Am I Lazy or Is MS Actually to Blame?

By Matt Allen G · October 15, 2020

 

Most people living with multiple sclerosis have probably experienced the feeling that others think they are lazy. Or maybe they have flat out been accused! At the very least, I’m sure everyone has encountered at least one other person with MS who has shared this experience. It can be painful to feel like you’re being looked at as a human sloth due to your inability to “keep up” because if you have MS, you can’t help it. MS commonly causes people to not be able to do the things they once could. But lately, I’ve been catching myself wondering if I really am lazy.

Are people with MS lazy?

Why do people think we are lazy? Well, in my opinion, this is an easy question to answer. People tend to believe what they see. I think it’s human nature. With that in mind, what do we know about symptoms such as fatigue, spasticity, pain, or vertigo? They’re invisible. You can’t see them, which means the people around you only get to see you “lying around doing nothing.” They see the ‘what’ but not the ‘why.’

Making assumptions based on appearances

Since people usually accept the easiest explanation as the most likely explanation, you can see why they would jump to the conclusion that you’re just being lazy. I find this really frustrating, but I do understand it. I’m sure I’ve made similar assumptions based on appearances even when I know that you can’t judge a book by its cover. That’s just how our brains work. It’s up to us to catch ourselves in moments like this and seek the entire picture before reaching a conclusion.

Explaining that I’m not lazy

This all leads to one of the most challenging and irritating parts of everyday life with MS: trying to explain to people that there is something there, even though they can’t see it. It’s unfortunate, but this is a burden that falls on us – the ones living with this illness. It can be really hard to explain something that we ourselves don’t entirely understand. But I guess it’s just another responsibility that came with MS. Having to teach others around us about a disease we are often still learning about ourselves. Sometimes we succeed, but a lot of the time we don’t. That is one more thing in life with MS that we don’t have much control over.

But what if it’s not MS?

Despite everything I know, and despite the fact that I would tell anyone else saying what I’m about to say that they are wrong, I have caught myself wondering…am I? Am I lazy, or is it really just my MS? The thought comes from a small part of my brain, but it actually raises many questions for me. Questions like, “Why do I feel lazy?” “What am I doing to make myself feel lazy?” and “What can I do to stop feeling this guilt?”

Why couldn’t I get more done?

I’ve literally been having a hard time falling asleep at night because this question has really been weighing on me lately. I lie there thinking about everything I accomplished for the day and wondering why I couldn’t do more. Why I didn’t exercise. Contemplating how I might be able to get more done tomorrow. Listening to my inner-monologue debate, whether it’s a matter of how or if I can achieve more. Because maybe it really is just me? Perhaps I really am just lazy?

What I know and feel don’t always match

This is just one example of how MS can cause conflicting thoughts and emotions. I know I’m not lazy. I hate it when I’m not busy. I hate feeling like I wasted another day. I could never live a life of idle luxury without losing my mind. I know about and have felt the benefits of exercise, especially when I compare it to how I feel when I don’t.

At the same time, I often feel like I can’t keep up with my responsibilities in life. Sometimes I feel like the world is asking way too much of me, sometimes. So, at times I feel like I am lazy and subconsciously using my MS as an excuse. This all leads to the heavy feeling of guilt that’s been keeping me up at night. What I know and what I feel about my MS don’t always match.

Trying to make sense of how I feel

Turning back to my bedtime reflecting on the day and trying to make sense of the mess of thoughts and feelings I’ve been living with, the answer seems obvious. I’m currently not doing as much as I did even just six months ago. I’m not going on my morning walks, I’m not leaving the house to run errands, and I’m not exercising the way I should be. It would be easy to blame this on the pandemic, but that’s an excuse that can quickly be debunked with ease. The only blame I can actually attribute to that excuse is how it “shook up” my routine.

Getting back over the hump

Just because things are different and maybe even a little more complicated doesn’t mean they are impossible. I know I can still do most of those things – I’m specifically referring to exercise – even if they aren’t as easy or comfortable. But because I’m not? I’ve found myself back at the bottom of the hill you have to overcome to feel the positive benefits of exercise. I think if I can get back over that “hump,” I’ll start feeling less lazy and more productive because getting the amount of work and healthcare chores I’ve gotten done lately doesn’t seem to be helping.

Something for people with MS to keep in mind

I could be wrong, but at this point in time, I really feel like the fact that I’ve not been moving as much is the reason I’m wondering if I am actually just lazy. Which I’m not. But I feel like I am. I wonder if this example of conflicting thoughts and emotions is something that others have been dealing with lately? If it is, maybe we have a sort of mental/emotional health issue on our hands in the MS community? Or perhaps this is one of those “no-duh” situations that everyone already knows about, and I’m just barely catching up to this reality.

Staying Healthy and Minimizing the Spread of COVID-19

The federal government and the CDC are proactively working to minimize the introduction and spread of this virus within the United States. More time is needed for researchers to gain a greater understanding of the specific virus (SARS-CoV-2) that causes this specific coronavirus (COVID-19), before a vaccine and treatments may be developed. Until these become available, the CDC explains that “Nonpharmaceutical Interventions” (NPIs) are actions that people and communities can take to help slow the spread of illnesses.

Also known as “community mitigation strategies,” and independent of medications and vaccines, examples of these types of actions include disinfecting surfaces, washing hands, staying home when sick, increasing the distance between people at public gatherings, canceling or postponing special events, and closing schools and/or businesses as needed. Avoiding travel to affected countries, as well as keeping a distance from anyone showing symptoms of the coronavirus, is also vital to minimizing the spread of the coronavirus.

Staying healthy and reducing one’s risk is another important factor. The CDC and MSAA recommend the following “healthy habits” for preventing the flu (and other illnesses):

Get a flu vaccine and help stop the spread of germs (if recommended by one’s doctor) ^*Please note that the current flu vaccine is NOT effective against COVID-19; it is only noted to otherwise help people remain in good health.

Continue taking a disease-modifying therapy (DMT) and do not make any changes to one’s treatment regimen, unless advised by one’s physician; consult a medical professional with any concerns

Take flu antivirals, if prescribed

Avoid close contact with people who are sick

Stay home when sick, but be sure to consult a medical professional

Individuals should cover their mouth and nose with a tissue when coughing or sneezing, or use the inside of their arm to avoid spreading germs

Washing hands often helps to protect people from germs; if soap and water are not available, an alcohol-based hand rub should be used

Avoid touching the eyes, nose, or mouth – an illness may be spread when a person touches something that is contaminated with germs and then touches his or her eyes, nose, or mouth

Practice other good health habits, such as cleaning and disinfecting frequently touched surfaces at home, work, or school – especially when someone is ill; get plenty of sleep, be physically active, manage stress, drink plenty of fluids, and eat nutritious food

Anyone in close contact to someone with COVID-19 and who develops symptoms of COVID-19 should immediately call his or her healthcare provider to discuss symptoms and exposure

From: The Coronavirus and MS: What You Need to Know. The Motivator – Winter/Spring 2020

 

 

Making life easier in the kitchen

 

‘Chopped’ winner offers practical tips — and a recipe — for cooking with MS.

Chris Holland went from paralegal to restaurant chef and three-time winner of the cooking competition show “Chopped” in the span of about a decade. And he credits it all to multiple sclerosis.

Holland, who was diagnosed with MS in 2004, says his life “fell apart when I got sick.” But he put his life back together and, with encouragement from his wife, Marge, decided there was no better time to pursue his lifelong dream of becoming a chef. Today, he’s chef and part owner at DVine Bar in Rockland County, New York, where he specializes in what he likes to call “eclectic, weird fine-dining.” He concocts menu items that run the gamut from duck fat potato chips with cipollini onion crema to seared tuna and chanterelles.

Photo: iStock

“I love it there,” Holland says. “I have a great boss who really understands about my MS.”

Holland figures he applied to be on “Chopped” about 10 times before he got the call. Since then, he’s had an impressive run. He notched his third championship in November 2019, donating the $10,000 prize money to the National Multiple Sclerosis Society as a way to give back to an organization that he says has given so much to him and others. He’s also had a great response to his appearances on the show. He’s particularly happy when he hears from “the young people who were diagnosed. They say it’s so nice to see somebody who’s able to do something like I do.”

It’s not always easy. Standing for long hours in a hot kitchen, wielding knives and other cooking utensils while whipping up that cipollini crema can take its toll on somebody with MS. So, who better to offer a variety of practical tips for making life easier in the kitchen?

Here are chef Holland’s tips, along with a bonus recipe you can make while dreaming about being a “Chopped” chef yourself:

Get a Microplane grater
This grater is one of the most important tools in my kitchen and the best $15 you could ever spend. In addition to providing the delicious zest from a citrus fruit, it has other uses for the quick processing of ginger or garlic. Simply grate the ginger or garlic and avoid the tedious task of chopping these aromatics. You don’t even have to peel them.

Get some help from the supermarket
While I encourage everyone to cook your food rather than buy it, there is nothing wrong with using precooked foods for a head start. Rotisserie chickens are available in most supermarkets and are very affordable. Use them in anything that calls for cooked chicken as an ingredient and save those bones for a stock. Check the salad bar for ready-to-go ingredients that you can use in your own culinary creations.

Photo: iStock

Slow cookers are your friend
Slow cookers are a great way to stay out of a hot kitchen and avoid spending time on your feet. Many recipes call for 15–20 minutes of prep time, then set it and forget it. Just remember to start cooking early, as many recipes take hours to finish cooking. Slow cookers are also great for soups.

The microwave is not just for reheating coffee and for frozen dinners
This much-maligned kitchen tool does impressive work with vegetables. Hearty greens such as broccoli, green beans and carrots cook beautifully in a microwave. Just wash the vegetables (do not dry) and place them on a ceramic plate and cover with plastic wrap. Microwave on high for three minutes. Check for the desired doneness and add more time as needed. Season afterward with olive oil, lemon, and salt and pepper.

A salad doesn’t have to just be lettuce
A salad is an easy vehicle for incorporating foods beneficial to those living with MS, such as avocado, whole grains such as quinoa or chia seeds (high in fiber), fatty fish such as salmon, trout and tuna (omega 3s), walnuts (omega 3s), and lean proteins such as chicken, turkey and pork tenderloin.

Mediterranean chicken tacos

Cook Time: 15 minutes

Servings: 4

Ingredients:

1 small rotisserie chicken
3 cloves of fresh garlic (grated with a Microplane)
½ teaspoon dried oregano
½ teaspoon ground cumin
Pinch chili flakes (optional)
½ cup extra virgin olive oil plus 3 tablespoons
Juice of half a lemon
Zest of 1 lemon
1 English cucumber (diced)
½ red onion (diced)
2 tablespoons fresh dill (chopped)
1 tablespoon red wine vinegar
½ cup Greek yogurt
Salt and pepper
8 flour tortillas (6-inch)

Directions:

1. Pull the meat off of the chicken and shred into a large bowl.
2. In a medium sauté pan, heat the olive oil over medium heat. Check the heat by putting one piece of the diced onion into the pan. It should sizzle immediately upon hitting the oil.
3. Once the oil is at the correct temperature, turn off the heat, and add the garlic, oregano, cumin and chili flakes. Stir the oil for one minute or until the pan stops sizzling.
4. Add this oil mixture (reserving 3 tablespoons) along with the lemon juice to the shredded chicken. Season with salt and pepper to taste.
5. In a separate bowl, add diced cucumber, diced red onion, reserved olive oil, chopped dill, red wine vinegar, and salt and pepper to taste.
6. In a separate bowl, add Greek yogurt, lemon zest, and salt and pepper to taste.
7. In a small sauté pan, toast flour tortillas.
8. To assemble, spread one side of tortilla with the yogurt mixture. Top with chicken and the cucumber “salsa.”

For the leftovers, consider adding shredded mozzarella and making a Greek chicken quesadilla served with lemon yogurt and cucumber salsa.

 

From: NMSS

Inside An MS Exacerbation

By Devin Garlit · 

Exacerbation, relapse, flare-up, attack: these are all names for the same thing with regard to Multiple Sclerosis. The general definition of this event is the occurrence of new or worsening of old symptoms lasting for more than 24 hours and taking place at least 30 days after a similar event. While this can be standard occurrence for those with Multiple Sclerosis, not everyone actually understands what’s going during this period. Understanding what is happening during an exacerbation is critical for those with MS. With that in mind, I’ll do my best to help break it down as simply as I can.

What’s happening to the body during an MS exacerbation?

During one of these moments, the disease has caused your own immune system to attack your body. Specifically, your immune system begins to assault your central nervous system. Its weapon of choice? Inflammation (caused by various immune cells). This inflammation damages myelin, a fatty substance that surrounds and helps insulate our nerves. This insulating layer makes sure our nerves properly conduct the electrical signals that our brain sends to the other parts of our body (think of it as the plastic covering on an electrical wire). When this layer is damaged, those signals don’t move fast enough or at all, which is where we start to see our symptoms. Can’t lift your leg fast enough or at all? The myelin around a nerve between your brain and leg has been compromised and the signal isn’t traveling as efficiently as it should be. Not only does our immune system damage the myelin, but it also damages the cells needed to regrow it.

When the immune system attacks

These moments that we call exacerbations (or whichever term you like) are when the immune system is making its attack. It’s when the immune system has created a lot of inflammation in your central nervous system, and it’s damaging that myelin layer. Not only does this inflammation damage that protective coating, but it also has an effect on those signals that are traveling through that part of the central nervous system. We use steroids to fight exacerbations as they help to reduce this inflammation.

When a relapse is over: the aftermath

When an exacerbation is over, these damaged areas of myelin develop some scar tissue (that’s where we get the term sclerosis in multiple sclerosis, we are left with multiple scars; these scars are also referred to as plaques or lesions). Once all that inflammation is gone or significantly reduced, some of that myelin can regrow, but it never grows back completely or strong enough due to the scarring and because the cells needed to facilitate regrowth have been damaged. This regrowth, coupled with the reduction in inflammation, is why people can seem to bounce back after an exacerbation. They may even seem like they are completely well again. That’s why people often use the term “relapse,” because they seem to improve or go back to the way they were. This is a pattern that is extremely common in people diagnosed with the Relapsing-Remitting form of the disease. However, the more exacerbations you have, the more your ability to bounce back becomes hindered.

Accumulating damage over time

The more scars you have and the more cells that help regrow myelin are damaged, the less you are able to recover. In the past, maybe a damaged nerve could still get the brain’s signal where it needed to go, even if not the most efficiently (unless an outside influence temporarily triggered an issue). As more damage occurs over time though, the ability of that nerve to do its job, no matter the situation, becomes compromised. Basically, that’s how people with MS can worsen over time. That’s why doctors try to not only shorten the length of exacerbations through steroids, but to minimize the overall number of them with disease-modifying drugs.

Survey on Complementary/Alternative Medicine Points to Increasing Use by People with MS

The use of complementary and alternative therapies – including vitamin/mineral supplements, mind-body therapies, diet, and exercise – is widespread in MS (81%), according to researchers from Oregon Health & Science University who report on a survey of 1,014 people with MS. It is also on the rise; the team compared these survey results to those of a similar survey conducted in 2001, and found that use of all therapies increased significantly. Respondents to the current survey were nine times more likely to speak with their neurologist about use of these therapies than in 2001.

Many complementary/alternative therapies are considered to be outside the realm of conventional medicine, although others, including vitamin D, exercise, acupuncture, and cooling strategies, for example, have established their role in comprehensive care through scientific study and clinical trials. The survey results highlight the need for  more research to determine the safety and effectiveness of specific complementary and alternative therapies, conclude the study authors. This study was partly funded by the National MS Society. Lead author Elizabeth Silbermann, MD, is funded by the Society’s Sylvia Lawry Fellowship, which trains individuals to conduct clinical research in MS.

Read more on the OHSU website

Read a scientific summary of the paper in MS and Related Disorders

Read more about complementary therapies and MS, including questions to ask when considering a complementary/alternative therapy