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.
Monday, May 24, 2010
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!
Friday, November 27, 2009
Our darling daughter is back!!
Yup it's true, Emily, the real 'honest to God' Emily, is back. I can't believe how far healthy Emily has pushed forward and how far she has pushed Ed back in the last two weeks. She is not only back but she is happier, more self accepting, wiser, and less prone to anxiety than she was three years ago, long before all of this started.
We now see a vivacious, courageous, compassionate, engaged, upbeat young woman show up at the breakfast table every morning. We see a person who has the tools to cope with the run of the mill frustrations and disappointments of teenage life.
We have only seen Ed at about three meals out of the last 20 and I think we kicked his butt in a kind but effective way. We don't see 'Ed' rules around eating, we don't see over reactions to stress, there is less clinginess, less dependence, less obsessive behaviours.
We are utterly amazed and utterly grateful.
I have to confess that it all happened just in the nick of time because I was starting to unravel. I had a major melt down two weeks ago which made me realize that I was approaching the zero stress tolerance level. I knew the time had come to distance myself from Ed or risk my mental health. I had several escape fantasies emerging in my tired brain, some of which were pretty scary, but I chose returning to work part-time, quitting caffeine, exercising more regularly, and getting away all by myself to a few days, (which is where I am right now). My self-care tactics, combined with Emily's progress have enabled me to get to a much happier and calmer place.
Self-care is tricky thing. It makes a lot of sense in theory but in reality it is impractical. Afterall when you are running around feeling like your hair is on fire finding some 'me' time isn't realistic. But even harder than that is acquiring the ability to a) figure out what you need, b) figure out that you are actually entitled to self care, and c) figure out how to ask for what you need. I think women have a really hard time with this, I know I do. But one of my many readings on dealing with 'Ed' talked about the responsibility that parents have to model 'self care' for our children. What a concept, not only am I entitled to self care, I have a duty to practice it and model it for my child. I can do that, because in case you don't know this about me, I like to follow the rules. So if you are like me and never learned about self care because your parent's didn't model it for you, it is not too late to jump on board this train to well being. Even if you don't have kids, you should consider it your duty to model self care for others that you love.
Who knew work would fall under the self-care category. One of my many, many lessons from the past few months is that when you lose the ability to work, for whatever reason, you appreciate it all the more when you get it back. Returning to work has been very therapeutic. I love being there because the people I work with are fantastic and extremely supportive, I get to enjoy walking to and from the office, I get to work on interesting and stimulating projects and tasks, and I know I already said it but - I get to spend time with the amazing people in the Coop Office. It is a completely 'Ed Free' zone.
Some other signs of my progress include the realization that I went for a run the other day for the first time because I wanted to, not because I wanted to escape. I don't feel the need or desire to talk about the ordeal to anyone; it is no longer 'top of mind' for me. When we saw the Team yesterday I didn't have a list of concerns to raise with them. When a team member asked me if I saw light at the end of the tunnel I realized that the little light I saw a month ago has spread to fill my entire range of vision and now 'Ed' is a little black dot in that vast sea of light.
Emily has turned a corner on her recovery and so have we. Some of the signs of recovery are quite subtle. She ate birthday cake at a party Saturday night. She helped me grocery shop without dread or anxiety, she even said she loved yogurt drinks and could drink them all day. She is dining out with Derek tonight and she agreed to let me invite Grampy down for supper a few days ago (ironically he turned me down though when he found out it was a vegetarian meal). Subtle or not, the signs are monumental.
And through all of this, Derek has been there providing a safety net, a shoulder to cry on, a joke, a game of Crazy Eights, a sounding board, a retail therapy buddy, a friend, a Dad - a husband extraordinaire. Grateful doesn't even begin to cover it.
We now see a vivacious, courageous, compassionate, engaged, upbeat young woman show up at the breakfast table every morning. We see a person who has the tools to cope with the run of the mill frustrations and disappointments of teenage life.
We have only seen Ed at about three meals out of the last 20 and I think we kicked his butt in a kind but effective way. We don't see 'Ed' rules around eating, we don't see over reactions to stress, there is less clinginess, less dependence, less obsessive behaviours.
We are utterly amazed and utterly grateful.
I have to confess that it all happened just in the nick of time because I was starting to unravel. I had a major melt down two weeks ago which made me realize that I was approaching the zero stress tolerance level. I knew the time had come to distance myself from Ed or risk my mental health. I had several escape fantasies emerging in my tired brain, some of which were pretty scary, but I chose returning to work part-time, quitting caffeine, exercising more regularly, and getting away all by myself to a few days, (which is where I am right now). My self-care tactics, combined with Emily's progress have enabled me to get to a much happier and calmer place.
Self-care is tricky thing. It makes a lot of sense in theory but in reality it is impractical. Afterall when you are running around feeling like your hair is on fire finding some 'me' time isn't realistic. But even harder than that is acquiring the ability to a) figure out what you need, b) figure out that you are actually entitled to self care, and c) figure out how to ask for what you need. I think women have a really hard time with this, I know I do. But one of my many readings on dealing with 'Ed' talked about the responsibility that parents have to model 'self care' for our children. What a concept, not only am I entitled to self care, I have a duty to practice it and model it for my child. I can do that, because in case you don't know this about me, I like to follow the rules. So if you are like me and never learned about self care because your parent's didn't model it for you, it is not too late to jump on board this train to well being. Even if you don't have kids, you should consider it your duty to model self care for others that you love.
Who knew work would fall under the self-care category. One of my many, many lessons from the past few months is that when you lose the ability to work, for whatever reason, you appreciate it all the more when you get it back. Returning to work has been very therapeutic. I love being there because the people I work with are fantastic and extremely supportive, I get to enjoy walking to and from the office, I get to work on interesting and stimulating projects and tasks, and I know I already said it but - I get to spend time with the amazing people in the Coop Office. It is a completely 'Ed Free' zone.
Some other signs of my progress include the realization that I went for a run the other day for the first time because I wanted to, not because I wanted to escape. I don't feel the need or desire to talk about the ordeal to anyone; it is no longer 'top of mind' for me. When we saw the Team yesterday I didn't have a list of concerns to raise with them. When a team member asked me if I saw light at the end of the tunnel I realized that the little light I saw a month ago has spread to fill my entire range of vision and now 'Ed' is a little black dot in that vast sea of light.
Emily has turned a corner on her recovery and so have we. Some of the signs of recovery are quite subtle. She ate birthday cake at a party Saturday night. She helped me grocery shop without dread or anxiety, she even said she loved yogurt drinks and could drink them all day. She is dining out with Derek tonight and she agreed to let me invite Grampy down for supper a few days ago (ironically he turned me down though when he found out it was a vegetarian meal). Subtle or not, the signs are monumental.
And through all of this, Derek has been there providing a safety net, a shoulder to cry on, a joke, a game of Crazy Eights, a sounding board, a retail therapy buddy, a friend, a Dad - a husband extraordinaire. Grateful doesn't even begin to cover it.
Sunday, November 8, 2009
Things you never want to hear your kid say
Reflecting on the past week made me realize that things have recently shifted in two important ways. For the first time in 10 weeks, I felt okay more than not, and our 'new life' started to feel normal instead of pained and awkward. I guess it is a testament to man's capacity to adapt to new environments and Emily's capacity to continue moving forward with her recovery.
Early in the week I read a great deal of a book called 'Skills Based Learning for Caring for a loved one with an Eating Disorder'. It scared the hell out of me because there seems to be so much to learn but it gave me an idea of how to approach Emily on a few issues. That night I tried to engage her in a conversation to get her to rate herself on a scale of 1-10 on how ready she is to look after her nutritional health. At first she rated herself a three, but then when I asked her to walk me through a day of feeding herself and she started listing what she would choose to eat for breakfast and lunch she realized she was actually higher than a three. I think she is maybe at a six.
Then I tried to get her to talk about her 'Ed' eating rules but she was really not into having that conversation. I tried to convey that eating rules are not healthy and are keeping Ed going and that talking about them helps to lessen their hold over her but I am sure in her head she was thinking yadda yadda yadda mom! I was heading out to go to my first choir rehearsal since August and she was reluctant to let me go. She is like an eight year old afraid to let her mom out of her sight. I offered to stay home so we could talk more about stuff and she laughed and said she could handle me going out if it meant not having to talk any more. I mentioned her clinginess and separation anxiety to the team and they reassured us that reverting to previous anxieties is a normal reaction but that the skills she is learning to deal with Ed can be used to deal with any form of anxiety. Phew, I hope that comes true.
We had a good meeting with the Team on Wednesday. Emily's weight was up again which is good because if she gets sick this winter and loses weight she will have some wiggle room. So I was surprised to find that Ed felt the need to join us for dinner that night. But I realized it was a chance to use my newly learned 'skills' to deal with him. I think he surfaced to test the waters because Emily asked for, and was granted, permission not to be monitored for purging after meals any more. As much as healthly Emily wants that privilege she knows that Ed is still a threat so she let him out of the box at dinner to see what would happen. I was really glad that I was able to step up to the plate and state that I believed that her not finishing dinner was Ed not healthy Emily. It is always hard to initiate a difficult conversation because my natural reaction is to avoid it and make excuses for her not finishing her meal. And this time I remembered to tie the need to get rid of Ed into her goal of taking up water polo in January so that it wasn't looking like a power struggle between Ed and me. Can you tell I was pleased with myself?
The following evening, Emily had four KVA (school) friends over for dinner and fifth to watch a movie. Two of them stayed for a sleep over which meant that Emily had to eat several times in front of people. She said it was really hard but since she has been eating in front of them at school for a while now and because she was rewarded with the fun of socializing she was able to do the hard work of eating so that she could enjoy the rest of the event. Her friends from KVA were delightful, a big change from Shambhala.
So all in all it was a really good week and I was starting to let down my guard a bit when out of the blue Emily started talking to me again. I was delighted to hear her say that she is really enjoying feeling well physically and that she is starting to use and to trust in the techniques and tools the team are teaching her for managing Ed. I wasn't ready for her to tell me that in the week before we found out about Ed, she had resigned herself to the fact that she dying and wouldn't live past the end of the year. I can't begin to describe how mind boggling it is to know that my highly intelligent, loving, warm, compassionate beautiful daughter was so ill that even with the full conscious knowledge that she was killing herself she was unable to ask for help. When I asked why, she said it was because she thought it was absolutely hopeless and she was too tired to even talk to me about it. So I will not be letting my guard down any time soon. You can't when you are dealing with a disease this deadly.
But the rest of my life starts today with the full knowledge and fear that it is more vicarious than I want to acknowledge. So now I am plotting my return to living. This week I start to plan out how to integrate working, singing, socializing and exercising into our new life style of meals, appointments, discussions and schleping Emily around. And being the 'planner' that I am, I will enjoy this project I will work on re-energizing myself with some rest and relaxation.
Gotta run and get lunch for my poor girl who is feeling yucky and sore from her H1N1 shot.
Early in the week I read a great deal of a book called 'Skills Based Learning for Caring for a loved one with an Eating Disorder'. It scared the hell out of me because there seems to be so much to learn but it gave me an idea of how to approach Emily on a few issues. That night I tried to engage her in a conversation to get her to rate herself on a scale of 1-10 on how ready she is to look after her nutritional health. At first she rated herself a three, but then when I asked her to walk me through a day of feeding herself and she started listing what she would choose to eat for breakfast and lunch she realized she was actually higher than a three. I think she is maybe at a six.
Then I tried to get her to talk about her 'Ed' eating rules but she was really not into having that conversation. I tried to convey that eating rules are not healthy and are keeping Ed going and that talking about them helps to lessen their hold over her but I am sure in her head she was thinking yadda yadda yadda mom! I was heading out to go to my first choir rehearsal since August and she was reluctant to let me go. She is like an eight year old afraid to let her mom out of her sight. I offered to stay home so we could talk more about stuff and she laughed and said she could handle me going out if it meant not having to talk any more. I mentioned her clinginess and separation anxiety to the team and they reassured us that reverting to previous anxieties is a normal reaction but that the skills she is learning to deal with Ed can be used to deal with any form of anxiety. Phew, I hope that comes true.
We had a good meeting with the Team on Wednesday. Emily's weight was up again which is good because if she gets sick this winter and loses weight she will have some wiggle room. So I was surprised to find that Ed felt the need to join us for dinner that night. But I realized it was a chance to use my newly learned 'skills' to deal with him. I think he surfaced to test the waters because Emily asked for, and was granted, permission not to be monitored for purging after meals any more. As much as healthly Emily wants that privilege she knows that Ed is still a threat so she let him out of the box at dinner to see what would happen. I was really glad that I was able to step up to the plate and state that I believed that her not finishing dinner was Ed not healthy Emily. It is always hard to initiate a difficult conversation because my natural reaction is to avoid it and make excuses for her not finishing her meal. And this time I remembered to tie the need to get rid of Ed into her goal of taking up water polo in January so that it wasn't looking like a power struggle between Ed and me. Can you tell I was pleased with myself?
The following evening, Emily had four KVA (school) friends over for dinner and fifth to watch a movie. Two of them stayed for a sleep over which meant that Emily had to eat several times in front of people. She said it was really hard but since she has been eating in front of them at school for a while now and because she was rewarded with the fun of socializing she was able to do the hard work of eating so that she could enjoy the rest of the event. Her friends from KVA were delightful, a big change from Shambhala.
So all in all it was a really good week and I was starting to let down my guard a bit when out of the blue Emily started talking to me again. I was delighted to hear her say that she is really enjoying feeling well physically and that she is starting to use and to trust in the techniques and tools the team are teaching her for managing Ed. I wasn't ready for her to tell me that in the week before we found out about Ed, she had resigned herself to the fact that she dying and wouldn't live past the end of the year. I can't begin to describe how mind boggling it is to know that my highly intelligent, loving, warm, compassionate beautiful daughter was so ill that even with the full conscious knowledge that she was killing herself she was unable to ask for help. When I asked why, she said it was because she thought it was absolutely hopeless and she was too tired to even talk to me about it. So I will not be letting my guard down any time soon. You can't when you are dealing with a disease this deadly.
But the rest of my life starts today with the full knowledge and fear that it is more vicarious than I want to acknowledge. So now I am plotting my return to living. This week I start to plan out how to integrate working, singing, socializing and exercising into our new life style of meals, appointments, discussions and schleping Emily around. And being the 'planner' that I am, I will enjoy this project I will work on re-energizing myself with some rest and relaxation.
Gotta run and get lunch for my poor girl who is feeling yucky and sore from her H1N1 shot.
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