Tuesday, September 29, 2009

A Treadmill of Dread

Today when I woke up, for a split second, I had no conscious awareness of the events of the last month, it was like before I knew that Ed existed, and then, like a blow between the eyes, it all came crashing in on me again. I have spent most of today either crying or on the verge of crying. It feels like I am mourning the loss of my life before Ed. While I would hate to relive the last month over again, I wish I could go back to a time before I new about Ed. Losing your innocence is a tough thing, especially when you are out of practice because you have had a such a good life that you haven't had to face that particular challenge in a long while.

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

Being Home - The good, the bad and the ugly

Day three at home finds us still struggling to establish a routine that balances the work of 'getting rid of Ed' with normal everyday living. The 'Ed' work is still taking over but I recognize that it is early days and we are on a pretty steep learning curve.

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

Able to Breathe Again

Yesterday was a watershed day for us. For Emily because she finally gained the confidence she needed to try recovering at home, for all of us because she is being discharged on Wednesday and for me because I got to read a book called 'Eating with your Anorexic' that lifted the veil on my distorted and painful feelings of guilt. The book is written from the perspective of a mother of an anorexic daughter, and as I read her description of what she witnessed and experienced as her daughter was sucked under by the disease, I felt so much relief to learn that I wasn't alone in my ineptitude, that I literally took my first real breath in three weeks.

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:
8:00 breakfast
10:30 snack
1:00 lunch
3:30 snack
6:00 dinner
8:30 snack
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

Recovery at home is still scary

Meal support seems to be going well. Emily has eaten almost every meal and snack since I started eating with her. Last night Derek joined us and it went pretty well. I thought she was doing great but today she started talking about how every bite is getting harder for her and that she is so afraid that she won't eat at home and will end up back in the hospital. I think the fact that she is afraid she will fail at home is a good sign because it means that she doesn't want to fail. She is starting to really hate being in the hospital and doesn't want to end up back here which is also great because it might motivate her to keep moving toward health and away from Ed.

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

A Plan of Attack Emerges

The Team doctors have mapped out a plan for the next week and if all goes well Emily will come home late next week. The plan includes me doing meal support on my own with Derek joining in on the weekend. On Monday, Derek and I will get training on her nutrition requirements and start selecting Emily's meals for her from the hospital menus. This will help prepare us for meal planning at home. Emily doesn't have any say in what she eats but we can make choices for her based on what we know she likes and prep methods that she prefers. Emily gets to stay away from thinking about food choices to help keep her anxiety minimized. She told me that it was really challenging and tiring to be constantly trying to figure out exactly what she would allow herself to eat. She was consumed with thoughts about food all day, every day and now she finds it is a bit of a relief to not have to think about it. Even now when she gets her meal tray she looks at everything and does a mental calculation of calories and fats and leaves the food items with the high numbers to last.

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

One meal at a time

I had my first meal with Emily today in God knows how long. The funny thing is, I didn't even know that we weren't eating together for most of the last year, or at least not approaching eating together from the same point of view. The experience was a little stressful for me, but Emily said it was way better than she thought it would be and asked me to have snack and dinner with her too.

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

Distraction is the key

It was so good to see Emily have a better day today. We met with Tara, one of the team members, and talked about Emily's reluctance to come home. She is afraid that she will create conflict and that we will be fighting a lot. She said she really needs a distracting conversation which allows her to eat mechanically. She agreed to let me join the nurse for breakfast tomorrow morning to start my meal support training by observing her while I eat my breakfast. Emily doesn't want people staring at her while she eats which is why she wants me to be eating too.

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

Update - Monday, Sept. 14

Well it's been an interesting day on the road to recovery. Emily's anxiety over her meals is increasing steadily, her weight continues to drop, and the mix up with her breakfast meal this morning (it had a slice of ham on it) set off a series of melt downs for her. After she very reluctantanly agreed to try some non-vegetarian meals, she was angry and upset because she feels like her life was much better before we found out about Ed. Now she is stuck in bed, being forced to eat - hospital food, being forced to stop being vegetarian, and not able to do any of the things she loves. She is too ill to understand that Ed caused these things to happen, she just feels like us finding out about Ed caused these things.

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.