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.
Thursday, November 25, 2010
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.
Namaste
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.
Namaste
Saturday, August 28, 2010
The Magic Plate is back on the table
After a tortuous weekend for Emily, on Monday she made the decision to stop restricting with our help. She said she really didn't have a choice because there is so much that she wants to do with her life and she can't do it if she isn't healthy. I was surprised by how quickly she was able to shift her thinking because on Sunday I was thinking she was going to end up back in the hospital because she couldn't eat anything and was an emotional and mental wreck.
On Sunday afternoon, after a dreadful morning, I was desperately trying to think of something to distract her from her pain and a friend offered to take us kayaking. She really wanted to go but I was concerned that she was too weak to manage it safely. We checked her heart rate, which seemed okay, but I said she had to eat something in order to go. She managed to get some fruit and yogurt down and I brought some snacks. She kayaked for about 20 minutes and came back to shore, she wouldn't admit it to me but I think she was exhausted. While I was out on the water she ate some more food, then asked to go swimming. Together we swam a couple of hundred meters, the water was 24c degrees, which is very warm for us, which made it tolerable for Emily. That night she ate several pieces of sushi. It took her a long time and she ate it while watching TV, but she ate the entire package, which was the most I had seen her eat all week.
Monday morning she surprised me by getting up early to say good bye to me because I was going back to work. She seemed 'lighter' mentally. Monday afternoon when we talked on the phone, I commented that she seemed a little less stressed and that's when she told me she had made her decision. when I got home, she presented me with a list of menu items that she finds easier to eat and a grocery list.
Tuesday we met with the team, she told them her decision and we discussed strategy for the next week which included upping her medication to help reduce her anxiety over eating, refeeding at 1200 calories a day and working up to 1800, no exercise or driving the car for a couple of weeks. Her vital signs are all good, her weight is still within a healthy range. We dusted off the magic plate and she re-started her slow climb up recovery mountain.
The refeeding has had it ups and downs this week but it has been more up than down. By Thursday she was ready to spend time with some friends, and she spent Friday studying for a math exam that is coming up on Tuesday. She says she is seeing a friend today, which I hope she does and tomorrow we have plans to attend a fundraiser for a wildlife animal sanctuary that she has a great interest in. I see my role, in addition to refeeding, requiring me to throw interesting and fun 'life' activities into her path to keep her connected to her motivation to be healthy. I even told her she can use the 'I need to be distracted' card to manipulate me into taking her just about anywhere she wants to go.
For the most part, I have been feeling very calm and strong and steady throughout this latest episode, which I know is because of my yoga practice, especially the meditation. I meditate on the qualities of a beautiful tree in my yard every morning. It helps me to stay rooted, grounded, consistent, protective, accepting, nourished and open and flexible to whatever the wind blows through my life. That's not to say that I haven't had moments of sheer terror that the E.D. would destroy Emily, and moments of regret for not seeing it sooner, and moments of self-pity for having to do all the work related to refeeding. But they are just moments that I allow to come and then let go. I know I can make the choice to let them go or hang on to them. A year ago, when all this started for me, I didn't know how to let them go and they consumed me. It turns out that the E.D. has been a powerful catalyst for some extraordinary changes in our lives. I am not grateful for the E.D. but I am grateful for the positive changes.
On Sunday afternoon, after a dreadful morning, I was desperately trying to think of something to distract her from her pain and a friend offered to take us kayaking. She really wanted to go but I was concerned that she was too weak to manage it safely. We checked her heart rate, which seemed okay, but I said she had to eat something in order to go. She managed to get some fruit and yogurt down and I brought some snacks. She kayaked for about 20 minutes and came back to shore, she wouldn't admit it to me but I think she was exhausted. While I was out on the water she ate some more food, then asked to go swimming. Together we swam a couple of hundred meters, the water was 24c degrees, which is very warm for us, which made it tolerable for Emily. That night she ate several pieces of sushi. It took her a long time and she ate it while watching TV, but she ate the entire package, which was the most I had seen her eat all week.
Monday morning she surprised me by getting up early to say good bye to me because I was going back to work. She seemed 'lighter' mentally. Monday afternoon when we talked on the phone, I commented that she seemed a little less stressed and that's when she told me she had made her decision. when I got home, she presented me with a list of menu items that she finds easier to eat and a grocery list.
Tuesday we met with the team, she told them her decision and we discussed strategy for the next week which included upping her medication to help reduce her anxiety over eating, refeeding at 1200 calories a day and working up to 1800, no exercise or driving the car for a couple of weeks. Her vital signs are all good, her weight is still within a healthy range. We dusted off the magic plate and she re-started her slow climb up recovery mountain.
The refeeding has had it ups and downs this week but it has been more up than down. By Thursday she was ready to spend time with some friends, and she spent Friday studying for a math exam that is coming up on Tuesday. She says she is seeing a friend today, which I hope she does and tomorrow we have plans to attend a fundraiser for a wildlife animal sanctuary that she has a great interest in. I see my role, in addition to refeeding, requiring me to throw interesting and fun 'life' activities into her path to keep her connected to her motivation to be healthy. I even told her she can use the 'I need to be distracted' card to manipulate me into taking her just about anywhere she wants to go.
For the most part, I have been feeling very calm and strong and steady throughout this latest episode, which I know is because of my yoga practice, especially the meditation. I meditate on the qualities of a beautiful tree in my yard every morning. It helps me to stay rooted, grounded, consistent, protective, accepting, nourished and open and flexible to whatever the wind blows through my life. That's not to say that I haven't had moments of sheer terror that the E.D. would destroy Emily, and moments of regret for not seeing it sooner, and moments of self-pity for having to do all the work related to refeeding. But they are just moments that I allow to come and then let go. I know I can make the choice to let them go or hang on to them. A year ago, when all this started for me, I didn't know how to let them go and they consumed me. It turns out that the E.D. has been a powerful catalyst for some extraordinary changes in our lives. I am not grateful for the E.D. but I am grateful for the positive changes.
Saturday, August 21, 2010
If I am back to blogging, the E.D. is back
Well truth to be told, it was never really gone. And truth to be told, I never really felt like it was in spite of my darling Emily's very exceptional acting abilities. Upon reflection, I think there was maybe a five week episode, following the hospital stay, where healthy Emily was stronger than the E.D. Then we went to the cottage for five weeks and the E.D. got stronger and stronger but the restricting got harder and harder so binging and purging silently took up residence with us for most of our time away.
Once again, I found myself observing behaviours that seemed unnervingly familiar. And once again, I was chalking them up to adolescence in the face of Emily's exasperated "Really, I'm fine Mom" responses to my queries. Apparently 'really I'm fine' is code for 'the E.D. is alive and well'. But a few days after our return home, Emily bought two items at the grocery store that screamed 'Hi it's the E.D., remember me?' - rice crackers and cup of soup. And like a combination lock tumbling through the right sequence of numbers, all my little nagging thoughts clicked into place. My mind reoriented itself to look through the E.D. filter and reality took hold. I was standing in the kitchen, kind of verbalizing my stream of consciousness in real time, and I saw the look of sad agreement on Derek's face and knew he and I were on the same page.
We had a team meeting set up in a few days but I wanted to let Emily know that we were gravely concerned so that she wouldn't be blindsided at the meeting. I took the opportunity to mention a couple of my concerns to her, which she refuted at first. But I like to think that I saw a little bit of relief in her. Relief that the cat was out of the bag, or perhaps that now she didn't have to go it alone.
She said that she didn't want to talk about this to anyone so I was the relieved one at our meeting, when Dr. C, was able to draw her out of her fierce reluctance to disclose her thoughts and feelings. But what poured out of her was so very hard to hear. The anorexia voice has taken over her thinking 24/7, she is engaged in full blown restricting, although thankfully the purging has stopped.
Dr. C, has given her four options and four days to consider them. She can continue restricting, try to stop restricting on her own, try to stop with the help of the team and us, or go back in the hospital. She has been given an exercise to use to help her make her decision. She is wandering around the house in the E.D. fugue, unable to distract her mind from the 'voice' to get any relief, unable to eat, unable to stop thinking about eating, unable to choose health and life over the power of the E.D.
She told me last night that she still can't believe that this is happening to her. She is embarassed and ashamed and doesn't want to let everyone down and she hopes that people won't find out. We are in holding pattern until Tuesday when she has to make her decision then the team will instruct us on how to move forward. I think that if she chooses to let us help her that we can implement the 'magic plate' strategy and bump up her team interaction to help get her back to being strong enough to give the E.D. the heave ho, if not for good, than at least for a while. I wish I could stop her suffering and mental anguish, it is the curse of motherhood to not be able to kiss it and make it better.
Once again, I found myself observing behaviours that seemed unnervingly familiar. And once again, I was chalking them up to adolescence in the face of Emily's exasperated "Really, I'm fine Mom" responses to my queries. Apparently 'really I'm fine' is code for 'the E.D. is alive and well'. But a few days after our return home, Emily bought two items at the grocery store that screamed 'Hi it's the E.D., remember me?' - rice crackers and cup of soup. And like a combination lock tumbling through the right sequence of numbers, all my little nagging thoughts clicked into place. My mind reoriented itself to look through the E.D. filter and reality took hold. I was standing in the kitchen, kind of verbalizing my stream of consciousness in real time, and I saw the look of sad agreement on Derek's face and knew he and I were on the same page.
We had a team meeting set up in a few days but I wanted to let Emily know that we were gravely concerned so that she wouldn't be blindsided at the meeting. I took the opportunity to mention a couple of my concerns to her, which she refuted at first. But I like to think that I saw a little bit of relief in her. Relief that the cat was out of the bag, or perhaps that now she didn't have to go it alone.
She said that she didn't want to talk about this to anyone so I was the relieved one at our meeting, when Dr. C, was able to draw her out of her fierce reluctance to disclose her thoughts and feelings. But what poured out of her was so very hard to hear. The anorexia voice has taken over her thinking 24/7, she is engaged in full blown restricting, although thankfully the purging has stopped.
Dr. C, has given her four options and four days to consider them. She can continue restricting, try to stop restricting on her own, try to stop with the help of the team and us, or go back in the hospital. She has been given an exercise to use to help her make her decision. She is wandering around the house in the E.D. fugue, unable to distract her mind from the 'voice' to get any relief, unable to eat, unable to stop thinking about eating, unable to choose health and life over the power of the E.D.
She told me last night that she still can't believe that this is happening to her. She is embarassed and ashamed and doesn't want to let everyone down and she hopes that people won't find out. We are in holding pattern until Tuesday when she has to make her decision then the team will instruct us on how to move forward. I think that if she chooses to let us help her that we can implement the 'magic plate' strategy and bump up her team interaction to help get her back to being strong enough to give the E.D. the heave ho, if not for good, than at least for a while. I wish I could stop her suffering and mental anguish, it is the curse of motherhood to not be able to kiss it and make it better.
Monday, May 24, 2010
What's in a name like Ed?
The five weeks since we discovered Emily's relapse has been the proverbial roller coaster ride. Week one was a descent into the pain and anxiety that re-feeding brings on, coupled with regrouping with the ED Team. Week two saw some improvement in Emily, both physically and mentally as she became nourished again, but that was short lived due to the decision to take her off of the antidepressant. She had been taking a very low dose of Zoloft since October but her Team was beginning to suspect that she might have bipolar disorder, in which case that particular drug wouldn't be appropriate and might even have contributed to the relapse. She stopped taking the medication on Tuesday and by Saturday she couldn't eat, by Sunday she couldn't drink, by Monday she was in the hospital with a feeding tube.
While the process of diagnosing bipolar disorder was engaged she was started on Seroquel. For the next ten days, she got to experience, the angst of dealing with a feeding tube, re-feeding on hospital food with strangers, life on a psych ward, group therapy, triggering and being triggered by another patient with an ED, the joy of a good night's sleep, regular therapeutic sessions with her psychiatrist and increasing clarity over the high cost of AN. During this time we watched her transform as her, Seroquel induced, anxiety free personality emerged. It was utterly amazing to hear her say things like, 'I'm getting so behind on my school work, but I'm not going to worry about that right now'. But at the same time she was clearly torn by the prospect of leaving the safe, trigger free, cocoon of the ward, for her life that was waiting on the outside.
In the end, the desire to attend a school dance and an upcoming three day school trip, won her over and home she came. Re-feeding at home this time has been much easier, we are controlling her food choices and portions but she is doing lunch on her own at school. This week coming up, in preparation for her school trip, she will be making her own selections, dining out, and eating with others. This weekend, hubby and I are going away and Emily will be staying at home with a friend of mine who will help her with meals and keep her company.
We can see that she is working very hard at re-establishing her life but more importantly she is expressing a different mindset. She told us, in a Team meeting, that this is the first time she has felt like she really wants to get rid of the AN. Last fall when she came home from the hospital, she was planning to do what she was told to do until we stopped controlling her food or until she moved out and then she would revert back to the AN. Now she wants to get rid of the AN and get her life back. She wants to get to go to PEI this summer, learn how to drive, fall in love, go on the school trip. She went out by herself to meet up with friends three times last week, something she would never have done this time last month or last year.
She has also decided that she doesn't want us to refer to her eating disorder as 'Ed' anymore because it doesn't deserve a name, or a term of familiarity. So we are now referring to it as the AN, or the E.D. like we would if it were Alzheimer's Disease.
So the roller coaster ride continues. We had a great week but now with the stress of studying for exams, and perhaps spending a little too much time with friends, she is feeling more anxious and it appears that eating is more overwhelming. But she says she is trying to focus on the positives rather than the negatives and today feels better to her than yesterday did. It is clear to me that when her thinking is not fogged up by the anxiety she is able to shift her thinking to more positive and productive approaches.
It turns out that she doesn't have Bipolar Disorder but the Seroquel, seems to be working very well for her by reducing her anxiety and enabling her to sleep well. Although the idea of using a potent drug on a developing brain is scary, and this drug has the potential for significant side effects, the side effects of the AN are even scarier.
One final thought about the Seroquel side effects is that, without her anxiety to squash her ability communication negative emotions, Emily's adolescence with all of its raging glory is finally emerging. I say a big happy welcome to the sloppy, moody, can't decide what to wear teenager, who doesn't want to spend time with me any more unless I am taking her to get something she wants. What a sight her messy room is for my sore eyes.
While the process of diagnosing bipolar disorder was engaged she was started on Seroquel. For the next ten days, she got to experience, the angst of dealing with a feeding tube, re-feeding on hospital food with strangers, life on a psych ward, group therapy, triggering and being triggered by another patient with an ED, the joy of a good night's sleep, regular therapeutic sessions with her psychiatrist and increasing clarity over the high cost of AN. During this time we watched her transform as her, Seroquel induced, anxiety free personality emerged. It was utterly amazing to hear her say things like, 'I'm getting so behind on my school work, but I'm not going to worry about that right now'. But at the same time she was clearly torn by the prospect of leaving the safe, trigger free, cocoon of the ward, for her life that was waiting on the outside.
In the end, the desire to attend a school dance and an upcoming three day school trip, won her over and home she came. Re-feeding at home this time has been much easier, we are controlling her food choices and portions but she is doing lunch on her own at school. This week coming up, in preparation for her school trip, she will be making her own selections, dining out, and eating with others. This weekend, hubby and I are going away and Emily will be staying at home with a friend of mine who will help her with meals and keep her company.
We can see that she is working very hard at re-establishing her life but more importantly she is expressing a different mindset. She told us, in a Team meeting, that this is the first time she has felt like she really wants to get rid of the AN. Last fall when she came home from the hospital, she was planning to do what she was told to do until we stopped controlling her food or until she moved out and then she would revert back to the AN. Now she wants to get rid of the AN and get her life back. She wants to get to go to PEI this summer, learn how to drive, fall in love, go on the school trip. She went out by herself to meet up with friends three times last week, something she would never have done this time last month or last year.
She has also decided that she doesn't want us to refer to her eating disorder as 'Ed' anymore because it doesn't deserve a name, or a term of familiarity. So we are now referring to it as the AN, or the E.D. like we would if it were Alzheimer's Disease.
So the roller coaster ride continues. We had a great week but now with the stress of studying for exams, and perhaps spending a little too much time with friends, she is feeling more anxious and it appears that eating is more overwhelming. But she says she is trying to focus on the positives rather than the negatives and today feels better to her than yesterday did. It is clear to me that when her thinking is not fogged up by the anxiety she is able to shift her thinking to more positive and productive approaches.
It turns out that she doesn't have Bipolar Disorder but the Seroquel, seems to be working very well for her by reducing her anxiety and enabling her to sleep well. Although the idea of using a potent drug on a developing brain is scary, and this drug has the potential for significant side effects, the side effects of the AN are even scarier.
One final thought about the Seroquel side effects is that, without her anxiety to squash her ability communication negative emotions, Emily's adolescence with all of its raging glory is finally emerging. I say a big happy welcome to the sloppy, moody, can't decide what to wear teenager, who doesn't want to spend time with me any more unless I am taking her to get something she wants. What a sight her messy room is for my sore eyes.
Saturday, May 15, 2010
How could we have let Ed take over our daughter-again?
After several months of dealing with the ups and downs of life with a teenager recovering from and eating disorder, we discovered that Emily was in fact not recovering, she was in a full blown eating disordered state again. She was restricting, purging, and exercising excessively. She had dropped nine pounds, was exhausted and fainted at school, was withdrawn and was spending hours obsessively planning her strategies for getting to her new goal weight of 76 lbs.
After the initial shock wore off, then came the excruciatingly painful question, how could we have let this happen right under our noses - again. How could her E.D. Team have let this happen while she was in treatment? The questions were tinged with a hint of that destructive 'blame game' mentality but thankfully my yoga practice has enabled me to develop a much healthier attitude, and very quickly I knew the answers to those questions were critical to us understanding and learning from the experience so that we could move forward with 'getting rid of Ed'.
What we learned was that we were relying too heavily on her weigh-ins, as a gauge of her mental health. For example:
1. We rationalized the odd behaviours that were emerging as just typical teenage behaviours, because after all her weight was still okay.
2. We fell for the many 'illness' excuses that she invented for avoiding finishing meals and activities she was too tired to do. It couldn't have been malnutrition induced fatigue because her weight was okay.
3. We relaxed the 'every meal, as a family, at the table' practice, at her request, and why wouldn't we revert to old habits when her weight was okay.
4. We assumed the comments she was making about having a bad day or a tough time, or wondering what would happen if she got really sick again, were just random comments resulting from random bad days. How could there have been a building tidal wave of full blown Ed when her weight was okay?
5. We knew she wasn't really connecting with the psychologist that was doing her CBT, so when she finally dissolved into tears in a session we assumed maybe she was starting to break down some emotional barriers. And we weren't alarmed enough to press for a different approach to the therapy because she appeared to be eating and maintaining her weight.
The problem was that she didn't weigh what we thought she weighed. We think she was weighting herself down for her weigh ins. Ed had us all fooled again. But here are some of the signs I will look out for now: gum chewing, an increased interest in grocery shopping, a desire for foods like rice cakes, and other low calorie low fat snacks, chronic illness complaints, baggy clothes, requests to have supper while watching TV, school lunches made and packed when I'm not in the room, a desire to walk to school, lack of interest in spending time with friends. I knew all these signs from the first time through and I know my mind ignored them the second time through, but they won't get by me another time. Ed will have to become even craftier to outwit me a third time. Sadly though I suspect he can.
After the initial shock wore off, then came the excruciatingly painful question, how could we have let this happen right under our noses - again. How could her E.D. Team have let this happen while she was in treatment? The questions were tinged with a hint of that destructive 'blame game' mentality but thankfully my yoga practice has enabled me to develop a much healthier attitude, and very quickly I knew the answers to those questions were critical to us understanding and learning from the experience so that we could move forward with 'getting rid of Ed'.
What we learned was that we were relying too heavily on her weigh-ins, as a gauge of her mental health. For example:
1. We rationalized the odd behaviours that were emerging as just typical teenage behaviours, because after all her weight was still okay.
2. We fell for the many 'illness' excuses that she invented for avoiding finishing meals and activities she was too tired to do. It couldn't have been malnutrition induced fatigue because her weight was okay.
3. We relaxed the 'every meal, as a family, at the table' practice, at her request, and why wouldn't we revert to old habits when her weight was okay.
4. We assumed the comments she was making about having a bad day or a tough time, or wondering what would happen if she got really sick again, were just random comments resulting from random bad days. How could there have been a building tidal wave of full blown Ed when her weight was okay?
5. We knew she wasn't really connecting with the psychologist that was doing her CBT, so when she finally dissolved into tears in a session we assumed maybe she was starting to break down some emotional barriers. And we weren't alarmed enough to press for a different approach to the therapy because she appeared to be eating and maintaining her weight.
The problem was that she didn't weigh what we thought she weighed. We think she was weighting herself down for her weigh ins. Ed had us all fooled again. But here are some of the signs I will look out for now: gum chewing, an increased interest in grocery shopping, a desire for foods like rice cakes, and other low calorie low fat snacks, chronic illness complaints, baggy clothes, requests to have supper while watching TV, school lunches made and packed when I'm not in the room, a desire to walk to school, lack of interest in spending time with friends. I knew all these signs from the first time through and I know my mind ignored them the second time through, but they won't get by me another time. Ed will have to become even craftier to outwit me a third time. Sadly though I suspect he can.
Saturday, January 30, 2010
Another week another kilo
Wednesday, at our meeting with the Team, Emily showed another weight loss and although it came as no surprise to me, I think Derek and Emily were a little surprised. I could see the Team shift into a different mode and intensity with this week's weight loss and I think that triggered a sense of relief in me because after the meeting I felt better than I had in some time.
Their response was to first try to understand what's been going on, which turned into a very humourous conversation after I finished my little bout of blubbering. We were describing the various and sundry ups and downs of Emily's world, including her first heartache over a self-professed bisexual boy who, unbeknownst to Emily, turned out to be dating her friend from school. And who was in fact waiting downstairs in the lobby for Emily to finish her session so that he could come and have supper with us after spending the earlier part of the afternoon with her. Derek suggested that they record this particular issue on their 'WTF' column, which just cracked all of us up. He can be so funny in these meetings, when he is recounting his observations, which I think is partly his way of handling his discomfort over sharing the intimate details of our life with outsiders.
The next part of the discussion was to figure ways to get Emily's food intake back up and we settled on adding three milk servings back into the mix, getting back to tracking the food intake to ensure that the Food guide values are met, and making her finish her dinner regardless of how much snacking she has done after school.
The final part of the discussion was around consequences to her if she was unable to get her weight back on track. The approach here is to take away physical activities that she is not nutritionally sound enough to manage, as opposed to taking away non-physical privileges like her phone or computer. We don't want her to be punished for having the disease because it is not her fault that it has kicked in, but we do need to keep her safe. Unfortunately Emily isn't doing very much physical activity so we don't have a lot of leverage here other than making her come home for lunch or no allowing her to go the Red Tail nature camp. But they have given her a week to turn around the weight loss trend before we have to impose some restrictions.
So far the week is going much better. Healthy Emily re-emerged on Tuesday morning and fingers crossed, has kept appearing for most of the day ever since. We haven't seen the teenage she-devil version except when Derek can't help himself and has to tease her about it. She has given into the new reality around the food and we haven't see Ed nearly as much at the table for the last three days.
I think I started breathing again some time on Thursday, but didn't recognize it until Friday. I was in a very bad place mentally from Monday to Wednesday when I had a sense that my negativity was mounting into an all consuming kind of mental numbness. I don't ever remember feeling quite this way. It felt a little like the beginning of depression but it was more oppressive than depressive, like my mind was caught in a vacuum of emptiness because it couldn't handle the fear any more. I felt like I was on autopilot and then I noticed it subsiding after the meeting with the Team and by the time I finished my run the next morning, it was gone - thank God!!!!
Now that I am reflecting on how I felt, I wonder if my new yoga practice had something to do with how I reacted this week. And if it did, I am not sure if that was good or bad. Yoga has been extremely challenging, both physically and mentally. I can't say I enjoy it yet, but it is a total distraction from everything in your life and it forces me to live in the moment if only for 60 moments a day. At the end of one of my classes, during the rest period, I started crying and so I just laid there for 5 minutes trying to cry quietly all the while filling up my ears with my tears. The class as focused on twisting moves which I later found out are the considered to be the physical equivalent of an emotional wringing out, which kind of makes sense to me. I hope that I can get more out of my yoga practice than flexibility and I am trying to be patient with the process of growing into my practice and so far I feel comfortable with being patient, which is not really like me, so that's a good thing.
Time to go make breakfast for Emily. She has water polo today, so I will be spending a lot of the day feeding her, but at least I enjoy cooking warm, filling winter dishes.
Their response was to first try to understand what's been going on, which turned into a very humourous conversation after I finished my little bout of blubbering. We were describing the various and sundry ups and downs of Emily's world, including her first heartache over a self-professed bisexual boy who, unbeknownst to Emily, turned out to be dating her friend from school. And who was in fact waiting downstairs in the lobby for Emily to finish her session so that he could come and have supper with us after spending the earlier part of the afternoon with her. Derek suggested that they record this particular issue on their 'WTF' column, which just cracked all of us up. He can be so funny in these meetings, when he is recounting his observations, which I think is partly his way of handling his discomfort over sharing the intimate details of our life with outsiders.
The next part of the discussion was to figure ways to get Emily's food intake back up and we settled on adding three milk servings back into the mix, getting back to tracking the food intake to ensure that the Food guide values are met, and making her finish her dinner regardless of how much snacking she has done after school.
The final part of the discussion was around consequences to her if she was unable to get her weight back on track. The approach here is to take away physical activities that she is not nutritionally sound enough to manage, as opposed to taking away non-physical privileges like her phone or computer. We don't want her to be punished for having the disease because it is not her fault that it has kicked in, but we do need to keep her safe. Unfortunately Emily isn't doing very much physical activity so we don't have a lot of leverage here other than making her come home for lunch or no allowing her to go the Red Tail nature camp. But they have given her a week to turn around the weight loss trend before we have to impose some restrictions.
So far the week is going much better. Healthy Emily re-emerged on Tuesday morning and fingers crossed, has kept appearing for most of the day ever since. We haven't seen the teenage she-devil version except when Derek can't help himself and has to tease her about it. She has given into the new reality around the food and we haven't see Ed nearly as much at the table for the last three days.
I think I started breathing again some time on Thursday, but didn't recognize it until Friday. I was in a very bad place mentally from Monday to Wednesday when I had a sense that my negativity was mounting into an all consuming kind of mental numbness. I don't ever remember feeling quite this way. It felt a little like the beginning of depression but it was more oppressive than depressive, like my mind was caught in a vacuum of emptiness because it couldn't handle the fear any more. I felt like I was on autopilot and then I noticed it subsiding after the meeting with the Team and by the time I finished my run the next morning, it was gone - thank God!!!!
Now that I am reflecting on how I felt, I wonder if my new yoga practice had something to do with how I reacted this week. And if it did, I am not sure if that was good or bad. Yoga has been extremely challenging, both physically and mentally. I can't say I enjoy it yet, but it is a total distraction from everything in your life and it forces me to live in the moment if only for 60 moments a day. At the end of one of my classes, during the rest period, I started crying and so I just laid there for 5 minutes trying to cry quietly all the while filling up my ears with my tears. The class as focused on twisting moves which I later found out are the considered to be the physical equivalent of an emotional wringing out, which kind of makes sense to me. I hope that I can get more out of my yoga practice than flexibility and I am trying to be patient with the process of growing into my practice and so far I feel comfortable with being patient, which is not really like me, so that's a good thing.
Time to go make breakfast for Emily. She has water polo today, so I will be spending a lot of the day feeding her, but at least I enjoy cooking warm, filling winter dishes.
Saturday, January 23, 2010
Relapse #1
If I had to concoct a recipe for an eating disorder relapse (and why wouldn't you use a food analogy here) it would look like this:
- Five days of a sore throat
- 10 days of mounting exam anxiety
- A dollop of post Christmas blues
- A shopping trip for larger sized clothes
Mix that in with parents who don't recognize that Ed is lurking around, and then can't acknowledge that Ed has come out of the shadows and into the light. Fold in a heaping dose of misplaced optimism that tiptoeing around Ed will make him go away.
Let the dynamic stew for 10 days and voila you have a full blown relapse, complete with anorexic thoughts, behaviours, anxiety over eating and a two kilo weight loss.
But I wonder if you can call it a relapse when there hasn't been a full recovery. Maybe in this case it's just called a setback. But from where I sit emotionally right now, the word 'setback' seems far too innocuous for the level of fear and dread and distress that we are experiencing.
Every morning I wake up with a hope that today will be better and so far everyday it has been worse. And what is different this time is that Emily's attitude is more tinged with teenage rebellion so she is fighting back with nastier words and tones. For the first time I feel like Ed is going to damage our relationships, which I find ironic because that was Emily's fear back when she was in the hospital and it didn't come to pass until now. Maybe she was too sick to fight us then, but now she is just healthy enough bolster Ed with all of her pent up teenage rage.
Today I have promised Emily that I won't bring up Ed all day. Which is hard to do on the one hand because I don't want her to think that Ed will go unchallenged. But on the other hand it is difficult for me to point Ed out to her because I know I risk igniting a tidal wave of emotion that not only swamps her but us too. I think I will keep a journal of her Ed behaviours today and maybe try writing her a letter tonight with my reflections on what I saw and what I felt and thought about what I saw. Maybe if I present it to her in non-confrontational love letter format it will be less offensive to her.
I think I just had an epiphany, as I wrote my last paragraph I remembered a show I watched on teenage brains. Using functional MRI's researchers have learned that teenagers tend to interpret every emotional reaction as anger and every conversation with authority figures as condemning and conversely they respond with anger to pretty much everything. Phew am I ever glad I remembered this because now I am less concerned that my actions and words are responsible for upsetting her. Probably whatever I do or say will piss her off, because well duh, she's a teenager. Now I am feeling very grateful that I forced myself to journal this morning, this revelation will probably keep me sane for the next little while and I have to say a little island of sanity is a good thing because there is a whole bedroom of looney tunes right above me.
I don't know where this setback will take us over the next few weeks. I do know that our lives are on hold in terms of the get away weekend that Derek and I so desperately need, my work travel in February, meals, menus, recipes, etc. And that sucks especially after a bit of time and space where things seemed 'normal'.
Thankfully we still have the team to help guide us through this and they are available weekly again for now. And thankfully we know a lot more about Ed, and about how to fight him. We know more about ourselves and our capacity to tough it out. And Emily is healthier and wiser herself. I think she forgot how strong Ed can be and how sick he made her, so this setback will serve to remind all of us of that this retched disease is a formidable foe.
- Five days of a sore throat
- 10 days of mounting exam anxiety
- A dollop of post Christmas blues
- A shopping trip for larger sized clothes
Mix that in with parents who don't recognize that Ed is lurking around, and then can't acknowledge that Ed has come out of the shadows and into the light. Fold in a heaping dose of misplaced optimism that tiptoeing around Ed will make him go away.
Let the dynamic stew for 10 days and voila you have a full blown relapse, complete with anorexic thoughts, behaviours, anxiety over eating and a two kilo weight loss.
But I wonder if you can call it a relapse when there hasn't been a full recovery. Maybe in this case it's just called a setback. But from where I sit emotionally right now, the word 'setback' seems far too innocuous for the level of fear and dread and distress that we are experiencing.
Every morning I wake up with a hope that today will be better and so far everyday it has been worse. And what is different this time is that Emily's attitude is more tinged with teenage rebellion so she is fighting back with nastier words and tones. For the first time I feel like Ed is going to damage our relationships, which I find ironic because that was Emily's fear back when she was in the hospital and it didn't come to pass until now. Maybe she was too sick to fight us then, but now she is just healthy enough bolster Ed with all of her pent up teenage rage.
Today I have promised Emily that I won't bring up Ed all day. Which is hard to do on the one hand because I don't want her to think that Ed will go unchallenged. But on the other hand it is difficult for me to point Ed out to her because I know I risk igniting a tidal wave of emotion that not only swamps her but us too. I think I will keep a journal of her Ed behaviours today and maybe try writing her a letter tonight with my reflections on what I saw and what I felt and thought about what I saw. Maybe if I present it to her in non-confrontational love letter format it will be less offensive to her.
I think I just had an epiphany, as I wrote my last paragraph I remembered a show I watched on teenage brains. Using functional MRI's researchers have learned that teenagers tend to interpret every emotional reaction as anger and every conversation with authority figures as condemning and conversely they respond with anger to pretty much everything. Phew am I ever glad I remembered this because now I am less concerned that my actions and words are responsible for upsetting her. Probably whatever I do or say will piss her off, because well duh, she's a teenager. Now I am feeling very grateful that I forced myself to journal this morning, this revelation will probably keep me sane for the next little while and I have to say a little island of sanity is a good thing because there is a whole bedroom of looney tunes right above me.
I don't know where this setback will take us over the next few weeks. I do know that our lives are on hold in terms of the get away weekend that Derek and I so desperately need, my work travel in February, meals, menus, recipes, etc. And that sucks especially after a bit of time and space where things seemed 'normal'.
Thankfully we still have the team to help guide us through this and they are available weekly again for now. And thankfully we know a lot more about Ed, and about how to fight him. We know more about ourselves and our capacity to tough it out. And Emily is healthier and wiser herself. I think she forgot how strong Ed can be and how sick he made her, so this setback will serve to remind all of us of that this retched disease is a formidable foe.
Thursday, January 7, 2010
Chocolate Cake for Breakfast
If someone had told me four, three, two or even one month ago that we would be eating chocolate cake for breakfast to celebrate Derek's birthday I probably would have scoffed and said 'that'll be the day'. But today was the day.
Now it must be said that Emily was uncomfortable with the idea because she doesn't like change around eating habits, and she only had a small piece, but she ate it and enjoyed it. Who knows what kind of 'nutso' things Ed screamed in her head all day about it, but she did it and although she did it partly to please us, she also did it partly because she wanted to. Ah, the sweet taste of success lingers on my tongue still.
We had a very good Christmas holiday. We did some of our traditional things including many food related activities and we did some new things too. She just kind of went with the flow. I checked in with her, maybe too often, to make sure that she was comfortable with whatever was going on and she seemed to take it all in stride. She had her fair share of Christmas goodies and sometimes Ed kicked up, but not always.
She maintained her weight over the last three weeks in spite of having a sore throat for five days. Her menstrual cycle continues with lots of pimples, bloating, cramps and moodiness which are all great signs of her excellent health. Her energy level is good enough to allow her to do 8k runs. And she looks fantastic, if I do say so myself.
Mentally she tells me that Ed is only present about 50% of the time which she considers much better than 100%. I want him gone completely but he is not working on my timelines is he? Lately, I think she has been getting more uncomfortable with her current weight. I guess when you gain 25 pounds in four months you kind of can't help but notice it. But she realized that wearing clothes she bought about 12 pounds ago is a trigger for those thoughts so after her session with the Team yesterday she announced that she needed new jeans and new school pants. I wonder how many of us to quiet the nasty 'self improvement' committee in our heads with some clothes that fit properly and make us feel good to wear?
I have come to realize that one of my challenges for this stage of her recovery is to not let my guard drop and to make sure that we keep anchoring ourselves with breakfast and dinners at the table. Over the holidays things got a little out of whack for us and while a change was good in the short term I believe that we need to come together twice a day to break bread and commune for a lot of reasons. We have all but stopped playing cards or games at meal time because Emily doesn't need that level of distraction. Plus we added a lovely dog named Kismet to our clan recently and he provides more distraction for us.
One of the other challenges that we are facing right now is figuring out which of Emily's behaviours are Ed related versus puberty related. We think we are seeing a lot of normal teenage angst, defiance, snarky toned retorts, emotional highs and lows. But sometimes we aren't quite sure how to handle her because we are virtually brand new to the whole teenage parenting role. But at this early stage of the process I can usually laugh off her antics because normal teenage stuff is a treat compared to the psycho Ed stuff.
Things are good for us right now. Life is feeling more normal all the time. I don't wake up feeling panicky. I don't feel stressed about what to serve for meals. Emily has started making her school lunches and taking more independence around her other meals. We've seen a difference in her enthusiasm and appreciation for meals since she has taken on the responsibility of feeding and caring for Kismet. I know she is at a stage in her life when she needs to establish her independence and ironically Ed robbed her of that completely so we need to help her to regain it in ways that don't jeopardize her health or her growth. That will be a tough balance to strike but at least I know what I am up against and I am feeling rejuvenated enough to take a stab at it.
Happy New Year, Happy New Decade and Happy Birthday to my wonderful guy!
Now it must be said that Emily was uncomfortable with the idea because she doesn't like change around eating habits, and she only had a small piece, but she ate it and enjoyed it. Who knows what kind of 'nutso' things Ed screamed in her head all day about it, but she did it and although she did it partly to please us, she also did it partly because she wanted to. Ah, the sweet taste of success lingers on my tongue still.
We had a very good Christmas holiday. We did some of our traditional things including many food related activities and we did some new things too. She just kind of went with the flow. I checked in with her, maybe too often, to make sure that she was comfortable with whatever was going on and she seemed to take it all in stride. She had her fair share of Christmas goodies and sometimes Ed kicked up, but not always.
She maintained her weight over the last three weeks in spite of having a sore throat for five days. Her menstrual cycle continues with lots of pimples, bloating, cramps and moodiness which are all great signs of her excellent health. Her energy level is good enough to allow her to do 8k runs. And she looks fantastic, if I do say so myself.
Mentally she tells me that Ed is only present about 50% of the time which she considers much better than 100%. I want him gone completely but he is not working on my timelines is he? Lately, I think she has been getting more uncomfortable with her current weight. I guess when you gain 25 pounds in four months you kind of can't help but notice it. But she realized that wearing clothes she bought about 12 pounds ago is a trigger for those thoughts so after her session with the Team yesterday she announced that she needed new jeans and new school pants. I wonder how many of us to quiet the nasty 'self improvement' committee in our heads with some clothes that fit properly and make us feel good to wear?
I have come to realize that one of my challenges for this stage of her recovery is to not let my guard drop and to make sure that we keep anchoring ourselves with breakfast and dinners at the table. Over the holidays things got a little out of whack for us and while a change was good in the short term I believe that we need to come together twice a day to break bread and commune for a lot of reasons. We have all but stopped playing cards or games at meal time because Emily doesn't need that level of distraction. Plus we added a lovely dog named Kismet to our clan recently and he provides more distraction for us.
One of the other challenges that we are facing right now is figuring out which of Emily's behaviours are Ed related versus puberty related. We think we are seeing a lot of normal teenage angst, defiance, snarky toned retorts, emotional highs and lows. But sometimes we aren't quite sure how to handle her because we are virtually brand new to the whole teenage parenting role. But at this early stage of the process I can usually laugh off her antics because normal teenage stuff is a treat compared to the psycho Ed stuff.
Things are good for us right now. Life is feeling more normal all the time. I don't wake up feeling panicky. I don't feel stressed about what to serve for meals. Emily has started making her school lunches and taking more independence around her other meals. We've seen a difference in her enthusiasm and appreciation for meals since she has taken on the responsibility of feeding and caring for Kismet. I know she is at a stage in her life when she needs to establish her independence and ironically Ed robbed her of that completely so we need to help her to regain it in ways that don't jeopardize her health or her growth. That will be a tough balance to strike but at least I know what I am up against and I am feeling rejuvenated enough to take a stab at it.
Happy New Year, Happy New Decade and Happy Birthday to my wonderful guy!
Subscribe to:
Posts (Atom)