Robot walk

I was reading Ardra Shephard’s blog ( and she wrote “Like getting older, MS progression is a sneaky mother-fucker.” Nothing has ever been more spot on. It IS sneaky, like someone gradually stealing your candy. When I was younger I used to go into my parents room and see my dads pile of change on the dresser that he had emptied from his pockets. I would take a few coins but not a huge amount because I didn’t want him to notice. He more than likely knew how much was there so it probably didn’t go unnoticed. That’s how I imagine MS is like. A sneaky little kid peering around the corner with a conniving shit-eating grin, wondering how much it can take before it’s caught. Except when you catch it there’s no consequences for it! Only for ME because I wasn’t quick enough or able to predict it’s future asshole moves.

That same post talked about not knowing when you stopped being able to put pants on standing up. That would be something I wondered had it not been for many very memorable falls into the closet at our old house. I managed to break the closet runner and scratch paint that Neil needed to repair before we moved out.

At first I couldn’t do pants standing up because my balance was so terrible that I would tip over. I would look for something to brace my fall, and hope that I had at least succeeded in getting one leg through to stagger to some state of standing. In the case that I didn’t, which it often was, I would hop in attempt to balance but would always end up on the floor. Usually on my bottom, but also would’ve smacked my head on something, then I would roll back and “turtle” because I lack core strength to propel myself forward. My right arm is normally useless even supporting my own body weight so it’s no help in getting me up. I don’t even weigh that much so that’s a nice reminder of how feeble I’ve become. These falls always resulted in some dramatic bruises or a sore bump on the head.

These days I can’t do pants standing up both because of balance, but also account of my hip flexor muscle that decided it can’t lift my leg. It’s like it’s taking notes on Oliver when says “there’s tape on me! I can’t get up” or “I fell asleep, pick me up and carry me.” No thank you hip flexor. It’s YOUR JOB TO HELP.

Heading towards my PoNS therapy, I’ve been thinking specifically about things I’m hoping to improve. I was going up my stairs the other day, I was especially exhausted once I reached the top, and it occurred to me that I rely on my arms to pull myself up. My legs are just there to have something to hold me upright to reach further. Before Oliver, Neil and I used to go and run the stairs on Crescent Hill. That was all legs! You never saw me dragging my own body up by the hand rails. When did stairs start being an arm workout? I have no idea.

It leads me think of when I was going to Mount Royal University, because the main hall has a giant wide stairway that I needed to go up & down daily. There is NO way that I would have been able to secure a handrail because it was always so busy. People would not have been so patient to wait for me to go up the stairs one at a time. I know I wouldn’t have if someone was taking days years ago when I was fine. I suppose there’s an elevator, but it’s weird to think at one time I ran up those stairs because I wanted to get home (to probably do nothing I just didn’t enjoy being there).

Young me living at my parents house would run up and down the stairs in the basement. Sometimes I would go up the stairs in three jumps, and I would fall down those same stairs because they’re so steep (except I would just end up bumping down on my butt). Now when I go over I avoid going down because to me they are just a vertical death drop with a cement floor landing. Going up is hard to because my feet forget where to go on the narrow steps and my ridiculous arm isn’t sure where to go to pull up.

My dress worked very well for hiding my hip brace.

So I would like to work on my balance to go up stairs…and maybe improve my walking appearance? That’s probably a very lofty and unrealistic goal. This summer I opted out of walking down the aisle in my friend’s wedding. I both didn’t want to ruin the flow of the ceremony, and I’m just so self-conscious of the way I look when I walk so I didn’t want to be looked at.

We were pretending to walk away because the photographer knew I couldn’t actually walk like this.

Honestly, I think the thing I am most looking forward to is stretching. When I used to go for physio my favourite bit was the initial stretching because I can’t do the magic things they do to make my muscles calm down. Is that weird? My muscles have a great time being so high-strung all the time that they are often sore. They feel sore like I’ve been lifting weights and I don’t quite understand why? Stop pretending like you’ve done something hard muscles, you’ve just spent the day being stubborn.

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