It’s funny. March was MS Awareness Month and I had a few things to say about that at the time. Now we find ourselves here on World MS Day, and I’m stumped, completely fresh out of new insights or worldly perspective that could help anyone get any kind of useful knowledge about this mess we call MS.

You could read this helpful list, from our friends at MultipleSclerosis.net that is very comprehensive and quite useful on the surface of things. Yet, even a list of 35 things is going to fall a bit short on the many shades of MS that we all experience in our own very special ways. But it’s helpful. If you don’t know the basics of MS, it’s a good place to start.

In my own way, I suppose this blog is my personal contribution to this auspicious day for awareness since I chose to take my MS journey all public and what not, way back after I received my official diagnosis on December 1, 2015. Since then, it’s been all out there all the time when it comes to my MS. I’ve also had mixed feelings about that. The thing is, having this disease doesn’t always bring out the best in me.

Sometimes MS does its best to bring out the very, very worst of what we each bring to this party we call life. My own recent pity party, party of one, is evidence of this truth. It gets ugly up in here, people. It just does. MS is not pretty (though you can be pretty and have MS, ask Ardra, one of my personal favorite MS bloggers out there doing her part to give good face and set the record straight about those two little letters while also maintaining strong fashion sense). But generally speaking, MS is a bitch and we’re all just out here trying to figure this shit out in our own various and sundry ways.

A good place to get a good dose of perspective on World MS Day is at the rehabilitation hospital.

You may find yourself there, as I did today, for my first physical therapy evaluation. It lasted about two hours. I got my first dose of reality before I stumbled in the front door. The funny thing about the rehabilitation hospital is that it takes exactly 649 steps to get one from the nearest of the handicapped parking spaces to the outpatient physical therapy area.

That’s a few more steps than I had planned. That’s a lot more steps than I had planned, let’s just be honest. I started to rethink my decision of driving myself to this appointment as soon as I arrived and discovered what I was facing. I immediately started to panic about the fact that I had to walk back out again, at some point, after being evaluated and theoretically doing some sort of physical activity and that put a pit in my stomach right from the start. Laurel and Hardy, my trekking poles, got a work out today. They did not let me down.

Shortly after arriving at the rehabilitation hospital I got smacked upside the head once again as I watched a woman in her 60’s maybe, strapped into a sort of canvas swing seat connected to a metal standing push cart-type of apparatus where her legs just made it to the ground, her hands were holding on some handles that she was to push while her therapist walked backward, pulling gently telling her to push a little harder, a little more, just a little harder, don’t give up, almost there…I wanted to help push her myself, but that was clearly not the point and I was probably not in the best shape after walking 649 steps to help any damn body do any damn thing.

It was heart wrenching. Her legs were barely moving. She pushed herself out of breath as she was suspended in that contraption trying with all of her might to push herself forward, while her physical therapist gently pulled her while walking backward. Her care taker was there at the end of the hall cheering her on, keeping tabs on her wheelchair that was waiting for her at the end of all of that pushing.

Even after 649 steps, I was technically in better shape than that lady.

Once I walked into the PT room with my therapist, Melissa, we had to maneuver around a guy with one leg who was trying do some leg lifts while laying on his side on a table, connected to some pulleys. He enthusiastically yelled out, “Welcome to the room, newbie.” As he grunted and pulled the pulley up with what was left of his left leg. He gave me a giant smile while he did this. I was also technically in better shape than that smiling guy.

I turned the bend, while my walking was being timed, and ran smack into another guy wearing a helmet and pedaling a stationary bike. He moved the bike pedals super slowly looking intensely at the screen in front of him but finding the time to look up for a second and give me a head nod of welcome when I turned the bend. His wheelchair was sitting next to the bike, waiting for him to finish so it could take him back home again. I was also technically in better shape than that guy, too.

What all of those people had in their eyes is the thing I fear I missed out on when the universe was giving out personality traits and that is physical drive. The drive to physically push oneself.

I’ve never had it. I push myself in different ways. I push myself mentally all of the time. I’ve just never been big on the whole physical thing. I’ve never played a sport competitively (really). I’ve never been a runner or a biker or a rower or a do-er of anything that wasn’t at least somewhat cerebral. I read. I write. I ponder. I don’t “pound it out.” I don’t push on through to the other side. I prefer for things to be a bit less strenuous than all that. I always have.

There was a short stint in my late thirties, early forties where I worked out with a fantastic trainer for about five years, three times a week, two times a week on my own. He made me do physical things I’d never thought I could do! He had me lifting weights and pushing my body in ways I never even considered before. I didn’t believe I could do any of it, ever, but he always believed I could and he’d goad me into action with the same sly suggestion each time, “Just do one. If you can’t do it, we’ll move on.” We always did more than one. He was a smart ass, that beloved trainer of mine, but he whipped me into shape until the day he moved out west to pursue his acting career.

I knew the first time I worked out alone, after he left, that it was over it. For five years I worked out like I was a goddamned Olympic hopeful, jumping on bosa balls and hanging from bars doing ab work or doing what I liked to refer to as the steps of doom, when he’d make me go up and down the back gym steps over and over again, while carrying hand weights. I was strong. I was in the best shape of my life. But as soon as Matt left to pursue his dreams, I felt my desire to keep training hard like that float away right along with him.

With all of that work I was doing, I didn’t feel great all the time. I mostly felt tired and hungry. I felt exhausted, really, and it felt so entirely superficial to me. I was never going to be a competitive athlete and I didn’t really enjoy working out (without Matt there to push me). In fact, I dreaded it. So I finally just stopped one day. Oddly enough it would be about three or four years later that I’d be diagnosed with MS, so it’s anybody’s guess what came first – MS fatigue or my lack of interest in my 5 days a week in the gym. The bottom line is I quit going to the gym and I didn’t miss it. I didn’t miss it at all.

So now here I am.

Almost three years into diagnosis and having gone fairly steadily downhill since that time, and it has come to my attention that while I won’t ever be a competitive athlete, my physicality and my desire to “work” are kind of core to my ability to live any kind of life with this dreaded disease. I probably knew I’d have to face that fact sooner or later -I just preferred to put it off as long humanly possible while I focused on remaining gainfully employed.

It wasn’t just work I was consumed with, it was trying to figure out how to do this thing called my life while also having MS. I focused on mastering huge things like managing the steps in my house and taking a shower more than once a week and doing laundry and grocery shopping – stuff like that. I focused on leaving my house three days a week to get to my office, even though it physically wiped me out. While I was doing all of that, I was slipping even further and further away from my physical self. I became almost entirely in my head – for both good reasons and necessary reasons, but I couldn’t deny it was happening. The less physical I got, the less I could do until very recently  I had to be pushed two blocks to a goddamned meeting because it was really hot out and I couldn’t walk that far, period. I can’t walk very far at all, obviously, because 649 steps almost did me in this afternoon.

The thing I saw in those fellow patient’s eyes was drive, commitment to their physical selves, regardless of the reason.

I don’t have that drive and I have to figure out how to cultivate it. I don’t enjoy discomfort. In fact, I avoid being uncomfortable at all costs. We have MS! Discomfort is the name of the game, but the idea of actually pushing myself to become MORE uncomfortable in order to be more comfortable eventually just feels like an oxymoron to me. But I think that’s the reality I keep trying not to accept.

I saw this reality at the PT clinic today. I saw it in all of their eyes. They were all in better shape than I was, mentally speaking, because they were faced with challenges and they looked them in the face and chose to go at them with all they had. I have to find it in me, somehow, to do that AND all of the other things I need to do to live my life (shower, do laundry, get to work, feed myself and my beasts, take care of stuff). I have to figure out a way to do all of it. I can’t ignore my physical self, as much as I’ve tried for the past two years or so.

I try to ignore my physical self because she pisses me off so much! She simply refuses to cooperate. She needs medicine that does horrible things to her body so she hates her body even more. She doesn’t look cute in clothes anymore and she has to wear ugly flat shoes because, duh, falling is a thing that happens a lot these days. She’s useless. Her brain, spotted as it is, still does some pretty awesome stuff but her body? Her body is a bastard.

I’m beginning my physical therapy quest to get from a .48 to a 1.0 in some important measure or other related to my walking speed that I learned about today and promptly forgot. I have to work on not being a constant “fall risk” due to my negative levels of balancing ability. I have to try and get stronger while I feel weaker every day.

I wish there was a pill you could take to give you that drive! That drive to try physically harder, to want to feel the pain in order to be better somehow. I would take it in an instant (in fact, I think that pill is called Prednisone and I’ve taken it a lot in the last couple of years which ironically kind of led me to this place of physical uselessness in its own weird way in the first place).

On World MS Day I learned that I need to try harder to try harder.

I need to prioritize my physical well-being even if I hate the very idea of it. I think it’s part of the whole acceptance thing that I also resist with all of my might, this necessity of shifting from ignoring my physical self to trying to care for it a bit more. Trying to be nicer to my body by working it a bit more? Trying to accept the reality that I have this one broken body and I have to push it a bit more to help it feel better. Even if that makes absolutely zero sense to me.

I’m really looking forward to World Nobody Has MS Day.

Maybe in my lifetime, remyelination drugs of some sort will become FDA approved and I can go back to feeling more like a real girl without all of this effort toward optimizing my pathetic “physical self.” I’m not sure I’m cut out for all of this hooey. I guess we’re about to find out.