Friday, 30 October 2015

There are no bells

For most of my life I have had structure provided for me. As a student there were bells to tell us when class was over. In university, classes were scheduled for us. Then I went back to school as a teacher and for 15 years now I have been ruled by the bells, my life scheduled for me. At Parkwood I had a schedule too, every morning it was put up on my whiteboard by my nurses - I didn't always like it (I believe I complained about being "put upon") but, it was structure.

I have been home for a week now. With no structure. Meals happen, bowel and bladder routines happen, the kids get on and off the bus each day and we try to get to bed by 10pm. There have been appointments, but not every day. And all of my well intentioned lists of "this is what I will do at home" mostly remain not crossed off. Sometimes I used to feel this way on summer holidays - so much to do, but life getting in the way of getting it done.

I want to do therapy. Exercise, stretch, get outside (therapy for my mind). At Parkwood it was easy to do therapy, it was organized and planned for me, I just had to show up. It was their job to make sure it happened. Now it's my job. My job to make sure that my muscles get stretched everyday so they don't shorten. My job to work on my core muscles so they can learn to turn on automatically, not just when I say contract. It's my job to stimulate my nerves and think toes move - so that one day it might happen. It was easy to work hard at Parkwood, I had people rooting for me and looking for improvements every day. At home, it's different.

It's not that Theo is not rooting for me, because he is. It's just that we have not established our new routine. He is on his old one, kids lunches and activities, laundry, chickens, getting the farm ready for winter. And me? I am desperate for my legs to come back, but this week I didn't have any drive. Goodness me - remember those mornings from my previous life? I would get up, be at the pool for 6, swim crazy hard then go to work, coach then go home to my family. Or get up on a Sunday, in the dark, join some friends and run for hours, just for fun! What happened to that motivated Julie? I want to find her.

A lot of people are telling me I am doing great, I look good, and I need to give myself a break. It's okay to rest. In my head, somewhere, I know that is true. But I am afraid. I made great gains with my therapy at Parkwood and I don't want to lose them. I have to be my own coach now and am not sure I will listen to myself. I don't have the tools - the plinth, the lokomat, the bike, the standing frame. The doctor says all of my gains will come by 12 -18 months. Tick tock. How can I make my body work the way that it was? And, there are no bells.


  1. It's kind of like after a race. There's a depletion of body and spirit. what? We know we need the rest to heal and adjust but feeling motivated is such a rush.

    I so totally want a life coach--half cheerleader, half captain--to ring bells for me too.

    Ultimately, it's really up to us to be the life coach, isn't it? Thank goodness that while we may not a full-time life coach we, each of us, have dozens of cheerleaders giving us renewed energy to continue the race.

    Today, I'll be a cheerleader for you like I've seen YOU do many times during a race.

    "You can do it! Way to go. You're awesome!" Cuz you are. Ding. Ding!!

  2. Keep on keeping on, Julie! Sorry you don't still have the same benefits as at Parkwood.
    Of course you've probably already thought of this, but what about an electronic programmable trainer/assistant? Last night our son was telling us about "The Fabulous" app -
    When my wife had fuzzy days, I programmed our computer with a simple VBScript that would pop up at predetermined times and announce (in my lovingly prerecorded voice) "coffee time!" or "naptime!" or "lunchtime!” etc. I'm sure Theo would be delighted to be recorded as your reminder, if you like!

  3. I get it! I am a teacher, and it is remarkable how ruled by the bell our lives are. Personally, I am going through significant change. Professionally, am at a new school and while interesting it is new and stressful. Would you like to Skype with us? Maybe something familiar, yet new?

  4. note: with us was with my class of 24 grade 4/5 students

  5. You are doing great. You want this and you have the drive to do it. Would planning a regular blogging update on your "training" be useful? If you know you want to post on Tuesdays about your progress and you want us to help hold you accountable - it might give you a public motivator akin to a "scoreboard."

    Rooting for you!


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