After my MS diagnosis, I stopped blaming my body for my failure

After my MS diagnosis, I stopped blaming my body for my failure

(Elizabeth von Ohsen/The Washington Post)

I woke up one morning shortly after my 21st birthday to find that my legs were stiff and sore. Overnight, walking became a burden, and the world would never be the same again.

For the next decade, doctors’ appointments consumed every spare moment I had. Through graduate school, marriage, and the birth of our two children, I told my story over and over again but never got answers. Some doctors looked me in the eye and said I was exaggerating; Others looked into my case but gave up before finding an answer.

As my symptoms worsened in my 30s, I lost confidence in my body and blamed it for failing me and stealing the best years of my life.

It took a long-term diagnosis of multiple sclerosis for my way of thinking to change.

That’s not to say that my MS diagnosis when I was 34 was easy. In fact, my vision of a disease-free future has kept me going since I was 21 years old. Without a diagnosis, there is still a chance that this will all go awayI would say to myself. So in 2017, when my doctor told me that a test detected signs of MS in my spinal fluid, I broke down. I feared losing a future rich in exploration, freedom, and independence.

MS is an autoimmune disease that attacks myelin, the protective covering of surrounding nerves, resulting in a variety of symptoms, including weakness, loss of balance, pain, tingling and fatigue. Nearly 1 million people in the United States have MS, according to the National Multiple Sclerosis Society. This condition is three times more common in women than in men, and often begins between the ages of 20 and 50, during the prime of life.

When I first got sick when I was 21, an MRI revealed lesions in my brain — a common sign of MS — but my neurologist didn’t think I had the disease. “I don’t know what this is, but it’s not MS,” he told me. A repeat MRI after six months showed no change, and after further years the condition was also stable. Areas of demyelination in my brain have been blamed for migraines.

Of the many doctors I saw, none of them requested a lumbar puncture until I found a neurologist who diagnosed me. It’s possible there are areas of demyelination that are too small to be seen on an MRI, he said. My spinal fluid provided the data I had been searching for for 13 years.

With my diagnosis came treatment. Over the following weeks, months and years, my body adapted to the immunosuppressive intravenous drug, Ocrevus, which I took by injection every six months. The medication weakened my immune system, which was attacking myelin, but it also helped improve my physical abilities. Preparing dinner didn’t drain my strength, and taking care of my kids became easier. Slowly, the fog of emotional trauma lifted and the woman looking at me in the mirror slowly began to resemble someone I recognized. For a long time I was dissatisfied with my body. But maybe that wasn’t fair.

For years I have answered the question: “Do you exercise?” With no. I’m unable to exercise.” However, there was nothing I wanted more than to go hiking with my husband, Josh, who had hiked the Appalachian Trail. I wanted so badly to be a part of the activity he loved so much in this world. But without A name for my illness There was no cure.Without medication, I was barely able to stand.

Now that I was in therapy, I decided it was time to use this body I’d been daring to have for over a decade. I started training against low resistance on an exercise bike that had sat idle in my basement for years. I started slow, set goals and pushed my body harder. At times, I felt like I was cruising through honey – I would end early, feeling defeated. Other days I would bike farther than I ever imagined my body could do.

Sixteen years after the onset of the disease, and with the ability to bike 15 miles on low resistance most days, I felt human again. Slowly, I was able to add family trips to museums, short walks in the park, and visits to my children’s school to my daily life.

This body of mine is not just a vessel to hold me anymore. He was able to venture out into the world again. I was far from perfect, but there was still a lot I could do. Maybe that was enough.

On our 12th wedding anniversary—three years into my treatment—my husband and I went to Asheville, North Carolina. On the second day of our trip, we parked the car at the foot of the Craggy Pinnacle Trail off the Blue Ridge Parkway, and I left my legs shaking. And all their baggage carries me onward, upward, and across the trail of twisting rhododendrons and lush green moss. I progressed over boulders, past tangled birches, and, through discomfort, climbed a 0.6-mile, 250-foot elevation gain that was rated as “moderately difficult” by our guide.

At the peak, I broke down and said to the nearest stranger, “I just climbed my first route in over a decade!” As I shouted my success from the mountaintop, I released years of blame and anger.

In that moment, for the first time in my adult life, I admired my body. I realized how far I had come during my darkest years – how I woke up every morning knowing the day was going to be tough but facing it anyway. day after day. Year after year.

I once felt the need to strive for perfection, but at the top of that mountain, my imperfect body showed me that it was more than enough. As the cold air whistled at the top of the mountain, I saw the beauty in everything I could do, rather than punishing myself for what I couldn’t do.

Maybe one day the new medication will allow my body to fully heal. But for now, I’ll accept imperfection, because it’s made me appreciate every step I take.

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