'Fear Is No Longer on Our Radar': What It's Like to Be a Mom With MS

bethany mom with MS and daughter

One day in the fall of 2013, Bethany Fair, 34, was surprised to notice that her handwriting looked different. The Grand Rapids mom also couldn't write as quickly as usual. Thinking her doctor would laugh off her concern, Bethany didn't say anything. Then, weeks later, she woke to a "pins and needles" sensation in her foot. She powered through the discomfort and went to her job as an insurance agent, but the pain only became worse. By the end of the week, Bethany couldn't walk -- or feel anything below her waist.

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After a week of tests in the hospital, Bethany was diagnosed with multiple sclerosis, a disease of the nervous system that disrupts the flow of information between the body and brain. The cause of MS is unknown, but it affects two to three times more women than men.

There is no cure yet for MS. Treatments only manage symptoms, help patients recover faster from attacks, and, hopefully, slow down the progression of the potentially disabling disease.

Dealing with any chronic illness can be a challenge -- and even more so when you're also a parent. Below, in an exclusive to The Stir, Bethany, a single mom to Blithe, 11, explains how MS affects her everyday parenting, her relationship with her daughter, and her outlook on their future.

How did you tell your daughter about your diagnosis?
Blithe and I have always had very open lines of communication, so she knew I thought something was wrong right away. I didn't try to shield her from it, just in case it was something serious. The last thing I wanted to have to do was drop a bombshell on her.

So in the hospital, on the day of my diagnosis, I simply had her sit beside me and I told her I have multiple sclerosis. She said, "What's that?" And I said, "Honestly, I don't know exactly, but we're gonna find out together, okay?"

She was scared at first. All of us were. But as with so many things, knowledge brought calm and understanding, and fear is no longer on our radar.

What are some everyday issues you face because of your MS?
Fatigue is a real bear. I sleep about twice as much now, but often don't feel rested. My feet are in constant pain, even though I never show it. When I was asked what it "felt like" to have MS, my best analogy was and still is this: Imagine walking upstream on a rocky riverbed. Some days, the rocks are jagged; some days they are smooth; but the current and the rocks are always there.

What's your current treatment plan like?
I take a twice-daily capsule. The only side effects are a little nausea and flushing. I actually call them "hot flashes" because it certainly seems more like a hot flash than a simple reddening of the skin. It affects my face, neck, and chest. I take a low-dose aspirin [beforehand] and that seems to eliminate the side effects.

My other medications help with nerve pain and anxiety, which creeps up on me, as you can imagine. I also take a high dose of vitamin D3 and B12. I see my regular doctor every six months now just to touch base and check my white blood cell count to ... make sure it's not too low.

I see my neurologist only once a year now and that's to review the results of my yearly MRI. My last visit showed no new lesions in my brain since last year, so that was very good news!

What have your doctors told you about your prognosis?
We really just need to go with the flow and not have any expectations for the future. My treatment could all of a sudden stop working, or I could end up with a benign case. No one knows. The important thing is to keep MS patients comfortable and happy.

What keeps you so positive?
My attitude is definitely a byproduct of gratefulness. I've found that when you learn to appreciate the things you usually take for granted, you basically push out negativity. It's a process that takes a lot of work and cognitive discipline, but the reward is a peaceful mind. I don't think there's a single person who doesn't want that for themselves.

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Who or what has helped you?
There was a period of two months when I had no insurance. I ended up calling Diplomat Pharmacy [the nation's largest independent specialty pharmacy] and told them my situation, and they worked with my pharmaceutical company to provide me my medication.

Are there any activities you've had to give up or modify so you and Blithe can continue to do them?
We've always been homebodies. We enjoy reading and talking and playing games together. The only thing that has changed at home is my sleep schedule. Blithe [who is 11] is responsible enough and old enough now to keep herself entertained when I need to lay down or take a nap. I always make sure she has snacks and drinks ready if she wants them, and she knows not to play outside without me knowing.

Any advice you can offer for other moms with MS?
I would tell other parents not to underestimate their kids and their resilience. Your kids can be your biggest supporters if you let them. Share your journey with them and don't be afraid to be vulnerable in front of them. Your relationship with them will be stronger than ever.

And Blithe, what advice would you like to share with other kids?
Although it may hit hard at times, it always gets better. You will find out how much everything and everyone in your life matters. Having a parent with MS can have you count your blessings and really see how grateful you are for everything that is happening, like medicine and other treatments your parent can get. So look to the future, and even though sometimes it's tough, you'll get through it.

 

Image courtesy of Diplomat Pharmacy

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