Judgment Can Help or Hinder

Posted on February 22, 2024 by MSAA

By Stacie Prada

What do I wish others knew about living with Multiple Sclerosis? I wish they knew their judgment could help or hinder us.

Everyone judges, and it’s not a bad thing. We all have opinions, hopes, fears, disappointments, appreciation, admiration, frustration, and expectations. They come through in our interactions even when trying to hide them. It’s not about the judgment, it’s about how it’s expressed. Whether that judgment comes through as cheerleading or criticizing matters.

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We Are More Than Meets the Eye

Posted on February 12, 2024 by Claudia Chavez

Multiple sclerosis is often a misunderstood diagnosis. Many people are unaware of the complexities of the disease, and those with an MS diagnosis frequently become advocates, whether they realize it or not. The resilience of those with an MS diagnosis never ceases to amaze me. Not only do they have to learn about the disease and all its intricacies, but they often must educate those around them about it as well. I wish people knew that those with an MS diagnosis are truly courageous, and every journey is unique.

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Making the Most Is Not Doing the Most

Posted on December 8, 2023 by Emily

The holidays can be a busy and stressful time for most of us. The list includes holiday parties, hosting guests, shopping, gift wrapping, traveling, and cooking. Especially when you have young children, you’re expected to deliver the magic of Christmas with every chance you get. Through my journey living with MS, since I was a young adult, I have learned that doing the most during the holidays is not making the most of the holidays. I have since limited my holiday commitments and traveling to a minimum. This does not mean that I don’t enjoy and love the season; instead, it means I make it manageable, which makes it all the more enjoyable for me.

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Always Evolving

Posted on December 6, 2023 by Kate

By Kate

Sure, I can tell you about how frustrating it is to be too fatigued to play with my kids outside or what it’s like to worry that the drink in my right hand might end up on the floor (or on me). I can tell you about my fears about being able to be the mother my kids deserve and what it feels like to forget key information when I’m speaking to someone at work. It’s a lot and it’s constant, but that’s not what I want to focus on. I’ve been diagnosed with MS for six years and since then I’ve had two children, moved out of state and back, gone through a divorce, and started a new job. My world has changed and so have I. There are so many things I’ve read about the dark sides of MS and I certainly don’t want to downplay those aspects in the least, but I do want to also draw attention to something I hadn’t expected upon diagnosis – I woke up.

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Prioritizing Self-Care

Posted on November 29, 2023 by MSAA

By Stacie Prada

Each year I approach the holiday season with excitedly high hopes and an underlying worry for the season’s demands. I know I need to be even more attentive to my health than usual to best navigate the next couple of months. Yet most years I put commitments and other people ahead of my needs. It leads to overwhelm and exacerbates my MS fatigue.

Self-care is an individual decision and responsibility, and it’s within our control. So, what makes it so hard? Often, it’s the abundant needs of family, friends, profession, and self-imposed expectations competing with limited time, money, and energy to meet those needs. The demands of us and by us can be more than humanly possible to meet. So where do we draw the line?

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Embracing Wellness While Navigating the Holiday Season

Posted on November 17, 2023 by Claudia Chavez

The holiday season can be overwhelming. While I enjoy shopping, cooking, decorating, and spending time with loved ones, it can leave me drained and exhausted. The holiday season represents joy and celebration, but life has a way of challenging our plans and intentions. Taking care of ourselves is integral to enjoying this season to the fullest.

Holidays have a significant impact on our lives. Every year, I remind myself to be mindful of my spending. I get so caught up in gift exchanges and not-so-necessary decorations that I lose track of what is truly important. A present is lovely, but the gift of our presence and undivided attention is unmatched. Spending time with loved ones and being present in the moment is priceless. I must remind myself to put the phone down, set aside my worries for another day, and focus on being fully present. If a gift exchange is essential and you have a large family, we can always give a personalized homemade card or a small trinket that symbolizes your appreciation. Seasonal sales are great but be mindful of impulsive spending. Knowing our financial limits and respecting those boundaries is part of our well-being. It allows us to prioritize our expenses and financial goals.

Social expectations can be a source of stress during the holidays. We may feel pressured to participate in events or activities that do not align with our current emotional or physical wellness. I allow myself to leave social events early, take breaks, or excuse myself from them as needed. Your loved ones may be more understanding of your limits than you think. Share your feelings with them, and don’t hesitate to ask questions. Sometimes, it’s essential to know the food or seating options at the event, or it may be essential to know who may attend the gathering if it contributes to an unhealthy dynamic. Don’t be afraid to set boundaries and follow through with them.

For those who experience loneliness or grief during the holiday season, know that you are not alone. The absence of people or any loss in your life can be difficult this time of year. Whatever the cause of our grief is, know that it is okay to acknowledge and express it. One way to deal with these feelings is to rethink our expectations and be flexible with ourselves. These feelings are entirely valid. Seek support from friends, family, and professionals, and practice acceptance. My MSAA Community Online Forum offers a free peer-to-peer online forum for individuals with MS, their families, and their care partners to share information and their experiences with multiple sclerosis. Building connections and finding support this holiday season can be done in various ways.

Self-care has become an essential component of well-being during the holiday season. I have learned that prioritizing my needs and preferences does not have to be an added task on my to-do list. I can make small changes that have a significant impact on my health.

MS Symptoms People Rarely Talk About

Posted on November 10, 2023 by MultipleSclerosis.net

Some aspects of multiple sclerosis (MS), such as muscle spasms and fatigue, are talked about often. However other symptoms are not commonly discussed.

To find out more about the people who experience those symptoms, we reached out to the MultipleSclerosis.net Facebook community. We asked, “What are the MS symptoms that no one ever talks about?”

The community was inspired by this topic – nearly 200 community members responded! Here are some of the lesser-known symptoms they shared.

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It’s Not All Glitter

Posted on November 8, 2023 by Diana Cruz-Beniquez

Bubble baths, massages, shopping. These are just a few things that initially come to mind when I think of self-care. Self-care is often glamorized, focusing on the external material aspects that constitute treating oneself. Now, don’t get me wrong, I’m a huge fan of all of these aspects, and I love a good shopping spree every now and then. But these aspects are just on the surface of what it really means to care for yourself.

Self-care isn’t always as luxurious as it sounds or looks on movie screens. Taking care of oneself requires dedication and discipline. I’ve found that self-care is uncovering the ugliest parts of yourself. Really getting to the root of who you are as a person, how you react to specific situations, and how you grow as an individual are just a few life-changing processes that I truly consider caring for yourself. But where does this process even begin? Visualizing the person you want to be and showing up as them every day, regardless of your current circumstances, is just one method. Much like the classic saying, “Fake it till you make it,” you are only as good as your mindset. By acting as if you are already where you want to be in life, the rest will surely catch up in due time.

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What MS Has Taught Me

Posted on October 27, 2023 by MSAA

By Suzanne Marriott

Being my husband’s caregiver throughout his years of living with MS taught me a great deal. I discovered hidden internal resources and developed new skills that stretched my understanding of what I could do.

Through embracing the challenges of caregiving, I learned to trust myself to do what had to be done to care for my husband, Michael, despite my self-doubt and lack of experience. For example, in the latter stages of Michael’s disease, I learned to accomplish procedures that only an RN could comfortably do, such as administering IV medications and changing his Foley catheters while maintaining a sterile environment. As his condition worsened, Michael came to trust me more and more, and I was able to ensure that he received the right medical care and the right follow-up—from me.

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What People with MS Wish Others Knew

Posted on October 13, 2023 by MultipleSclerosis.net

When a health condition is invisible to others, people who do not have the condition may struggle to understand it. This is often the case with multiple sclerosis (MS).

Many MS symptoms cannot be seen. This can be incredibly tough for people living with MS. Those around them do not always understand what they are dealing with, even after they try to explain.

To find out more about the MS community’s experiences, we reached out to the MultipleSclerosis.net Facebook page. We asked, “What is one thing about MS that you wish people understood?”

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