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Life With MS: Holding Onto My Old Life

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Life With MS: Holding Onto My Old Life

She ignored her disease and refused to talk to her doctor—until MS forced her to face the truth

In the first three years post MS diagnosis I was completely out of touch. I refused to learn about my condition. I refused to make any changes to my life; instead, I went into denial. I decided that instead of embracing this change, I’d to push forward in my old pre-MS life. Huge mistake!

The worst thing a person can do, when given bad news, is not to acknowledge that news—not to acknowledge the impact of what that news is and to dismiss it like it is nothing. After going through an intense four days of steroid treatments to combat an MS attack on my left side, life went back to “normal.” I regained my muscle strength; my walk went back to normal, I was wearing my heels again, and I threw myself into my work. I also managed to graduate from a master’s program, get married to most the wonderful man (the same man who was my boyfriend when I got my diagnosis), move to another state and get a new job. No one but a few close people and family even knew I had MS.

MS, an acknowledged foe, slipped back into the recesses of my body, but it did not retreat without leaving behind a few reminders: perpetually numb hands and feet and fatigue. Instead of adapting to my new body, I tried to hang onto my old one. I tried to keep working 12-hour days. Fatigue was strong and I would often come home and be “stuck” on the couch for hours, too tired even to eat. I struggled to get dressed because with numb hands, buttoning and zipping clothes can be a challenge. I remember spending 20 minutes trying to button my collar shirt for work, and instead of changing into a different shirt, I stubbornly hung onto the one with buttons, tears welling in my eyes. I should be able to put on a blouse, shouldn’t I? Even on days when my legs were a little wobbly, I would place my feet in my high heels and teeter-totter into the office. I had to be fine. I had to resume my life. What I refused to acknowledge was that my old life was gone and my new life was passing me by.

As a new MS patient in denial, I did not do any web searches. I did nothing. I didn’t even talk to my doctor. I just took the medicine prescribed to me. First it was Avonex, the once-a-week shot I had to administer in my muscles. At 115 pounds, that meant I had to inject myself in the biggest muscle I had—my legs. Each week, rotating legs, rotating sites. For two years I was on Avonex. I suffered in silence as the side effects became more intense. Flu-like symptoms—chills, aches, fever. And that was just the beginning. I also had injection-site reactions, little knots or bruises that would appear a few days post-shot. Some weeks I was OK giving myself the shot, other weeks I hated it. Even though I had gotten out of the trunk of my life, I still had on blinders. I still was struggling to see the road ahead of me because I was too busy looking in the rear-view at my pre-MS life.

In the meantime, I was also becoming a passive patient, not wanting to hear any more bad news. Managing MS was not priority until MS reared its insidious head and made a move for my eyesight.

I woke up for a month and half thinking it was another “cloudy day.” I would roll over on my left side, open my right eye and immediately think it was a gray and cloudy day. Then I would awake fully, get up and be surprised that the sun was shining. It wasn’t until one Saturday that I rolled over and remarked to my husband that it was another cloudy day. He sat up and exclaimed, “Mia, it is crazy bright in here! There is not a cloud in the sky!” I was shocked because from my vantage point, it was totally dark and gray. When my husband jokingly said, “Get your eyes checked,” I immediately sat up and covered my left eye and looked out with the right eye. Everything was totally dark and gray. I then covered my right eye and looked out with my left eye. I lost my breath! The room was bright and cheerful. I could see the reds and browns I used to decorate our bedroom.

I started to panic as I switched from gray tones with my right eye and the beautiful colors I saw with my left eye. Anger and fear slowly washed over my body as I struggled to get out of bed and call my doctor. I did have MS and I was in the midst of an exacerbation. The two-year quiet MS phase was now over.

To read the rest of this post, go to MS Is a Mother….

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Jamia Crockett