Mom Shares Experience With Multiple Sclerosis

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

Mar 12 2019 by Murphy Moroney

Katie Merrick, a 41-year-old mum of two from Downingtown, PA, has never been a stranger to multiple sclerosis (MS), a progressive autoimmune disease that disables the central nervous system by disrupting the flow of information in the brain. Growing up, her mum was diagnosed with MS and her best friend's mum also struggled with it. But because individuals with a relative who has MS still only have a 3 to 5 percent chance of being diagnosed themselves, Katie didn't think much about it throughout her 20s. Unfortunately, all that changed when her family moved from New Jersey to Texas when she was 33 years old.

"My response was, 'No, no, no. I don't have MS. My mother has MS.'"

"Within two or three days of the movers unpacking our stuff on June 28 or 29 in 2011, I started having pain in my eye that lasted a week or two," Katie told POPSUGAR. "Originally, I thought it was just really bad sinus pressure because I have seasonal allergies. I just thought that I was getting a sinus infection."

Despite having just moved across the country and knowing absolutely no one, Katie found an eye doctor and made an appointment. "I didn't know anybody yet," she explained. "So the kids, of course, were coming with me to the doctor while my husband Jason was working an hour and a half away in Dallas. After the doctor did an eye exam he told me I had optic neuritis."

Optic neuritis — inflammation that can damage the optic nerve — is often linked to MS. After breaking the news to her, the doctor recommended that Katie make an appointment with a neurologist ASAP.

Image Source: Katie Merrick

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."

Image Source: Katie Merrick

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."

"I feel like my mind is a bunch of note cards with information on them. It's like I dropped them on the floor, and they're all jumbled up."

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?'"

Image Source: Katie Merrick

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."

Image Source: Katie Merrick

Planning bigger projects and family trips has also become more of a challenge, especially when Katie and Jason toyed with taking the kids to Disney. "I thought to myself, I don't know if I could make it from the parking lot into the actual amusement park before I'm kind of spent. Then I considered actually walking around for a whole day at Epcot. I thought, Do I really want to spend the money for me? Why don't you guys go and I'll stay at home because I don't think I could do it. I don't think I could expend that amount of energy to do that.

While Katie's symptoms have certainly gotten better ever since her flare-up, they're not completely gone for good. She still experiences numbness in her legs and has difficulty walking long distances, which has gotten her thinking about being put on medication — despite the fact she is allergic to some ingredients in certain medicine — after all.

"Since the flare-up, it's been getting a little better. It's like I take two steps forward and one step back," she explained. "I've felt especially decent since Christmas. Every once in a while I have a bad day. I'm not 100 percent, but I've had mostly decent days lately."

Image Source: Katie Merrick

Want More?