How I Learned To Listen to My Body With MS | MyMSTeam

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How I Learned To Listen to My Body With MS

Written by Kelly Crumrin
Posted on March 25, 2024

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Transcript

00:00:00:00 - 00:00:24:08
Dani
Before the day I was diagnosed, I had heard the term “multiple sclerosis,” but I had no idea what it was or what it meant. In the summer of 2021, I had just released an EP of music and I was performing a lot with my band and doing a lot of interviews, and I started to notice that my speech was evolving.

00:00:24:10 - 00:00:47:05
Dani
It was a jazz bar in Detroit. We had had a short rehearsal beforehand and everything was kind of fine, but then when we got up there and the lights were on me, all of a sudden I couldn’t remember how to sing. There were sounds coming out of my mouth, but it wasn’t the notes that I knew I should be singing.

00:00:50:11 - 00:01:12:22
Dani
I really had to rely on my band to really just kind of play around what was happening to me onstage, so it was really scary. I went to the ER, and they diagnosed me with remitting-relapsing ms before I even got back to my bed from my MRI. It was a lot. I was there for like six days,

00:01:12:22 - 00:01:35:05
Dani
I think. They got to know me pretty well. Now, about three years later, I’ve gotten into a level of normalcy, but I think it’s probably not completely truthful to say that I figured it out because I don’t think you ever really do. I think MS is just kind of a series of questions, and not all of them get answered.

00:01:35:11 - 00:02:05:16
Dani
It gets really just trying to listen to my body and see what I can do in each moment to make myself feel better. The times when I find myself not listening to my body, then it starts to speak louder. There’s times when, like, by the end of the day, I just have zero energy left. I’m running on fumes, but I think it’s all learning to set boundaries, to know when to say no or when to say maybe instead of just kind of powering through.

00:02:05:18 - 00:02:35:07
Dani
Although performing after MS was more difficult as time went on, I put my feelings into words and songs about what my experience was having MS ... was a way for me to kind of process it, and it’s become more of a private tool of resilience versus a way to kind of touch others. I still want to do that, but I know that taking care of myself first is the important factor when it comes to living a good life, so.

00:02:35:07 - 00:02:48:12
Dani
My name is Dani Darling, and I live with relapsing-remitting multiple sclerosis.

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Once you find out you have multiple sclerosis (MS), there’s a major learning curve. According to Dani Darling, one of the most important lessons she’s learned is how to listen to her body. “It’s super important to listen to my body, because the times when I find myself not listening to my body, then it starts to speak louder to me,” she said. “There’s times when, by the end of the day, I just have zero energy left, and I’m running on fumes.”

Dani is a singer, guitarist, songwriter, and producer who performs with her indie soul band, Dani Darling. She is also an identical triplet, a youth mentor, and a single mother. Dani was diagnosed with MS in the summer of 2021, just after releasing her Detroit Music Award-nominated EP, “The Future,” and succumbing to symptoms onstage. Years later, Dani is still navigating life with MS with treatment, her music, and support from her loved ones and community.

Dani explained why setting boundaries is key. “Learning to set boundaries, to know when to say no or when to say maybe instead of just kind of powering through,” she said. “There’s times when I realize a couple hours into the day that today I should have just taken more time instead of powering through things. Finding out that I had MS was kind of the end of the power-through.”

Lessons as complex as these are ongoing, she pointed out. “I think it’s through trial and error that you realize about listening to your body and taking the steps that are necessary.”

Dani doesn’t claim to have mastered every aspect of her MS care. “I’ve gotten into a level of normalcy, but it’s not completely truthful to say that I’m OK, that I’ve figured it out,” Dani admitted. “I don’t think you ever really do. MS is kind of a series of questions, and not all of them ever get answered. I think it’s just taking it one day at a time and trying to listen to my body and see what I can do in each moment to make myself feel better.”

One more lesson Dani talked about was learning to rely on community and ask for help. “Before I got MS, I wasn’t the type of person to ask for help. I’d try to power through it and do it alone,” she said. “Now there’s more of an incentive to talk about what’s going on and ask for help. If you do ask for it, people are there for you.”

Read tips from MyMSTeam members on how to stay positive and feel connected.

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On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with MS.

Have you had to learn to listen to your body since being diagnosed with MS? How has learning to listen benefited you? Share your experience in the comments below, or start a conversation by posting on your Activities page.

More Videos

Dani works as the music program coordinator at a youth center. Watch this video to see how she finds support and community while managing multiple sclerosis in the workplace.

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Dani had just started a new job when she was diagnosed with multiple sclerosis: “I had to advocate for myself for my treatment because I had just started working. So even though my doctors had recommended a certain infusion, my insurance denied it at first.”

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Posted on March 25, 2024
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Kelly Crumrin is a senior editor at MyHealthTeam and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.

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