The Morning Marathon of a Mother With Multiple Sclerosis

Every morning I wake up to the sound of my alarm, silence it for a few minutes to mentally prepare for the day, then slowly stretch and get out of bed…

I stroll across the hall, tripping once or twice because my brain isn’t warmed up enough to control my legs. Then I enter my almost-3-year-old’s room where he’s sleeping upside down, tangled in blankets underneath a pile of stuffed animals. I rub his back while singing, “Good morning, Mr. Rooster, good morning to you! Good morning, Mr. Rooster, cock-a-doodle-doo, good morning to you.” He wiggles a little to acknowledge my presence. Red, my German Shepherd, and Clyde, the Siberian Husky, hear me stumble around and come greet me with puppy kisses and wagging tails… I sleepily wander down the hall, holding onto the walls for stability as I can’t feel my feet. My two furry protectors guide me on each side all the way to the back door, and I let them out. I turn on the TV (for background noise) and a few lights.

Nobody is awake, and the dogs are outside. I have just a few minutes to myself before I start the day. I realize I can’t feel the right side of my face… or is it my hands I can’t feel? I shake it off as just another spontaneous symptom and make my way slowly back into the bedroom to wake my husband up. “Babe, it’s time to get up. Will you please wake up and get Otto ready? I have to jump in the shower, but we are already running late.” He responds with a wide-awake, “Yeah, sure” and I jump into the master bathroom to shower.

The water is hot, and I can feel it splashing on my back and rolling down to the ground. I grab a handful of acne soap to clear up the poor complexion my treatments have given me and rub it on my face. The mint wash cools the burning from my flushing side-effect. I still can’t feel the right side of my face. When I get out of the shower to dry off, I look in the mirror and try to smile. I can. I just can’t feel. I can’t feel my hands, and I can’t feel my feet except for a mild tingling sensation like they fell asleep… except they never wake up. I’ve learned to appreciate the tingling sensation, as it is some feeling.

I walk back out into the bedroom and my husband is still asleep, which doesn’t surprise me. I scurry back into Otto’s room to wake him up a little more as my husband wakes up confused that he fell back asleep… even though the same thing happens every day, 365 days a year. Tensions get heated as we scurry to get ready and I notice my left eye is seeing nothing but a blur bubble which either means “relapse” or “stress.” It’s definitely stress. The stress of the morning marathon gets everyone upset, and we fight. I hold Otto close and whisper I love him. Then my husband and I fight some more.

The commute takes us to daycare; I drop Otto off and travel to work as the first person there. Turning on all the lights, hanging up my coat and making the coffee. I realize I forgot to grab breakfast again, but thankfully I keep a small jar of peanut butter in my drawer so I can take my Tecfidera without throwing up. The day flies by. I work on the website, some branding projects and a few calls with our agency. I work through lunch because I forgot, again, to bring lunch. The Tecfidera makes my stomach so raw that I leave during meetings, put calls on hold and even cut conversations short to make it to the bathroom in time. My boss asks me how I’m doing — his closest friend has multiple sclerosis with all the same permanent disabilities as me. He understands. I tell him I’m wonderful and quickly change the subject to the incredible marketing metrics we are seeing.

The drive home is a mental prep for the evening marathon of getting in, doing the dishes, making dinner — a dinner for us and a dinner for the little dude — giving the little guy a bath, then into pajamas and the bedtime routine. My husband doesn’t touch the dinner or pokes through it and gives me the rest. Otto wants a peanut butter and jelly, not chicken nuggets, so I end up scrambling to fix things. I notice the pile of six new envelopes from our healthcare providers and the hospital sitting on the counter, and I toss them in the trash. I don’t even want to see how much more we owe after my last and only visit to the ER.

I have about five minutes to inhale my dinner that I can’t even taste thanks to the permanent taste of metal in my mouth from the meds. I get up to wash the dishes, draw Otto’s bath and pick up his room. I get a text from my mom, checking in on me to see how I’m doing. They worry too much, I’m miserable, but I send her a couple silly emoji and tell her I’m fine and that I love her.

I’m exhausted, and I want to cry. “Exhausted” doesn’t even cut it. When people get exhausted, they want to lay down and put their feet up. When I get exhausted, I feel like I’m constantly fighting gravity to stay upright as I focus on each simple movement of my feet and legs to execute the simplest activities. I sit down and put my feet up for a few moments and feel like the couch is going to swallow me whole.

I ask my husband to help and he argues that he’s in the middle of something and will help in a minute. The numbness in my feet has traveled up to my knees over the past 10 hours and the lesion pain in my head/neck makes me want to scream… but I continue to smile and tickle my son as we prepare for bath time. We get him all settled in and ready for bed by 8, and I am officially dead to the world. I can’t think, I can’t form words and I can’t move. When I try to talk, it takes me about three or four tries to finish a single sentence, which frustrates me more than anything, so I shut off. I set my alarm for the next day and pass out in all my clothes.

Every morning I wake up to the sound of my alarm, silence it for a few minutes… and pray that it was all just a nightmare. I silently pray today we’ll find a cure. Today, I’ll be a better mom, wife, daughter and employee because I’ll be stronger mentally and physically. Today, I won’t just survive — I’ll thrive and blossom into the young woman I had always hoped I would be. A strong, independent, quick-witted professional, ready to take on the world, hike, exercise, travel.

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