It’s still off. My switch. It hasn’t gone back on. It’s a real conundrum. First they tell me, rest! Your body is healing, silly person, you’ve just put your body through some real shit. It’s not gonna come back over night. I mean, your body wasn’t even that great going into this whole adventure, so what did you expect? Rest! Wait this out. Be kind to yourself. Take your time.

Or don’t. You better move around a bit. Are you exercising? Did you try to walk more than a few feet? Have you stretched? Tell me you’re stretching! There are some great free videos on the MS Gym site on Facebook. You should try to get moving. If you don’t, you might never move again. Use it or lose it, BBAD. You can’t sleep your life away. It’s been three weeks now! Get off your lazy ass. You have to do more than climbing the stairs 50 times a day to pee. This drug wasn’t going to fix you. YOU have to fix you. Get moving.

But don’t move too much! You’ve just eliminated a pretty decent portion of your immune cells. It’s cold and flu season, sister. Public places are full of germs and germs are not your friend. A little cold could send you to the ER. Don’t even think about getting the flu. Stay away from all germs. People are bad. Little people? Sweet Jesus, BBAD, don’t even think about little people. Or people with little people. They’re germ factories! One hug or simple hand touch and you are toast. For the love of all that’s holy, don’t go anywhere germy. Have you washed your hands in the last five minutes? Better go wash your hands again. Just in case.

Maybe you should go back to PT. I mean, the movement thing is undeniable. They know you there. You paid the money to use their gym during your recovery. Get your lazy ass over there and do some physical therapy, BBAD, do it now. Do not pass GO. OMG do not go to that gym at the rehab hospital! It’s like a freaking cesspool of humanity! The hospital? The hospital is the worst place in the world for someone like you right now. Just walking into that facility could lead to some kind of horrible, creeping crud infection that will make your privates-adjacent rash look like a walk in the park. DO NOT GO THERE. EVER.

But wait. You feel especially shitty today, I can see that by the way you’re struggling to stand upright. Your back is on fire. Your legs are made of lead. Something must be going on. You must have a fever (I don’t have a fever). You basically killed your immune system, you probably have yet another UTI, that’s why you feel so utterly useless today. (I don’t have a UTI). Well, something’s up. But it should clear up in a few days. Or not. Or maybe a few weeks?

To be honest, BBAD, this whole Lemtrada thing? It’s a marathon, it’s not a sprint. Get your head right, girl. I felt like unwashed ass for almost 9 months before I started to feel human again. I felt better by day three! I was working in my office the week after Round 1. I felt like I was going to die, like my MS wasn’t as bad as THIS not even close. This is the worst decision I’ve ever made. I hate the word “lemtrada.” Well, one day I woke up and it was like I didn’t have MS anymore! I mean, I have bad days, of course, we all do but this drug gave me my life back plain and simple. It’s no cure, you realize that, but I felt human for the first time in a very long time. Best thing I ever did.

I have high expectations. I have low expectations. I have no expectations beyond hoping that once this whole year-long marathon to Round 2 goes by, I might go into Round 2 feeling somewhat better? Maybe a little? Not at all better but not much worse? That would be good. I think?

I felt well enough to do some laundry yesterday. All of my most important clothing, i.e. my pajamas, were dirty. I figured…I go up and down the steps a million times a day to pee! I’ll just use the toilet next to the laundry area. No extra walking! I sat while I folded. I didn’t even attempt to carry the bag of clean clothes back upstairs – I was wise and waited for help. It was super nice to go to bed in clean jammies last night. I did it!

Woke up at 10:30AM today without an alarm. Maybe my switch flipped! I am never awake without an alarm before Noon. Hell, I might not wake up at all without an alarm. Ten thirty in the morning is unheard of. I put away the laundry, slowly and carefully. I took a shower and didn’t die. It felt so good to be clean! It was 62 degrees and sunny today in Pittsburgh. I sat on the porch and breathed outside air. But I could feel my body not acting properly. I could feel pain that I’ve not felt in a while. I made myself go to my Mom’s for dinner because I said I would and because it’s always worth it to get some quality time with Meem. I’ve been in this house for weeks! I’m losing my damn mind. As soon as I left the house, the overwhelming rush of exhaustion hit me like a wave, knocking me right over without actually putting me on the ground. I was dragging. I am dragging. I might be in bed three minutes after I hit “publish” on this very post.

I should feel better by now. I need to give this time. This is a journey and I’ve just started. I feel like I’m worse than I was before how can that be possible (it’s the cell death, silly girl…it’s the torture you just put your body through in the name of health care. Be patient, grasshopper.)

But not too patient! You don’t want to atrophy.

Or maybe I do. I’m not even sure what I want anymore. I want to stop feeling like this. So I will go to bed early. I will envision the future state where the golden wires of my new central nervous system fuel all good things in my body. I won’t expose myself to errant germs. I will focus on the marathon. Sprints are terrible! I don’t think I’ve ever sprinted in my entire life.

I’ve never even come close to doing any damn marathons but we will not focus on that fact today. I was never much of a runner (that’s the understatement of the century). Why are all of the MS metaphors about running? Or sports? Or being a warrior! A powerful, strong warrior who is beating this insidious mess of a disease, kicking MS’s ass…I never did much actual ass kicking before MS, either.

I’m gonna need a new metaphor.