Tag: relapsing MS

My Life with MS: Hey, do you like games?

Posted by Erin on September 9, 2018

Last week, I turned 41 years old.

I know, I know, that’s not OLD (argues everyone who is already 40+…), but no one can deny that it at least qualifies as “getting up there.” So at 41, I’m experiencing the anxiety that most do around this age: that my body—this machine that houses my mind, my memories, my personality, my intellect—is starting to break down, and I’m going to find myself functioning less efficiently, in increasingly noticeable ways.

I was 38 when I was diagnosed with multiple sclerosis. MS is a chronic, degenerative condition affecting the central nervous system. The bodies of people who have MS function less efficiently, in increasingly noticeable ways. Sound familiar?

I haven’t had MS for very long, so I’m still learning what my version of this nasty life companion will be. And at the same time, I’m facing the realities of getting older. Being 41, and having MS, I find myself frequently playing this fun guessing game I like to call—everybody shout it out with me, “Wheel of Fortune” style— AGING! OR! MS!

A couple of the clues are super easy. Grey hairs and wrinkles? Definitely aging. Bright spots that show up on fancy magnet pictures of my brain? That’s MS, final answer.

But everything else? Every other tingle, every surprising little jab of pain, every loss of sensation? Those are the big question marks.

I have what’s known as relapsing-remitting MS. That means that there are periods when inflammation within my body causes new damage or aggravates existing damage to my brain and spinal cord. These are relapses. I’ve had two. The first led to my diagnosis, and the symptoms included loss of coordination and a bizarre electric sensation that traveled from my neck to my tailbone whenever I put my head down, chin to chest.

The second relapse came about a year later. I took a nap one afternoon, and when I woke up, the left side of my face was numb. It was that fast. I thought it was just my face, but when I finally went and saw my doctor, we discovered that there was low-grade numbness down the whole left side of my body. An MRI revealed a new lesion (an area of nerve damage) on my brain stem. Point for MS.

Between relapses (which can last a few days or a few months or longer), there are remissions. These are periods when the inflammation decreases and symptoms (all or some) lessen (all the way or some of the way).

So, when I was in the midst of an active relapse, it was safe to assume that whatever new bodily glitch or deterioration of function I was experiencing was because of the MS.

But if I’m cruising along through a remission (like I am now), feeling pretty good (i.e., feeling like a normal, marginally healthy human), and something new and weird happens, my immediate thought is, “Is this just me getting older, or do I need to be worried that this is my zombie brain trying to eat itself again?”

Let me give you some examples.

Since my diagnosis, I’ve noticed that I drop things more than I used to. I don’t know if I’m actually dropping things more, or just noticing it more, but either way, gravity is knocking things from my hands more than I’d like. Aging or MS?

I occasionally lose my balance when I stand up too fast from a seated position. Aging or MS?

Sometimes, when…ahem…“nature calls,” the urgency goes from zero to critical in a matter of seconds, and God help me if I’m not near a restroom. Aging or MS?

I forget things. Like, whole chunks of conversations I had not very long ago. I struggle to think of words or phrases or names. Stuff that I should be able to fucking remember. I lose my train of thought midway through talking.

Aging?

Or MS? Is that you, Mr. Relapse? Have you left another spot on my brain?

Here’s the real kick in the teeth about this “Aging or MS?” guessing game: there’s no way to win it. Every time I ask myself the question, it’s because something isn’t working the way it’s supposed to. Trying to figure out WHY is just a thing we humans feel the need to do. It brings peace of mind, somehow, even if knowing why won’t change a damn thing.

Aging or MS? Does it matter? There’s no turning back the clock on either one.

Not yet, anyway.

I mean, aging is aging, and there’s not much any of us can do about that (without grand feats of cosmetic manipulation anyway, and sometimes, not even then). But with MS, there remains a glimmer of hope. Progress has been made already. In the last 20 years or so, there have been about 15 medications approved in the U.S. for treatment of MS. They’re known as “disease modifying drugs” because, while they can’t stop disease progression entirely, they can slow it down, lessen the severity of symptoms, and extend those periods of remission.

Ending MS and restoring what’s been lost. That’s the goal. And when that day comes, I hope you see me with a big smile on my face, full of gratitude for the chance to grow wonderfully old, in better health.

My Life With MS: Cheap date

Posted by Erin on June 13, 2018

I like to responsibly enjoy adult beverages from time to time, but man, sometimes MS makes me look like a terrible drunk.

Consider: the central nervous system—comprised of the brain and the spinal cord—which, ya know, is kind of a big deal as far as systems go. MS is a disease which damages the central nervous system, slowing or interrupting communication between the brain/spinal cord and literally the entire rest of the body. Alcohol is a chemical depressant, and it affects the central nervous system in essentially the same way, by slowing signals that allow one to function normally. There’s a reason why the physical exam my neurologist performs on me every time I go see her—stand on one foot, now the other, follow my pen with just your eyes, walk along this straight line—is strikingly similar to a field sobriety test. A person who has had too much MS can look an awful lot like a person who’s had too many Jack and Cokes.

When these two—MS and alcohol—get together, they can sometimes do a real number on me. When I say that MS makes me look like a bad drunk, I don’t mean that I appear to be an alcoholic (I mean, perhaps I do, but that has nothing to do with the MS). It’s the opposite, actually. I mean that there are times when, after (or even while) enjoying a SINGLE tasty adult beverage, I quickly devolve into the cheapest date you’ve ever known. One glass of wine, and suddenly, even though my mental faculties are still totally ship-shape, my physical capacities take on the appearance of a first-time drinker attacking the liquor cabinet with the no-fucks-given speed and recklessness of someone who has just learned that a comet is headed straight for earth and we’ve all got 45 minutes until it’s lights out forever. My speech gets slurred. When I try to pick up a fork, I find that my coordination has gone bye-bye for the night. And balance? Yeah, nope.

All of this, resulting from ONE drink. I’m 40 years old, and lord knows I ain’t new to the drinking scene. One beer should not have this effect. One whiskey sour should not turn me into that person who people look at across the bar and think, wow, time to cut her off. Especially when I’m NOT DRUNK. Not even close.

And yeah, I know this is totally a first world problem. I know that it’s ridiculous to complain about how I appear when I choose to partake in a recreational substance. “If you don’t like what it does to you, you could just not drink, you know.” Yep. I get it. Thanks!

But that’s not the point. The point is that I shouldn’t HAVE to stop doing something just because my body forgets how to function when I do it. I hate that this disease makes me hesitant to enjoy certain aspects of my life. It holds me back from being myself. It embarrasses me.

And the reality is that MS is degenerative. There are things I can do to slow the progress of the disease, but there’s not a way to repair damage that’s already been done, and it’s likely that my MS will continue to impair me. There may come a time when I look like I’ve had a few too many when I’ve had none at all. It’s fucking scary and it makes me angry.

But I’m not an angry person, so, for now anyway, I don’t let the fear and the anger take hold for very long. I talk openly about MS in the hopes of educating people who don’t know much about it (like me, before I was diagnosed). I continue to try and live my life as if I don’t have a disease. But also, I’m real with the people who are closest to me, so I can lean on them for help and understanding, and maybe sometimes, for literal, physical support. My tribe is pretty fucking great, and that’s about the best I can hope for. So I say, cheers to that!