Words by Julie - Living Life With Paralysis

Rock star

Yesterday was a Parkwood day. Even after recovering Theo’s lost blackberry we made it in good time for me to be up on the ekso before 11:15. I always feel pressure on Thursday mornings because I have from 11 to 12 to “walk” and if I am late, that is my loss; time and money. So this week we did well. And for good reason, I wanted to achieve a personal best and beat my previous top count; 2000 was my goal. Last week I had been feeling super tired and just could not find my stride. This week – I nailed it.
This is the screen from the ekso. “Walk time” means time that I am actually moving, “up time” is the total time from standing to sitting and steps is, well, number of steps. Barry called me a rock star, high praise from that man! As it turns out, that was not only my pb, but also a Parkwood pb. Longest time up and longest time walking – and it put me at the top of the leader board. Of course it doesn’t really mean anything, other than to me, to know that I am getting stronger and able to tolerate being upright for that long. My blood pressure only starts to become an issue if I stop walking.
I walked right into lunch time, so not often will I be able to reach the 2000 mark. I guess I will have to find a new goal.
Parkwood days are always so informative for me (and those who bring me). I learn new things most days – yesterday my questions focused around house plans (and costs) and shower routines (everyone does it a little bit differently). What was new yesterday was that I helped someone else learn new things. A fellow FES biker and an SCI patient friends (just a few months “younger” than me) was telling me about his “lead” legs and some unusual bladder incontinence. Which just so happen to be the same symptoms I get when I have a UTI. So I shared my solution (UTI drops by Prefered Nutrition) and he was off to go buy some. He called me Doctor – how do you like that Erin! We all talked about how we have become such “experts” about the crazy things our bodies do, the things you never knew you needed to know. *Disclaimer – always check with your real doctor*
Something else that I have been paying attention to more recently is water. When you use an intermittent catheter to empty your bladder you are constantly thinking about when and where that next catheter will happen. At least I do. And not just any old bathroom will do. Some have toilet seats too low and no grab bars, others have doorways too narrow or bathrooms too small to even get in and close the door. One school has a bathroom where there is a stall that is accessible for someone who uses a chair, but the door to the bathroom is too big and heavy and there is no “button” to open it with.
What does this have to do with water? Well, the more you drink the more you pee. And when your bladder will only hold 250 to 300 ml before it spasms, every drop counts. I have seriously (sort of) thought about giving up coffee, but instead I have just reduced. The mistake I have been making is also reducing the amount of water that I drink. 
Dehydration is a bad state of affairs when you don’t have an SCI, when you do, symptoms are amplified. Recently, in conversations with more experienced SCI people, dehydration and how it affects energy levels and pain has become a hot topic. So I have been keeping track these last few days, about how I feel and how much water I have been drinking. It’s too soon to say for sure, but I may be starting to see a pattern.
Which may be why I had such a good day yesterday; and not because I was drinking rockstar. 🙂

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