[00:00:00] The big question is, how does someone with MS actually improve their mobility, strength, energy, independence? The list goes on. My name is Dr. Gretchen Hawley, physical therapist and multiple sclerosis specialist. Welcome to the MSing Link Podcast. Tune in as I share the top strategies and exercises to help you gain control over your life with MS using research-driven insights and advice from top industry experts.
Whether you're newly diagnosed or have had MS for over 30 years, whether you have relapsing MS or progressive MS, this podcast is for you. You're sure to feel empowered and inspired after each episode. Ready? Let's dive [00:01:00] in
Hello, hello. Welcome back to the MSing Link Podcast. Today we are talking about the holidays because as crazy as it sounds to say out loud, they're almost here. And I personally feel like they've been creeping up for a while now. It's something that's been on my mind, and I think one reason for that is because last year around the holidays, I was saying yes to all of the things, all of the family events that we had going on, all of the events at the daycare that was going on, just all of the things.
The Polar Express train ride, pictures with Santa. And I think one reason I was doing that is because I was pregnant at the time, and so it was gonna be my last Christmas with just our one daughter, so I thought, "I wanna give her this experience." Not that she's gonna remember it. She was not even two years [00:02:00] old at the time.
But I don't know. Internally, I just felt like, "I'm gonna do all the things." And I can tell you that it did not feel good to do all of those things cognitively, like mentally or physically
At the end of this season, I was just so burnt out and it manifested physically as well. But not only that, each individual thing I felt like I was paying for it for the next day or two days or honestly even three days or a week depending on what it was. And that is something that I know a lot of people with MS can relate to, obviously for different reasons, and that reason being multiple sclerosis and the effect that it has on your energy levels, on your symptoms, on your neural pathways, you name it, where you do something one day and you cannot perform in the same way for another day or two.
You might even feel [00:03:00] like you need to stay in bed for the full next day or two or just stay on the couch and you can't do the things that you wanna do, even if they are just simple things or even if it's something like getting dressed or taking a shower. It can just impact you so much more than if you didn't have MS
And that can often lead to the holidays being this time of year that we most look forward to. Like, we wanna do all the things, but also the holidays can be the same time of year that we are dreading the most
So I wanna dive into why the holidays are a perfect storm for MS-related fatigue, and then also offer a mindset shift and strategies that will hopefully help you this season
Let's first dive into the perfect storm. Like, why does it affect you so much? Of course, MS is the main reason, but even if we look [00:04:00] beyond MS, or not beyond MS, but how specifically MS is causing this level of fatigue and inability to function in the way that you want to. So the first thing that I can personally think of is the long stretches of sitting or standing at gatherings with no easy way to reset, even if you prefer sitting down because it's more helpful for balance and you can relax while you're sitting.
Around the holidays, from what I've heard with my MSing Link members and my one-on-one clients, it can be a lot of sitting. And while sitting is normally okay, a lot of sitting can make your muscles tighter. And then when you go to stand up, it's harder to move because you were sitting for too long. So just long stretches of any position, sitting or standing, can make it harder to move, and it can increase [00:05:00] fatigue.
So that's one component. Another component, the unfamiliar spaces at the places that you will be visiting. And I don't mean unfamiliar as in you've never been there before. Like If you're going to a family member's house, you've probably been there before unless they just recently moved.
So it's not that you haven't been there, but it's unfamiliar in the sense that it's not your normal life. And so the couch might be lower than your couch at home, and that's gonna make it harder to stand up and sit down from. Or their toilet might be lower. They might not have grab bars where you normally might want to use them.
They might have stairs. They might have slants in their floors that make it easier to trip, or maybe they have area rugs, and that makes it easier to trip, whereas you might not have those. So just a different setup that you're not used to. And different setups like that with each of those things that I mentioned require that [00:06:00] you lift your leg more, that you move differently so that you don't trip and fall, and that you stay safe.
And so that is going to cause more fatigue too because you physically have to put more effort in. The third component is traveling, and
When I say traveling, I'm talking about anything from flying somewhere, taking a bus, like this, a big trip, as well as just going down the road. I live on a road, the same road that my twin sister lives on and my parents live on. So when we go for the holidays to my parents, it's literally a 45-second drive probably.
So, but even that, that counts. If you're gonna be doing any type of traveling, you likely will need to pack something, even if it's just a dish to pass or gifts for the holidays. So packing in the light sense, or if you are [00:07:00] gonna be staying anywhere for a day or longer, that also includes packing clothes.
And not just that, but cognitively planning. I don't know about you guys, but anytime I go on a trip, the mental load of planning what I'm going to need is so mentally and even physically fatiguing. The same thing applies around the holidays, but it's even more amplified because there's other things that we need to bring around the holidays that we wouldn't normally need to bring if it was just a random trip Then let's also add in disrupted sleep and disrupted routines.
You will likely be eating at different hours. You might not be as hydrated as you normally are. You might not be getting as much sleep. You might not have time for naps, or maybe not even a nap, but just downtime to physically and mentally recover And not only that, but you're probably gonna be doing more activity that's packed into fewer days than [00:08:00] what you normally would do on a regular day or a regular weekend or week
And then let's not also forget about temperature changes. In the wintertime, typically, not always, but typically colder temperatures are better for people with MS, but not everyone. Sometimes colder temperatures outdoors, but also internally if we are feeling chilled, it can make symptoms worse. Typically, it tends to be related to muscle tightness or spasticity, and because those muscles are tight, we have to work harder to move, and that's gonna be fatiguing.
But similarly, if it is cold outside, inside wherever you're going, they might have their indoor temperature cranked up high to keep everything nice and warm, and you could be overheating. If you have heat intolerance, you can absolutely overheat in the wintertime because maybe the temperature indoors [00:09:00] is too warm for you or your internal temperature is too warm because you're bundled up in so many layers or a big, nice, cozy coat or jacket, blanket, whatever.
So these temperature changes are affecting your neural pathways, slowing them down and making movement more challenging and more fatiguing
And you're probably saying yes to more things this season, this holiday season, than you normally would during a different time of year. And everything that we just talked about is equally physical fatigue and a physical impact, as well as cognitive and mental. And if there's one thing that I think all these things that I mentioned boils down to,
It's not just that these things can happen, but it's the stress of knowing that all of this is likely coming. If you've experienced any or all of the things [00:10:00] that I just mentioned, it's not just knowing that, "Okay, the holidays are coming. This is gonna happen," but it's the stress that brings. Like, that is stressful to know, "Okay, I'm gonna be sitting for a long period of time.
I'm gonna be spastic. That makes me anxious." You know, It's that mental stressful component as well
And for some people, that stress is enough to just not participate in the holidays, or at least not everything, which is fine. That is absolutely a viable option. You do not need to do all the things. But I also know that not doing all the things and not showing up can also make you feel guilty, and you might feel like your family members don't understand, and you don't like the feeling of having to cancel or bow out, and maybe you feel like rest is failure even though we all know that it isn't and it's needed by our body, is just not, not, not a great situation, not a great feeling to be in.
And [00:11:00] so here's what I want to offer in hopes of something that you might be able to utilize this holiday season to help you with these situations First and foremost, it's just validation that this level of fatigue that you are feeling, I sometimes call it holiday fatigue or MS holiday fatigue because fatigue is different for people with MS than it is for people who don't have MS.
It is-- That is a widely known fact. They don't experience it the same as someone with MS experiences it. But MS fatigue is your nervous system that is running low on the resources that it needs, the energy that it needs to send signals around damaged areas of your brain and of your spinal cord.
And so being in go mode and saying yes to all the things and making it happen and doing all of the things just burns through those resources and that energy even [00:12:00] faster. So
even when it doesn't feel like stress in the moment. My body is known to feel like it's not under stress at all until something happens. I've talked about this on several episodes before, but the way that my body works is I honestly feel fine physically and mentally. I do not feel stressed, but after a long enough t- time of experiencing that, my hair started thinning.
At a different time in my life, I started having GI problems. There's just things that physically start to manifest that make me realize, "Oh, I think my body is stressed." So you might not even feel stressed in the moment. You might love being at these holiday events, and you feel totally fine while you're there.
It's just that afterwards, and afterwards could mean that night, it could mean the next day, it could mean a few days later that it doesn't hit you, but it hits you at some point. And the [00:13:00] answer to that feeling is not to push harder and to just keep saying yes and go to the next thing. The answer is to prepare.
I love being proactive. My dad used to be my soccer coach when I was young, oh my gosh, probably from the age of like five to maybe 16. It was a while. And one thing that he always used to ingrain in us is that if you're not being proactive, you're being reactive. And so we wanna be proactive, we wanna prepare, we want to decide ahead of time how we're going to conserve our energy, but also if we do end up in a position where we're down and out, like we spent too much energy, we're not doing well, how are we going to recover?
So that leads me to this high-level plan of what you might be able to implement that can actually help. there's four steps. Number one is know your [00:14:00] specific triggers before this holiday season starts. Think about what you might have coming up. Think about the last holiday season, last year. What did you do?
What situations did you find yourself in that weren't ideal or that resulted in something that you didn't want to be feeling or experiencing? And know what those triggers are. Wr- write that down. Second is to budget your energy in advance. Again, being proactive. If you know how much energy a certain activity is going to take, then you can be more proactive about what you use your energy on the day before or even that same day.
So budgeting that energy in advance, not just go balls to the wall, full energy in the things that you're doing in the morning, and then you're done by 2:00 PM, but you actually have a holiday event at 4:00 PM and you feel like you're kinda screwed. So looking at your energy [00:15:00] allotment in advance. I- you've probably heard of the spoon theory in MS as well as other chronic illnesses, that you only have a certain number of spoons per day, and each activity requires a certain number of spoons.
Think about that in advance. Third is to plan your recovery on purpose in advance. So ideally, you won't need to recover. Ideally, you will not have overdone it. But realistically, you might have done something or you might do something in the upcoming holidays that does make you feel like, "Okay, I gotta recover."
What is your plan going to be? And having that in advance, 'cause that's also going to make you feel more confident and reassured that you have a strategy in place rather than having a day where you're like, "Oh my gosh, I need to recover today. What am I gonna do?"
And fourth is to have a low energy day plan Because if you [00:16:00] do end up in a situation where you need time to recover, which is absolutely okay to recover, but you're in a situation where you need multiple days on end to recover again, that is fine. But what I see time and time again is that that quickly turns into a week of recovery and then two weeks, and then you're just in this habit of not moving your body, and then that can very quickly lead to worsened symptoms.
In my case, as a physical therapist, I often see worsened balance, maybe scuffing your foot more, quicker weakness in your legs, noticing that your legs aren't moving as well as they used to. And so by having a low energy plan day, like for example, some exercise movements, light exercise, it could be two movements or maybe even just three.
Maybe you only do 10 repetitions of them just once that day. So just [00:17:00] some type of plan that you can do on a low energy day, and not that you need to do that on your first recovery day or second recovery day, but maybe the third or maybe the fourth, just so that one really hard day doesn't turn into a full lost week or two weeks or three weeks And this could be something that you just do in bed, or it could be on a couch.
Like it-- I really want you to re-envision what exercise means and what that looks like for you, especially on these days where you just don't have energy to move
Each one of these four strategies that I just discussed are things that can be built specifically for you and your situation. It's actually something that I really love doing on an individual basis, 'cause I get to hear about your plans and what are you doing for the holidays, and where are you going, and are there stairs, and how many people are gonna be there, and where is the table that you're going to be [00:18:00] sitting at, and how much room is there between the chair that you're gonna be sitting in and maybe a wall behind you?
Can you take side steps to get to that chair or to get out? And where is the bathroom from the chair in case you do need to get up? So it's really fun to plan for the holidays. I know that might sound silly, but there are these strategies that you can implement to that specific level to help you feel confident so that when these holidays come, when these activities come, you feel confident.
You know what you're gonna do, and you know what your plan's gonna be
And it's not going to change the fact that the holidays are asking a lot of you. They are going to be fatiguing. There's going to be a lot of things that you don't really have to do the rest of the year. But you don't just have to brace for it and just cross your fingers, pray, hope, and then eventually just crash.
You can walk into this season with an [00:19:00] actual plan.
Thank you for listening to today's show. I am so grateful to have you as a listener. If you'd like extra resources, such as a video of one of my seated exercise classes, my favorite core exercises, and the opportunity to ask me your questions, head to missinglink.com/insider. That link will be shared in the show notes, along with links to my social media handles.
If you loved this episode and think a friend or family member with MS would benefit from listening, please go ahead and text or email this podcast to them right now. Sharing this podcast will help me educate and empower as many MS warriors as possible. Thanks again for joining, and be sure to tune in next week for another episode of The MSing Link [00:20:00] Podcast.
