Today begins a feature that will pop up in these missives when I feel like it: the Periodic Playlist. As some of you know, I looovveee to play DJ Dutch. This first batch represents my personal MS symptoms (and it’s also a legit solid playlist for your listening pleasure). Why “personal”? Because there’s a saying in the MS community: “No two the same.” One of the totally messed up things about so many chronic illnesses — including mental illnesses — is that one diagnosis looks all kinds of ways on different people. Also, symptoms come and go and can be invisible or obvious, without pattern or logic. I could go off on a whole thing about how we feel a desperate need to shove things into labeled buckets, but that’s a whole separate newsletter.

So, this playlist encapsulates many of my symptoms within the titles themselves. My intention here isn’t to lament or garner sympathy; ‘tis a matter of facts and an effort to expose the nefarious invisible symptoms unknown to the naked eye — but set to music!!! Lemme break it on down:

These first selections encompass what many people think of when they hear MS: mobility issues. You know what’s funny? You’re not wrong! Lesions (the holes in the myelin sheaths around nerves) on the spine, depending on their placement and size, can affect balance, muscle strength, movement in the extremities, and so much more! Generally, for me, this shows up as dizziness, walking into walls, veering off course like I’m tipsy, bouts of nausea, and straight-up falling down if I’m way beyond my fatigue limit (this has only happened once or twice). Weirdly, if there are people walking around me — especially if we’re doing that annoying, slow shuffle people do as they file out of a room — I lose track of my body in space and will bounce off people like a pinball if I’m not hanging onto someone, hence “Lean On.” Next time you need to start a bar fight, set me loose to slosh everyone’s drinks onto their silk shirts or whatever.

And then there’s fatigue. Sometimes people will say things like, “Yeah, I’m super tired all the time, too.” I think it comes from a place of wanting to normalize things and relate — in other words, a good place. HOWEVER, here’s where I clarify: Everyone is tired. We’re all pretty worn out most of the time. That is 100% true. And I am here to tell you, the fatigue that comes with some chronic illnesses is different. I do not say this as some kind of twisted badge of MS honor: I am not shitting you. I call it “Lie down or fall down.” Someone else I know with MS explained it like this: “Imagine I’m crossing a busy street and fatigue hits. I truly would consider lying down in the road and taking my chances.” If I push through this kind of fatigue, I risk a fall. I sometimes think of it like an appliance shorting out, given the exposed wiring in my spine and brain. When those sparks start flyin’, I best get to lyin’ (down). Nope.

So then there’s pain, a very common MS symptom. Those baldy wires can mess with various bodily systems. I get headaches pretty frequently. Muscle pain/spasms is a thing. And then there’s weird burning — neuropathy — from nerve damage. When a person has an MS “attack” or “flare” that means new symptoms are in play because new lesions have formed. Steroids can calm or even reverse those symptoms, but even then the ghosts of lesions past usually remain. For me, that’s constant burning in my lower legs that went numb during my last attack.

Naked nerves in the brain — a piece of human anatomy we still don’t quite understand — is a little like that show Jackass: You never quite know what’s going to happen, but you know it’s going to be a bunch of tomfoolery that will probably end badly. Covid has brought brain fog into the mainstream…FINALLY. And people over the age of 40 will tell me that forgetting things and losing things is all a part of getting older. True. And also I’m over 40 with holes in nerves of the ol’ brain-er-ino, so instead of just walking into a room and forgetting why I’m in there, I might do that three times in a row, remember, and then forget again. And when I’m tired, my brain is like that scene in Mrs. Doubtfire when Robin Williams gets drunk at the restaurant and ends up looking like this:

Finally, there are the weird outliers:

When it’s dark, sometimes I lose proprioception: awareness of my body in space. Not quite night blindness, as the song above suggests, but it kind of feels like that. And weirdly, despite fatigue, insomnia is a common symptom. Again, those brain nerves get to acting up and do really weird shit. Since emotions are regulated in the brain, mood swings and irritability are common, so that’s fun — am I right, family?!? Sensory overload comes into play pretty often, also because of those literal raw nerves. So, if I ever whip out earplugs in your presence, that’s why (unless you’re singing “We Built This City” — then that’s why).

Now, even if you’re not chronically ill, you may have your own playlist of bodily disturbances because these complex miracle meat suits have a million ways to malfunction. So please feel free to share your song(s) in the comments and legit listen to these songs because they’re great.