This Mum's Experience With Multiple Sclerosis Shows How Progressive and Unpredictable the Disease Is

After seeing others struggle with the disease, Katie admits she didn't initially handle her diagnosis well. "My response was, 'No, no, no. I don't have MS. My mother has MS,'" she said. "I realized I was talking to somebody in a completely different state who has never met my mother. I thought to myself, How would he know? Why would he care [about my mom's diagnosis?] I was like, 'No, I don't have MS.'"

Once the doctor ran through a laundry list of questions — asking whether or not she'd ever had a myriad of rare illnesses like leukemia or syphilis — he encouraged Katie to face the music. "He literally said, 'Well, if it walks like a duck and quacks like a duck, I'm going to say it's probably a duck. Go see a neurologist.'"

A year and a half later, she was officially diagnosed with multiple sclerosis. The next step was figuring out how to manage her disease while being able to care for her family. Although Katie was urged by a second neurologist to enter a clinical trial for a medication, she was skeptical. After all, she had seen how debilitating some of the side effects of MS medications could be.

"I watched my mom and my friend's mom go through their medications," she said. "There are side effects and some of them are really ugly." Rather than committing to medication, Katie opted to ride her symptoms out for the time being without a specific treatment plan.

"Many people — including doctors — were strongly against my decision," explained Katie. "They said I needed to start medication early and that I needed to treat it. I totally understand if that's what what other people want to do! But personally, I felt that given the way my disease was [progressing], the side effects weren't worth the risk at the moment."

Fast forward seven years, and Katie is still managing her MS without a prescription. And though some days were better than others, she feels pretty good on the whole. In fact, through 2017, she was even jogging a few days per week.

"My MS was an annoyance and a frustration," explained Katie. "I had symptoms, but they were on and off. They were tolerable, and they'd last a few days to a week or so. If I rested, ate well, and didn't overexert myself physically — especially in the Texas heat — I felt pretty good. On the days that I felt bad, I would feel better after I relaxed."

As for the symptoms? While they vary from person to person, the list is anything but short. For Katie, skin pain — like the feeling when someone slaps a bad sunburn — joint pain, and numbness in certain parts of her body were among the worst. She also experienced severe skin sensitivity, during which anything that touched her would leave her feeling uncomfortable.

But the list doesn't stop there. Some days, Katie would battle flu-like symptoms — minus the fever — an overwhelming feeling of exhaustion, and a brain-bog she definitely wasn't used to.

"I feel like my mind is a bunch of note cards with information on them," explained Katie. "It's like I dropped them on the floor, and they're all jumbled up. Right now, I might pick one up and know exactly what I want to say, and then other times I'm searching around like, 'Wait, wait. What was that? What was I trying to think?'"

Despite dealing with symptoms for years, Katie found the disease relatively manageable until she had a bad flare-up this Summer. Left with painful sensations and numbness in her legs, it became extremely hard for Katie to walk.

"It was like I had rubber bands attached to my legs that were pulling from behind as I was trying to walk forward," she said. "If you've ever tried to run in the shallow end of a pool, you feel the same resistance. The harder you run, the slower you go, to the point where you can't go anywhere at all."

The flare-up made doing everyday parenting tasks a much larger feat for Katie. And while she was able to take care of her sons — Ryan, 13, and Jeff, 10 — her mobility was becoming more of a challenge.

"Tasks like grocery shopping became very difficult. Just walking from the car in the parking lot to the door was an effort," she said, adding that, "I had to get a cart and hold onto it. It took me a long time. I was walking slow. I wanted to sit down. My flare-up caused my symptoms to really impact my day-to-day life for the first time."

Even cleaning her house was a task that needed to be planned out days in advance with built-in time for rest. "I used to be able to clean my house from top to bottom — vacuum, dust, mop, scrub, everything — and get it done in the day," she said. "Now, if I can't do all of it in one day, I physically can't get it done because it's too taxing. And on days that I'm doing a lot of it, I usually have to rest for the following day or two."