The Great Scott (TGS for short, aka my neurologist) likes to ask me about my timed walks. He says taking timed walks is a diagnostic tool for him to help decide how I’m really doing beyond the general crappy feeling I have day-to-day. I’m supposed to take a walk. Preferably outside or in a “normal” situation (i.e. not on a tread mill or on some other device where you can hold on). Preferably several times a week.
I cannot lie. As much as I completely understand why this would be a very handy diagnostic tool, my time or energy for taking these timed walks is really not something to crow about. I’m lucky I make it from my parking garage to my office carrying my laptop on most days. Other days I can push it a little further, some days I might take a longer walk to lunch than others but generally speaking I don’t walk for fun. Walking sucks. Walking is hard for me. Walking is usually a precursor to falling down, and I have to tell you, I haven’t had a black eye in a good long time and I’m kind of hoping to keep it that way.
It always occurs to me, when I’m considering this whole idea of taking a “timed walk,” just what am I supposed to do when I crap out? If this diagnostic tool is meant to measure how far I can go until I tire or feel like I might lose control, how do I make it back to where I started? You might find me sitting on the corner of Brilliant and First Avenue some night just because I thought I could go a little farther but my body thought differently. This is not an appealing prospect to me.
The expanded disability status scale (or EDSS to us MS-ers) is a tool doctors use to determine how bad off you really are – that is my own definition, not the approved medically crafted definition. The more technical definition can be found here: https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss
Once you get above 4.5, the sole determination of your EDSS is walking. Some folks don’t like that, but that’s just the way the disability gods made it work so suck it up. I have literally no idea what TGS has muttered into his dictaphone-thingy about my current EDSS score, but based on the descriptions in the link above, I’m going to guess I am at about a 4 or 4.5. The challenge is, I do force myself to work a full day (whether or not that happens in my office or in my living room is not relevant to me). I do move around without aid – I do laundry, I do minor minor chores like changing my bed, grocery shopping – things like that. I do walk through airports sometimes and I generally make it. I’m just not entirely sure if I’m really at a 4 or 4.5 because that’s all I try to do or if I’m really at a 5 or 6 and should be considering some help.
The EDSS of 5.5 puts your disability at the level where “disability is severe enough to preclude full daily activities. Able to walk without aid or rest for 100m.” I’m beginning to fear that I’m probably a 5.5 in denial. So much so that I actually googled “how far is 100 meters?” today and once I realized how far it actually is, I realized that if I walked that far I would almost certainly need a rest at the other end. No doubt about it. It’s probably a little like my walk to my massage that one Saturday. I did it. But I needed to lay down on that table and rest for 90 minutes before I even thought about walking back home.
(If you, too, find yourself wondering how far 100 meters really is, I found this handy video quite useful https://www.youtube.com/watch?v=ew74X5z3Rgo In fact, I also found it kind of oddly entertaining.)
I feel like I’m grasping at straws. Anything to help me put some parameters around what is happening to me. I’d be a liar if I said I wasn’t really afraid that I’m getting worse. I feel things getting harder every day. Things I did just last year (like raking those damn leaves) are not possible for me barely a year later. I wonder if the difference is that now I KNOW what’s going on and therefore I am more sensitive to it and my negative mind tells me I can’t before I even try. But I call bullshit on that too because I went into that leaf raking full of possibility! I was optimistic and hopeful. I assumed I could do it. I didn’t assume I couldn’t. Then I couldn’t. Plain and simple.
Alas! There is no EDSS ranking for leaf raking and therefore that experience isn’t terribly reliable as a diagnostic tool. The Great Scott would frown at me (and quiet-talk at me sternly) about that one, I’m quite sure.
The other thing I can’t stop thinking about is that I skipped my last infusion. Maybe the Tysbri was really helping me but I just couldn’t tell because I didn’t know how much worse things could really get! I have an infusion coming up on Wednesday and I’m looking forward to it like a 6 year old on Christmas morning looking at a big old pile of presents. I’m looking forward to going to a room and having someone stick me with a needle, that’s how desperate I am to feel even a little bit better right now. I’m wishing on my lucky stars that I feel a bit better after the “golden juice” gets back into my bloodstream, like good old Nurse A likes to say. Maybe we pulled back prematurely? I’ll be emailing TGS about that, you can bet on it.
Honestly, I’m just not capable of not thinking about this stuff. I tell myself to stop. I tell myself not to read the articles that say the disability tends to move more quickly when MS is diagnosed later in life, but I read them anyway. I try not to fixate on exactly how far 100 meters is. How many meters is it to get to my office in the morning? Can we use THAT for the guide (because that is far easier for me to get my head around)?
It’s taken me almost four days to recoup after my last trip. Four. Days. It keeps getting longer every time. I don’t think I could walk 100 meters right now if my life depended on it or even if you told me I could personally change the results of the most recent presidential election if I did walk 101 meters. I would really, really want to! But I’m not sure I could. I might let liberal America down.
The bottom line is I needed to work from home today because I didn’t have even a small walk in me. I think that might count as “Disability severe enough to preclude full daily activities.” I don’t want to be a 5.5! I really don’t want it to happen. It feels like failure, that 5.5.
Maybe that’s why I avoid the timed walk. In addition to being afraid of being stranded somewhere and not being able to make it back to where I started from, maybe I’m afraid that I don’t have 100 meters in me and I don’t want to admit that shit just now. Each and every day of life is full of so many meters!
So. Many. Meters.
I feel compelled to note that today is the 19th anniversary of my husband’s death. Every year at this time (not just at this time, but especially at this time) I remember him for the joy and sheer silliness he brought to my life. He was kind of the epitome of the words “happy-go-lucky.” Not much brought him down.
I also remember what I wrote about him at the time. He seemed like a simple guy on the surface but he understood subtle things. He understood that I was a super independent, very self-sufficient woman who disliked asking for help. I liked to do things myself. I didn’t want to need anybody. I liked to be the one helping not the help-ee.
But he always knew that I was afraid to drive in the snow. He’d come pick me up at work when the roads were snow covered, without me having to ask, because he knew I wouldn’t ask and he liked to take care of me. “But what about my stupid car stuck in the lot? How will I get to work in the morning?” I’d ask him. And he’d smile his crooked smile and say, “I’ll take you, squid-lid. Stop bitching.”
He used to say he wished I “needed” him more than I did. Again, my life is full of more irony right now than I often care to acknowledge.
Also, I have no earthly idea why my husband’s pet name for me was “squid-lid.” No idea what-so-ever.