Words by Julie - Living Life With Paralysis

Photographic evidence 2

Barely enough energy to dress.

This is how I have felt for more or less the past month. This picture was taken by Theo when we were on holiday with the kids in Ottawa toward the end of July. It was not an accessible hotel, at all, and therefore particularly exhausting. He took the photo saying he wanted “photographic evidence”. Apparently I need proof that I was tired. He was right. We were talking yesterday about how long I had been feeling like this – he pulled out his phone to remind me.

Today was relatively normal. In the past four weeks I have cancelled physio, swimming, visits with friends, been in bed by 8 (at the latest) been in bed all day… The list of complaints is long and the reasons are not all very clear. One thing that many will understand is that a blood pressure of 88/55 makes life physically pretty hard – without passing out. Yesterday I unloaded the top rack of the dishwasher and had to go back to bed.

Today I feel better. Better than awful is a step in the right direction and hopefully things carry on that way. I’ve got an appointment with my SCI specialist next week – I’m hoping for answers, I may get them, I may not.

Being low is a funny place to be. And I don’t mean humorous. It takes you down that rabbit hole of darkness that makes it hard to see the way through. It would seem to be logical to call friends and get them to cheer you up, but I don’t do that. I’m not entirely sure why that is. I don’t want to complain and explain.  That takes energy too. And there is nothing anyone can actually do when so much of it is physical. Laying in bed I had my laptop beside me and it took too much energy to even open it up and turn on Netflix. I know, scary.

A podcast I listened to recently Connecting the Resilient reminded me that I have been down there before, got out and moved on – meaning I would be able to this time as well. But feeling unwell and not knowing how to or when I would be better (on top of the exhausting life of SCI) was a dark reminder of why the suicide rate of people with an SCI is so much higher than the average population. Without support from Theo, family, friends and finances I don’t know how I would carry on either.

Today I managed to get myself to physio and do some meaningful work while I was there. Here’s a demo of what Marc and I have been working on – core. The future goal: a sit up.


  • Joan Rose Hukezalie, OCT says:

    You know this but perhaps others don’t. I do. Being chronically ill/ injured is in and of itself exhausting. Everything takes extra effort. I hear you, the black hole and trying to climb out is a spirit breaking struggle. Our lives are so regimented. Treatment plans consume us. I find the sun and it’s warmth on my body helps me. I sleep out in the sun mant days. Keep up the good fight Julie, I for one think you are incredible.

  • Cindy Fisher says:

    you are inspiring Julie.
    your writing is amazing.

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