Welcome to This is RRMS, a series spotlighting members of the Bezzy MS community. There’s nothing like hearing and learning from others who’ve walked in your shoes.
One of my first symptoms was what they call urinary frequency. It started when I was 19 and home for the summer from my freshman year of college. I would lie awake at night because I would just keep having to go to the bathroom. The doctor said it was a yeast infection, but that wasn’t the case. It kept happening for about a month or two, and then it gradually got better.
Numbness in both my feet was the next symptom, but they still didn’t know what was wrong. I was told to take 3 ibuprofen three times a day for inflammation and see if it went away.
Then, I got into a night sledding accident. I went to college in Utah, so that was one of the things we did with our time.
The accident wasn’t so serious that I needed to go to the hospital — I just went back to my apartment. I could walk fine, though my neck was sore for a few days. I was lucky my neck was padded with my scarves and a thick coat.
I’d already been experiencing numbness and tingling in both feet for a few months, but after the accident, numbness spread over the left side of my body. That’s when I was referred to a neurologist.
I had an MRI, and it found lesions in my brain and on my spinal column. I was able to get diagnosed right away. That was in 2004, when I was a sophomore in college.
Usually, I wake up early in the morning to get my kids up and ready for school. They’re 10 and 7 now. I fix their breakfast, and it’s always a rush because they never want to get up in the morning.
After that, I’ll get some work done. I’m an administrative assistant helping my husband, who’s in commercial real estate. Then I’ll clean up the house a little and write a little bit if I can.
When my kids come home from school, it’s time for things like homework. We’ll have dinner and then bedtime.
My husband works, and I’m the primary caregiver, so it’s the standard kind of “mom routine,” but with lots of rest breaks worked in.
My kids help me throughout the day with things like emptying the dishwasher or putting clothes in the dryer. My husband’s family also helps when they can.
I used to only get symptoms a few times a month, but I had a relapse 5 years ago that left a brain stem lesion. Now, it’s up and down every day.
Some days, I can walk pretty perfectly, and I can do my 25-step test quickly at the neurologist. But I have a walker because there are also days I struggle to even move. There will be times when most of the day is spent in bed.
You never know when that next pocket of energy is going to come, so some days when I have energy, I’ll just be active most of the day until I have to lie down.
Usually, I’ll do a 15-minute guided meditation on a meditation app about an hour before my kids get home from school.
My favorite meditation has two parts. In the first part, you scan your body from head to toe, acknowledging how you’re feeling and noticing areas of discomfort. The second part is a visualization where you picture each part of your body, from toes up to the head, filling up with warm sunlight.
This kind of visualization is great for me because some progressive muscle relaxation meditations have triggered MS symptoms.
After the meditation, I’ll rest for around 40 minutes. That helps me get through the second half of the day.
The most challenging part is that it changes all the time.
I deal with an ever-changing list of symptoms. Sometimes, I’m dealing with spasticity in the mornings, and my limbs are like a Barbie doll — no bending — and I’ll hobble around. I can use my walker, or sometimes, I just use the walls for support because our house is set up pretty well to do that.
But it’s just so up and down all the time. And it’s emotionally challenging, too.
With a new mobility aid, a rolling walker, I get more support to move when I am gripped in spasticity, but it took some getting used to. Luckily, I had the support from my husband and kids to give me the courage to not worry about what others think and just keep moving.
It can be physical, but it can be mental, too. There’s a lot of anxiety that comes with MS, and things like setting up appointments can be stressful since I may need to cancel or reschedule due to symptoms that come up unexpectedly.
As a mom, there can also be this anxiety about setting up playdates for the kids and becoming friends with the other moms. Having MS on top of that is challenging because I may have to change the plan at the last minute.
One of the most limiting things about my MS is that I had to make the decision to stop driving. Lots of people with MS can’t drive, but for me, it’s that my optic neuritis will start acting up, and the traffic in California is too much for me to handle. It’ll just trigger my symptoms.
Limitations can present mental challenges, so you have to draw from your well. It’s important to acknowledge the support of friends and family and remind yourself of all the ways you still contribute to the good of your family despite these limitations and obstacles.
My kids! They do help me get through the bad days even though they can use a lot of my energy. As they get older, they can take care of themselves in a lot of ways.
They’ll come over and hug me. My son will ask me if I need a back rub, and something about that is so comforting.
Knowing that I have the support of my husband and family definitely helps me get through the bad days.
Don’t let the fear become too much for you. There are so many options, and nobody knows what’s gonna work and what isn’t. You might have a lot of fear of side effects.
I’d like people to know that at infusion centers, there’s a nurse there who will monitor you. If anything happens, the nurse can slowly turn down the rate at which the medication is being infused to help minimize side effects. They have protocols in place to help you.
The same thing goes for other types of medications.
A lot of drug companies are starting programs where there’s a nurse or somebody that you can talk to digitally to report any side effects, work through it, and make sure everything’s going OK. Keep an open conversation with your care provider.
Five years ago, my relapse set me on the path toward advocacy because I couldn’t hide anymore. I was using a cane again. For the first 14 years I had MS, I didn’t talk about it very much, and it was something in the background that I didn’t even think about every day.
After the relapse, I had to think about it every day because I was having symptoms daily. I got on Bezzy MS. (It was MS Buddy back then.) Joining the live chats and keeping in touch with people who had MS helped me a lot.
I adore Kathy, the guide for Bezzy MS. She was really a role model for me because she had kids (they’re in college now), and she had to figure out ways to work when her MS started being a problem. It’s really inspiring how she helps people.
I’ve had lots of meaningful connections through the app and met friends who have helped me get through things.
It’s a good place to start sharing, and you can do it mostly anonymously if you want to, without a lot of pressure. On Bezzy MS, it’s all people with MS, so everybody understands. That’s really nice and really freeing.
I realized that there are experiences I’ve had that can help others. It gives a purpose to the pain and the struggle.
Medically reviewed on September 30, 2023
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