S11E1 Uhthoffs Phenomenon_Transcript
[00:00:00] Last week, I went viral on Instagram. A carousel I posted reached more than 65,000 people organically, and more than 1,500 people shared it. So 1,500 people sent this post about MS to a friend or family member. Like, that's mind-blowing to me. But here's the interesting thing about it. They didn't share it because they learned something new about MS.
They shared it because for the first time, they had words for something that they had been struggling to explain for years. What it actually feels like to live with MS in the summer, and not just the physical symptoms, but the grief of missing out, the guilt of changing family plans, and the exhaustion of constantly wondering whether people are believing you.
This is the conversation you [00:01:00] won't get at your doctor's office, but it's exactly what we talk about on my MS podcast and what your MS sisters are here for. And before we get started, I wanna invite you to something special. Living with MS can feel overwhelming, but one habit can shift everything. That's what I'll show you inside my free webinar, How to Help Slow MS Progression, Starting with Just One Habit.
Think of it as your first step towards more energy, confidence, and hope. Save your seat at alinebrennan.com/webinar. Welcome to my MS podcast, where women with MS learn how to slow progression and live a life they love. I'm Aline Brennan, your MS sister and a practitioner who knows the science and the reality of living this too.
Each week, I share simple, science-backed habits to boost [00:02:00] your energy, stay consistent, and feel like yourself again. Because MS may be a part of your story, but it doesn't get to write the ending. Hi, my friends. Welcome back to my MS podcast. I am coming to you fresh off of a July 4th weekend in a 100-degree heat wave.
Like, I'm literally recording this the Sunday of July 4th weekend in my bedroom closet. And I'd be lying to you if I didn't admit that this weekend was a doozy. This was a rough one in so many ways, in planning it, in living it, and recovering from it. Because if you're anything like me, a mom, an ambitious woman, someone who still has a full life that you are trying to live, the life that you have worked so hard to build that you want to maintain despite this [00:03:00] diagnosis of MS, you get it.
Like, the holiday plans are made. The kids are excited. You are going to show up for it no matter what But you would really love if it didn't take your health down in the process, right? Like, that's how I feel. I'm determined to make things happen, but I don't want it to make MS worse, right? Like, you don't wanna miss out on summer just because you have MS, and you don't want your family to miss out either.
And it's that second part, the family missing out, or really the family understanding our struggle, is kind of what prompted this episode today. So as I mentioned, I went viral on Instagram. Like, viral for me at least. I have 10,000 followers, and this post reached 65,000 people, at least at the time of recording this, and was shared by more than 1,500 [00:04:00] people.
And I know that, like, when we go on social media, it's easy to kind of, like, get lost in the numbers and all of that. But every single time I see numbers like this, I'm like, imagine 1,500 people in a room who are all getting out their phones and sending them this message about MS, or a room of 65,000 people who are reading this message about MS.
Like, that's, that puts it in perspective to me. I know that the numbers, again, they're, they can be big on Instagram, but each number represents a person. It represents a woman diagnosed with MS who is trying to desperately be understood by her family, her friends, her neighbors, the people around her. So all of this kind of came about from a post that I did a couple weeks ago, and it had this kind of, like, translation guide theme to it.
So [00:05:00] it was an MS translation guide, and it was a carousel post as well. But this one was about fatigue, about what "I'm tired" actually means when you are living with MS, and that one took off. So that was an early indication that, like, okay, this is a post that is valuable to our community. This is something that is needed and valued and appreciated.
And that's why it's always helpful to share your feedback on posts. If you like something, like it, heart it. If it's valuable to you, repost it or share it, because I do look at those numbers to base my future content on, because I want to create more content that's interesting and valuable to each of you.
Like, that's why I put so much time and effort into every single thing that I do. And I will not admit how much time this post that I did that went viral actually took me to create. [00:06:00] It is much longer than you would expect. I always tell myself that each post takes like fifteen minutes and then you're done.
My friends, it took me hours. But it was because I wanted to get it right. I knew the importance of this message, and I knew that so many of us were struggling to be understood in this reality of living with a heat sensitivity that other people just don't get. It's, again, similar to that concept of like, yeah, everybody else is tired too, but MS fatigue is very different.
Other people are hot too in a heatwave. Yes, absolutely. I'm not saying that they're not. But the effects of it are very different for us when we're living with MS. So I saw the weather forecast for July 4th weekend and saw that the entire country was basically headed into a massive heat wave, like over a hundred degrees here in New Jersey, and not just hot, but humid too.
So I decided to do another [00:07:00] one of these carousel posts with the theme of like this translation guide. And I did it specifically on navigating the heat while living with MS. And my friends, it took off. Like, I will watch the numbers shortly after I post something, and I'm also seeing if there's comments to respond to and all the different things.
And I think within like the first hour or something, it'll reach two thousand people. And I'm like, "Okay, this is different level." I had hoped that it was going to be valuable, especially given the amount of time that I put into creating it. But like two thousand people in an hour, like that's, that's different level.
And the comments all were saying the same thing. Like, "I have been trying to explain this for years." Or some people saying like, "I just sent this to my entire family." Other people say that they cried reading it because it gave them the validation of a struggle that they have been living with in what feels like a very silent and isolated way.
And the reality is there [00:08:00] is a whole language that comes with living with MS, but especially when we are living with MS in the summer. And today, I wanna give you kind of like the full version of this carousel post, the stories behind it, the science behind it, the emotion behind it, and also what actually happened as I lived this out over the July 4th weekend.
So one of the slides in the carousel said this. "She says, 'I'm fine, just a little hot.' But she means, 'I'm not fine, but I don't wanna be the reason everyone has to change their plans.'" And then the next said this, "It's easy to think she's just uncomfortable. Everyone else is hot. It'll only be a little bit longer.
She'll be okay." And that's the gap, right? That's why 1,500 people sent this to somebody that they loved because how we look and how we feel and how we are [00:09:00] perceived can be very different. And I lived every bit of that this weekend. Let me tell you what that actually looked like for me this July 4th weekend.
So our town does fireworks on Thursday night, which I actually really love because it helps you like kick off the holiday weekend nice and early. However, this Thursday night was the first night of the heat wave. It was 100 degrees, and we had already promised our daughter we were going to the fireworks.
And every mom knows once you commit to a kid about fireworks or anything fun, they are holding you to it. My daughter is four. She does not understand MS, and I don't expect her to. I don't really want her to, quite honestly. But the original plan was that we were gonna get there by 6:00 when the event started, and our town does a really good job.
It's at this park where they have food trucks and a live band, and there's a huge playground where the kids can play. And it's just like, it's so much [00:10:00] fun. You bring your chairs, you bring your blankets, you grab some dinner, you hang out, you stay till the fireworks around like 9:30. So again, our plan was to get there around 6:00 and do just that.
Set up our chairs and our blanket and like just have fun. And I brought the glow sticks and like all of the things. It was a perfect kickoff to the holiday weekend, the kind that looks perfect on the outside at least. But when we are living with MS, we know being outside in the middle of a heatwave, I don't care if it's 6:00 in the morning, 6:00 at night, or anything else, there is nothing perfect about it.
It's actually terrifying. And I had stepped outside earlier in the day, and it was oppressive. There was literally no better word to describe it. It was brutal. So the entire day, I'm trying to figure out how I can survive this for my daughter. And I can't tell you how many scenarios I went through in my head [00:11:00] throughout the day to make it work.
Then I finally suggested to my husband, like, "What if we drop one of our cars off early, so we get there early, and therefore we can get a really good parking spot? And then you set up our blanket and chairs, and then we come home, have dinner in our air-conditioned home, and then go back a little bit later.
Like, maybe we show up around 8:00, and you drop us off, and then you go park the car wherever the available spots are at that point." And that's what we decided to do. So we dropped the car off. My daughter and I stayed in the air-conditioned car while he set up the blanket and the chairs, came back, drove home, and yes, dinner was just sandwiches that night, and it would've been easy to step into the kitchen and just put the sandwiches together for f- the family.
But I told him I needed help with the sandwiches, too, and cleaning up. And I specifically said, like, "I am trying to save [00:12:00] every bit of energy I have for the fireworks." And I wanna just take a second on this because I know that it's easy to think, or I'll at least admit that I'm tempted to think, like, "Doesn't he know these things by now?"
And here's the honest answer. Sometimes. Sometimes, yes, but not always. And I think it's easy to assume that everyone else has a partner who just offers to help without being asked. I've been living with MS for 10 years now, and I have a business around teaching people about MS and helping them to manage it.
I have my nutrition coaching practice. I have this podcast. I have a social media account around it, right? Like, this is my world. And I still have to educate my family members, and I still have to ask often and step by step. And I'll be honest, for a long time, I was resentful about that. [00:13:00] Like, why do I have to spell it out every single time?
But I have to let go of that because the ask needs to happen. Yes, it would be lovely if people understood what it was like for us to live with this invisible disease. But even if you have to ask, do it anyway. Don't assume that they know. Don't assume that them not offering or stepping up without being asked is them thinking that you don't need it or them not being willing to.
Sometimes they're just in their own world And they want to help, or at least they're willing to help. They just need to be asked. And the other part is try not to stay attached to how they respond. Like, we're exhausted living with MS, and I don't know how this will land, but I would be willing to say that sometimes they're exhausted hearing about it too, right?
[00:14:00] Like, let's just call a spade a spade. Sometimes we are so sick and tired of living with this, and we want to vent, and the people around us, they're the ones who are hearing about it most. So they may be tired of all of that, and that doesn't make it right, my friends. That does not make it right. We still need support.
But the energy that they respond with, you cannot be attached to. You ask for the help early and often and try to let anything other than positive support just roll off your back. We need the help, and what's helped me most is realizing that it's not just about me. It's about me being able to show up for the family that day and the next day.
So that gave me more confidence to be able to ask for the support that I needed when I didn't want to have to ask, right? Because we don't-- We are independent women. We don't wanna [00:15:00] have to lean on or depend upon somebody else, especially when we like things done our own way, right? We would rather just get it done.
We don't wanna have to ask somebody, but we are in a position where we need to, and that is actually the best option for us. So a little side note, but I wanted to add that in 'cause I think that's important to discuss. So anyway, we dropped the car off. We came home, had dinner, and our house is about, like, maybe five minutes from the park where the fireworks were, so super close.
And then we went back at eight PM. Not six PM, we went back at eight. And I wore my ice vest. I had put that in the freezer earlier in the day. And I had my ice wands too, which is basically just like a washcloth soaked in water, rolled up like a little burrito, and then you put a hair tie around it and pop it in the freezer.
I had my ice necklaces, my electrolytes. Like, I was fully loaded, and I asked my husband to carry the [00:16:00] cooler that had all of it in it, right? Like, step by step. So we arrived at eight, not at six, and I know that that only shaved off two hours, but two hours is significant in 100-degree weather. And even with that, it barely went below 100 degrees.
But every little bit helped So we got there and it was nice because everything was already set up. And then we all went over to the food trucks and my daughter and I got this really fun pineapple smoothie that we shared. It was moments like that, that we're carrying back literally a whole pineapple that they had cored out, put a pineapple smoothie in it.
We got these big like colorful straws. It had the umbrella. It had all the things. Like those are the moments. Those are the moments that we fight for. Those are the moments that as we are figuring this out throughout the day, like, okay, how are we gonna make this happen? It's because we want the ability to build the memories.[00:17:00]
We don't want to have to sit out on all of the fun things. We want to be able to participate in them. So even if, yes, the family plans have to be adjusted, we have dinner at home instead of at the fireworks. We arrive at 8:00 instead of 6:00. That's part of it. That's part of it. But I am so, so grateful that I got to be there.
We got to be there as a family, and I lasted through the fireworks. But those are the things that nobody sees, the calculations that happen before we even leave the house. The negotiation that is constantly going back and forth in your mind. Like, can I handle this? Is this worth the risk? Is there a plan B?
That mental load is a lot on top of the physical load that we are dealing with MS too. And the emotional load, like let's add that in there too, right? Now, I wanna pause for a second and take a quick dive into the science behind this. Like, why does heat [00:18:00] bother us so much when we are living with MS? Like, why does heat affect us so differently?
Turns out it actually has a name, Uhthoff's phenomenon. I think I'm pronouncing that right. It was the name of a German ophthalmologist who first documented it like back in the 1800s. And up to 80% of people with MS experience it. That is not a small number. 80% of the people living with MS experience this heat sensitivity.
So here's what's happening in the body. We know that MS damages the myelin, right? Like the protective coating around the nerve fibers. And those damaged nerves are extremely sensitive to temperature. So when your body temperature rises, and get this, it only has to be like half of a degree. We are not talking about a significant shift, but just half a degree difference in your body temperature and those nerve [00:19:00] signals start to slow down or in some cases stop reaching their destination entirely.
So that message that your brain is trying to get to your muscles or your limbs or whatever it may be doesn't always arrive And in this carousel that I was talking about, I explained it like this. Think of it like a temporary power outage. When our body temperature is elevated, it's like the power shuts down.
Nothing works the way that it's supposed to, but the, quote-unquote, "lights" come back on when our body cools down. And here's another interesting fact. Did you know before MRIs existed, one of the ways doctors actually tested for MS was by putting patients in a hot bath? Then they would watch to see if the neurological symptoms appeared or got worse in the heat.
And if they did, it was considered a positive indicator for MS. It's what they called the hot bath test, [00:20:00] and it was used for literally, like, decades Think about that. The heat sensitivity is so consistent, so measurable, that it once was a diagnostic tool for MS. This is not new, my friends. It is definitely not made up.
And as the carousel said, it deserves to be understood. But going back to us actually living with this, here's what the science doesn't tell you. It doesn't tell you about the math you're doing in your head before every single summer event. Like, how close can we park to the fireworks? How far is the walk gonna be?
Is there gonna be shade? Is there any area that's gonna have AC? What is my exit strategy if I have to leave early? What do I need to bring? What do I have to ration out throughout the day so that I have the energy to do this tonight? Like, before MS, you may have been annoyed by those things on a hot day, but you didn't worry about [00:21:00] them taking you out.
And so many people have said, like, one of the hardest parts is being believed about it. They say, like, "Nobody believes me," or, "They just don't get it." Because #YouLookFine, you don't look sick, or you were just fine last week. Like, everyone else is hot, too. And every time you try to explain it, you watch their face, right?
And you can tell they're trying, but they don't get it. So eventually, you stop explaining. Not because it doesn't matter anymore, because you ran out of the energy to try. And then you're left carrying both the symptoms and the silence. That's fun. Because so many people say, "I'm exhausted from explaining."
There is a specific kind of fatigue that comes from having to justify your own experience over and over and over again. From translating your invisible illness into a language someone without it can [00:22:00] understand. It takes energy you do not have, and it costs more than heat does. Every time you have to explain why you can't just drink more water or why you can't just sit in the shade and be fine, a little more of you goes with it.
Like, eventually you start wondering if it's even worth trying to explain at all. And then there's the guilt for feeling like you're ruining the plans. This can be a heavy one. Because this isn't about just canceling plans. It's watching the people you love trying to hide their disappointment, too. And we all know kids don't do a good job of hiding disappointment, and that is crushing as a mom.
That sucks, right? I'm sorry to say it, but it sucks. We don't want to be the reason why plans change. We don't wanna be the reason why we have to shorten our night at the fireworks or why we have to leave the pool early or any of the other things, [00:23:00] right? Just add the guilt on top of the fatigue, on top of the symptoms, on top of everything else you are trying to manage.
The guilt is a symptom in and of itself, and nobody I don't know about you. They didn't warn me. I'm willing to bet they didn't warn you either. So that's why we do all of the calculations, right? Like, that's why we obsessively think about it the week leading up to it, the day of, the night of, and even as we are at the event.
And again, I'm grateful I survived the fireworks, but that was just one event checked off. It was Thursday night of the holiday weekend. We still had the whole weekend ahead of us, and I really wanted to go down the shore Friday morning. I'm in New Jersey, so we say go down the shore. We wanted to go to the beach the next day, which is about an hour drive for us.
We do day trips down the shore, um, in the summertime a lot, and I thought that that was gonna be a good place to go because usually it's a couple degrees cooler than it is by our house. But I- you don't know until you [00:24:00] get there, right? Like, it could be sweltering hot. The sand gets hot. If the sun is beating down, like, it's, it's a wild card 'cause once you're down there, you're down there.
And also, I had been out the night before in the heat of the fireworks, so is that going to kind of have me starting behind the eight ball? Well, we got up in the morning. We decided to go, and again, I had all of my cooling devices packed and ready to go, including the umbrella and all the things. And I'm so grateful to say we got down there, and it was significantly cooler.
I would say, like, significantly probably, like, I don't know, maybe it was, like, low 90s t- uh, air temperature-wise. And yes, my husband dropped us off by the beach, and then you still have to walk on the beach, right? Like, you can't, at least in New Jersey, drive on the beach, so there's still the distance from the street to where you're gonna set up your blanket and everything.
But for that, I don't think I wore my Ice Vest. I think I brought it with me. I kept it in the cooler because I wanted to be able to have it available for the [00:25:00] day, but I did... I definitely used my ice necklace, and I drank a lot of electrolytes going down there. And I'm so grateful. Like, the umbrella worked.
The- there was a little breeze that helped to keep us cool, and the ocean was really cool, too. So I didn't go in. Um, it was actually a temperature that felt too cold to actually get in, but just putting my feet and, like, my legs in significantly helped cool me down. So then I felt like, okay, check Friday off.
Another day made it through. Saturday, we were invited to a friend's swim club for a July 4th celebration, and they were having, like, this really cool s- water slide for the kids, and they had all of these events planned and music and just, like, the whole bit. Again, like, super fun, and it was with a family that we are really close with and excited to spend some time with, but this felt different.
Like- The beach was one thing because I knew it would be cooler down there. Being at a pool, a [00:26:00] b- a pool is a smaller body of water, significantly smaller than the ocean. So on a hot day, especially back to back, the water temperature in a pool sometimes becomes, like, barely cooler than bathwater. So I'm like, again, back to square one.
I don't know if I'm gonna be able to do this. And I had a very honest conversation with my husband. We were going... The family that we were going to spend the day with was his best friend, and I'm like, "You have to give him a heads-up, too." Um, and we went, and they, his friend, had a spot that was already designated in the shade.
Again, I traveled with that ice cooler literally every single where we went, and I am grateful to say that the pool temperature was... It wasn't like... It would be generous to say that it was cool, but it wasn't warm. So, like, I, at least I spent the majority of the time in there. I drank lots of water, and then we did kind of call it a little early just because I, at that point, like, now it's starting to [00:27:00] stack.
I was out at the fireworks Thursday night. We went to the beach on Friday, and now we're at a pool on Saturday. Like, I just, I wanna get us home. We had a nice full day, gave my daughter a heads-up, like, time to go home, and she's pretty good with that, I am so blessed to say. A lot of coaching around that, but she is good when it's time to go, even if it's fun thing.
Like, she's, she'll go. And interestingly, we didn't have plans on Sunday, and the, like, planner in me who wanted to get everything out of a holiday weekend was kinda disappointed that we didn't have plans on Sunday. And then I'm like, "What are you doing?" Like, "What are you thinking about? You need Sunday, number one, to do, like, laundry from all these beach towels and, like, pool towels and bathing suits and, like, all the different things, but also You need a recovery day.
I am not good at building recovery days in, clearly, because guess what I'm doing right now? It is Sunday and I'm recording this podcast, right? Like, now to be fair, we [00:28:00] went to church in the morning and then came home. My husband took my daughter out to do a few errands so that I could rest then because, oh PS, we had a massive storm last night and the thunder, the lightning, we had actually just had a church literally just across the street from us get struck by lightning on Friday night, so my nerves were a little high on like trees getting struck by lightning and all the different things.
And needless to say, like we didn't get the best sleep last night. So that was just kind of icing on the cake. So we got up, went to church this morning, and then my husband took my daughter out to run a few errands so I could rest and now I'm getting this podcast done during her nap. So, um, yeah. Did I u- leverage my rest day the way that I would like to and the way that I would recommend you to?
No. But I am forever a work in progress, right? But the rest that I did this morning was really helpful. But the things that helped the [00:29:00] most over this weekend c- definitely communicating early and often throughout the weekend, asking for help every step of the way, even when you have to spell it out. Using all the cooling devices, the ice vests, the ice wands, electrolytes, maybe arriving a little bit late, maybe leaving a little bit early.
Try leaving before you hit the wall, not after. And giving yourself permission not to have plans on Sunday without guilt. All right, my friends, this has been a much longer episode and you definitely got a play-by-play of my July 4th holiday weekend. I hope this was helpful, and as always, like send me a DM, send me an email.
I always love hearing from you, knowing what's helpful, knowing what topics you're enjoying because just like I said, um, you know, how I create social media posts based on your engagement and things like that, I also create podcast episodes based on the feedback that I get. So if there's a topic that really resonated with [00:30:00] you, if there's something like a style of me kind of sharing my everyday life that was really helpful to you, let me know because I create content based on what is most requested.
And then I'll leave you with this. Remember, we are a community of women whose ambition survived your diagnosis. but your energy didn't. It happens on holiday weekends. It happens during heat waves. It's who we are. This is why this community exists. That's why you are here, and that's why I want to make it a little easier for you to be understood by the people in your life.
So before I let you go, I want to share something with you. If this episode here put words to something that you have been trying to explain, I want to send you the MS Summer Translation Guide as a completely free resource. So again, just seeing how much this p- this carousel post took off, I decided to [00:31:00] create a free resource that basically takes this carousel into something that you can print and share with your family, your friends, whoever the people are in your life that love you but still struggle to understand what it's like to live in a body living with MS.
So just DM me the word summer on Instagram so we can get this translation guide in your hands today. All right, my friends, take care. And that's it for today's episode of my MS podcast. I hope you're walking away with one small step you can put into practice today, because that is how real change happens.
And remember, MS has its own biological clock, which means the sooner you start, the more power you have to influence your future. The best time to begin is now. That's why I created my free webinar, How to Help Slow MS [00:32:00] Progression, starting with just one habit today. Grab your spot at alinebrennan.com/webinar.
See you there.