I’ve been on vacation from work this past week. Today is my last day off before I head back to the office tomorrow.

It’s given me more time than usual to deal with my disease, without the added pressure of work. I mean, it’s not that much different really than my working week – I still have to keep my eye on the happenings at the office and know what’s going down –  but it gives me the ability to not respond or not jump on every possible happening right away without the massive amounts of guilt that prevent me from doing that during regular weeks. I know. It’s guilt of my own making but it’s guilt nonetheless.

Also during the past week, the weather where I live in Pittsburgh, PA suddenly switched over to middle-of-summer levels of heat and extreme humidity fundamentally impacting my “vacation’ with weather-related MS-mess more extreme than the usual.

If you have MS or know someone who does, for some of us, this combination of uber heat and water-for-air humidity is a killer one-two punch of badness. I’ve always been heat sensitive but this kind of sensitivity is off the charts. My semi-functional body in moderate weather conditions becomes a weak, limp, incredibly unsteady wobbly thing that is barely categorized as functional. A short walk from my house to my car to get to the many medical appointments that happened during my “vacation” rendered me useless, having to lift my legs to get them into my car and requiring two-handed walking support instead of my old standby, Stanley, my cane. The 649 steps to deliver myself to my outpatient physical therapy evaluation last week nearly did me in.

The thing is, during what was occasionally an extremely cold winter, I also discovered that summer’s polar opposite also had terrible effects on my semi-functional body. Extreme cold made me ache to such a degree that it sometime stunned me. Cold made my joints feel like they were in constant need of lubrication. My legs weren’t terribly functional in extreme cold either but it was more because of stiffness and pain instead of the wobbly, squid-like weakness that comes with extreme heat.

We can argue the reality of global warming some other day but we can probably agree that our weather has taken a turn for the extreme.

I mean, I live in Pittsburgh. I’m a northern kind of girl by choice. I don’t venture much below the Mason Dixon line unless I absolutely have to because I know the heat and humidity are going to turn me into a human squid. But the extreme heat and humidity that has become the norm up north, coupled with the extreme cold usually reserved for our far northern neighbors on the upper northeast coast and in northern locales like Canada, has now become a perfect one-two punch for my unreliable bodily operation.

You can see where this is going.

I have what amounts to an extremely slim window of weather conditions that help my body feel more like a body should. We all know how unreliable weather forecasts are! My life is not only ruled by random and bizarre symptoms that pop up like zits on a teenager’s face the day before prom but it’s also directly affected by something as random and unpredictable as the damn weather.

I have no less than five weather apps on my phone. I am obsessed with checking the dew point because high dew points mean terrible uncomfortable air. The flip flopping conditions from the cool, dry central air in my home, to the wet, hot weather outside my front door renders me all but useless in the short span of time that it takes me to get from one location to the other. Even a few minutes outside in that kind of wet heat ruins me for the rest of the day. Sometimes it ruins me for more than that day.

I bring this up today because I woke up to the most wonderful change you could ever imagine! The windows are open. The air is cool. The breeze that is making twinkly music from my porch wind chimes is dry, thanks to a dew point in the low fifties. I woke up today feeling like I had a kitchen full of bananas!

Wait…what?

That’s one more funny thing about my life with MS. It’s a borderline obsessive fear of cursing myself by even THINKING I might be having a (whisper) good day. The “g” word itself gives me shivers. Saying it is verboten. Writing it feels like asking for a curse. I have never before considered myself a superstitious person. I may have been wrong about that.

One of my best MS compatriots told me that she and her husband don’t ever utter the “g” word because they, too, have a serious fear of the MS jinx. Their safe word is umbrella. When we chat on some mornings, I ask her if she thinks she will need an umbrella today. If she tells me she lost her umbrella, I know exactly what she means.

I decided my safe word would be bananas. I haven’t woken up with a good, ripe banana in almost a full year since my big relapse in July 2017 when I had to be hospitalized for four days.

My symptoms have been in overdrive since that time regardless of my magical new DMT (disease modifying therapy). Ocrevus was making other MS patients feel like real boys and girls and they were gleefully talking about it all over the freaking internet, but I was over here struggling up and down the steps in my house when I had to pee 37 times a day. Scooping litter on two floors of my house twice a day became a monumental task. Ask anyone who’s made the mistake of coming to visit me these last few months. For the pleasure of my unwashed company, they were likely asked to scoop my litter before they left. Imagine! The balls of me! To make visitors scoop my litter without even offering a glass of damn wine in payment. Filtered water just doesn’t feel like payment enough.

When I am fresh out of bananas, as I have been for such a very long time, you start to have the nerve to ask for help with a whole lot of things you’d never even consider when you were in (good) health.

I woke up today feeling like I had a banana or two for the first time in what feels like forever! It didn’t last all that long. I can feel the wobblies coming on the later I get into the day. I have been trying to get used to my new progressive lenses in my glasses that help me see at various different distances which is awesome but that also give me a terrible case of the dizzies, which is decidedly not awesome. I might have to only wear them while seated? Add one more thing to the list of random things that might could affect if I have a banana on any given day.

Anyway. I’ll be heading to my PT appointment at 4PM today and I’m wondering how it will go on a nice, cool, temperate kind of June day like we’ve been gifted today. I wonder if I will have any bananas with me when I get there? I should probably leave my fancy new glasses at home, just to be safe.

Anyway. I know these kinds of days are not the rule at this time of year. I know it’s about to be the dog days of summer and for me this is definitely going to feel more like the squid days of summer but I’m going to enjoy these open windows, and perhaps a banana or two while I’m at it, for as long as I can.

Even if I only get 15.49 days of not-extreme-hot-or-cold in any given year, I’m going to enjoy the crap out of them while they last even if it is only from my porch swing.