Meet my little friend

These things are supposed to be good luck, right? *shivers*
My post-Ocrevus experience continues this week in the days leading up to my next half dose on May 23 and I have to tell you, it’s been full of interesting little experiences.

I started out feeling pretty fantastic. I feel I should thank my good friend and reliable juice, Solumedrol. It makes some people feel like they’re possessed of a devil. It makes me feel like Wonder Woman. Go figure.

After that wore off, I was still feeling better than I had been during the infamous two-month flush so I talked myself into the value of trying to get back to something close to my “normal” routine. Mind you, I meant my normal post-MS-post-two-month-flush normal but still. I made it into work pretty well last week. I had kind of a slow and sleep filled weekend but I expected that after two days of playing a Normal in Real Advertising Life.

I knew I had to prepare both mentally and physically for The Great Office Move of 2017 where myself and my team will move to some pretty swank new office space, a few blocks away from our existing office. We’ve had such an amazing couple of years that we outgrew our existing space. Yay, us! We can talk another time about the irony surrounding the fact that two of the worst years I’ve had in my personal life have somehow resulted in two of the most successful years in my long (almost 30 year) career in advertising.

How does that even happen? Clearly, I have no idea.

This week, I raised the stakes on my return to normal. I made it to the office on Monday AND Tuesday before 10:30AM. I have been a whirling dervish of activity. Packing. Dealing with client emergencies. Packing some more. Attending big important meetings by phone. More packing. More functioning as a Normal Ad Executive would function. More packing. Repeat.

Today was especially full. I burned through the charge on both of my cell phones because I was on one or the other of them all damn day. I got a lot done, for sure, but at 6PM I still had three things on my “before end of day on Tuesday” commitments that needed to be done. And remembered I somehow ran out of dry cat food this morning. What kind of self-respecting crazy old cat lady runs out of cat food with every damn home delivery service known to humankind at her fingertips!

I almost can’t even.

So I take my last call of the day from the parking lot at my local Petco. I realize that I desperately have to pee (and for any of my fellow MS’ers out there you know that when you have to go, you really have to go). I walk awkwardly into Petco because I have to pee and because it’s hot. Also I’m tired and I forgot to take my second dose of Ampyra today. But I walk slow and pray the lady dam doesn’t let loose on the way.

I wheel my cart to the back of the store where the Petco has it’s rest rooms. I lurch into the handi-stall because I have the world’s largest backpack since I now have to carry all of my items on my back for ultimate balance and it sometimes sticks out far enough to make closing the bathroom door problematic. I hang my backpack on the hook, barely get my undies down (thank god I’m wearing a dress) when the stream flows like the mighty rapids of Ohiopyle flowing from my very person. At least I assume that is a fast-running river as think I remember being told by several outdoorsy people, of course, because I would never go rafting.

I’m looking down at the floor thinking how I might not stop peeing before the store closes and I STILL have three things to do “before end of day” and it’s now 6:20PM and that’s when I notice him. That guy! The one in the picture up there. He’s staring at me from between my Adidas cap toes.

Then I notice that the floor is moving. The floor shouldn’t be moving but it is because a previous customer in a damn hurry dropped an entire box of crickets on the bathroom floor. The box that contained said insects was on the floor thus setting its contents free. Previously doomed to be reptile food or something, these happy recently freed crickets were scampering all over the floor, willy nilly, trying to escape their cruel fate. Running their tiny cricket legs over my cap toes. RUNNING. ALL OVER THE BATHROOM AND MY FEET.

At this auspicious moment a friend’s voice came to me, in my mind, he came to me and said these words of warning: “You best get your white ass up and out the door of this bathroom. You’re gonna have crickets in your drawlls, sure as your sitting there taking the world’s longest leisurely lady squat.” (I don’t have to name this friend. You will know who I refer to because he’s famous like that.)

I wildly shook out my drawlls, gathered my belongings, hastily washed my hands and fled that horrible room flooded with tiny fleeing vermin to get my damn cat food and go the hell home.

By the time I got home, I realized I could barely walk.

My body had that “alive in my mind but dead in my limbs” feeling I’ve come to know so well after a long day of Provigil fueled speed thinking. I’d hit the wall. There would be stair crawling in my future. I could get the giant backpack and my Petco bags in the house, I could feed the cats. But I knew there wasn’t much more in me and I had downstairs litter AND upstairs litter to deal with. And three more things to do before end of damn day.

Crawling up and down stairs it would be!

This is all to say that even when I feel quasi-OK, and I fully intend to give my new-normal routine my well-intentioned all, I still have MS. I still run out of steam. The whole “mind over matter” thing only works for so long until the broken central nervous system says, “Um, nope” and your limbs just stop physically working as limbs should work. Possibly while being set upon by vicious crickets.

The silver lining here is obvious. I no longer have a fear of being attacked in close quarters by creepy crawly tiny critters who threaten to take up residence in my under trousers.

I also know I like feeling a little bit better. I like at least trying to try. I did a lot this week and yes, I realize that it’s only Tuesday but I did a LOT this week. This means a couple of new things in my new life…

  1. I will be working from home tomorrow. I know it’s not ideal. It’s move week. There will be visitors in from offices near and far to assist in the moving effort but I won’t be there in my physical form. I can’t do it. There. I said it. The world didn’t end.
  2. I will also be cranking down the central air in the Aspinwall office of Moxie, since it is supposed to be a balmy 90 degrees tomorrow with much sun. Since I can barely walk as it is, walking through the outside atmosphere, that to me feels like quick sand, is definitely not a good idea.
  3. It’s going to be OK. The world won’t end if it takes me a little longer to get back to my version of normal. I might never get back to my version of normal and for today, that feels OK. I can’t promise I will see it quite the same way tomorrow, but that’s just the way MS life is.

I learn slow. But I learn. I fully expect to have a cricket filled nightmare tonight. That might be the thing that actually does me in.

4 thoughts on “Meet my little friend”

    1. Omg JENNIE!! Such memories! I will probably dream of being attacked by crickets AND mayflies! The horror!

  1. Trying to try. Not many people know how good it feels when we can actually try – To try! Thankful, grateful, forgetful (of bad days & how sneaky they can be…), mindful (of others’ hurdles & detours), ABLE!! — so many feelings!!!

    1. I know, right? Trying is what we do every second of every day. Trying is exhausting. But also necessary. It’s a conundrum. I hope you keep trying to try. I know how hard that is and know you are not alone. I’m over here doing it too. ?

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