In my new, re-focused approach to having multiple sclerosis, I’ve been trying to keep myself motivated by focusing on small steps.

I mean that quite literally. Small steps seem to be the only steps available to me, now, at this current phase of my disease evolution. I know with my new diagnosis that the biggest threat to my future mobility is my ability to keep moving now – as much as I can, as often as I can but also as safely as I can. That last part is where the rub comes in.

I remember back when The Great Scott (my MS specialist) and I were just becoming friends, he used to ask me with annoying reliability and ever-increasing levels of obtuseness, “Tell me the last time you walked a mile, Maribeth.”

The first time he asked, I was taken off guard. I was momentarily speechless, not a very common state for me as you can imagine, but I think I said something to the effect of, “Well, TGS, I’m currently trying to figure out how to get to work every day while also not depleting myself to such a degree that I can actually safely make it into my house and do my evening chores without killing myself. Asking me the last time I walked a mile, or anywhere near a mile for that matter, is like asking me the last time I walked on the moon. It’s nearly as likely.” I mean, way to make me feel like an absolutely loser patient, TGS, nicely done!

In subsequent appointments when I’d arrive with my latest walking assistive device – first the cane, then the trekking poles, then my first rollator, then my second rollator – I found myself being a lot less patient when that inevitable question would slip out of TGS’s mouth. I may have mentioned wanting to punch him in the mouth once or twice.

I mean, seriously. I’m watching my daily life fall apart in front of my eyes and you want me to be out prancing about for fun and exercise like what you’re asking me to do isn’t 100% impossible for me to do. By taking that approach, you’re only making me feel less motivated to even try. I inevitably find myself thinking, “If I can’t walk a mile (or 10,000 steps or 7,500 steps or 3,000 steps or…hell even 200 steps on some days) then it’s stupid to try walking at all. If I can’t do enough to make an actual difference, I’ll just focus on not losing my job and navigating the stairs in my three-story house without killing myself, thank you very much.”

The last two weeks that I have been digesting the latest news of my PPMS diagnosis, the number of steps I can manage in a day has become an obsession. A not-so-healthy obsession in many ways because depending on the day, my step counts are so low that even acknowledging them at all depresses the hell out of me. Just for fun, here’s an example of what my step counts look like since my appointment at The Cleveland Clinic on May 21:

Yeh, the day after my road trip to Cleveland I hit a massive 82 steps. That’s what I call a lost day. A day where I can barely get out of bed let alone off of my second floor. The rest of that week is when I started feeling well enough to get to the first floor – meaning I could manage my steps more than once or twice a day so I did. But it nearly wrecked me. By the end of that week, I started to feel a little bit better still. This is when I had the bright idea that if I couldn’t leave the house or walk far enough to be safe in the outside world, I could at least focus on two things:

1. Trying to use my Cubii seated elliptical for at least ten minutes each day (as long as I could physically manage it).
2. Pacing. I started pacing. Pacing around my house and on my front porch was as far as I could make it and still be safe so that’s what I did.

The step count started to inch upward. I felt victorious.

Until Saturday morning when I woke up in horrible pain shooting from my left hip down my leg to knee. My leg felt cold to the touch and it was pretty much numb. When I tried to stand up, I couldn’t bear my own weight. Every step I took was a potential fall as my leg buckled under me and I had to cling to furniture and my upstairs rollator for dear life. I made it to the bathroom and back to my bed but there was no way I was willing to risk steps. I had to call my mom who dropped everything, as she does, to be at my house to feed my cats (and me) and also hung around long enough for me to get some feeling back in my leg so that I could try the steps.

I made her stand at the bottom of the steps while I gingerly stepped down one foot at a time in case I fell. How funny is that? I was planning to use my darling mother as a physical barrier to me busting my head open. Truth be told, if I had fallen I probably would have taken us both down on the hardwood but it seemed completely reasonable at the time. I made it! Neither of us perished. Victory!

My progress at growing my step counts took a hit yesterday. It made me feel really low, too, as it felt like all of my hard work, all of my baby steps, had been for nothing. I was back where I started being haunted by steps. It’s like I’m being followed and the sound of the steps getting louder behind me is my own impending disability pursuing me, becoming ever more complete and final.

I talked myself through it. It wasn’t easy. I had a few moments of flat out panic yesterday when I could feel my legs going numb little by little. First I could move my feet enough to do small circles in the air with each foot. Then I couldn’t even manage lifting my foot let alone making circles in the air.

I panicked. I cried a few times. I went super dark for a hot minute thinking how stupid and useless and idiotic this life with primary progressive MS was going to be. It would be just like this. I would be making progress, doing my little, sad, focusing on small improvements thing and then WHAM, I’d wake up on random mornings with yet more dysfunctional body parts. Just because that’s what it means to have PPMS – you primarily progress your way to being an invalid. I mean, this was what I told myself. This was going to be my new life. I’d better get used to it.

Here’s what I realized…

That might be what my new life was going to be like, but I can’t allow myself to focus on that. I had to push those very possible yet very morbid thoughts to the back of my mind. I needed to pretend that I’d be ok if I could just get back to the Cubii. I’d be OK if I could just pace around the house a little – maybe make it out to the front porch. Every tiny little step had to count. Fuck TGS and his “when did you walk a mile, Maribeth” bullshit. If I could walk 100 steps I’d be improving. That might not be enough to win any normal-person wellness awards but I’m not a normal person so why should my wellness look like a normal person’s wellness?

It’s the self-imposed standards that will do me in.

The article I read once so long ago about 10,000 steps each day being the litmus for a healthy life. The article I read about the EDSS scale and the basic ability to walk 100 meters. The wellness experts who know exactly how much water I should drink and how many steps I need to walk or what my BMI should be for me to be deemed a worthy human being…This crap is all over the media – forget the damn internet – constantly setting new guidelines for me to measure myself against and constantly failing to measure up.

I had a decent day today. I did this by leaving my house to meet my mom and my brother for lunch. When I got home, instead of walking straight across my lawn and to my front porch, I rollated myself down to the sidewalk and walked up my street. I only walked the length of two houses but was pacing, off of my front porch, and the weather today was glorious so it just felt good. I added 14 minutes on my Cubii when I got back inside (after a small rest, of course). I hit exactly 1,942 steps and I’m not quite in bed yet. I could realistically hit 2000 today. I mean. WHOAH.

When I sat down to write this post, I stumbled across an article on my Google homepage that almost made me spit my water all over my laptop. You might want to read it yourself. It’s from The Atlantic titled, “What 10,000 Steps Will Really Get You.”

I got myself all geared up to feel like a failure at life (again) when the article took a turn and actually made me sigh audibly. Here’s one of my favorite parts:

“I-Min Lee, a professor of epidemiology at the Harvard University T. H. Chan School of Public Health and the lead author of a new study published this week in the Journal of the American Medical Association, began looking into the step rule because she was curious about where it came from. “It turns out the original basis for this 10,000-step guideline was really a marketing strategy,” she explains. “In 1965, a Japanese company was selling pedometers, and they gave it a name that, in Japanese, means ‘the 10,000-step meter.’”

Based on conversations she’s had with Japanese researchers, Lee believes that name was chosen for the product because the character for “10,000” looks sort of like a man walking. As far as she knows, the actual health merits of that number have never been validated by research.

Scientific or not, this bit of branding ingenuity transmogrified into a pearl of wisdom that traveled around the globe over the next half century, and eventually found its way onto the wrists and into the pockets of millions of Americans. In her research, Lee put it to the test by observing the step totals and mortality rates of more than 16,000 elderly American women. The study’s results paint a more nuanced picture of the value of physical activity.”

(Emphasis added by me…the professional marketer who has no excuse in the world not to have sniffed this out a whole lot sooner.)

It gets better from there. Trust me. Go read it!

We live our lives by these standards we think are absolute truth and when we fall short of these standards, we’ve failed. We are failing at being well. Failing at being alive. My brain is so full of this BS it’s a wonder I actually make it out of bed as often as I do! Why bother when failure is the only option? I have a disease that means I am doomed to fail at life if these are the standards by which I am to measure myself. I need new standards. I need to set my own standards and then I need to change them when my disease changes – even if it’s just for a day.

That’s how MS works. One shit day means even your own perfectly reasonable at the time, personally mandated, standards are full of horse shit. Just trying. Just doing your best…that is what we need to focus on and toss all of these life-defeating standards of wellness into the dumpster fire where they belong.

I’m tired now and my legs are starting to get that creeping stiffness thing that happens when I’m overdue for my next dose of Tizanidine. Turns out the combination of this drug with my existing Baclofen is actually making a difference. I am still waiting for the Botox to kick in, too, so who knows? Maybe my days of creeping paralysis are under control for the present moment.

For the present moment.

There’s another lesson I keep trying to avoid. I’ve become a kicking, screaming toddler overdue for a nap when it comes to trying to learn that one – the pure joy of focusing on the now and doing my best to stay in it – not traveling in my mind down the path of my inevitable future doom.

I’m gonna work on that one tomorrow.