S8E7: Working with multiple sclerosis: fatigue, disclosure and finding balance

Heather Carrasco (00:00)

After being diagnosed, I realized I can throttle back and maybe be more effective and efficient rather than having to work so many hours. So that was one thing I had throttled back in a lot of ways. So work would be one aspect of it and how I show up socially, maybe before I was more of a people pleaser and so always trying to just show up for others and not show up for myself. So for me, it’s been an opportunity to put myself in the front seat more than I used to in the past.

 

Overcoming MS (01:14)

Welcome to the latest edition of Living Well With MS. Joining me on this edition is Heather Carrasco. And Heather is someone who’s got MS and is also a follower of OMS. So it’d be interesting to hear her take on how she’s found that and discussion about her MS journey. So to start off with Heather, could you introduce yourself and also tell us about your MS diagnosis?

 

Heather Carrasco (01:37)

First I to say thank you for the opportunity. And as you mentioned, my name is Heather Carrasco. I’m from Los Angeles, California in the United States. I am also the ambassador for the LA Circle and I also volunteer for the communications advisory committee. And I was diagnosed with relapsing remitting MS in 2023, but I was likely to have had it since 2006.

 

Overcoming MS (02:03)

I think that’s quite common, isn’t it? So what resources were you offered and what resources helped you when you were newly diagnosed?

 

Heather Carrasco (02:12)

When I was first diagnosed, what helped initially was the resources and support from my family. For having them to show up and be there for me was a tremendous support. I am very stoic and independent, so being able to ask for help. And I didn’t even have to ask for help, people just showed up. So that was the first thing. The second thing was taking time off from work. And that was a challenge too, because I just started at the company I was at.

So I didn’t have family medical leave where it’s offered time off. I had some sick time, but I didn’t have a lot. But so taking time off that helped learning to learn about MS. I didn’t really know what multiple sclerosis was. I only knew one person who had it. So really trying to take time to understand what does it mean to have this diagnosis. And then the treatment I was offered was  Rituxan and that was the first thing that I was offered and I just went with it. I thought, this sounds like a really good treatment. My neurologist recommended it and then I just jumped on it and thought, let’s just do it. I just want to move forward and continue to just almost live life without really seeing that I have MS.

 

Overcoming MS (03:31)

And just as an aside, because I’m from the UK, so we have quite a different healthcare system. So is all the treatment typically covered in normal health insurance?

 

Heather Carrasco (03:37)

Right. It depends, it depends a lot. It depends on the healthcare coverage that we have. So I have excellent healthcare through my employer, but my previous employer, I did not have great health insurance. And I truly believe that because my health insurance wasn’t great, I wasn’t diagnosed a lot sooner, even as soon as 2021.

 

Overcoming MS (04:11)

Right, so did you have challenges with being diagnosed when in your situation?

 

Heather Carrasco (04:19)

In 2023, no, I didn’t. think I went to a great hospital. Everything was aligned to get diagnosed, but in 2021, I didn’t. I kept going back to the doctors and telling them something was wrong, and they just kept giving me eye drops. And I would tell them, I’m seeing floaters, I see these squiggly lines, I just don’t feel the same. And they kept saying,

 There’s nothing we can do. But I went and paid privately and did see an ophthalmologist and they did some tests and said, okay, we think that it could be multiple sclerosis. We want you to come back. But at that time I just graduated college. I didn’t have great health insurance already. I would have had to pay for it privately to even do an MRI. So I just felt like it was very expensive and the symptoms did subside. But I think that that’s when I was starting to have a lesion at that time. And I didn’t, my original healthcare that I was assigned to did not diagnose me then.

 

Overcoming MS (05:14)

Would you have had a scenario where if you’d been diagnosed, if you paid for a private diagnosis, that then when you got healthcare, which was much better healthcare, it would have been a pre-existing condition and then might have even affect that?

 

Heather Carrasco (05:46)

It could have been, I do believe that that would have impacted it. I am curious to see because we did change the law and I don’t know if it’s just in California, but where we don’t have preexisting health conditions anymore, but that could have impacted my diagnosis as well or affected treatment options if I was diagnosed a lot earlier.

 

Overcoming MS (06:09)

And how do you tell other people? How do you explain your diagnosis to others and decide who you want to tell and how you tell them?

 

Heather Carrasco (06:18)

So for outside of work, I’m very open book and I’m honest about it. And I realized that I have to simplify terms and really break down what does multiple sclerosis mean because for me, I’ve been immersed in this arena for a couple years now from, so for me, I can just say, well, it’s multiple sclerosis. But when I meet people who are unfamiliar with it, and I really have to be able to lay it out. Like what do the symptoms look like and how it does show up different for a lot of people and why it does show up differently. And I do often hear from people that they know somebody and the first thing that I usually tell, they’ll tell me is, I know somebody, but they look like they’re fine. So I’ll have to go back and tell them it’s an invisible disease so they may look like they’re fine and they’re masking it and you may not realize what they’re really struggling with. And then another thing that I have to explain too or I’ve been trying really hard to explain is what does fatigue look like because people will often say, well I’m tired too and then I have to tell them no what does that mean? So I heard this one doctor say to describe fatigue is fatigue for MS looks like if you’re swimming with a fur coat on. And I thought that is the perfect way to describe it. Or you feel like you have a lead blanket on you and that is what fatigue looks like for me. And it’s not that I was up late at night or didn’t get a lot of sleep the night before.

 

Overcoming MS (07:58)

Yeah, no, I’ve not found any perfect way of describing fatigue, even to my wife or even on my doctor or anyone. But if someone’s who’s got MS, then they know straight away. So I’ve got real fatigue. there’s like all sorts of different things and causes. It could be the heat.

 

Heather Carrasco (08:04)

Yes. Right.

 

Overcoming MS (08:19)

It could be anything. could be so many factors that could have caused it. So you came across Overcoming MS. So how did you discover Overcoming MS?

 

Heather Carrasco (08:28)

Well, it’s a very interesting story. Last year, I had this epiphany of, want to do things that I’ve always wanted to do. And I kind of experienced that every five years where it’s okay, what can I do differently now that I’ve always wanted to do? And I was looking into getting my pilot’s license. And when I was going through that process, I realized that I may encounter certain barriers because of my medical condition. And when I was researching online, how do I mitigate that? I came across a YouTube video of woman describing the Overcoming MS handbook and how it helped manage her symptoms and that she didn’t take any treatment in terms of infusions or shots. It was just following the overcoming MS guidelines. And that opened the door for me to realize, what’s this program? And I started following it. And then I heard about the retreat and I thought, got it. I can’t wait to do and sign up for this MS retreat. But that’s how I got introduced to it.

 

Overcoming MS (09:37)

So you came all the way over to the UK, didn’t you, for a retreat. So could you share your experience of attending an MS retreat and what you found most helpful about attending a retreat?

 

Heather Carrasco (09:51)

I will have to describe to you the moment that I saw that there is the MS retreat and the UK and I said, I can’t wait to do this. This is exactly what I’ve been looking for because at that point when I got released that it’s coming out, it’s a point in my life where I was past the denial point. I realized I needed a community and I’ve always wanted to travel to Europe. So all these checkboxes were marked and ready to go. And I went and I brought my mother-in-law with me because she’s been mostly a primary caregiver for me. She comes to a lot of my appointments. And when I was hospitalized, being first diagnosed, she was there every day with me. So I brought her with me. And the retreat itself was an immersive experience. I got that community that I was looking for. I met people there that I feel like are gonna be my friends for the rest of my life. I got to learn how to make sustainable changes for my future health. And then the food, everyone always talks about how great the food is and that is absolutely correct because I did get the cookbook, the overcoming Emma’s cookbook.

And I thought, I don’t know if I could make these recipes. But then when I actually went to the retreat and realized, it is very simple to make these recipes and it’s very delicious. And so that was inspiring as well.

 

Overcoming MS (11:26)

Do you want to live well with MS? Join the Overcoming MS community in the LiveWell Hub. It’s your place to get support, find connections, and feel motivated to make positive lifestyle choices. Download the LiveWell Hub in your app store today or visit hub.overcomingms.org to join. We hope to see you there.

 

Overcoming MS (11:50)

And so how has MS changed your day-to-day life, your routines? Because obviously you’ve changed your diet, but how has it changed your day-to-day routine, having MS?

 

Heather Carrasco (12:02)

So before being diagnosed, I would say that I was a workaholic and that I took pride in working a lot of hours. And then after being diagnosed, I realized I can throttle back and maybe be more effective and efficient rather than having to work so many hours. So that was one thing I had throttled back in a lot of ways. So work would be one aspect of it and how I show up socially, maybe before I was more of a people pleaser and so always trying to just show up for others and not show up for myself. So for me, it’s been an opportunity to put myself in the front seat more than I used to in the past and then I take, I rest a lot more. I would say I napped a lot before too, but then I just really listen to myself more than I had in the past and listen to my body where I can feel a flare up or I feel that I’m more tired than before. I think I would just probably be ready to collapse in terms of being tired. And now I’m listening a little bit more so I can see ahead and feel like I’m being more thoughtful and intentional in that way.

 

Overcoming MS (13:24)

And if you do get tougher times or you do have flare ups, how do you sort of stay motivated and continue through those?

 

Heather Carrasco (13:32)

For me, when I have flare ups, I’ll feel, I feel comfortable if I’m at work to just call off work. My work is very understanding and they know what’s going on and very mindful of that. So I’ll just, I just rest. I think that’s one big thing too, but from the emotional aspect, I just remind myself that this is just a small time where I’m feeling this way and it won’t be forever.

I remember when I was first diagnosed when I was in the ER, they actually thought I had a mini stroke and they were going to test to see what long-term damage my memory experienced. And I remember for two and a half hours thinking that I had a bad, a mini stroke and thinking about the impact my brain was going to experience from this. so while it’s never good to always play

 

this scenario in your mind of it could be worse, but, and for a brief moment, I really did think it was going to be worse. And not to say, you know, they’re, two different diagnoses or two different ways to look at it, but I just taught myself like, okay, it, it could have been worse, but you’re here now and you just have to get through this moment of time.

 

Overcoming MS (14:38)

And sort of talking specific about lifestyle. OMS includes drug therapy as well as is accepted part of that. in terms of the lifestyle, so you’ve mentioned diet, what are the lifestyle changes that you think made the biggest impact on your health?

 

Heather Carrasco (15:13)

I would definitely say number one thing is diet. I got to meet with Sam Josephs and we did a session together for nutrition. So it was great because she’s able to show me what changing the diet looks like and why it’s important and how I can make sustainable changes. And I do feel a difference when I eat something that maybe isn’t great on my body, it shows up in a different way. For example, I gave up dairy. That was one of the first things that I gave up. And before that, I was getting cystic acne. And anytime I do have dairy, I have these flare ups and it’s almost as if my body’s trying to tell me, hey Heather, you need to make a modification in your diet because it’s just not working for you. And one thing I remember reading an article in terms of diet, it said rather than saying I can’t have diet, it’s I choose not to have this in my diet. And it’s really important because language is important to how we view what we’re doing. And so I do try to say, I choose not to have dairy.

 

Overcoming MS (16:28)

And the emotional side of it, the mental health aspects of it, how do you manage that? I think that’s one of the ones that people, lot of people have trouble with.

 

Heather Carrasco (16:38)

Yeah, that one is challenging. I think what helped is a few different things when I feel certain ways leaning on therapy. That was wonderful. I did have an MS mentor through another association connecting with her and having her ground me in certain ways that I was feeling and having a thought partner and thinking about MS helped. Leaning on my friends and family for support. I think I’ve been really lucky to have great family and great friends. And I would say those are the things that have helped me emotionally.

 

Overcoming MS (17:20)

And are you fine with mindfulness? that form part of your routine?

 

Heather Carrasco (17:25)

Every morning I definitely engage in mindfulness and I can tell how I manage my stress. It varies if I did or did not engage in mindfulness in the morning. But I do try to ground myself when I can, but I try to do in the morning 10, 20 minutes of a mindfulness session.

 

Overcoming MS (17:36)

And you’ve mentioned your family already, so what kind of support system have you built and how has that helped you? were your existing relationships impacted from having an MS diagnosis?

 

Heather Carrasco (17:57)

I would say it impacted it in a positive way where, as I mentioned earlier, having people show up for me where I didn’t need to ask for help. So they were, they’re there for me. I have people who check in on me and they’re understanding. I’ll give you a story. So I went and traveled with my cousin and I started to feel a lot of tingliness in my legs I could feel it just travel up my whole body and normally I just go along with it and I was telling my cousin I’m not feeling well and how I’m feeling and she just immediately stopped and was like, okay, so what can I do? How can I help you? What do we need to do to make you feel comfortable? And she just checked on me a lot and it made me feel such gratitude that I have that support there.

 

Overcoming MS (18:59)

Have you had any surprising positives or silver linings that have come from living with MS?

 

Heather Carrasco (19:06)

I would say I’m getting better about advocating for myself and putting myself first, really thinking about what are my needs. I would like to joke and say that I’m a recovering people pleaser. it, but it takes practice though. It takes a lot of practice. It’s not going to happen overnight, but it’s curing or mitigating these thoughts that I’ve had for a long time, but I also feel physically and mentally better than I did 20, 30 years ago. Like just my whole life. just feel I’m in a better place now. And so being diagnosed with MS is challenging. I do feel there are those silver linings. And then also finding I’ve met wonderful people through this process and especially those that I’ve met at the retreat.

 

Overcoming MS (19:57)

Yeah, think overcoming MS is just healthy, isn’t it, for everyone? I I’d certainly feel just healthier generally, you know your blood pressure, your heart rate, all like everything brilliant and they go you’re in excellent health, go you’re bi, in here because I’ve got MS, they went yeah well apart from the MS discounting that then you’re in excellent health.

 

Heather Carrasco (20:20)

Interesting you could mention that I was talking to somebody at work who I disclosed for the first time about my diagnosis and I was telling them the pillars of the OMS and they said, I feel those are things that we should genuinely incorporate into our life if you don’t have MS or the diet, family support, all those things. And I thought, yeah, that’s a great way of looking at it. And I did also want to mention too, because something that comes up a lot is about disclosing at work. And I do mentor some people who have MS or it comes up in general. And I usually tell people that it’s an individual choice. Once you tell folks that you have MS, you might want to think about because you can’t untell them anymore. So that’s something to think about. And then do you, are you in a supportive network too? So for me at my work, I have a great boss, great coworkers. I’m in a great department. And in fact, when I first got diagnosed and came back to work, I actually gave a presentation to people about what is MS, but I feel psychologically safe there. I feel I can trust my folks that I work with, but if I was in a different environment, I may choose not to disclose.

 

Overcoming MS (21:43)

And so as a final question and one that we often ask, what advice would you have for someone who is newly diagnosed? They might be new to the program or they might be entirely new. just been diagnosed with MS. What advice would you give them?

 

Heather Carrasco (21:59)

So as I mentioned with the disclosure, just thinking about that, thinking it through and being mindful of what implications that that means. Find an MS community, whether it’s overcoming MS or there’s other associations and foundations to be a part of, but finding a community because no one knows what it’s like unless they have experienced it themselves. So that would be something I would recommend. Learn about MS, learn a lot and as much as you can because I feel like it does give you a sense of agency. When you know more about MS, you’ve taken the time to learn about it and what different treatment options are available because a doctor may recommend one treatment option, but really thinking about does that work best for you? I’d say that’s something I would recommend. Make sustainable changes, but also do what works for you for some people, quitting dairy cold turkey the next day that might work for you, but if you that doesn’t work for you as a person then you might want to think about how can you start to remove certain things from your diet over time because ultimately in the end you’re making a change for your own health and you don’t want to revert back to where you were before if you actually want to make a change. And then the last thing would say is giving back to the community. There’s a lot of positive research about how giving back can make you as a person more grounded, more emotionally and physically well-rounded, those connection pieces. So that’s another recommendation I would have.

 

Overcoming MS (23:38)

Okay, I think it’s some excellent advice. So with that, thank you very much for joining us Heather Carrasco.

 

Heather Carrasco (23:44)

Thanks for the opportunity.