What does it feel like to have multiple sclerosis? Ask this question to 10 different people living with MS, and you'll likely get 10 different answers. Ask this question to one person living with MS on 10 different days, and you'll likely get 10 different answers. It's not because we're indecisive. It's not because we're making up symptoms. MS is just that unpredictable and often that indescribable. When this is your daily reality, it can be incredibly challenging to have your family and friends understand your world. And on the flip side, if you're a support person or caregiver to someone with MS, it can be incredibly frustrating to understand how someone who quote unquote looks so good can be complaining about these invisible symptoms. I mean, isn't everyone tired? Doesn't everyone have trouble concentrating on occasion? Everyone experiences aches and pains in their body, right?

This episode is designed to give those of you living with MS the words to explain some of the most common symptoms of multiple sclerosis and to help your family and friends better understand the daily reality of this invisible, unpredictable disease. And I really hope that I did us all justice with the descriptions that I have for us today.

So just use this episode as inspiration, that you can take what resonates and leave what doesn't. Consider this your buffet of words for living with MS. I have a question for you: Would you like to feel more organized, efficient and productive despite MS brain fog and fatigue?

The live challenge starts next week. Join at Alenebrennan.com/focus. There are 1 million people diagnosed with multiple sclerosis in the US. So that makes you one in a million. And you have a special purpose in this world that no diagnosis can take away from you. So if you are ready to reclaim your body, mind and life from multiple sclerosis,

Let's start this discussion with a quick rundown on MS so we understand the true beast that we are about to describe. Doing so will give us context to these invisible symptoms and help us understand the why behind them. So multiple sclerosis is an autoimmune disease. Our own immune system, which is designed to protect us from viruses, parasites, and other foreign invaders, mistakenly views our own body as an invader and it attacks. In the case of MS, your immune system starts to attack your central nervous system, your brain and spinal cord. In other words, command central of your body is under attack. By friendly fire. When your immune system attacks your central nervous system, the coating of your nerve fibers gets damaged. Picture the charging cord of your cell phone. On one end, you have the plug for the wall. On the other end, you have the plug for your phone. In between is that long white wire. It's actually not just one wire. There are several wires in that cord, but they're all wrapped together in that white protective coating. This coating is similar to the myelin sheath of your nerve fibers.

Damaged from our immune system, and that can create scars or lesions. And just like the electric charge from the outlet to your phone becomes unreliable, the messages from our brain to our body can become unreliable. If nothing else, because of this damage, the body has to work so much harder to get the messages where they need to be. This is where we start to talk about the very first symptom, one of the most common and one of the most frustrating symptoms of MS. I'm talking about fatigue. And that in and of itself, just what we described, the body having to work so much harder to get messages from the brain to the rest of the body is one of the many reasons why we can experience fatigue. Our body has to work so much harder to perform everyday normal activities that we never gave a second thought to before MS.

It's also important to understand that MS is incredibly unpredictable and therefore so is MS fatigue. One day you may wake up feeling relatively normal. You go about your day doing all the things, shower, breakfast, laundry, work, errands, and dinner. By the end of the day, you're tired so you relax on the couch and eventually head to bed. But when you wake up the next morning, it feels like you're waking up in a completely different body.

This morning, the idea of having to shower feels crushing. It feels super defeating to feel this level of fatigue when you have nothing to really show for it. You didn't run the marathon. You didn't get a ribbon for some crazy amount of work that you've accomplished. You simply woke up like this. Now the little energy and strength that you have has to be rationed throughout the day. This is how the spoon theory came about. It's a theory that was developed by a woman who was living with lupus, another autoimmune disease. One day she was at a diner with her friend trying to explain what it feels like to live with lupus,

then she walked her friend through a typical day, taking spoons away for each task. You wake up in the morning, one spoon, gone. You shower, that's another spoon, gone. Making breakfast, yep, that's another spoon too, and so on. By the time you arrive at work, you're already running low on spoons. Now, for most people, once they run out of spoons, they just borrow from the next day.

But for people living with a chronic illness like MS, once the spoons are gone, that's it. You're out of energy. You can't borrow from tomorrow. And if you try, you're likely dealing with significant consequences. I personally know the realities of that scenario all too well. And I know I'm not alone in this. So we have to carefully plan our day and decide what's worth spending our limited spoons on. If a friend asks you to hang out, you might think, well, that'll cost me three spoons and I only have two left. Do I skip dinner to hang out? Do I rest now and hope I have enough spoons for tomorrow? It's a constant balancing act. So the spoon theory is a way for people to explain the limited energy that we have due to a chronic illness like MS. When you say you're out of spoons, you're saying I'm out of energy for the day. It helps others understand the choices and sacrifices that we have to make daily.

That's one of the aspects of MS fatigue that I think is most misunderstood. It's not just about wanting to take a nap. It's a physical exhaustion and weakness. I like to relate it to the flu. The lack of energy and strength that you have at the end of a long day is very different than the lack of energy and strength that you have when you're dealing

little tired after a stressful day that can get relieved with a good show on Netflix and a glass of wine. I'm not knocking it. I'm just saying it's not realistic from an MS fatigue perspective. But in all seriousness, one of the other frustrating parts of MS fatigue, in my opinion, is not knowing how to make it go away or when it will go away, if at all.

Be really challenging to deal with. Now, you know, as a nutrition coach specializing in multiple sclerosis and autoimmune disease, I have found diet to be incredibly helpful with managing fatigue. Quite honestly, it's been my greatest tool to finding relief from the fatigue. But the reality is it's not a quick fix. It's like telling someone with a weight loss goal to eat one salad and then expect them

there or when you can't remember that person's name that you were just introduced to five minutes earlier. Or when you try finding a word that's right on the tip of your tongue, but you just can't grab it. Everyone has a hard time concentrating, right? Yes, that is true. These are all experiences throughout everyday life. But it's fleeting. It's often due to distractions, multitasking, or even having a lot on your mind. Give yourself a moment and maybe a little hint and your memory usually kicks back in and you go on with your day. But my friends, that is not brain fog. That's normal everyday life in a busy world filled with lots of distractions. Brain fog is a persistent cognitive impairment. It's called brain fog for a reason because it's very much like being in a fog, something we can all relate to. Imagine driving in a dense, heavy fog. You're in your own car, a vehicle you know inside and out, and you're traveling along roads you've driven countless times before. Everything is familiar. Under normal circumstances, you'd navigate these paths with ease and confidence, almost on autopilot.

You're hesitant to turn the steering wheel even the slightest bit. You're pressing the gas pedal so gently because you can't see in front of you. The speed you once took for granted is now like an agonizing crawl. You're just trying to make sure that you don't veer off the road or miss a turn, even though you've taken that same turn a hundred times before. The fog can trick you and make you doubt what you know. That is what brain fog feels like. It's the mental equivalent of driving through that thick fog. You're in your own mind, a place you know better than anything. Trying to navigate thoughts, tasks, and decisions that on any other day would feel straightforward. But with brain fog, the simplest task or most familiar thoughts become obscure. making it challenging to process information and make decisions. Like that dense fog on the road, brain fog makes everything feel slowed down, more challenging, and can make us second-guess what we'd normally do without hesitation. Now that we've put some words to describe this experience, let's understand why it happens with MS. Remember how I described earlier in the episode the damage that your immune system causes to the central nervous system? It damages that protective coating and causes lesions?

Well, staying on this car analogy that we've been on, these messages that your brain is trying to send throughout your body might get delayed, take wrong turns, or sometimes not arrive at all. This disrupted communication from your brain to the rest of your body is a primary reason for cognitive changes or brain fog that many of us with MS experience. Everyday thoughts, decisions, and memories have to navigate these quote unquote damaged roads. Just like our car in the fog, the brain has to work harder, even straining to perform tasks that were once simple and automatic. The brain's usual pathways might be blocked or slowed down due to the damaged myelin, leading to feelings of confusion, forgetfulness, and a sense of being stuck,

around you better understand your world with this invisible disease. Now let's dive into one of the most mysterious symptoms of MS, in my opinion, heat intolerance. Did you know that the original way to diagnose a person with MS was to put them in a hot tub? If they became symptomatic, weak, fatigue, experienced numbness, or any of the other countless symptoms of MS, they were diagnosed with multiple sclerosis.

Else, it may be mobility issues. And for yet another person, it might affect their vision. The symptoms are unique to you and your experience with MS. What I think is most misunderstood about MS and heat intolerance, and quite honestly is also fascinating to learn, is that to be affected by the heat, it doesn't have to be the temperatures of a hot tub or a fireplace that would trigger your symptoms. Those are the obvious triggers, but it can be just as common to be triggered by subtle temperature changes. It can be a single degree difference in your internal body temperature. Did you hear that? One degree difference of your internal body temperature. Oftentimes, you don't even feel that. And personally, that's my danger zone. It's the almost unnoticeable changes of a room temperature. The slight elevation due to the oven being on in the kitchen.

But in a nervous system compromised by MS, where nerve transmission is already struggling due to myelin damage, even a small increase in body temperature can further slow down these nerve impulses. It makes sense. But one thing that's important to note about this is that it's not permanent. While the heat may exacerbate symptoms, it doesn't cause further damage to the myelin sheath. The worsening of symptoms is generally temporary.

Are the same. Some days it's like navigating through thick fog. And on other days, it's like trying to explain why you can't handle the heat when the oven is on. It's crazy, I know. But here's the thing. MS is such a mixed bag. And if you're living with it, you know the roller coaster. One day up, the next day down. And for our friends and family trying to get it, imagine feeling a different kind of off every day. MS is a tricky beast, but through conversations like this episode today of My MS Podcast, we're trying to put words to feelings that often seem indescribable. We might not have all the answers, and honestly, there might not be a one-size-fits-all answer anyway, but by talking about it, we're getting closer to understanding our own world and helping those around us to understand our world.

Well, my friend, we've reached the end of this episode. Pick one lesson from today's discussion and put it into action now. It's time to reclaim your body, mind, and life from multiple sclerosis. And for more resources, events and programs, head over to AleneBrennan.com. See you on the next episode of my MS Podcast.