watching Dr. Thomas Silber in this UTunes video called Grand Rounds . And wondering how they are connected to each other and to the E.D. and what brain functions are involved in maintaining them. Every time I read or watch something on cognitive remediation therapy (CRT), it just rings so true with what I see in Emily. But so far her Team have not been able to offer any help in that area. I recently watched Kara Fitzpatrick's presentation on insights into the neurobiological basis of eating disorders and was once again struck by how those concepts help to explain Emily's inability to change her mind about the E.D. At Stanford they are conducting a study to determine if CRT prior to CBT helps the patient to develop the cognitive capacity to shift their thinking so that the CBT can be more readily adopted. I believe that CRT could help Emily to develop better set-shifting and central coherence functioning and then she would be more receptive to the CBT and indeed be better at dealing with problem solving in many areas of her life. But I can't figure out how to access CRT for Emily.

Thursday, November 25, 2010

When the Recovery Bubble Blew Up

I recently completed a Myers Briggs Personality Indicator tool, and for the fourth time, it confirmed that I have a preference for viewing the world through facts, data, logic, and objectivity as opposed to intuition and feelings. So perhaps that is why I keep failing to tune into my 'spidey sense' when it starts tingling.

The tingling is a tiny little voice that asks, is she upstairs purging? But it's answered by the 'show-me-the-facts' voice that says 'she can't be, I don't see any evidence of it'. Which is followed by the soothing seductive voice of Cleopatra, queen-of-denial, who chimes in with, 'it's your imagination, she's doing fine, she's just tired, or it's just teenage behavior'.

But eventually the spidey sense, triggers the researcher in me and I start looking for and finding the evidence I am dreading and then I realize that the recovery bubble is just an illusion that Ed is dangling right in front of my blind spot.

Thankfully, my intuition also drives me to research online for more resources and information. I order two new books, one for Emily, which she accepts but says 'thanks' in that fake, squeaky Ed voice, while her eyes briefly flicker with Ed's abject scorn and hatred for me. And a book for me, that I am not sure I can quite face up to reading because I feel like I am too raw emotionally to read about the suffering of another child and family. But I force myself to crack open, 'Brave Girl Eating' by Harriet Brown, because I want to get back to viewing my daughter as brave and courageous. I need to find a way to shift my mounting anger and frustration with her for appearing to not want to let go of Ed.

Over the next week, Brave Girl Eating, begins to transform my thinking, my knowledge, my attitudes, my beliefs, my patience, my resilience, my life. I'm not quite sure how or why it made such an impact, but I think it has something to do with triggering a watershed synthesis of all of the learning that I have acquired over the last 14 months of FBT. By that I mean, I have been steadily acquiring knowledge and skills and increasing my understanding of anorexia and FBT. And I have been applying my knowledge and analyzing my applications and their outcomes, but I haven't been able to step back and weave it all together into the right blueprint for my daughter and her specific pathology and our specific set of circumstances and family dynamic. Now, for the first time, I not only feel like I know more than Ed knows, I trust in what I know and I trust in how to apply it.

What I know now is that in spite of being weight restored, my daughter needs to eat every three hours and she needs eat foods containing fats, every three hours. If she doesn't she starts to slip in her thinking, her sleeping, her mood, and in her brain's ability to use the medication she is taking. The other thing I have learned is that every act of restriction, even the unconscious ones, trigger the eating disorder thoughts and feelings. These two facts translate into the realization that Emily is not ready for phase two of the Maudsley method - regaining control of her eating. And she wasn't ready last December, or in June or in September when we allowed her to take back control of some of her eating.

Sadly, I have come to realize that because we wanted to keep recovery moving forward, we undermined her recovery. Now she has lost hope that she will ever recover, she feels like she can only sustain her motivation to fight Ed for six weeks and then she falls into the abyss and it just isn't worth fighting for anymore. Who could blame her for feeling so hopeless. Six weeks ago she started the downward spiral, four weeks ago my spidey sense started tingling, two weeks ago she admitted that she didn't want recovery, she wanted Ed, but she agreed to let me feed her for one week, three meals, three snacks, 60 grams of fat. One week ago she still didn't want recovery, but wonder of wonders, she continued eating, her mood improved, her anxiety over eating seemed lessened, she was more engaged with her life. As far as I am concerned the nutrition and especially the fat is working. Yesterday she reluctantly agreed, at a Team meeting, to continue with treatment. Her words were not very encouraging and clearly part of her brain is still very stuck in the Ed world, but I am going to slather that part of her brain with peanut butter, cheese, ice cream and butter six times a day until her brain gets stuck on recovery.

Go read, 'Brave Girl Eating' if you are refeeding a child, or if you are supporting a friend or sibling who is refeeding a child. It will help in ways that will surprise you.

Sunday, October 3, 2010

The Recovery Bubble

Tomorrow will mark six weeks since Emily chose to stop restricting with the help of the magic plate and an increase in medication. This section of the road to recovery has been a pretty straight line. Emily's weight is healthy, she eats meals with relative ease, she is preparing her own lunches and some breakfasts. She even served herself at supper recently. She is back at school and thriving, back at water polo and loving it, back into socializing with a variety of friends and is even exhibiting episodes of typical snarky teenage behavior.

But, and you knew there would be a 'but', sometimes it feels like her mood is a little too good, which is probably the medication. And her list of comfortable, easy foods is quite limited while her list of 'bad' foods is very long. I have also seen a pattern of her becoming intensely fixated on ideas like going to Poland to help sick kids, and doing water polo five times a week, and getting her nose and lip pierced, and can't shift her thinking away from her version of the issue even when there is substantial objective evidence that she should.

I have found myself describing our current state like being in a bubble where everything is good, stable, moving in the right direction and faintly glowing with the promise of significant recovery. But like all bubbles it can be burst anytime by the smallest unexpected pin prick, or be blown off course by a predictable but unavoidable wind storm. So my challenge is to enjoy the bubble while it lasts, be prepared for the inevitable wind storm that life will bring up, and most importantly to be awake enough to notice when some unexpected pin prick causes her to shift from living in the bubble to pretending to be living in the bubble.

To meet these challenges I need to get the team going on the CBT that got deferred due to Emily's restricting and team member unavailability. I need to revisit the information on 'set shifting' and make more inquiries into the availability of cognitive remediation. I need to spend a little bit time of everyday reflecting on whether or not there is evidence of a pin prick to try to see when she is starting to slip rather than waiting until she has completely slipped off of recovery mountain.

So this is why blogging is such a powerful tool. Before I sat down to write today, I didn't even know that I needed a game plan let alone what it would entail. And if any one out there has any suggestions for ways to help a mom notice slips, and more importantly how a mom can help with slips, I would love to hear from you.