Oh Hi

Did you miss me? It's been a minute. I was having a bad day.

One thing I hate about living with my progressive/aggressive MS is that it makes my previous excitement about things (Christmas! Summer! Swimming!) less exciting. Mostly because they are harder to do. Which sucks. I have been having a little of that for the last few weeks: I love spring, it is the sigh of relief that I feel every year when it FINALLY stops snowing and it’s not too hot yet. And yet, this March into April was a bit tough. I kept having bad days. Which alarmed the people I love.

But what is a bad day? I mean, beyond the whole shitty day thing.

Image description: Book cover for Alexander and the Terrible, Horrible, No Good, Very Bad Day; with a four-poster brass bed, and a red-headed child covered in blankets.

When you have a chronic illness, especially one with physical disabilities attached to it, bad days are this weird phenomenon where you might wake up feeling pretty good emotionally, and then discover that you cannot stand up out of bed. Or that you can’t, for the life of yourself, remember what it was your body was supposed to do when thinking about food. (Get hungry? Eat? Something like that. . .) Or that, once in the shower, you don’t have the strength to rub the shampoo into your hair, let alone wash it back out again. And then your pretty-good feeling gets darker and more frustrated, and then you find yourself saying things to your spouse like, “It’s so hard to live trapped in a body that doesn’t work,” and he worries because that sounds despairing. Or you mention that exchange to your mom and she begins to fret that she should move down to your state like, yesterday, to make sure you don’t kill yourself. (Though ironically, in telling my mother about the bad day, I felt much better. Maybe because I sloughed off my frustration onto her. Thanks mom!)

I even wrote a depressed Note and my lovely readers and followers responded and I did feel a bit more spring-like. I also slept, which it turns out is a thing that helps. Who knew? And as a result, I’ve started being able to love the fact that the days are longer and longer, the trees are popping out in full bloom, and it’s inching up in terms of temperature (though not crazy, all the way up to 50 degrees F, yay!).

OH! And we went to Texas! Because of course we did. Our nephew got married in a lovely tiny ceremony, at a bonsai garden. The guy working there was a trip—I needed a bathroom, and our other nephew was helping me find it. We thought we did—there was a room labeled TOILET, and I went in. And oh good lord. The toilet seat looked like it had a skin disease and the bowl was brown and mottled and horrifying. Now, I am a person who will pee anywhere. I will always use a toilet if it is available, because who knows when you might get another chance? And even I thought, ummm. So I went back out, thinking I would just wet myself if I must, at which point the guy came up and exclaimed about how “Oh my God, that’s NOT the bathroom! Don’t use that one!” An he showed me to the actual usable bathroom, which was totally fine. Thankfully. Because I really didn’t want to wet myself at a wedding.

So we got back from Texas and I had a couple of bad days and began worrying that maybe this is the next step in my disability, which has seemed to just be getting worse, inexorably, regardless of what I do. (Yes, I’ve tried the diets and the exercise and the physio/PT and the acupuncture and the UV light and and and). Then I scared everyone into worrying that I might off myself, though honestly I could never if only because I have railed publicly about the bullshit idea that disabled people must want to kill themselves rather than live using a wheelchair, and fuck if I’m going to give anyone the pleasure of thinking I was wrong. Because I am never wrong.

And then I got some actual sleep. And I started having good days again. Days where I was able to work out, even. And go out to dinner and to the local winery. Days where Michael could take the dog for a walk without fretting that I might be stuck in the shower for an hour while he’s gone. Days where I looked up and thought, Oh shit, I need to write a newsletter!

So here you go. It’s beautiful outside, and we are going later to a concert given by one of Michael’s colleagues, who composes post-modernist music. And this morning Michael gave Rocky a bath, which was both desperately needed (all his white parts had turned gray) and ridiculously funny, as he zoomed around afterward trying to get dry. These are the kinds of things I wouldn’t want to miss. So I’m going to stick around for a while longer. Bad days be damned.

Image description: A bedraggled, post-bath Rocky (black and white spaniel) on a wood floor, on a wood floor near a white rug and the edge of a gray chair