Friday, November 27, 2009
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
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.
Saturday, October 31, 2009
That prompted me to read about the next phase of treatment in my reference books which state that the goals of the next phase are:
- for us to maintain management of the eating disorder symptions until Emily shows evidence that she is able to eat well and maintain weight independently
- to return food and weight control to her
- to explore the relationship between the anorexia and normal adolescent development issues i.e. self esteem, body image, relationships, independence
As for the last goal of this phase, exploring the relationship between Ed and adolescent issues, I am very afraid of what that will entail. I am exhausted from phase one and don't know how to muster the energy to learn the new skills and behaviours that the Team is promoting for her healthy emotional development. The kinds of issues we have to deal with loom large in my tired mind. She needs to become less attached emotionally to us because right now she can't even sit in a movie theatre with someone between she and I. She needs to develop peer relationships that are more appealing to her than her relationship with us and she hasn't spent any time with friends in over a week. She needs to become accepting of her body image but she won't even go swimming yet because she doesn't want to be seen in a bathing suit. She also needs to get ready for dating and be comfortable with her sexuality and at this point in time that seems at least five years away to me. And our reward for her achieving all this adolescent development is that we get to deal with the kind of typical adolescent behaviour which we all know drives adults crazy.
Apparently one of the purposes 'Ed' is serving is to be a big wake up call to the fact that how you parent a child is vastly different from how you parent a teenager. My new term for this stage of my life is 'full frontal parenting', and if that has military undertones it is meant to because I feel like everything about my parenting style is underseige and that I am having to regroup and remuster every 10 minutes.
But old habits die hard and I gave into one yesterday and cooked a dutch apple pie to for us to eat and celebrate Emily's successful weight restoration. She gave me a quick flash of Ed's disapproval over the idea of celebrating but she tucked in and ate most of her normal sized piece of pie leaving behind a piece of crust that frankly I left behind too because it wasn't homemade.
And now it is time to figure out what to cook for supper, make my party appetizer, get my costume ready and finish putting up the Halloween decorations. And if anyone else asks me what I do all day I am going to lose it.
Thursday, October 22, 2009
The advantages of her reaching the goal weight are that she can switch from 2% to 1% milk, her hair has stopped falling out and she is able to take on more physical activity. She will be starting phys. ed. tomorrow, but is only able to let her heart rate reach 120 beats per minute for this week, and she plans to start walking to school. I was concerned that she would have to increase her caloric intake to compensate for her physical activity but that is not the case because once she is at the goal weight she would have needed to reduce her intake in order to not continue gaining. But by adding physical activity she can maintain the same food intake and maintain her weight. Well that's the theory at least. The down side of reaching her goal weight is an increase in acne because her body is producing estrogen again and I am sure many of us can relate to the horror of teenage pimples.
Healthy Emily is present so often now that when Ed shows up it is readily apparent. She becomes totally silent, motionless and gives off a very troubling aura of intensity. I can spot Ed at 50 paces these days, I don't even have to see her face to know when it is happening because the change is so dramatic. Sadly she turns into the girl she has been for the last year so we are very familiar with what Ed looks like only now we get to see it in contrast to healthy Emily.
Emily has managed her morning snack at school with no problem and we have progressed to me bringing lunch for her to eat in the car and she takes her dessert into the school to eat with her classmates. Her motivation is to have more time to socialize with her classmates. She is really enjoying school, and the people there a great deal. She started taking German and Mandarin and I am in awe of her ease with speaking German. Her teacher asked her if she had taken it before because she sounds so natural. She is also playing the piano again and she has been jamming at school with a couple of other students, both of whom are outstanding musicians. There is a school fundraising event this weekend, a bake sale on Spring Garden Rd. in front of the Gardens, on Saturday between 10-2. She is looking forward to participating and even hopes to be able to make some marble squares to sell. So if you are in the area on Saturday bring your cash and get some goodies.
Today, she set the goal of taking her school blazer off during class. She is the only student who wears her blazer so she is starting to feel like she is standing out. When I met her at lunch she said she did it. It was harder than she expected it to be at first but it got easier after a while. Ironically, she noticed that a couple of kids left their blazers on today. She also commented that she has the most 'fitted' white shirt which made her feel a little awkward. In fact the white shirt, which is one of her H&M purchases from the weekend, is very flattering, so although no one said anything about her not wearing her blazer I am sure that the boys in her school noticed.
Emily thinks she might try lunch on her own at school tomorrow. Derek and I are both apprehensive about that but we have to let her decide if and when healthy Emily is ready. And we will have a contingency plan to compensate for any uneaten food. She is planning another weekend of socializing with friends just like a real teenager - phew that's a relief.
Her session with the Team yesterday gave her some tactics to use to reduce her Ed thoughts at meals. She is going to tell herself that 'yes this meal is hard, but it will be over soon and then I don't have to think about eating again for another three hours'. She is also going to try to go to school all day instead of just mornings, so today is the second afternoon she has stayed this week. She has been avoiding Thursday's drama class and can't quite articulate why, so it will be interesting to hear what she discovers about herself today.
She told me last night that she feels like she is not in the same league as the rest of the students in her class because they all seem to be very smart and accomplished at one thing or another. She said she is the least motivated student in the school. I missed the opportunity to ask her how that made her feel but today when she told me she signed up for an extra course, grade 11 biology, I realized that she might be feeling the need to work harder to feel like she belongs and deserves to be there. I plan to explore that with her tonight and give her the chance to label and voice her feelings rather than suppress them. I have been reading up on how all eating disorder patients suppress their feelings through starvation because the process of restricting food intake is a very time consuming distraction from all other thought processes and activities and one of the physiological affects of starvation is that it numbs the mind. Emily can't really remember much about the weeks before she went into the hospital because she was so starved that it is all a blur to her, but she does remember that it wasn't as hard to endure as the first month of treatment was. So now she has the opportunity to learn how to express her feelings in appropriate and productive ways so that they don't fester inside making her need to rely on Ed to help her suppress them.
The challenge of course is that Derek and I are both emotional suppressors so it means that we have to learn to do this ourselves so we can model emotional intelligence for her. Many of us think that suppressing our feelings is a sign of emotional maturity but in fact it is not because suppressed feelings not only cause sadness and a host of mental issues like passive aggressive behaviors and depression, they also cause physical illness. The alternative is to use our feelings to guide us through our lives by using them to understand what makes us feel good or scared or joyful or anxious. Today as I listened to the news about the Canadian dollar reaching parity with the US dollar I started to enjoy a happy memory of a shopping trip south of the border, but then the reporter started talking about how bad the rising dollar is for Canadian truckers, my little moment of joy got squashed by feelings of fear for the economy and sadness for the truckers. But I chose to use that feeling to guide my actions and change the damned radio to a station that was playing soothing music that took me back to my nice memories. Bad news makes everyone feel bad and yet we willingly expose ourselves to it relentlessly in the name of what 'social awareness'. How can we justify trading off our mental, emotional and physical health for a cursory knowledge of current events? I know that from reflecting on my own life and from watching Emily suffer so much that we ignore our feelings at great peril. But man oh man, it's gonna take a lot of work to change 50 years of conscious and unconscious habits. How ironic that the song, 'We've only just begun', by Karen Carpenter, who died of anorexia, is rattling around inside my head as I ponder this stage of treatment.
Well I gotta go finish cooking up my newest recipe, peanut chicken noodle something or other. Fingers crossed that she'll like it.
Monday, October 19, 2009
The weekend was full of normal person activities (NPA), including a birthday party on Friday night, which allowed Derek and I to go out to dinner by ourselves, a visit to the Farmer's Market with a friend, a Saturday night outing with more friends, a clothes shopping expedition on Sunday and the crowning achievement, doing morning snack at school with her peers (she had been joining me in the car in the parking lot for snack).
Each of these events posed significant challenges for Emily but she wanted to find a way to make them work for her. Each act of independence from Ed is a cause for celebration in my books. The strategy is to get her so engaged in her normal life that she will be more motivated to give Ed the boot. When she asked the Team about doing snack on her own, their response was, 'can you trust healthy Emily, to eat?' Which I thought was a very interesting way to put it and I will use that approach with our next challenges.
For the birthday party, which included a supper buffet, she chose to eat supper before going so that she wouldn't have to deal with making food choices there. She is allowed to eat whatever she likes beyond what we feed her, so the Team told her to eat party food if she felt like it, but to not put any pressure on herself. She wasn't ready to eat in front of her peers but she had a big snack when she got home because she was hungry. She commented that she liked being at the Farmer's Market because she was surrounded by so many people enjoying eating so many different kinds of food and they didn't even appear to be concerned about what they were eating. I am not sure if she believes she will ever get to that mind set. I know it is only since this whole thing came up that I have realized that I have to make a conscious effort to simply enjoy my food without thinking about whether or not I can afford those calories.
The shopping trip was interesting because she really loved the clothes at H&M but she had to work so hard not to let choosing sizes and looking at herself in a mirror bring out Ed. She said it was about a five or a six out of ten on the anxiety scale, the jeans were particularly hard. I guess bathing suit shopping is a little way down the recovery road. She managed to meet the challenge to the tune of a little over $200 so all in all very successful. Then we had a smoothie in the Food Court which was also tough on her, especially since there was a table of teenage girls nearby who were creeping me out with their intense stare in our direction. (I think they were mesmorized by Emily's gorgeous hair).
In spite of these wonderful improvements, she is still very attached to Ed. One of her therapeutic goals this past week was to find a way to stop focussing so much on her food at meal time. We work very hard to distract her with games and conversation but she sits and stares at her food, moves it around her plate, eats tiny bites, eats the easy i.e. low density, low calorie, foods first, complains of feeling too full to finish and sometimes she just sits there while tears well up in her eyes trying to find the strength to take another mouthful. Some foods seem harder than others. She really struggles with eating chicken or ground beef, which are the only two none vegetarian proteins she has managed to eat. I spent several hours scouring some websites for new recipes based on things I know she likes, but the vegetarian options require larger portions which she can never finish. But even with her struggles at the table she continues to gain weight. Last Thursday she was up to 106, which is really great considering how much more active she was. She is taking in enough calories and she is eating many meals much faster than she did initially. And her need to be distracted when she is finished a meal has lessened in some cases too.
This week's meeting with the team will be the first one where she will start doing some cognitive behavioral therapy on Ed. She has been doing a little bit at each session but this week she will spend a significant chunk of time alone with the psychologist and social worker and then Derek and I will join them to find out what her goals for the week are and to discuss any problem areas. I am still a little concerned with the affects of the Zoloft because although they are keeping the dose at the 75 mg level, to me she seems a little too happy, but then again I don't know who the real Emily is anymore, maybe without the depression and anxiety she is a really cheerful person.
Yesterday I felt a sense of mental relaxation that I haven't felt since all this started. It is amazing how comforting 'normal' can be, when you haven't had it for a while. It feels like the very worst is behind us, even Emily has said she feels that way too. I know there are far worse situations that a person can experience but I would not want to relive the last seven weeks and I wouldn't wish it on anyone else either. We are grateful for all of the support we have felt along the way from everyone who is out there wishing us well. Keep the jokes coming. I look forward to having a big celebration feast with all of you when Emily is ready to enjoy it too.
Wednesday, October 14, 2009
She has attended four half days of school and seems very comfortable getting back into the swing of things. Saturday we had company over for Rumoli and she joined in with a mid afternoon snack which marked the first time she has eaten in front of anyone, other than Derek and I and hospital staff, in five weeks. Sunday she went to a friend's house for the afternoon which was the first time she spent time with a peer since coming home from the hospital. That was followed by her participating in a Thanksgiving dinner with my family. She took an Ativan to help her through the event and while she didn't quite finish her meal, she did have an dinner roll before we sat down so her caloric intake balanced out quite nicely especially since she also had a small piece of pumpkin pie. She took a lot of wonderful photos of all of us, many of which will make good blackmail fodder. On Monday I took her and a friend to the Fall Fair and then we went to Derek's family Thanksgiving dinner. She relied on an Ativan again but she not only ate everything I asked her to eat, she also drank some real coke and ate at least two small pieces of apple pie for dessert. I would expect her to have gained more weight this week but she has been so much more physically active that she may not have increased all that much.
Her weight last week was 104 and the weight they want to see her at is 110, so six pounds to go, at 1-2 pounds a week now seems doable. After that she will be more mentally ready to start the therapeutic work on Ed and maybe start doing a small amount of exercise.
Yesterday I wondered around enjoying a small but not insignificant sense of relief. It was not a great big huge sigh of relief because I am too wary of Ed to think huge steps forward are likely and because I am too weary to feel much of anything. But more alarmingly, Emily has started to exhibit some new odd behaviours like jumping around, making weird, almost childish, noises with her mouth, being a little more aggressive in her reactions to Derek and I, constantly moving her feet when she is sitting down and flitting from one activity to another. This morning she complained of feeling jittery and shaky on the inside and having a headache. I think, based on my web research, that she is reacting to the antidepressant. I called the team to make sure she sees the shrink when we go in for our weekly session tomorrow. Her dosage was increased five nights ago so perhaps she doesn't need as high a dose as they expected. I hope they don't have to take her off this drug because her mood has been so great since Saturday. She is even going to a friend's birthday party on Friday night, something she hasn't done in almost a year.
I would hate to see her have to go through the torture of coming off one antidepressant and starting another because that takes weeks and the Ativan is not a good alternative. On the other had, from what I have read about adverse side effects of Zoloft, she could be headed from some really unpleasant reactions including an escalation of self harming thoughts and anxiety. We will have to wait to see what the shrink advises tomorrow, but for today we have happy Emily, at least between meals.
Gotta go finish making lunch, pizza and salad, and pick her up from school.
Wednesday, October 7, 2009
She has been unable to finish at least one meal a day, unlike last week when she finished everything. It appears that Ed is working very hard to keep control of things, maybe it is his last big fight, maybe she has to feel this miserable because she has been suppressing her pain for so long that it just needs to come out. Maybe this is a good thing, but it is a misery to witness and very scary to think that she may not get out from under the burden of this horrible illness.
Today we saw the Team and they are a bit mystified as to how best to motivate Emily because she has lost interest in everything. She hasn't picked up her knitting or crafts all week, she struggles to do even a bit of school work, and she hasn't seen any of her friends or family. She must be getting sick of looking at me and Derek! But they have decided, with our full endorsement, that Emily should go back to school tomorrow and Friday morning and see how it goes.
She is very anxious about school because she doesn't know what to tell people, she is afraid of the pressure of school work, she can't imagine what do to about snack and she can't bear the thought of wearing her school uniform skirt. Of course we can help her maneouver all of these things, but I think a big part of her reluctance has to do with not knowing who she is without Ed. She has been defining herself as the person who restricts and doesn't'eat and now she doesn't have that persona intact any more and she has said repeatedly that she doesn't know who she is without Ed.
I can't wait for her to get out of the house and have the chance to focus on something else and I am really looking forward to having 2 whole hours to myself from 8:15 to 10:15, which is when I have to circle back to the school to do snack with her.
Gotta go get supper on the table.
Sunday, October 4, 2009
The medications are meant to give her some help with getting through the refeeding because the eating disorder thrives when the brain is malnourished. It thrives because a malnourished brain produces less serotonin, a brain chemical which we all have, that, gives us self-confidence, a feeling of safety and security, causes us to feel sleepy, and gives us our appetites.
The antidepressant can't increase the serotonin but it can change the way the brain uses it which can over time cause the brain to produce more serotonin. Unfortunately in anorexics, their brains produce even less serotonin as they are gaining weight which continues until they are close to their ideal body weight which is when the brain chemistry normalizes again.
So until the brain's serotonin levels are normal, Emily will continue to have high anxiety and obsessive thinking over all Ed related issues which include, food, eating, weight gain, body image, clothes, relationships, self esteem, exercise, restricting and purging.
The energy Emily has to expend to deal with the anxiety and obessive thinking have taken their toll. She is emotionally and mentally exhausted and suffers from insomnia, which together are a recipe for the constant headaches she is experiencing. Under these conditions, anything beyond eating six times a days and activities that provide a distraction from the Ed thinking are all she can manage. But hopefully she can squeeze in a few hours of school this week and a guitar lesson. They will also provide some welcomed distraction which we hope will outweigh the angst she feels when she thinks about doing them.
Today at lunch she took the anti-anxiety pill for the first time. It really zoned her out, and it's always freaky to see your kid a little high. I will be interested to see what she thinks about the experience once she sobers up, which should be anytime now. This drug is addictive so she will only use it for the next two weeks until the antidepressant kicks in.
The antidepressant has some side effects including drowsiness which in her case is a good thing because she takes it at night and it should start helping her to sleep through the night very soon. It also causes some stomach and bowel upset but so far she hasn't complained very much about that. The most frightening possible, but rare, side effect is an increase in suicidal thoughts. She was given the drug with the condition that she will tell us if she starts to have kind of self harming thoughts and we have a 24 hour emergency response phone number to use if that happens or we can take her to emergency right away. The shrink, Dr. C. has never seen this happen in eating disorder patients so she is very confident that it won't happen with Emily, but we will have to be vigilant over the next few months.
The other interesting thing that happened this week was that we found out Emily has been lacking confidence in us using the Maudsley Approach to treat her disorder. She had been doing her own research on treatment options and she was afraid that we weren't using the best one for her, partly because she knows they aren't treating the illness yet, but also partly because Ed knows this approach is working, as evidenced by her weight gain, and he doesn't like it.
The Team spent some time talking about the need for her to refeed before she will have the mental and emotional energy to devote to the therapy which will focus on changing her thinking and behaviours. And we assured her that we felt the Maudsley was the best approach for our family but that if it didn't work we would try every other approach out there. But it wasn't until she found the Maudsley Parent website and devoured everything on it, that she became more confident in this approach. She really turned a corner on those fears on Thursday morning which in turn resulted in a really good day for her.
Unfortunately, she got sucked under by Ed thoughts yesterday when she was dressing because she spent too much time looking in the mirror which generates a host of distorted images and thinking. And today she was deeply disappointed over not being able to volunteer at the Run for The Cure, which we have done as a family for five years. Because she needs to shift her thinking from Ed as a friend to Ed as a foe, I took advantage of the opportunity to remind her that Ed was the reason for her disappointment.
On the upside, she has found enormous comfort from a couple of books she's been reading on eating disorders. And she discovered that laying her clothes on her bed can give her an idea of whether or not they match without having to look in the mirror. She's a smart girl. She'll get there.
On Wednesday, when we had our session with the Team, Emily was reluctant to express just how much pain she is experiencing to them. She and I had talked about it the night before and I encouraged her to write down her thoughts to help her bring them up at our session, but she doesn't trust the Team members enough to let her real feelings out.
The Team spent quite a bit of time talking about the need for Emily to stop bottling up her feelings. In fact, all three of us have work to do on allowing ourselves to feel and express our anger, frustration, sadness etc., etc., etc. We are a trio of emotional suppressors and accommodaters, we don't like having negative feelings and we certainly don't like letting them out of pandora's box. But as we were told, unreleased anger and sadness causes more problems than it avoids. I am grateful that Emily will have the chance to learn how to deal with her negative feelings as an adolescence so that she won't have to carry those behaviours into adulthood the way I have. We are currently experimenting with letting our true feelings out of the bag while we are playing Trouble and believe me when I say we are getting lots of practice time in, like six times a day because we play at every meal as part of our 'distraction' from Ed strategy. I'd say that so far we have only scratched the surface of the issue of letting our feeling out, but I am planning to take it to the next level real soon. I can't wait to see the looks on their faces when they hear me yell out my frustration the next time one of them sends me home when I am only one space away from being safe.
Gotta go start lunch! Here comes those feelings of dread that she will find lunch too painful. Guess I haven't managed to let them go yet.
Tuesday, September 29, 2009
After only a week of having Emily home I am feeling mentally and emotionally fatigued from trying to be 'up' all the time regardless of her mood, which ironically is quite good day in spite of mine. I am going to chalk it up to this jeeshus head cold that has been making me miserable and hope that very soon I can be more comfortable with our new life and less stressed by the constant fear that I am doing things wrong.
I have never liked being around sick people because I feel their pain as though it is my own, they call it mirroring and apparently some people are born with more mirroring neurons that others. I'm pretty sure that I got too many for my own good. For me, if you stub your toe, I can not only actually feel the pain in my toe and but I can also imagine how you are feeling in response to the pain. So I have to work really hard to suppress those thoughts and detach myself from other people's experiences. With Emily it is magnified because of our close bond, so being with her 24/7 is draining for me. In addition to working hard not to let her pain and anxiety overwhelm me, I am constantly worried that I have prepared food she won't eat and constantly obsessing over finding the right foods for her 'magic plate'. 'Magic Plate' is what they call the process of presenting a patient with food to eat, without giving them any way to dwell on it before, during or after.
I am on a tread mill of constant dread. Dreading preparing food she won't like, dreading calling her to come to eat because I know she hates coming to eat. Dreading that she won't finish. Dreading that we won't be able to successfully distract her. Dreading that her emotional pain will overwhelm her at any moment. Dreading seeing that look in her eye that she gets when she is so exhausted from being anxious, that look that just beseeches me to make it all go away. Dreading not being able to give her relief from her pain.
I have to learn how to let the dread go. Not suppress it, as has been my lifetime habit of handling unpleasant feelings, but actually let it go. I'm not sure how to learn this skill but I am sure that once learned, it will come in handy, it will be one of those transferable skills that I am always preaching about to my students.
On the positive side of the balance sheet there is Derek. Ever cheerful in the morning regardless of how much sleep he gets, ever optimistic, ever ready to do whatever he can to make things better for either me or Emily. He has been an emotional rock for us through this. And he does laundry too. My respect and admiration for him has grown to new heights over the past month. Thank you to Robyn and Jeff for teaching him how to be such a wonderful husband and father.
Gotta run, there's supper to cook!
Saturday, September 26, 2009
The good part of being home for Derek and I is not having to be at the hospital. And while that is partly good for Emily, she really misses the feeling of being cocooned and sheltered from the outside world. She says she felt safer there and more distant from Ed. Home is full of painful memories and triggers that are overwhelming for her, even though home is also full of good things like privacy, better food, more freedom, less noise and no needles for blood taking.
Emily continues to amaze all of us, includng the Team, with her ability to identify and articulate her triggers. She has discovered that being anywhere near the kitchen makes her feel too connected to the food which she is better off viewing as her treatment. It's a little like being forced to sit in the room full of the torture implements before and after the torturing. But alas we all learned that the hard way because on her first day home she spent too much time in the kitchen, as per our normal family habits, making her anxiety level rise to an unbearable level by bedtime. And her bedroom is full of triggers as well. That is where she spent all of her timing obsessing over food, and counting and recounting calories and fats consumed that day, then planning and replanning calories and fats to be consumed the next day. She says the smell of her room, which was repainted in May, reminds her of going there to escape the smell of food cooking, so the lingering paint smell reminds of that Ed behaviour.
It is so heartbreaking for me to watch her in such emotional pain whenever something triggers that downward spiral into into that dark and twisty place of fear and anxiety. That for me is the ugliest part of this, watching her pain, but at least now it is on the outside and not on the inside festering in the form of suicide by starvation, like it was for the past year.
One of the bad parts of this process is the food planning and prep. At this stage it is relentless because I am still learning what items to serve, how much, figuring out the right combinations of food types, and then preparing it. I just finish one meal or snack and I am starting to think about the next one. But a lot of this will become second nature to me as I do it more often. It is also really tough to figure out how to time 'normal person activities' around the food. Yesterday I had an appoinment in the morning with my counsellor and then the three of us had an appointment with the Team in the afternoon, so everything had to be precisely timed to fit in the prep, eating, and travel time around the meetings. I am exhausted, and my head cold doesn't help. But the good news is that Emily has eaten everything she has been served and even asked for a couple of extra cookies and a bit of extra stirfry. And Derek and I are both finding that eating every couple of hours is making us feel much better physically and has all but eliminated the need to snack on junk food in the evenings.
It has been impossible to get our meals on a regular schedule so far, but once Emily returns to school we will have to be much more structured. Poor Dad dropped down the other evening and I had to tell him we weren't available, and we don't answer the phone when we are eating either so we keep missing calls and then I am too busy or tired to remember to call back. But we really appreciate the calls and check ins so I hope people won't be offended and stop reaching out to us.
Our meeting with the Team yesterday helped us understand what is working at home and what is not. Emily gained weight since coming home but she asked to stand backward on the scale because she didn't want to see what she weighed. We talked about some strategies for her to use when she is feeling the pull of Ed, like deep breathing and distraction. And we talked about her starting to do some school work because that will be a great distraction. I think they want her to try returning to school on a part-time basis next week so that she can have some normal activities to keep her busy.
Even though the session went well, last night at bedtime she was overcome by her fears and anxiety and said she wished she wasn't at home because Ed was constantly overwhelming her. Bedtime seems to be the worst time of the day for her. Her only relief when that happens is distraction but at 11:30 pm I don't have much left in me, with which to distract her. Today we will go to Chapters to find some books she can lose herself in. During the day she is distracting herself with crafts, she decorated a 'recovery' box with beautifully painted designs, she completed some Christmas crafts for gifts, she is knitting a recovery blanket and she is looking for more things to paint.
Now I have to go and start the snack prep and finish menu planning for the day. Kathie invited us to visit her and John at the lake but Emily isn't up for socializing yet, although she did tell me to feel free to go there by myself, which was sweet of her.
Tuesday, September 22, 2009
The author, Laura Collins, wrote, "In August before grade ten, this smart girl began to believe that 1,000 calories was too much food for one day. If she ate breakfast she felt unentitled to lunch. She referred to water as good and bread as bad.
If it were little green men she saw, instead of what she saw when she looked in the mirror, we would know what was delusion and what was not. Our family's anorexia awakening lacked that clarity.
I still wish it were little green men: I think they have a pill for that. And even if they don't, that sort of delusion isn't life threatening. Eccentricity you can live with. But this thing that was happening to her - that changed her so completely- this wasn't benign or a curious phase of dieting. This was horrifying and immediate and scary. The girl we knew was no longer there, no longer rational, although we tried to treat her as if she were. Her mind and body were fading as if her life's blood were being drained away. In fact it was."
The author goes on to describe how her doctors didn't recognize the illness for what it was even when she laid out the symptoms, the irrational behaviors and thoughts and said she believed her daughter was anorexic, her doctor said, upon examining her daughter, 'You should probably eat more, but you are still doing all right.'
It seems that part of the problem is that the actual definition of anorexia precludes many people from being diagnosed until they are so severely ill that recovery is almost impossible to achieve. Regardless of your delusional mental state, you have to be 15% below your ideal body weight and you have to have stopped menstruating for three consecutive months if you are female in order to be officially diagnosed as anorexic. So the day before you reach 15% below ideal body weight you aren't anorexic, in their eyes you are just suffering from disordered eating and it will probably work itself out. Or if you are like Emily and haven't started to menstruate you can never be technically diagnosed as anorexic even though you probably haven't started because of the starvation. So doctors, who don't see a lot of patients with eating disorders, are looking for the symptoms they have learned and are not inclined to react until those conditions are met.
The problem with this approach is that when your doctors put your mind at ease you suppress your internal warning bells and then because you don't know the language and culture of 'anorexia', you don't know that starvation causes an obsession with food that leads to reading cooking magazines, planning and serving meals to everyone else, that horrible, disgusting 'pro anorexic' websites are teaching your child the ways and means to support the disorder and that a desire for a bracelet of red beads is a way to show off your 'pro ano' life style, and a broken arm is an attempt to take your mind off the food obsession through physical discomfort. You don't know that being cold all the time, dizziness, indecisiveness and social withdrawal are all signs of starvation. And you don't know that your child's heart muscle is so weakened that a hot shower could stop it. You don't even know that you don't know.
But thankfully we know so much more than we did three weeks ago. We know what we need to do and how we need to do it and tomorrow we get to put it into practice and Emily is ready to let us put our new skills to the test at home. I know so much more than I ever wanted to know about this horrific and devastating disease. I know that I need to shed my own obsessions with weight and body image in order to be able to be a true role model for her. I know that we all need to stop wounding ourselves with negative self talk about food and guilt and carrying extra weight and not exercising enough or over exercising for the wrong reasons. I know that my issues with food did not cause this disease in her, but that this disease is going to help me to reshape myself. How ironic is that?
So here is what the next few months will look like for us:
All meals are carefully planned out to meet Emily's nutritional and preference needs.
Meal and snack times are fixed as much as possible:
For now she will not be involved in meal preparation or clean up and will only have to worry showing up and eating. This is to relieve her from her food obsessions.
We will take 30 minutes to eat together, during which time our job is to distract Emily from the overwhelming anxiety she experiences when eating. We will also gently point out her disordered eating behaviours which she does unconsciously like taking very small bites, eating easy foods first, not using utensils (it slows her down), eating from everything from left to right, pushing food around her plate.
Then we will spend 30 minutes together after each meal to keep up the distraction and prevent her from purging.
We will track and record everything she eats and doesn't eat.
We don't try to bribe, negotiate, threaten, use guilt or tricks of any kind to get her to eat.
We will spend 2-3 hours per week at the clinic working on the treatment by reflecting on what is working and problem solving what is not. Emily will be weighed and will receive personal therapy to help deal with the issues of body image, perfectionism, hyper self criticism and self esteem.
When she is ready she will start doing school work at home and then returning to school on a gradual basis.
She will gain control over her own eating one snack and meal at a time and as she and the team feel she is ready.
We will do little projects like dining out or having someone join us for a meal - she hates anyone seeing her eat- and letting her make some food and quantity choices.
She is allowed to help me bake cookies or muffins if she is able to partake in eating them.
We will not talk about anything remotely related to dieting, weight, calories, clothes too tight etc., etc....
I will continue with healthy amounts and types of physical activity
She will be advised on what kinds and amounts of physical activity she can perform. It's a slow transition from 22 hours of bed rest a day to being up and around for 16 hours a day. And she still isn't eating enough calories per day to support normal activities and gain weight.
Initially she isn't allowed to do any physical activity but she is permitted to go apple picking in 10 days - yippee!!!
In between meals, we are going to totally ignore Ed and carry on as though he doesn't exist.
We invite all of you to join us between meal times to help keep our lives ticking along in as normal a fashion as we ever did, not that I am claiming it was normal before!
Saturday, September 19, 2009
It is so frustrating that she is getting better physically but the eating disorder isn't being treated yet. She looks so much better and healthier inside and out, but Ed is still controlling her thoughts and you can see how much she struggles with every bite.
I wish with all my heart that I could wave a magic wand and make Ed go away because he is the scariest son of a bitch I have ever encountered and I have seen a few ugly monsters in my life time.
Thursday, September 17, 2009
Medically things have improved considerably, she doesn't need to be hooked up to the heart monitor during the day, she can have daily showers, she can walk for 30 minutes a day, blood work will be done once a week. Next week she will get a pass to go out of the hospital for a few hours, she wants to go to Superstore to get a sweater from the Joe Fresh line. She gained weight but I haven't heard how much and they have not indicated what her healthy body weight is. They don't like to discuss numbers with patients because they get too fixated on them.
It has been recommended that I take 4-6 weeks off work to implement the program at home. Dr. C, will provide a letter for work. We might need to remove some mirrors because it is common for patients to be a little obsessive and distorted in their physical appearance. Dr. C, told Emily to expect to not like her appearance but to try to trust the opinon of others because her thinking will be distorted.
Things I've learned to day:
She doesn't like being asked to try to eat a bit more once she makes decision that she is done, this makes want to resist eating even more.
She is still afraid of coming home and experiencing conflict with us over meals
Dr. C, says most patients end of with stronger relationships with their families after going through this treatment program
Our weekly sessions will take about 2 hours and will be at a regular day and time each week.
Apple picking is the goal
Physical activity will be restricted to normal movement required for daily actitivities until further notice and then introduced very slowly
School work comes after health, but return to school will be gradual and based on her comfort level.
She doesn't seem very interested or bothered about school work right now
Wednesday, September 16, 2009
She wasn't able to finish breakfast but she said that two weeks ago she would have been disappointed to have eaten that much in a whole day, now she was a little disappointed not to have been able to eat that much in one meal. That, in my opinion, was a very long way for her to have come in two weeks. And while I know, because the 'team', have told us that it will be two steps ahead, and one back, for now at least we are moving ahead.
I was shocked to realize how much my mental, emotional and physical mood was uplifted by hearing her say those things and by her having a good meal experience with me. I am more hopeful than ever.
Yesterday we had a funny, funny as in odd, conversation about her abhorrence of smoking, wherein I asked how she could allow 'Ed' to starve her to death, but she couldn't conceive of smoking because it was so unhealthy. She gave me a look that reminded me of kid in 'the exorcist' and replied that she didn't wake up one morning and decide to starve herself to death, but it was a gradual disintegration of rational thinking. It was a really awkward moment between us, and there was a medical student in the room witnessing the whole thing, but I can't help but wonder if it didn't strike a nerve. One thing is for sure, if looks could kill, I'd have been six feet under.
Today, I met with my counsellor for the first time and the hour was taken up with my 'telling the story' of how Emily ended up so sick and what the immediate future looks like for us. I hope that next week we can start working on my feelings of guilt and fear because I can afford to be spending energy on those feelings when we get Emily home. The refeeding process will take six hours per day, plus meal prep time, plus sessions with the team. I know I will need to take a leave of absence from work for some period of time because I wouldn't be able to do a good job at work and I can't afford not to put everything I can into getting rid of Ed and getting Emily back.
Intially i.e. the first month, Derek and I will spend every meal and snack with Emily and eventually we will probably trade off meals when Emily goes back to school and I go back to work. It reminds of the level care you give to a baby, kind of like a maternity leave. Life will be very different for us during this phase.
Tuesday, September 15, 2009
Emily told Tara that she sometimes fights Ed by saying that the 'ensure' has as many calories as the meal so she might as well take a few more bites of the meal. She talked about how much she wants to go apple picking and that fall is her favorite season. Tara suggested she use that desire to help her fight Ed during meal time but I don't think she is ready to concede that apple picking is better than restricting but we'll see.
We also talked about Emily identifying things about her home life that help or hinder her to fight Ed. I needed to check in with her to make sure that my own issues with exercise, food and body image don't undermine her confidence in me. She said that my long bike rides seem excessive to her but that going to bootcamp and running a couple of times a week don't bother her.
Other things that distracted Emily today: knitting, meeting two Ottawa Senator hockey players, hanging out in the teen lounge, more knitting (not sure if the knitting isn't a little bit 'ocd')
I am very tired today after staying here until 11:00 last night. I hate to leave so early in the evening but I need to be here for 8:00 am to share breakfast with her so it's early to bed tonight.
Monday, September 14, 2009
But on the plus side today she was granted two hours, one hour at a time, of wheelchair time, she got a bath and she knitted a cell phone case, thanks to Nana's knitting kit. And she has decided to spend 30 minutes a day on homework.
On the down side, Dr. C. told me today that Emily is indeed very sick and that Ed has a very strong hold on her. Emily doesn't feel like she has much hope of getting better, but all of us, including her team believe that she will make a full recovery. Dr. C, has decided that she will start Emily on anti-anxiety medication as soon as her heart rate is a little better i.e. Thursday. She believes that Emily's anxiety is contributing to Ed's hold on her because it is human nature to revert to the behaviours that give us comfort when we are afraid and in Emily's mind, Ed gives her comfort.
Dr. C. mentioned that she thought Emily would be medically stable by early next week and then hopefully she will be ready to come home to continue the refeeding there and the treatment on an outpatient basis. Emily, however, doesn't feel comfortable coming home yet because she is afraid Ed will be able to trick Derek and I, and that she won't eat for us the way she eats for the 'authority' figures here in the hospital. So we need to work on building her confidence in a home based program. Derek and I have been given some materials to help train us in meal support and we will get to observe the nurses in action and then practice with Emily here in the hospital and ultimately take over that role completely before she comes home. We met a new team member today, Judy, who described her role as getting between Emily and Ed and that will be our role too.
I am suffering from a severe case of information overload after my sessions with the team members today. I am too tired to go to choir tonight but I hope to make it next week. And I am going to see a counsellor this week to get some help dealing with my own 'stuff' that is emerging from all of this.