Recently I have crawled out of my own little hole and decided to be more vocal about my daily life. I’ve held shame and embarrassment of my MS since I was diagnosed and was afraid others would find out. If I was the one to talk about it first then maybe I could save face?
I’m 33 but physically I feel 75. I am, or was, an early elementary teacher but my body decided to cut my career short. I’ve had MS since my early 20s, and it decided to make things hard for the last 2 years. It was totally invisible (except on my MRI’s) until 2019 after my son turned 1. I had some warning signs after he was born: visual disturbances like I had been staring at the sun all day, clumsiness when I exerted myself, and my legs felt very unsteady. The unsteadiness wasn’t great because I felt it most when I was taking my son for swimming lessons. I was cold, he was cold, he was only 6 months old, I felt really unstable and everything was hard & concrete.
In very little time I went from being an able-bodied runner who moved fast, to a multiple walking aid needing sloth who moves at a glacial pace.
March 2020 I was admitted to the hospital with febrile neutropenia, and a bladder infection took me out. After that 3 day stay nothing has returned to normal. I’ve stopped working and gone on permanent disability. I was an elementary teacher, but was only able to perform my dream job for a short time before MS took it away. I had never really considered that MS was going to throw a wrench in everything because it makes me tired? That just didn’t seem like a just cause, but now I understand. Some days (many days) I wake up and it’s like I’m underwater. Not my head because I can breathe, but as if I live in a neck-deep pool. Everything takes so much energy. I’m tired and yawning and I’ve been awake for an hour. I watch Oliver rip around on his bike, or just run up the stairs and I’m in awe. “Mum run!” “I’m just watching you run!” “Mum do a slower run!” So I try. I don’t want to because I always end up on the floor. I have foot drop, significant weakness and stiffness in my right arm, leg, hand, ankle, heat/cold intolerance, headaches, brain fog, and a lot of fatigue. Fatigue makes daily tasks more difficult especially because it hasn’t been that predictable. I can no longer drive because my right leg doesn’t want to be a leg anymore.
I am starting a huge a 14 week program for neurological rehabilitation at the end of November. I’ll be using a PoNS device meant to help improve gait and balance along with regular physiotherapy. It’s going to be intense, so i’m simultaneously excited and terrified. I’m hoping that working comprehensively on balance will help retrain my brain to remember how to walk properly. In the last year I have fractured my foot in the same spot, rolled my ankle countless times, fallen on my face, and had a million bruises on my body. All of my falls are slow and they don’t justify the injuries. “How’d you fracture your foot? Twice?!” my response is “The first time I turned to walk into the bathroom. The second time I was standing at my mum’s and I shifted my weight from one leg to the other.” Why?!
I am going to document my therapy here. Perhaps it will provide me with encouragement when I’m exhausted and want to give up.