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Words by Julie - Living Life With Paralysis

Love Story 6

Having been home for more than two weeks now I have heard Love Story on the piano (well the first part, anyway) a number of times that can’t be counted. I have also said “Go get ready for bed” a lot.  I have not been out and about very much, but I have heard “You look great! How are you?” many times. Most  people that I see say this to me, and I have not quite figured out how to respond. What can I say? I guess I look good, for someone who was hit by a car, had a broken nose, two broken teeth and her forehead and chin split open. But those were just the things that were visible. I know that everyone knows that there was more to my injuries than that. And I know “how are you” is just what we say to be polite. But I still don’t know what to say in return. I guess I’ll figure it out eventually.

So how am I? Tired. I have gone from eating three meals a day in my bed to being up to eat with my family for every meal. I have been trying to improve my endurance (just being up out of bed) but some days I take it too far. Pacing is a word that keeps getting thrown at me. My pace used to be all go, all the time. Now, my head is constantly going, but my body can’t keep up. I filled a whole page in my notebook today of things to do. I hung laundry on the line and rolled to the end of the driveway and back with my new FreeWheel attached to my chair. It helps lift my front casters off the ground, which makes wheeling easier, but it still is hard going on rough terrain.

The new hangout place in the house seems to be our bed. Now that we have moved all the books out of our room (thanks Dad) it feels more relaxed for me. Sometimes I work on the computer and do paperwork, or I rest and the kids read or draw. We have coloured together (thanks Steph), thumb-wrestled (Oliver’s fav) and listened to music. It’s nice to just hang out, but we also played catch outside today – fun for the kids and a bit of a core workout for me. I helped Ella make an apple crisp. Sounds simple, right? Seated at the table to peel, core and slice, but I have to press my arms against the table while I work just to keep my body upright. Tiring.

I started physiotherapy last week, it felt good to get back into working my body. Working with Bill and Mark will be great – using some of those new found muscles in different ways, feeling so much stronger than I did a month ago. I can now sit up on the edge of the PT bed holding myself up with my hands on my knees and pull in my lower back, without assistance. I also started doing some upper body exercises on my own today, just me, a stretchy band and the door handle. Now of course, my arms are super tired.

So, slowly, we are adjusting. The kids are helpful to me, and towards the running of the house. Lifting my legs up on to the bed, fetching things I can’t get or reach and even helping me get dressed. I can do most things on my own, but it takes twice the time and energy as it does to get help. We would never get anywhere, let alone on time, if I didn’t have help. Theo does everything for me (even more than the nurses did – sorry Lisa) and I am in awe of his compassion. I wonder how long it will be before he says do it yourself. Our OT said caregivers can run on adrenaline for as much as six months. I hope he kicks me in the butt before then or he will waste away to nothing. He says “you’re still Julie”, and that is what keeps him going. I guess that is our love story.

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