I like to play a little game sometimes now that I’m in my post-Lemtrada recovery period. I call this game Recovering or Just Lazy: You Be the Judge.

While I’m kind of loosey goosey on the actual rules of this game, it mostly revolves around me analyzing every second of every waking moment of every day to determine if the incredible malaise and dysfunction I am feeling in every bone in my body is the result of the big bad thing I just put my body through or if it might actually just be my regular state of sloth.

Understand, first off, that this game is really easy to play because I’m not awake all that much lately so the hours I have to analyze aren’t as many as you might think. The game also involves desperate posts to Lemtrada-related Facebook groups that in equal measures make me feel both better and worse, often simultaneously, as well as long conversations with Leah and Katie, my two new friends who come hang out with me during the week at my house where they give me OT and PT respectively. My deep-seated fear of never getting better led me to this in-home experience to help keep me moving while I’m not likely to get myself to an actual place for physical therapy.

During one of these many conversations, Leah and I had to decide if my insistence on PT is actually making me stronger or if it’s conversely wearing me out to the point where the chances of me making it to the outside world become fewer and fewer. It’s shockingly difficult to determine which it is.

Last week, I intended to go into the office on Tuesday to be physically present for an out of town visitor but I didn’t actually get there. I woke up on Tuesday to legs of lead. These legs were dragging to the point of causing me to shock my kitties every time I touched them from the static electricity. I could barely make it down the steps when I woke up that morning. The freezing rain outside only added to the reality that me and the outside world were not going to be friends that day. I wondered if my PT that I had on Monday had worn me out to the point of bringing on this dead-leg syndrome the day after. When I reflected on the actual amount of physical work Katie and I put in on Monday, the very idea that this barely 20 minutes of bridges and stretching could have that kind of effect on me just bummed me out. Everybody keeps telling me to keep moving! How the hell can I do that if this is the result?

We have a goal, Leah and me. Our goal is to get me into the outside world a bit more often, walking about and doing the things I need to do like getting to the office or maybe doing an errand like getting money out of the cash machine or buying supplies like salt for the sidewalk. Crazy exciting things like that. But achieving that goal has been elusive. The weather hasn’t helped. I’m not safe under the best conditions but dragging legs aren’t super practical in snow and ice. My various rollators are pretty impressive, to be sure, but none of them sport all-weather tires. Not to mention the super obvious thing related to dysfunctional legs and driving an actual motorized vehicle. That’s just not safe. So, I don’t do it very often. The nice people at Bobby Rahal Mercedes Benz are going to be thrilled when they get my leased vehicle back with less than 10,000 miles on it, but I’m not worried about that. I have bigger fish to fry

Am I recovering? Or am I just lazy? Why can’t anyone give me a straight answer to what seems like a really simple question?

Leah the OT suggested an experiment might help us answer this question. Actually, she doesn’t think “just lazy” is a helpful way for me to characterize my current situation at all. She reminds me, like Nice Nurse Carol did a week or so ago, that I am recovering from a big bad medical thing that is nothing to sneeze at. Leah thinks I need to stop being so judgey and horrible to myself during this time of recovery. I love her optimism.

Leah knew that I had rescheduled the office meeting I intended to have last week to Monday of this week so it presented us with an opportunity to see what’s really going on here. She instructed me to do the exact same routine with Katie on Friday at my PT appointment as we did the previous Monday. I was to take my shower on Saturday, not Sunday, because Sunday was going to be a Leah-sanctioned day of rest. If I felt as weak and useless after PT on Friday, chances are I’m over doing it. If I don’t? Then I just had a bad day and I should keep up with the PT and just roll with the bad days when they happen, even if it feels like they happen almost every day.

I felt pretty terrible again, yesterday, the day after my PT.

It wasn’t as bad as it had been the previous Tuesday and that might be the result of what I’ve been calling Operation Energy Conservation. This is also at the direction of Leah the OT who is teaching me the basics of saving as much of myself for things I want to do instead of using it all up doing the things I have to do just to get through the day. Those things involve the steps which involve a lot of exercise that I’m not even aware that I’m doing. The idea is to minimize the energy I use just existing so I can have more energy for actually living.

Leah is not of the opinion that I need to leave my house just yet, but she does want me to learn more about how to make my house work better for me. We’ve done some simple things like moving one of my rollators upstairs to minimize the effort it takes me to move around up there. She also suggested things like working at my desk up there in the guest room where I happen to have an awesome antique desk instead of walking down the steps and back up again every hour on the hour to pee. She suggested I put a small refrigerator upstairs and a television in my bedroom to let me spend more time upstairs instead of doing all of those steps. She recommended a shower bench for me that doesn’t look like it belongs in a nursing home so I could sit under the water and spend more of my shower sitting down. I’m looking into getting one of those new-fangled Ring doorbells to minimize the number of times I need to go downstairs to answer the door. Some of these things are already done…some are in progress but the result has been some new habits.

Since my daytime activities mostly happen downstairs and I’ve not gotten the fridge or the Ring installed yet, I’m still working on my main floor during the day but last week I switched things up by relocating myself to the second floor around 6PM each night. I bring an extra bottle of water and I settle myself up there for the night. This cuts out at least 6 trips on the steps before bed. Energy conservation takes some planning but it can be done. I was able to use my new shower bench yesterday when I took my shower. It helped. Not a ton. But it helped. Last night I did my evening re-lo to the second floor a bit later than usual but I still eliminated lots of steps.

And today? Today is an OT-mandated day of rest. I’m not to do any of my exercises. I’m not to do much of anything at all! I’m to rest. All. Day. Long. For some reason, I am struggling to do this even when it’s mandated by a medical professional but I’m giving it a real go. You can see above my wardrobe of pajama-chic options in bright colors I’d never wear outside of the house. You can see my moral support in the form of Owen who is possibly the best rester in the world. He could give a master class on how to rest. Today I’m taking his class and doing pretty well. Owen obviously approves.

The goal of all of this tomfoolery is to help me have the energy to get into my office tomorrow. In person. In the outside world where I’ve not been since Sunday, January 19. If this kind of thing keeps up much longer I am in real danger of losing my damn mind. I love my house. I am fortunate to have such a wonderful place to get better. I am #blessed to have people around who bring me food and books and help with chores and just plain human company but I am losing my mind during this long, miserable winter. I’m straight up losing my damn mind. Another thing that makes me lose my damn mind? People who use the hashtag #blessed. It’s like I don’t even know who I am anymore.

But today, today I am resting. Only resting. In my cozy if garish jammies, surrounded by cozy if hairy creatures and in a house chock full of groceries, books and all manner of good things to watch on TV. I’m resting like it’s my job. I’m stretching in between resting but I’m not doing much more than that.

It’s supposed to be warm-ish tomorrow and they’re calling for rain. I know this is going to sound nuts but rain, which I love, is not my body’s friend. When it rains, my body straight up rebels. Pain is a big part of my day when it rains making basic locomotion more challenging. But after tomorrow’s rain we’re being plunged into yet another historic deep freeze where I’ll be unlikely to be making many visits to Outside. That’s how I think of it now, capital “O” Outside. That’s where we are, people. Tomorrow is my best chance for going Outside for a while and I’m really hoping I can make it happen.

The funny thing is how hard it is to give myself permission to have this day of rest even when it’s sanctioned by Leah the OT. I am still scanning those Facebook groups desperate to find someone, anyone, who feels like I do so I can stop berating myself for not getting better fast enough. I am still struggling to not struggle. I’m still your biggest cheerleader and my biggest detractor. I’m still trying hard not to be.

And the Lemtrada recovery continues. Shout out to my new friends Allie and Sean, Lemmies who are struggling with various stages of the recovery thing and found time to make connections with me when I needed them today. Gotta get back to resting now. I don’t want to mess up the experiment.