My life with multiple sclerosis: zombie walks, shaky limbs
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My life with multiple sclerosis
My life with multiple sclerosis has so far been full of surprises: walking like a zombie with shaky limbs was the fist surprise!
My Facebook posts in 2013 came in short succession. The first one said, “taking a shot of Baileys, my Tuesday’s going to get better.” A few minutes later, the update said, “I think I broke my wrist; heading to the ER now.”
You could say I was asking for it by carrying a laundry basket while wearing roller skates in my house. You could also claim that alcohol, plus roller skates, was an accident waiting to happen. But the thing is that I was comfortable on skates, and I was wearing them around the house as I practiced for a team.
And true to my Irish heritage, I’ve always been able to hold my liquor, so one little shot of Irish cream wasn’t enough to leave me impaired. I couldn’t actually even feel the effects of the alcohol. But a long trip to the emergency room proved I had indeed broken my wrist in several places.
That should have been my first clue that something was wrong.
Shaky limbs: looking for answers
About four months after I recovered from the embarrassingly epic broken wrist, I got this headache. I’ve had headaches all my life so that in itself wasn’t a big deal. Instead, this was the type that sent to me to Google, typing in questions like: “are headaches a symptom of a brain tumor?” I didn’t think it was a brain tumor for real, but I was afraid it could be an aneurysm.
I went to my family doctor twice a week for almost an entire month. He gave me migraine meds; they didn’t work. He gave me narcotics that didn’t touch the pain. It got to the point where everyone in the doctor’s office knew about my headache. My roller derby friends got used to me skipping practice due to my headaches. My husband really hoped I’d get some effective help because I could barely function. My doctor kept insisting my headaches were due to depression, but I pushed for an MRI.
To everyone’s surprise, the MRI showed that I had widespread lesions on the brain, indicating that I had multiple sclerosis. The tale of my life with multiple sclerosis would forever begin with the story of my broken wrist.
Zombie lifestyle: living in denial
People gave me “that look” when they found out I had multiple sclerosis (MS). You know the look: pitying exaggerated with a dose of sympathy. My husband started treating me like I was fragile and liable to break at any moment. And who could blame him for being freaked out? After the first home health visit when I had to get high-dose IV steroids to wipe out my headache, he had to flush out the IV lines and start up the meds each day. That was definitely not what he thought he was signing up for when he vowed to be with me, “in sickness and in health.”
It was awkward being a patient. I didn’t like it. So, I decided I simply wouldn’t be one anymore. The neurologist my doctor referred me to wanted to do more tests because my MRI looked atypical for MS. I agreed to the tests, and he said I definitely had some type of serious neurological disorder, but he wasn’t sure it was really MS.
I figured that meant I didn’t have MS, so I went on my merry way, believing I wasn’t sick at all. I didn’t want all that pity anyway. The last thing I wanted was to be one of those people whose whole identity revolved around being sick.
My life with multiple sclerosis: denial catches up
I was walking with my husband in downtown Dallas, and I kept bumping into him. I simply could not walk in a straight line, no matter how hard I tried. We had been binge-watching “The Walking Dead,” and he laughed that I was walking like a zombie.
I started paying attention to how I walked and noticed it wasn’t just affecting me when I was walking with my husband. In every situation, I was all over the place. When my coworkers and I all had to walk to the conference room, I was like a bowling ball through the crowd, weaving unsteadily and bumping into people. My coworker Brant asked if I had a secret flask of whiskey in my desk. But no, I was totally sober.
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Around this same time, I was also the hardest person to make plans with. Whether we had plans for an afternoon coffee or for going to the bar at night, odds were high that I was gonna cancel. Even if the idea sounded fun at the time I made plans, by the time the day rolled around, I wasn’t able to get past the overwhelming urge to nap. When I called or texted to cancel the plans, I was already in bed, ready to fall asleep. I was acting older than my grandma.
I didn’t know why any of this was happening. I was just so tired and couldn’t stop stumbling like I was perpetually drunk.
I finally figured out what was going on. My arms were twitching on their own when I was under stress, which even my boss noticed. And I had to take constant bathroom breaks because my bladder had seemingly shrunk to the size of a toddler’s.
My boss suggested I take a day off and see someone – I think he meant a psychologist – about my stress. But I went to my doctor, and she referred me for an MRI because it seemed like another MS relapse. I just didn’t recognize it as a relapse. I didn’t have a headache at all like I did during the first relapse. But this time, the IV steroids didn’t help the symptoms go away.
Finding a new normal: my life with multiple sclerosis
My life with multiple sclerosis meant I had to stop wearing high heels altogether because I kept twisting my ankles, and my husband has gotten used to the fact that I need to stop at the restroom at every place we go. And sometimes my arms still shake when I’m under stress.
I don’t go out with friends often and rarely party anymore. My husband and friends have learned that, at any time, I may be hit with the overwhelming need to take a nap, which can change plans at the last minute. I value those who accept me and my illness unconditionally, especially since I often don’t accept it myself.
This continues to affect my work life since stress makes my symptoms worse, and so does a lack of sleep. It’s hard to find a low-stress job that allows for a lot of sleep. The future is uncertain, but one thing is sure: I’m still not ready to see myself as sick.
That includes learning more about the different treatments on offer, like infusion therapy for MS. It’ll be a tough road ahead, but it’s something I know I can get through.
Always curious, never bored. Holly Case is a writer who lives in Fort Worth, Texas. She's always been a little awkward but would rather embrace it than hide it.