Befriend Your Body - Embracing a positive dialogue

Summary

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The MS Gym Podcast

Episode: Befriend Your Body – Embracing a Positive Dialogue

Co-hosts: Brooke Slick & Jodi Feltham
Guest: Katrine
Date: November 19, 2024

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Overview

This episode centers on the transformative journey of Katrine, a Swedish nurse living with Multiple Sclerosis (MS) for over 20 years. Guided by hosts Brooke and Jodi, Katrine shares how she moved from initial fear, confusion, and frustration to developing a positive, compassionate relationship with her body. The discussion covers the realities of diagnosis, navigating fluctuating symptoms, the significance of lifestyle adaptations, support networks, and the vital importance of viewing one's body as a partner rather than an adversary.

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Key Discussion Points & Insights

1. Katrine’s MS Onset and Diagnosis

• Initial Symptoms & Family Life

  • Katrine’s first symptoms appeared a few months before giving birth: dizziness, nausea, instability ([01:00]).
  • Difficulties in caring for her newborn due to eye movement issues (nystagmus), requiring significant support from her partner and friends ([02:08]).
  • “I couldn’t fixate my sight. I had this nystagmus...I had big problems taking care of her.” – Katrine ([02:11])

• Diagnosis Experience

  • Swedish healthcare process required seeing several specialists, delayed by breastfeeding (couldn’t do MRI with contrast) ([03:12]).
  • Received diagnosis over the phone, with poor delivery:

    “As I see your nurse, I can tell you this, it might be MS. SLA or ALS.” – Katrine’s doctor ([03:51])

  • Initial relief it was not ALS, aided by her ex-husband’s perspective as a physician ([04:27]).

2. Navigating Treatment and Lifestyle Choices

• Medication Journey

  • Initial lack of prompt treatment and confusion, even as a nurse married to a doctor ([05:52]).
  • Started medications only after a third relapse; experienced inefficient support ([05:51]).
  • Final disease-modifying therapy: Ocrevus, which she stopped almost two years prior as MRI scans stabilized ([08:45]).

• Discovering Self-care Tools

  • Coincidentally attended yoga for exhaustion, discovering the power of deep relaxation to counteract MS fatigue:

    “I could do that for 20 minutes and then after that I would feel as good as I did in the morning...had some energy again for socializing.” – Katrine ([07:43])

• Diet and Protocols

  • Adopted the Wahls Protocol and continues to follow it ([14:13]).

3. Shifting Careers and Adapting Work

• Katrine now works mostly from home, providing counseling and support by phone for a Swedish GP practice, accommodating her mobility challenges ([10:08], [13:05]).
• Transition intensified after relapses and the pandemic, moving to 65% of a full-time schedule ([12:56], [13:05]).

4. Community, Support, and Empowerment

• Felt isolated locally, but found vital support through The MS Gym and online groups since 2018 ([14:13]).
• Recently helped form a Swedish “buddy group” of local women with MS for in-person connection:

  “That has been great for me...we’re really tight and connected.” – Katrine ([15:18])

• Strong support from friends and her daughter, who has known Katrine’s diagnosis her entire life ([21:31], [20:42]).

5. Victories and Setting New Goals

• Celebrates “small” but meaningful achievements:

  • Traveling within Sweden, especially trips to Gotland ([17:19])
  • Skiing again after setbacks:

    “Last year I ski five times and the year before I just, I just fell and fail. So. Yeah. Small things or big?” – Katrine ([18:16])

• Goals:

  • Prioritizing continued mobility: “Keep on walking. That’s a goal.” ([24:04])
  • Finds value in shorter, unplanned trips, focusing on present enjoyment and company rather than distance ([24:25]).

6. Philosophy: Befriending the Body

• Sharp advice for the newly diagnosed:

  “Try to create a relationship with your body...show respect and be grateful...try to find something that you’re grateful about.” – Katrine ([25:28])

• Emphasizes daily dialogue and appreciation, even on challenging days, drawing from yoga and The MS Gym philosophies ([25:28]–[26:45]).

  “I think recognizing that our body is not our enemy, that our body is our friend...we need to work with our body instead of being angry at it.” – Jodi ([26:45])

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Notable Quotes & Memorable Moments

• On Diagnosis Delivery:

  “As I see your nurse, I can tell you this, it might be MS. SLA or ALS.”
  – Katrine reporting her doctor’s phone call ([03:51])

• On Gaining Control Over Fatigue:

  “I could do that for 20 minutes and then after that I would feel as good as I did in the morning.”
  – Katrine, on deep relaxation yoga ([07:43])

• On Community:

  “Since 2018...the support was really huge from the MSG and I felt safe and at the right place and yeah, felt so good with it all the time.”
  – Katrine ([14:13])

• On Victories:

  “I kind of make everything small. Feels big to me.”
  – Katrine, on adapting travel ([17:34])

• On Living with MS:

  “Try to create a relationship with your body...and to have a dialogue and to show respect and to be grateful from the last 24 hours...”
  – Katrine ([25:28])

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Important Timestamps

• Diagnosis and Initial Struggles: 01:00 – 06:57
• Treatment Path & Self-Care Discovery: 07:00 – 09:44
• Career Adaptations: 09:59 – 13:10
• Finding Support & Building Community: 14:13 – 16:36
• Achievements & Setting Goals: 17:19 – 24:25
• Advice for the Newly Diagnosed & Philosophy: 25:23 – 27:20

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Conclusion

This episode powerfully illustrates Katrine’s journey of self-compassion and adaptability with MS. She highlights the challenges and victories—both big and small—along the way, offers actionable advice about cultivating an appreciative relationship with one’s body, and showcases the profound value of community and connection. Katrine’s story serves as both inspiration and a practical guide for living by design, not just by diagnosis.

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Transcript

[A]

Whether you've been diagnosed with Ms. For two weeks or even two decades, it's common to feel a range of emotions from fear, anger, and frustration. Today's podcast guest shares how she has learned to view her body as an ally, not as an enemy. Hello, Mississippi family. So glad you can join us for another podcast episode. Today we are traveling across many oceans to talk with Katrine, and she's going to share all about her Ms. Journey and the challenges she faces in her daily life. So, Katrine, thank you so much for joining us today.

[B]

Thank you.

[A]

So, Katrine, I, I mentioned that you were overseas. Where are you actually broadcasting from?

[B]

I'm broadcasting from Uppsala, which is slightly north and into the center from Stockholm.

[A]

So, Katrine, how did Ms. Show up in your life? What were kind of your beginning symptoms?

[B]

Two and a half, three months before I gave birth to my daughter. And then all of a sudden, one day, a winter day, we went off to do some skiing on a lake and we brought her with us. And it was really cold and in the car I started to feel dizzy and nauseous. And when I came out of the car, I felt more instability and strange feelings, so we had to turn back.

[A]

And did, did it develop more from, from that point? Was it just one day and then you went to your doctor? Did the symptoms keep progressing more and more?

[B]

The symptoms stayed, but they didn't progress that much. But. So I'm sort of got some numb feelings feeling in one half of my tongue and, and my cheek, so a bit here and there, not that much. But I had big problems taking care of my daughter. I couldn't fixate my sight. I had this nystagmus.

[A]

Oh, your eyes were going back and forth?

[B]

Yeah, I couldn't focus on her, so I had big problems taking care of her. So I slept on a mattress on the floor. And my husband at the moment, then he brought her into me at nighttime to breastfeed, couldn't change diapers and things like that, so. And he was really busy with a new job, so we had friends coming and assisting us with her.

[C]

Okay.

[B]

So that stay kept on for a week, I think, and I had to go to go to the hospital.

[A]

And was it just a doctor you saw? You saw a neurologist or, or how did, how, how does healthcare work where you are? Does do things progress quickly or do you have to wait long times to see doctors?

[B]

As I had this dizziness and these strange sensations, I came to. What do you say, at ear, nose and throat, doctor?

[C]

Okay. Yep.

[B]

And they investigated my My dizziness, my vertigo.

[C]

Okay.

[B]

And from that it was sent a referral to neuro. Neurologist. And they sessed me a couple of weeks further on, I think with lumber punction. And they couldn't do the MRI with.

[A]

With the contrast.

[B]

With the contrast because I was breastfeeding. So the diagnosis was a bit delayed. They saw from the lumbar punction that it's probably Ms. Actually, they called me on the phone and said, as I see your nurse, I can tell you this, it might be Ms. SLA or als.

[A]

That's very poor patient care. My goodness.

[B]

And I was home with my daughter on my own, and I. Yeah, I got really upset. I just decided I didn't want to go to the neurologist. I said, I just understand. Yeah, understand.

[A]

At that point, how much did you know about ms? Like, were there people that you knew in the area or was it the idea of Ms. Kind of foreign to you?

[B]

As I'm a nurse a little bit about Ms. And I've been working in home care with some patients with Ms. A long time ago. So I had these slight ideas about it. Yeah. Then I got the diagnosis, Mississippi. And I must say that I was relieved. It wasn't a list. So I was kind of happy in one way. My husband's doctor, he was a dog. He's. He is my ex husband now. He's a doctor. So he. He told me a little bit about colleagues with Ms. And, you know, you can be both this and that and. Yeah. So it was kind of normalized a little bit. I wasn't terrified at that point.

[A]

Did the doctor. Did the neurologist talk about medication or did you decide to maybe do some lifestyle changes or what. What path did you go down to in regards to treatment?

[B]

They did. They put. They gave me the diagnosis from the second relapse and then the MRI with contrast, and then that doctor was a bit slow on medicating.

[C]

Okay.

[B]

I've heard that from other doctors after that. So they were kind of surprised. I didn't get medication from the beginning, and the support was very poor. And even I'm a nurse and my husband's a doctor. We were sort of confused and frustrated in that situation. We had lots of problems due to not understanding each other. I had, as I understand now, I had an activity, so I was really, really tired. Just my arms and legs are not connected to the torso. It's like I couldn't understand and he couldn't understand why I was so tired. And there were lots of. I was terrible. So the medication came after maybe third relapse or something, but lifestyle haven't said anything about that.

[A]

Did you pursue anything on your own? Did you, were you already eating like a, like a clean like a whole foods diet? Like did you make any changes yourself in regards to that?

[B]

No, not with diet that I, I had no thoughts about. But by coincidence I started a yoga course with a friend when my, my daughter was quite little and I was really tired and my friend was really tired too. So it was like a really nice relaxing thing to do and I learned so much from that and that I applied just like trying to find out. I started to do things at home that I've learned. I gave it to myself what my teacher used to teach us and it worked on the fatigue really good. So my first experience that I can control that with deep relaxation technique. So I could sort of. Sometimes when we were supposed to have a dinner, people were coming and I felt like really exhausted. I'd do that for 20 minutes and then after that I would feel as good as I did in the morning and then I could sort of start all over and had some energy again for socializing.

[A]

When you finally got medication, what medication did you decide on and are you still taking disease modifying therapy now?

[B]

I had two injections from the beginning. I had one and then I got a relapse. I changed to next and then I got to relapse and then I were offered two kinds of infusions I think and the last one, I think the English. Your name is Okravus?

[A]

Yeah, Okrabus. Yeah, very common.

[B]

So that was the last one and I did that until probably almost two years ago now. I stopped it. I went to the neurologist and they did the annual mri and most of the times there was a new spot or two even I was on the medication. And then I felt like my infections were so long and I lost so much of my strength, my Ms. Gym strength. So at certain point I just asked him, I'm thinking I would like to stop it. And he said yeah, we can put it on hold. He said so that's what we still think putting it on home. That's what we say about it. But I haven't had it since more than one and a half year anyway. And the last MRI were without any new changes.

[A]

Oh, that's great. So you were saying that your initial symptoms were when your daughter was very young. What you said something about you were doing nursing. Is that what you're still involved in now?

[B]

Yes, I am. I have, I'm lucky. So the last years I've been working on a GP place.

[C]

Okay.

[B]

Yeah. And I've been sitting a lot. We do a lot of telephone work with patients. That's the way we, they enter to into nursing, into the care through telephone. And I've been working lots of of time in different other situations, canceling on phone. So that was really helpful because then I could turn in my, my work into more and more only telephone canceling.

[C]

Okay.

[B]

So that is what I do. I'm not walking around because I'm not walking very very well so I can work and sit and talk on the phone and then I have longer conversations with patients with psychiatric issues.

[C]

Okay.

[B]

And psychological issues.

[C]

Okay.

[B]

So these two things I do.

[A]

At what point did you transition from you know, perhaps traditional nursing like in person and doing like hands on patient care to doing more of the phone calls and you know, working with patients that way? Was, was there a long like span of time between that transition?

[B]

For a long time I worked quite like others. I didn't have a lot of problems moving around. But after divorce and all the things that you put into the stress caused the relapse that made my right leg not working so well. But I still worked until I would say the pandemic. That was a terrible time for me. So from then I went down to zero. I was pretty strong before and after that I got back problems from sitting working and so I had back pain and I couldn't do the MSG and I lost everything and started all over four years ago. And from that time I haven't been moving very well but I've been at work and the, the deal now is that I'm at home three days and I'm at work two days.

[A]

Okay, so you still, you still work fairly full time schedule and for five days?

[B]

Yeah, five days. But I have like now I have a permanent sick leave or whatever you call it on 25%.

[C]

Okay.

[B]

So I'm working 65% of a 40 hour week.

[C]

Okay.

[A]

So you've, you've mentioned the MSGYM a few times. How did you go about finding the Ms. Gym?

[B]

During being on medication I got this very subtle infection. I wouldn't, we couldn't understand what it was. They said virus and virus and virus many, many times. But I as a nurse know that how viruses work and for me it didn't look like a virus. So at that point I had fevers on and off, like slight fever, but you know, slight fever knocks you out.

[A]

Sure.

[B]

So I was at home. I was at work I was tired, I was lying on the couch, I was trying to. And then I was at home a lot and then I was like on the Internet and I found the msg. That was 2018, so I found that and at the same time I found the waltz protocol.

[A]

Are you still following kind of the walls protocol yourself now?

[B]

Yes, I do.

[C]

You are. Okay.

[A]

So did you have. Is there like support groups there that you're part of for Ms. Or do you have any in person community support?

[B]

No, I don't. I've been not in a very. In a big need of that until the last five years or something. I, I felt since 2018 that the support was really huge from the MSG and I felt safe and at the right place and yeah, felt so good with it all the time. But then now I've created a body group since a year with the help of the msg. Yeah.

[A]

Amazing. And it are people in vicinity view or just in similar time zones for you to, to meet.

[B]

Quite close in Sweden.

[A]

Oh, okay.

[B]

Yeah. One in Stockholm and one little bit up north. So that has been great for me. It's. Yeah, it's been wonderful. And we've been like chatting since a little bit more than half a year I think and we're really tight and connected so within a little bit more than a week we're going to meet the first time.

[A]

Oh, that's exciting. Wow.

[B]

The train up north to Sila who lives in the countryside in house and she's a yoga teacher and yeah, we all into yoga bit and you know, yeah, it feels so nice and so easy and you know, we know how it is. We do whatever we be like.

[A]

That's awesome. I, I hope that after your, your meeting that you'll post some pictures in the members only Facebook groups. That'll be great to see you with all your friends. For people that are paid members, we have a Facebook community called the Members only Corner. So I went in there and I was, I typed in your name and I was looking at some of the posts that, that you've put up over the years.

[B]

Yeah.

[A]

And I'm not sure, I think some of them might have been like 2019, I think somewhere like 2021, 2023. And you put up posts about you doing walks and doing dancing and going swimming and even doing some skiing and horseback riding and travel. Like I was amazed when I typed your name in as a search. There's so many amazing things that you've done and you've shared so many stories with the Ms. Gym Community about some of the experiences you've had. What would you say is kind of been your biggest victory, your biggest highlight?

[B]

Well, one is that I'm here now four years later since the pandemic, actually much stronger. And well, other things is like being able to travel a little bit in Sweden again. I've been traveling a lot before far away and now I'm beginning again. I'm sort of reinventing the traveling in small short ones and really, really nice. I kind of make everything small. Feels big to me. So I've been three times to an island called Gotland outside of Stockholm and that is a victory, a really big victory for me to be able to do that, to arrange it, to ask for help and to. Yeah, to plan it and do it. So that's a victory. And the skis was a bit. Was a victory. Last year I ski five times and the year before I just, I just fell and fail. So. Yeah. Small things or big?

[A]

Well, big. I think they're big things.

[B]

Yeah.

[A]

For you to have the confidence, like you said, there might be smaller travel trips, but for you to organize it and get up there and do it, that's a, That's a big thing. It's not, it's. It's much different when someone who's completely able bodied and have no. Have. Has no mobility challenges to travel. But it takes a lot of strength and courage to do it. When you know that there's challenges ahead of you, that it's not quite so easy and that you might need some accommodations or you might need some help. I saw that one of, one of your travel things you had posted about visiting your daughter. Is your daughter far from you?

[B]

She was in Berlin at that point.

[C]

Okay.

[B]

In Germany. Yeah. That was a, that was good. She. She's a good sport for me. So she knows and we can sort of solve things together.

[C]

Okay.

[B]

It was tough to be in, in a town. It's not ideal for me. Too much people and pavement and things like that. I was struggling a lot, but it was good fun. I had some, some small like experiences of, you know, former traveling. The feeling that you're somewhere completely elsewhere. And yeah, so it was good. It was good, but it took a lot of energy.

[A]

I'm sure it did. I'm sure because Trevor talks all the time about how, you know, our threat back at like all these new things all around us and if you're in a different country and all this stimulus, all the noises, all the people, it can be very overwhelming to our bodies. So I'm Sure. That would. You'd be very tired just from all of the things in the environment around you, even if you didn't do that much walking or moving, just. Just the external stimulus there.

[B]

Sure. Yeah, for sure.

[A]

How. How old is your daughter now?

[B]

She's 23.

[C]

Okay.

[B]

So her age is my. My time of the disease.

[A]

So. So her whole life she's known you with this Ms. Diagnosis.

[B]

Yeah. Even though for a long time you couldn't see.

[A]

Yeah. Okay, so we talked about the support community that you have this buddy group that you're going to meet with. How about other family members or do you have local friends that you've shared your diagnosis with? Does work. Obviously at this point, work does know about your disease, but do you have people in closer proximity to you as a support system?

[B]

Yeah, I. I would call my friends my support system. And they all know. And they all know me and what I need. And so the ferns are really important, and my daughter is really important for me. We share lots of interests and things like that. So with her, I feel comfortable and safe to do things, and we always sort it out one way or the other. Yeah. So I'm divorced, so I'm living on my own. Yeah, that is a question of support. Also, right now I'm just starting to feel like things like cleaning at home is a really big work, and that eats up the energy from other things I need to do. I need to work. I need to do them as gym to work. I need to live my life too. So. Yeah, so these are questions I ask for help quite a bit with small things or things that come up once, but things that repeatedly is needed to be done. That's the problem.

[A]

It sounds like your. Your schedule is quite busy with your. Between your work and. And trying to keep up your exercise and your movement.

[B]

Yeah, yeah, it's.

[A]

I'm sure it's a. It's a tricky balance trying to. To have the energy to do the things that you need to do and then also to figure out how to get the. The other things done right.

[C]

You.

[A]

You prioritize certain things, and then there's kind of like that. That gap where there's things like cleaning and maybe even doing, you know, cooking and stuff like that. It can be. Require a lot more energy than you have.

[B]

Yeah.

[A]

So you mentioned about traveling and how you enjoy. You're gonna go see this buddy group. What. What do you think would. Is like a. Maybe in a few years or like. Like a big, big goal for you, something that you would love to accomplish or Like a place you want to go or a physical challenge that you want to meet. What. What do you think that would be? Like, what would be your goals?

[B]

I'm so conflicted in this. The goals. Because I have small goals. Go goals now. I don't know. Of course I like goalist. Keep on walking. That's a goal.

[A]

It's a fantastic goal for sure.

[B]

Yeah. And to be able to walk a little bit further, to be able to walk in the woods a little bit more. But traveling, I've done the big trips and I'm so happy with the shorter ones now.

[C]

Okay.

[B]

And it's not about how far, it's about who you are with. I prefer to go to places where I can hang around and that we build each day. That's the kind of traveling I've been doing. Like just landing somewhere and then sort of inventing the day at the same time and to. To not plan too much. And I think that is what I do still, and I enjoy it. That's my kind of traveling. That's good.

[A]

And I think having smaller goals, like, life does look different with ms, with. With disability. So I think it's important to have things to look forward to and, and things to work towards. So you've had Ms. For 20 years now. What would you say to someone who's maybe newly diagnosed? Like, would you have any advice?

[B]

A couple of things that I would like to talk to about.

[C]

Okay.

[B]

I've learned comes from both yoga and Ms. Gym. They all sort of connected. That's about trying to create a relationship with your body and to try to talk to your body every day and to sort of have a dialogue and to show respect and to be grateful from the last 24 hours that you actually, you know, that you. You have a dialogue with your body, that you're doing a good thing. I'm very happy that we could do this. And. And I will try to focus. For me, it's very helpful to. To create the body as another person and to. To have this feeling of looking at the body and encouraging the body and be grateful to the body what it did, even though it's been bad days, that there are small things that you can see that you can appreciate anyway. And that is the way of, I think, to not get angry with yourself, to attack and, you know, your body, which is like contra productive. And to every day just try to find something that you're grateful about.

[A]

I think recognizing that our body is not our enemy, that our body is our friend, and that we need to work with our body instead of being angry at it. I think that is such. I think that's such great advice. And it. It definitely takes time because I know that it can be so easy to get angry. I get angry at my legs for not working, but realizing that my body is. Is trying to help me in whatever.

[B]

Way, doing it best. And you're trying to support and to have that dialogue. I will try my best to give the possibilities to do your thing.

[A]

Well, time has gone by so quickly. So, Catherine, thank you so much for chatting with me today. I. I really look forward to seeing some pictures with you friends. I think that will be fantastic. And, and I love so much that the Ms. Gym is such an international community and it really does bond us together. Like you said, our. Our. Our diagnosis might be the same, but our journeys are so different. But it's wonderful feeling connected to other people that actually understand some of the challenges that we go through every day.

[C]

So.

[A]

So, Katherine, thank you so much for joining me on the podcast today.

[B]

Thank you.

[A]

Be sure to check out our show notes to learn more about this episode and how to connect with our online community.