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.

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