S7E10 Podcast When Caregivers Get MS Balancing Family and Health
[00:00:00] Are you the one everyone leans on, the mom, daughter, wife, caregiver, and you're trying to do it all while living with Ms. You're carrying all this weight for everybody else, but your body needs care too. In today's episode, we're talking about what happens when caregivers get MS and how to keep your battery charged so you don't burn out.
In this episode of my MS podcast, I'm not giving you cliches or generic advice that never really factors in what it's truly like to live with ms. I'm talking about real life pressures of being a caregiver with MS and how to protect your health in ways that actually work when life doesn't let up. And before we get started, I wanna invite you to something special.
Living with MS can feel overwhelming, but one habit can shift everything. [00:01:00] 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 alene brennan.com/webinar.
Welcome to my MS podcast, where women with MS learn how to slow progression and live a life they love. I'm Alene 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 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. Um, or if this is your first episode tuning in, welcome. I'm so glad that you found it here, [00:02:00] and I hope that you stick around. So today we're diving into something that recently came up on a group coaching call that I was hosting and something that really hit home for so many of the women on the call and.
It was interesting to actually watch because one of the women was mentioning that she is a caregiver. Um, she's a caregiver for a family member who is in a group home, and, um, she was just talking about the very real, raw, honest reality of being a caregiver, which is exhausting and living with ms. And what ended up happening.
So many women on the call started sharing their own versions of that same feeling. It looked different in each person's life, but so many of them had that same feeling. And it didn't matter if it was a [00:03:00] mom who was raising a toddler or a mom who was raising teens, or the mom who's trying to hold it down financially for the family.
It was all that same feeling of I'm holding an immense weight on my shoulders here as a caregiver, as a provider, and I'm living with Ms. And I'm feeling like I'm slightly drowning here and I need some help, but as the caregiver, who do we turn to? And it's no surprise that we're having this conversation because nearly 3 million people are living with MS in the world.
Here in the US alone, it's about 1 million. And while those numbers are big, I think the number that's more relevant to this conversation here is that women are two to four times more likely to be diagnosed with MS than men [00:04:00] and women are far more likely to be the caregivers in the home and in the family.
So that means many of us are stepping into life with Ms. While. Also carrying the responsibilities of being caregivers. That's a lot. And it's one that, like, who do you talk to about that? Because if you're the caregiver in the family, what are you gonna have the conversation with the family members that, that you are caring for?
I mean, yes, there's a conversation that certainly can be had with them, but not this conversation. And then you're gonna have the conversation with your friends who are maybe fellow caregivers, but they're not living with Ms. Who else understands the reality of carrying both of those weights? It's a lot.
It's a lot. And many of us, quite honestly, it's not that we don't want to have those roles. I mean, we don't want the role of having ms, but. It. Me personally, I [00:05:00] love being a mother. I love it. It is my favorite thing in the entire world, and yes, I openly admit that raising a toddler at 45 years old while living with MS is hard.
It's hard, but it is also my favorite thing in the entire world. And also I have family members that are aging that need support too. It's kind of like that sandwich generation, and that's my world. But I know, again, everyone is in different seasons and they all can be relatively like equally heavy, like toddler stage that.
Physically exhausting. When you're chasing little ones around, carrying diaper bags, pushing strollers, trying to keep up with everything. You're trying to keep everyone alive and relatively happy. That's physically exhausting If you're raising teens, that shifts more to, I feel like more of a heavier mental and emotional load.
Our teens are [00:06:00] faced with things now that are insanely heavy and. Sometimes unspeakable and you're supporting them through these big emotions and big conflicts, and then others, you may be caring for a parent or another family member, and that has its own unique set of responsibilities. And here's the challenge.
These aren't responsibilities that you can just delegate away. Yes, you can recruit a spouse, a sibling, or a relative to help out, and of course I encourage you to do that, but at the end of the day, a lot of it still feels like it lands on you and you're standing there with MS wondering how to keep up.
And this is where the tension gets really heavy. Like physically, it's challenging to deal with the symptoms and the fatigue and wondering what you're gonna wake up to in the morning. Are you gonna wake up to a new flare? Like physically it is hard to push [00:07:00] through you. You don't have, I always say I don't have that dig deeper button.
It's broken. I don't get to do that anymore. And then also there's like the emotional side of trying to straddle both of these worlds. Being a caregiver and living with ms. Guilt creeps in guilt when you rest. Guilt when you can't do it all. Guilt when you say no. And then what about our identity? Many of us want to be that strong caregiver, the dependable mom, daughter, or spouse, but what happens when your body has other plans?
I just wanna say, I see you. We see you here, we hear you, and we want you to know you are not alone and you are not failing. You are navigating something really hard, and the truth is, I could stop right here and tell you something pretty generic and cliche, like you need to put your own oxygen mask on before caring for others.
I get the message behind that, but also. Step into my world, right? How many of [00:08:00] you're thinking that like step into my world, you don't understand the pressure that I'm under? I will tell you what to do with your oxygen mask, right? Like maybe you have the elderly parent that is fully dependent upon you and the cost of assisted living.
It's insane right now. That may be out of reach. That's out of reach for a lot of people. Or maybe you're the mom of toddlers. Who need everything every hour of every day. There is no off duty. My husband has this like running joke that he says he wants to get a clicker. The clickers that they use at events to like get a headcount of how many people are coming in.
He wants the clicker to get a tally on how many times I hear mom throughout my day last night just getting dinner ready. I think we were up to 20. You get it, you get it. Or maybe you have the teens that are navigating all of the mental health struggles and you [00:09:00] are their anchor. What are you supposed to do?
Just say, sorry, honey, I need rest. Or maybe the bills keep coming in and you are the one holding down work on top of caregiving because stepping back, it's just not an option right now. Again, I see you, I hear you, and you are right. Those pressures are real. You can't just walk away from them. But what if the very pressure you feel to show up for others is the exact reason you need to start showing up for yourself?
Think about it like this. Your body is a cell phone battery. You can run it down to 1%. And sure you can still squeeze out a few text messages or calls, but at some point it shuts down and when it does nothing gets through. That's exactly what happens when we run ourselves into the [00:10:00] ground. And here's the thing, you don't bounce back as fast as a phone.
You can't just plug into the wall for 30 minutes and get a quick charge. Your recovery takes longer, it costs more energy and the ripple effect. Hits everyone around us. So the shift is this, keeping yourself charged, even if it's not a hundred percent, even if you're only holding steady at a 30%, means you are still available when your family needs you.
That charge is what makes you reliable, not running yourself down to zero. That's why caring for yourself isn't in competition with your role as a caregiver. It's not. It is the foundation that makes it possible. I am gonna say that again, you caring for yourself is not in competition with your role as a caregiver.
It is the [00:11:00] very foundation that makes it possible. So let's talk about how we can actually do this in real life. I'm not here to serve you up some like cliche things here. I wanna share things with you that are real world. Applicable. And the first thing I wanna tell you to do might sting a little. I want you to stop waiting for free time to start taking care of yourself because free time, it's not coming.
It's not, and you know that. And while you're at it, stop telling yourself that it doesn't count unless you nap for an hour. This idea that it only counts if it's a full 30 minutes of yoga on a mat. A full hour nap sitting on the couch with your eyes closed for seven minutes counts. Close your eyes in the car during pickup line and take a couple deep breaths.
Put your phone down [00:12:00] and breathe for a few minutes in between loads of laundry. 10 minutes now, saves you from crashing later. Do it. Do it and hear me out on this next one because the first thing I say might feel a little jarring, but I want you to lower the bar on purpose. This is not about having to lower expectations for your life because you live with ms.
This is about lowering the bar of what it looks like for you, taking care of yourself. Nobody's plate looks like the Perfect Wall's. Protocol graphic, forget the nine cups of veggies. Toss your measuring cups out the window. If you ate zero veggies yesterday, put one on your plate today and that is a win tomorrow.
Aim for two, one veggie, one glass [00:13:00] of water, one extra step, one trip to the mailbox. It adds up faster than you think, and small winds are the things that stick, the small habits stick. Perfection never lasts. So I want you to stop waiting for free time, and I want you to lower the bar on what you think taking care of yourself looks like.
It's not a day at the spa. It's not a bubble bath. I'll tell you, I'll tell you a little story here. The other night I was awake in the middle of the night and I couldn't sleep. So one of the things I do is I pull out my Kindle. And I started reading and in the book, one of the recommendations was to take a bubble bath.
And when I tell you like every cell in my body wanted to revolt against this book, and I, in my mind, I'm going through this whole argument with the author, I'm like, I will tell you what to do with your bubble bath. I'm not talking about that. [00:14:00] I am talking about taking the two minutes. In the cracks of your very busy day to do something for yourself that will help to keep that battery charged.
And I also encourage you to start delegating where you can without apology. Look, your team can fold laundry. Your spouse can handle bedtime. Amazon can do the deliveries. Get yourself set up with Instacart. You don't need to justify it. You just need to do it. Stop carrying it all yourself because you think you should.
Ask for the help. Take the help and stop apologizing for it. And this next one might be my absolute favorite. Say no, like your health depends upon it, because it does hear this one. Stop saying yes. To things you will secretly resent. I'm gonna put that on a Post-it note and, and put it on [00:15:00] my mirror so I read it every day.
Stop saying yes to things you secretly resent. Your time and energy are the most valuable resources. Guard them like they are gold if it drains you and you don't have to do it. Don't. Period. End of story. And lastly, I want you to think about stacking some of the self-care habits into real life. I say this in the sense like, I don't want you to feel like you have to create this.
Tremendous like morning routine or picture perfect evening routine that only pushes it further and further away. What I want you to do is add some of these healthy habits in the midst of the chaos you already live in. I am talking about stretching for a few minutes while you're on the floor for tummy time or playing with a toddler drinking water [00:16:00] while the pasta boils on the stove, or going for a walk during soccer practice.
Done. Stop making health and caring for yourself harder than it has to be. I want you to find these small windows of time and take small actions because you are far more likely to do it when it can take two minutes or less, and when you don't have to wait for this massive window of time, that's never going to open up in your schedule.
Not in this season at least. Look, I know this isn't easy. Balancing MS and caregiving is one of the hardest things many of us will ever do. But please hear me when I say this. You are not failing your family by taking care of yourself. You are showing them what resilience and strength really looks like.
You are showing them how to care for themselves too. This is a lesson we all need [00:17:00] to learn. So this week I wanna leave you with this question. What's one small way you can add a little more charge to your battery, not to get to a hundred percent, not to do it perfectly, but just to make sure you don't run down to zero.
Because when you keep your battery charged even a little, you don't just protect your health. You give your family the steady, reliable version of you they truly need. My friends, I hope. I hope that through listening to this podcast today, you feel seen, understood, and valued. You are carrying a heavy load.
You are not doing this alone. That is one of the main missions behind me doing this podcast. Again, it is to help connect us to say the things that we're struggling to say when it feels like no one arounds us, gets [00:18:00] it. We get it here. I get it. And I'm so glad that you showed up for this today because we are stronger together.
And together we rise. Until next time, my friend, take good care of yourself. You deserve it. 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 if you're ready to take the next step, I created a free webinar just for you how to help slow MS progression.
Starting with just one habit, save your spot at alene brennan.com/webinar. I'll see you inside.