It’s Been One of Those Years — MS, Mobility, and the MS Walk
I’m a bit of a fanatic about exercise; I have a daily exercise regime, and for the last five years I’ve walked (behind a Rollator) between two and five kilometers in the non-winter months. I also have a recumbent exercise bike I ride between 20 and 30 minutes on inclement weather days, and in the winter months.
I’ve done it both to maintain my upper body strength and also to essentially keep the wolves at bay, so to speak. You see, I have progressive multiple sclerosis (MS).
My neurologist has me classified as the “primary progressive” type of MS, (which affects less than 10 percent of people with MS) though thankfully it has been inactive throughout much of the 20 years I’ve been dealing with this terrible condition. I credit that inactivity to my diligence with exercise and keeping moving.
I do think a lot of it also has to do with my incredibly positive outlook, and never losing my sense of humor. While obviously not something quantifiable, it does make a difference, absolutely. If you can keep your head held high, and never give in, you will be ahead of the game always.
Dealing With Mobility Issues
In June of 2015, my MS went active — very active actually. Walking became a huge issue, so rather than walking two to five kilometers, it became a huge struggle just to walk across the street to catch the bus to go get groceries, seemingly overnight.
There were days when I’d use the manual wheelchair I have to move around my apartment, as I was having more than the odd fall inside.
I’ve still maintained my morning exercise regime, though probably at 80 percent of what I had been doing, and even though I can’t walk anywhere near what I had before, I still try and ride my bike if only for five to 10 minutes.
So, did this seemingly new reality crush my spirit, sending me into a spiral of sadness and depression? No.
Don’t get me wrong, there were days (or rather, the odd 10 minutes here and there), but for the most part, I kept my head above water 90 percent of the time.
Because of my diagnosis, the reality that things were not going to remain as they were forever has always been in my mind.
I was aware that at some point in my future, my disability would change, and again, the likelihood that a chair would definitely be part of my life. So therefore, intellectually I had already processed this and accepted it (begrudgingly).
Now that this probability has become closer to a full-time reality, it’s not quite so easy to accept emotionally — and in truth, I’m not there yet.
With respect to my sense of humor about things, well, that’s never changed. I still joke about everything, including my MS, at every opportunity.
The MS Walk
At the beginning of May we had our MS Walk in Canada, and I’ve participated for the last five years. You can choose to walk two and a half or five kilometers, and my team (a small group of friends who mean a ton to me) has always done the five.
This year, for the first time ever for me, I had no choice but to “roll” instead of walking (I knew there was no way I’d make the distance otherwise). So on a particularly cold and rainy day, I sat in my chair and one of my friends pushed me around the course, with me laughing and joking much of the time.
It was a huge change, that’s for sure, but there was no way I wasn’t going to participate in the walk. The MS Society of Canada has been incredibly good to me over the years, and it’s my annual opportunity to give a little back. This year I raised 50 percent more money than I’d ever raised before, which was amazing!
I’ve applied for funding now for a power wheelchair, just so I can continue to do things like get groceries, and to maintain my fiercely guarded independence. I’ll use it on days when even just walking through the grocery store is beyond my strength level.
For the record, I am getting a fast one, because I’ll invariably want to get into drag races with anyone else I see using a power chair or scooter.
See — no way am I not going to make light of even this!
In the meantime, I’ve not stopped fighting, nor will I, until I can’t fight any longer (and I’m not certain that could ever happen). Now that the nicer weather has started again, I’m trying to get out and walk a little more.
And while walking two kilometers has become far more than I can physically manage, I have been trying to push myself to walk one kilometer (though I do stop to rest relatively frequently).
The important thing is I’m trying, and that means more than anything. It’s the not giving in, not letting MS win that’s all that matters to me.