It’s not a bad thing this time, this whole being on the floor thing.

See, I had something called a “co-session” of therapy this afternoon where my PT and OT worked with me at the same time. This unusual circumstance came about because I had a strong desire to do exercises on the floor and the fact is, I haven’t been able to get on the floor in years unless it was by way of a violent accident.

At inpatient rehab they have these raised mats that make floor exercises so much easier to accomplish because (obviously) they don’t make people like me get on the actual floor from which we are unlikely to be able to get back up. Well I don’t have one of those mats in my living room and I needed to focus on my rump (that’s what my 25-year-old PT Aaron calls my butt and it makes me laugh every time he says it).

My rump is weak, people, and in the way of many things. Things like standing up straight without holding on to my rollator with a death grip – but so many other important things. Washing my hands whilst standing at the sink. Removing pajama wedgies that result from attempting to get into bed to watch television alone. A strong rump (or glutes in your native language) just might be the key to a good life and I had to do those exercises on the floor because my bed is too squishy. We set the date for today for this co-session to take place and today I got down on the floor.

Every in-home therapy session starts with the routine vitals and the now-routine Covid 19 checklist. We all need to answer those questions (the therapists and me) before a session can begin. My vitals today were as I expected because I’d been nervous about this special day since we scheduled it a week ago. The floor! Without injury! Stretching out on a hard surface without bruises or broken bones! When I stuck my finger in the sanitized O2/heart rate checker my heart rate started around 110. Um, yeh. I was nervous as hell about my date with my hardwoods.

It felt so freaking good, y’all! It confounds me, frankly, why sitting cross legged on the floor gave me such joy but hot damn if it didn’t. We did bridges and core exercises and more bridges and other core exercises. And I stretched out while I was down there without having to hold on to anything at all. Lauren and Aaron both marveled at my flexibility. I explained that I’ve always been pretty bendy but spasticity stole that from me. Now thanks to my lovely lady pump, stretching out on the floor felt fan-fucking-tastic and I kind of wanted to stay down there forever.

At one point, I was on the floor with my OT Lauren on her knees behind me supporting my back and my PT Aaron on his knees in front of me trying to get my core to engage while I attempted to lift my legs off of the ground. To the outside world I bet it would look like some kind of bizarre Lamaze class what with all of the grunting going on and my head nestled upon Lauren’s bosom and Aaron crouched around my ankles but no, we were all just trying to find my core and make it engage. And engage it did.

We did a lot of work on the floor today but we also did a lot of laughing. We hand sanitized and washed hands and wiped down all tools and surfaces with Clorox wipes too. We don’t breath on each other, but we do get close because we have to. I’m still pushing those corona fears out of my head because this therapy is bringing me back to life, people. It’s not optional. It has to happen.

My mom worries that they’re working me too hard because on therapy days I pretty much can barely make it through dinner before dragging my whipped body to my bed for television watching and resting. A couple of times I’ve needed my mom’s help to lift my legs into the bed. I’m so finished after therapy that I feel drained of all life force and can only envision sitting perfectly still in my bed in front of my giant bedroom television watching something, anything, just to wait for my battery to recharge. Sometimes it’s not until morning that I feel recharged. But other times I just need a few hours.

My fear of not being able to get back up from the floor was very, very real. I mean, I’m writing this from my bed (on my phone again for the love of tendonitis) so you’ve probably guessed by now that I was successful. I should say we were successful because it took all three of us. Aaron insists that he only helped a little. Those two. They insist that I take credit for my progress even when I want to refuse to see it. “That was 85% you, Beth,” he said. “We just gave you a little assist. You’re killing this. I can’t wait to get you down here again. You’re going to be bouncing up and down all by yourself in no time.” That Aaron. He’s so shiny new and optimistic but I allow a little of his gleam to rub off on me because it just feels so fucking good.

I have terrible thoughts during this time of Corona virus madness and home care therapy that I’m ashamed to admit but I also feel compelled to admit them all at the same time.

For example, when I listen to or read about how hard this whole sheltering at home or social distancing is for people I start to feel very obnoxiously over it. My true reaction? I’ve been sheltering in place for the last 18 months for reasons of my own health and yes it’s hard and yes, you feel isolated and yes, you begin to climb the walls. But you get to do it with a healthy (mostly) body. I had to do it while managing a disease that made even sleeping a terrible job. It’s so hard to make yourself stay at home? Bitch, please. (I warned you…sometimes my random thoughts aren’t so nice.)

You can’t connect with your coworkers in a real authentic way via telephone or video conference because it feels so unnatural and forced? Um, yeh. Try working your ass off to keep an office afloat from your living room for two or so years working for a global mega-corporation and then tell me how unnatural this feels to you. Get in the sea, Barbara. Some of us live like this all the damn time and most of us don’t have the understanding and support that I get from my company. It’s just how we live.

You’re dying to get outside! You can’t stand the thought of your living room for one more day? You blow off social distancing because it’s freaking 77 degrees in late March and the sun is shining and, damn the Corona virus, you need to frolic with the neighbors or bring your kids to a city park jungle gym because life is short and you have spring fever…um. Right. Thanks to geniuses like those, life is likely to get even shorter for some of the more at risk people they come into contact with at some point along the way during their spring fever outdoor festivus. Thanks for throwing caution to the wind, genius. I thank you. And the curve thanks you.

Worst of all is what I thought when the announcement came that this whole situation would be going on for at least another 30 days.

The only person not joining the collective national groaning upon hearing that news might have been me. What was I thinking? Ok. That’s 30 more days I have to get stronger before I have to feel like Side Show Beth the Living Room Gimp again when the rest of the world starts living again.

Holy shit. Maybe by the time the curve levels off and starts to decline I’ll be able to go outside again and take a drive with the top down. Maybe in 30 days I will be able to get up off of the floor without the assistance of not one but two physical therapists! Maybe by then the front steps to get on to my porch won’t feel like the steppes of death. I just got myself a little more time without FOMO because of this unholy pandemic! So what if I had to roll up my area rugs and turn my perfect house into an obstacle-free training course. I have 30 more days until anyone will be out of their houses coming to visit. I have more time. I need more time.

Wow. I just wrote those things in a public forum.

In the end, the fact is that this pandemic breaks my heart. Reading and watching what our frontline health care workers are going through is gut wrenching. Watching people say goodbye to loved ones on their death beds via FaceTime is horrific. I want this to end and I want this to end fast.

But it also feels like regular life to me. What a conundrum! With each day that passes with “stay at home” orders in place, I feel a little tiny bit more understood because now you know, really know, what these past 18 months have been like for me. And others like me. Feeling understood is rare in these chronic illness circles. So if it takes admitting that I am a small woman with a little black heart to help people understand how amazing it is to feel understood and seen FINALLY then so be it. I never claimed to be morally superior. Nope. Not once. It’s strange to realize that knowing that other people are losing their minds at home can make me feel somehow less desperate but there you have it.

I have another co-therapy session next week and hence another date with the floor. In the meantime, I hope you’re doing what you can to flatten the curve. I hope you’re with loved ones and you haven’t killed each other yet. I hope you’ve done something nice (and maybe even anonymous) for someone because we are all truly in this together.

But if all you can manage is to manage yourself and your chronic illness, I’m proud of you too. Because now everyone knows how hard this can get. And you’re killing it every single day. You’re my hero.