Life is made up of a whole lot of steps

Think about the average day. From the time you put your feet on the floor beside your bed in the morning to the time you lift them off that same floor again when you finally lay down to sleep. Whether you’re a person who wears a tiny computer to tick off your ten thousand steps or whether you’re just an average under achiever like me (before MS) and you hovered more around 5,000 – in any case, that’s a lot of steps.

Steps aren’t all created equal. You probably take a lot of your steps for granted. The steps you take to get your coffee in the shop up the street. The steps you take in your house between rooms. The steps you take to the bus stop. The steps you take walking to and from your car. Those aren’t “big” steps but they’re steps just the same and until you face a time in your life where you can’t take a single step for granted, you probably aren’t very aware of them at all.

I got cocky. I know, I know. I do it every time.

I have a day or two that doesn’t completely suck and I get all over confident and start to think that maybe this isn’t really happening. Maybe I’m going to just keep feeling better and better and maybe I really don’t need all of these drugs I take every day…Maybe this has all been one big long bad dream that I am now going to joyfully wake up from and go back to being the average middle aged woman (who considers herself rather happily lazy). But no. That’s actually not the case. This is hella real.

I decided to do an experiment today and skip my morning dose of Ampyra to see if I really did need it. I mean, so many things have gotten a little bit better in the last week or so that I thought it was possible, at least conceivable, that maybe I didn’t need the miracle walking drug. I’ve been wishing I could cut down on my daily drug cocktail. I don’t really walk that well sometimes even when taking the walking drug, so I talked myself into the possibility that maybe it wasn’t really working so well at all.

I had a meeting this afternoon at a local high rise downtown office building not that far from my office. I didn’t set myself up for failure. I knew walking to that meeting from my office a couple of blocks away would be pushing my luck so I didn’t even try. I worked from home in the morning. To be honest, I felt rather exhausted today for the first time in a week or so and I felt like I needed the extra rest that would result from not going into the actual office before the meeting (fewer steps…it makes sense). I drove myself to the meeting but as soon as I stepped out of my front door I knew I had made a terrible mistake.

I’d forgotten how bad frankenlegs can be!

I was walking in my head, but the messages were definitely not getting to my actual legs. My legs were dragging. My gait was wonky – as if I’d spent the morning drinking strong hooch and not resting up for a client meeting. I was walking into walls and banging off of trash cans. I tried to park as close as I could to the entrance to the building but even in the parking garage under the actual building, the number of steps you have to walk just to get inside of a high-rise office building is more than you’d think. The handi-spaces aren’t very close to the elevators at all (the close parking spaces were all marked “reserved” and I can almost guarantee they were occupied by able bodied walkers). The entrance I went through was a little further away than the usual one I go into and that meant more (guess what?) steps.

When I parked, I realized I had to pee. I wasn’t sure where the closest bathroom would be (the bathroom that would require as few drunk steps as possible) but when I finally got to the elevator I noticed with joy that it was located one floor down on a lower parking level. I pressed the button down, and not up, where I was actually going, hoping the extra steps to get to the bathroom wouldn’t be too many for me. I saw the bathroom door just outside of the elevator doors as they opened and I heaved a sigh of relief! Not too many extra steps. It was a single. I tried to open the door. It was locked. I waited about ten minutes. I knocked. It wasn’t occupied it was just locked. Awesome.

I head back up the elevator to meet my team in the upper lobby by the security desk where you sign in for meetings. The escalator to get to the upper lobby moves at some insane break-neck speed that required me to focus and concentrate really hard in order not to break my neck whilst jumping on. People are walking very fast all around me. Some of them are obviously annoyed with my hesitation to get on the escalator. They have places to be! I ignore them. I’m used to being in the way of other people who are used to walking anywhere and everywhere without any effort as fast as they please. Don’t they think I’d LIKE to walk faster? Probably not. They assume I’m lazy or just in their way.

I make it to the top of the escalator and explain my leg predicament to the three co-workers I was meeting and told them I was going to be walking extra slow because my legs just weren’t, well, super operational. They were extremely understanding. They walked slow (really slow) with me. I was surrounded by support as I stumble walked to the elevator to the 57th floor. If you’re wondering, that’s a lot of steps between the escalator and the elevator bank to the 57th floor.

When we arrived on 57, there was yet more walking to the conference room where our meeting was to be held. My co-workers, again, were awesome. They stood around me like a fortress, making it almost certain that if I did fall on my face, one of them would break my fall and probably help me back up again. I was grateful for the support and embarrassed that I needed it. I’m supposed to be in charge. I’m the leader! It does a number on your psyche to hobble to a meeting. I mean, I’ve done it before. I’ve done it a LOT in my recent past but it never gets easier. It never stops being frustrating, embarrassing, and just plain annoying but having people around you who get it does make it a bit better.

I made it to the conference room but then I remembered I had to pee. Guess where the bathroom was? Right. Exactly. It was around the bend, through the kitchen and to the left, which is exactly the path I just stumbled to get to the conference room and now I would be doing it three more times. Mandy, one of my co-workers, offered to walk me there. It’s humiliating, no question about it, but I was in no shape to turn down an escort to the ladies so I gladly took her up on it. Bless her. Really. Life with MS would suck (even more) without understanding people.

We had a great meeting. I’m still me (especially when sitting down). My addled feeling stopped the minute I sat my ass in the seat around the conference room table.

But I couldn’t get it out of my head. Walking, not very far, is a fundamental part of life! What would have made this experience better? I started to think about it. What walking aid would even help me in this situation? A cane won’t help my legs remember how to be legs. A rollator would make it even harder to navigate escalators that move at the speed of light. A scooter? Would I have to get an old lady car to accommodate my giant scooter so I could scoot from the parking lot to my destination (somehow) following the signs that indicate that you have to go completely out of your way to get where you’re going if you happen to need handicapped accessible pathways? None of these options seem workable to me.

Thank god I had some Ampyra in my bag and I popped when once I got to sit down but I still had some time before it would smooth out the walking signals and I know the whole concept of medication needing to maintain therapeutic levels to be effective. I got even more pissed at myself for experimenting with something so important. I walk funny WITH Ampyra. Without it, turns out, I can barely walk at all. Color me informed.

This is on my mind because I have some potential work travel coming up and I’m trying to get my head around how I’m going to manage that in my current state. If driving to a meeting in my own town causes this kind of consternation, imagine what happens when you add in a couple of airports, a southern climate (my travel would be to Atlanta. In July. FML). I’d have to be in good enough shape once I arrived to not only function but to engage, interact, be delightful even. Or make words in sentences that make sense, at the very least.

I thought I’d be farther along by now.

This disease isn’t moving at a speed that I find acceptable. I got cocky. A couple of good days had me booking airline tickets and throwing caution to the wind. A really bad day made me realize how bad an idea that is, right now. Right now? Right now I can manage only the fewest possible steps. I have to plan every detail of every day like a military operation focused on efficiency and minimizing foot traffic as if my life depended on it. When I’m home, I know where to park, where the paying machines are, where the bathrooms are, who I can call to help me, what my escape routes are in case of extreme distress…all of it! It’s not easy but I do it.

Toss in a trip down south for a day of executive training and all of that goes to hell. Will a cane help me? A rollator? A goddamn segway? Good lord. Imagine the damage I could do to myself and possibly others on a segway! I shudder to think of it.

I’ve already reached out to explore my options for attending remotely. I know people will understand if I can’t pull it off just yet. I think so, anyway. How long will that patience last? How do I not consider that question? It’s valid. But I don’t have room for it in my broken brain right now. There are too many other things to consider…like what I’d do if I happened to pee myself while hobbling around at super slow speed in search of a bathroom on unfamiliar turf.

Here’s what this cursed disease is teaching me.

Don’t get too cocky. You will be knocked on your proverbial ass. Keep trying, by all means keep trying, but also be realistic. Your B cells are still being killed off in droves and your body isn’t reacting well to the process so give it some time, girlfriend. Patience is a virtue and it’s also not an option in your life just now so suck it up, buttercup, your steps must be numbered and that’s just the way it is for the time being.

But while you’re doing all of that, don’t lose hope that every step won’t haunt you for the rest of your life. This will get easier. You will get used to it OR you will get you a goddamn segway. One way or the other, it has to get easier.

Oh. And stop experimenting with your medication, Einstein! The world is full of so many steps. Stop making things harder for yourself for the love of all that is holy.

And it continues. Sigh.

3 thoughts on “Life is made up of a whole lot of steps”

  1. I just had the, ” I thought things would be better by now!!” one year of MS talk with my husband last night. I live in Louisiana, I’m (was) a teacher!! I love summer! Not anymore, it’s depressing. While everyone is going to the lake and suntanning, I’m a freaking ghostly vampire. Also, I failed my first 3 month JCV blood work!! So after only 3 treatments the neurologist is moving on to Ocrevus. How is it? Have your transfusions made you sick in any way? You can’t find any info except for cancer warnings!!! I love your writing lady, keep it up!! πŸ™‚ Nicole

    1. Hey Nicole! I had no issues with my ocrevus infusion other than a mild allergic reaction that was handled easily with a bit of IV benedryl. I think I’m starting to feel a tiny bit better since my second half dose in late May but I had slipped into relapse while I was without Tysabri for 60 days pre- ocrevus so I had some serious coming back to do. I’m still not feeling great. But honestly I can’t remember the last time I could say I felt great. I’m into year two after diagnosis and starting to lose patience with the waiting but everyone I talk to who has had MS longer than me tells me the first 3 or 4 years are the worst. I know. That’s a long time to wait. But somehow it gives me some tiny bit of hope. Thanks for your kind words about my writing!! If I didn’t do it, I’d probably lose what’s left of my mind so it’s always nice when someone else likes to read it too. ? hang in there! Let me know how your ocrevus infusion goes!

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