Life. Is. A. Lot. 

Today was our first day in our swanky new office space. That’s it above. Well. That’s some of it. It’s kind of giant. Much more space than we had before and amazingly technologically advanced and all shiny and new. The team was so excited.  It was a good day. 

It was also a long, hard, active day that required much planning for things I used to be able to take for granted. 

First, I’d planned a welcome party for the team and the fabulous group of support folks from the mother ship out of town who got us moved and up and running. We closed down on Friday at noon. We walked into an amazing new office where everything worked on Monday morning. 

It was a minor miracle. So we had a “welcome to your new home” breakfast and mimosas, thanks to our new office manager and all around awesome woman, Pam (that’s her up there in the picture). I didn’t have to do a damn thing but get into downtown Pittsburgh and park close enough that I could walk into my new office before the party began at 10am. 

This involved pre-laying out clothing (all black of course), showering the night before and bag packing to get my laptop back to the office. It involved figuring out how to put makeup on this face that is literally covered in some kind of rash or middle aged acne or plague (it’s bad). It involved every inch of my broken brain and quite a few spoons to accomplish. 

I did it. It may or may not have involved valet parking at the hotel across from my new office, but I did it. 

We toasted. We nibbled treats. Then I proceeded to move my office furniture around because I hated where they put my desk. My office has a glass door on the back and a garage door that opens on the other side. This means my back was either at the door or the garage door and I hated that. So I moved everything around. Myself. So my back could be against a wall. I sat several times in the process. My body is struggling at this point from the early morning planning and stress. I proceed to unplug and replug every electrical device on my desk – there are quite a few. I sit down in my chair with my back to the wall. I am victorious!

I hate it. It’s all wrong. I try to tell myself it’s ok as I head off to do the final walk-thru of the space with the project manager and the architect. But I have to pee first. This is when I realize how very far away my office is from the ladies’ room. It’s more steps than were in my entire old office. I have to circle the office to get to the ladies’ before heading to the front lobby to meet the architect. I have to pee really badly. Somehow I make it. It’s a goddamn MS miracle. 

We do the walk-thru. Paint this, replace that, this is coming later this week and those doors should be in by Friday…and my legs feel like solid lead tree trunks. I’m stumbling on our funky new carpet. They pretend not to notice and I am grateful. I get back to my office feeling relieved that I made it. The tour is done. 

And I have to pee again. Sigh. 

When I get back from my sojourn to the ladies’ I grab the architect who is rearranging various furniture around the space to his liking and I ask his opinion of my office arrangement. “I hate it,” he says. I hate it too. I move it all to the other side to face the opposite wall. I still hate it. Nothing fits where it should. I’m beginning to feel defeated. I think I sprouted a few new zits. I’m starving. Because it’s 1pm and I last ate two hard boiled eggs this morning at 7am. 

My bestie and I head down to the lobby to dine at one of two restaurants in the lobby of our new building. This is extremely handy since my legs aren’t quite operational at this stage. My luncheon companion is a true friend. She alerts me to the new blemish that has popped up on my lower cheek. I pick at it absently because it’s distracting me from how badly my back hurts. I’m doing this over lunch. I’m in a restaurant. I am disgusting. 

We have a great lunch after which I head back to my entirely wrong office and attempt to move the furniture around again. After a few tries at new positions, I flat give up and just start grabbing passers by to enlist their help. My team are a wonderful bunch. It took four of us but we finally got my feng shui to a place where my soul could feel at ease. At least for now. 

I stumble to the swanky new conference room at the other side of the building (again) to do a surprise conference call with an important client. I overestimate how long it’s going to take me to get there, so I just sit in the room alone and doodle. I can’t go all the way back to my office and all the way back here AGAIN and remain on my feet in the time I have left. When my two co-workers arrive to the room five minutes later, they both look at me kind of funny. I just shrug. This is my life now. They get me. 

The end of the day speeds by in a whirlwind of calls, emergency emails, a few more calls…a few more emails, trips to the bathroom and other minor walk abouts. When I finally realize I should probably text the valet to bring around my car because it is after 6pm and I’ve been out of spoons since around noon,  I shudder at how utterly ridiculous it is that I actually paid to valet park all damn day. 

I laugh at myself. Pack up my things. Walk to the elevators to head down to the lobby just as my car is arriving as if by magic or some kind of crazy kismet. But no, it’s because I paid a million dollars to valet park FOR THE DAY. Instead of thinking how ridiculous I am, I hop on in and proceed to head home with my bestie, my daily co-pilot. 

I don’t even care that I got caught in a speed trap on the way home and was presented with a ticket for $190 (and four points on my license) because I’ve learned something today. 

Who the eff cares? Who cares how overtly ridiculous I am? Who cares that I make outrageous plans, plots and orchestrations just to get through the damn day? Who cares that I paid to valet park and subsequently got a speeding ticket that is about the cost of my old parking lease? Who gives a good goddamn?

I’m lucky I have all of these options at all. Amazingly lucky. Let’s focus on the gratitude. 

I worked from 9:45am through 6:15pm and didn’t perish. I finally achieved decent office feng shui. I may have more zits than I had when I left the house this morning but at least I have good friends who won’t let me walk around with new blemishes on my face completely unbeknownst to me. (She knows me. She knows I’d have killed her when I got home and saw it for myself.) 

So I got a ridiculous speeding ticket! That cop ain’t gonna harsh my semi-comatose buzz. I may have come home and crawled right into bed before 8pm. But I did it. I got there on time. I remained on my feet when it was required. I made a festive toast and rearranged my office furniture at least seven times.  

Somehow that has to be enough. 

Life is a lot. Just getting through a basic everyday  day is a lot. But tomorrow is Ocrevus infusion day. My second half dose. Maybe now that I’ll be fully dosed for the next six months, all of this won’t be so hard in the near future. Someday I might be able to stay up and watch some tv when I get home after a long day. Someday I might even be able to go out for an after work drink or something nutty like that! 

It could happen. Until then, I’m just grateful for this awesome bed. It understands me. 

2 thoughts on “Life. Is. A. Lot. ”

  1. What a great description of most of my days. I always say my legs feel like tree trunks and no one can understand unless you’ve lived with MS.
    Thank you for your story 🙂

    1. Thanks for your kind words, Jill. Writing about this helps me a lot – it helps me understand that this is really that hard and I’m not just lazy. My body sometimes feels like the enemy. It’s good to know I’m not alone – others experience this disease in similar ways. I wish you the best!

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