Home for the Holidays 

By Diana Cruz

They say as you get older, the holidays tend to feel less special. There is more pressure to give the perfect gift, more work to be done to host guests, and less magic in waking up to presents under the tree. As much as I can understand the added pressures around the holidays as an adult, I can also say that there is so much more to be grateful for as I become more aware every year of what truly matters.  

Happy Holidays

This year, I can say I feel blessed enough to travel home to a family that means the world to me. The people, food, and shelter that I had become accustomed to and overlooked as gifts in themselves are now what makes my heart feel full. Seeing the happiness in my niece and nephew’s eyes as they rip apart wrapping paper (even on gifts that aren’t theirs) are moments that I will always hold on to. The love that my family encompasses is one like no other, and that is something that can never be gift-wrapped. Despite the hiccups and miscommunications that we experience, as I’m sure many others do, I can never thank them enough for the support and love that they unconditionally provide. That is what makes our home warm even on the coldest of days. The holidays for me this year remind me of all the simple things that we typically take for granted, but I know I would be lost without.  

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A Season of Convergence 

By Stacie Prada

The holiday season for me is one of convergence. A convergence of work demands, holiday tasks, gatherings, gifts and merriment. It feels like everything needs to get done, and there’s not enough time in the day or energy in my body to do everything. It affects my routines, eating habits, cash flow and health. Yet I love it and look forward to it every year.

Decorations brighten the landscape, workplaces and homes. Stress abounds, but so does good cheer. Frenzy and serenity coexist.

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What I Wish People Understood About MS Fatigue

Unless they live with it, most people do not understand what multiple sclerosis (MS) is and how it can affect the lives of those who do live with it. And, often, they do not know what it is like to experience the fatigue that is a big part of MS.

To learn more about how fatigue affects people with MS, we started a conversation on the MultipleSclerosis.net Facebook page. We asked, “What is the one thing you wish people understood about MS fatigue?”

The topic saw a huge response – more than 1,300 people commented. Here is some of what they shared.

Getting more sleep does not “fix” fatigue

The number one issue that members of the MS community mentioned was that MS fatigue does not go away with more sleep. Many people with MS are sick of hearing that they should push through their tiredness or that a nap will cure it. 

This type of full-body exhaustion is hard for others to understand. No matter how many times it is explained, they may never get it. The good news is that this community is full of people who know exactly what you are dealing with.

“MS is not just being tired. Getting enough sleep does not help.”

“It is not sleepiness. It is bone-dead tiredness. It is where you are so tired you shake. It is almost impossible to get moving. I absolutely abhor people who ask, ‘Why do you not get more sleep?’”

“Every cell in my body is more tired than you have ever been in your entire life.”

The exhaustion is also mental

MS fatigue affects more than just the body. It can leave your brain tired, too. In a way, this can be even more frustrating than physical exhaustion. Feeling too tired to think clearly means people with MS must practice ongoing patience and acceptance.

“It is overwhelming, and it is not just your body that is tired. It is also your brain.”

“It is physical and mental exhaustion that cannot be relieved with sleep or a nap.”

It is so unpredictable

Another huge challenge is that fatigue often shows up with no warning. This makes it especially hard to make plans for work or for fun. Not knowing how they will feel moment to moment can be annoying and frustrating for many people living with MS. The unpredictability may mean rescheduling often. It also leads to discovering who in your life is able to compromise and accept that you will often need to change plans.

“We have no control over it. One minute we are doing great, and then the next minute, total exhaustion sets in.”

“It can come on suddenly and wipe me out so quickly that even lifting my arms to eat seems like a lot of work.”

All that tiredness and missing out is depressing

When someone feels tired often, it can be hard to say yes to social plans and other self-care activities. They may break plans or never make them in the first place. All of that saying “no” can make them feel lonely and sad to be missing out.

Learning to live with MS means finding a balance. Maybe saying “yes” to a party across town is too much, but inviting the party host over for coffee the next day feels manageable. It is worth it to try and find a way to keep social events and fun activities in your life.

“That it can cause an unrelenting depression and sense of missing out.”

“That it is devastating enough to impact your life in the most important ways.”

“How miserable it is and how it influences every decision you make.”

MS symptoms do not result from a choice, laziness, or old age

For some reason, people often dismiss MS symptoms. When someone with MS talks about fatigue, some people may be quick to think they are lazy. Others may wrongly assume that they have a choice about how they feel. Still others may think their MS symptoms are merely part of “old age.”

Unsolicited advice, comments, and criticisms can be hurtful. Many members of the MS community would find it helpful if more people understood that MS is a real disease with real consequences.

“It is not my fault.”

“I am NOT lazy! I am exhausted.”

“When I say I am tired or hurting, they would understand, instead of saying that I ‘get that way.’ They also will tell me that it is just old age.”

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Vermicelli Pudding

It is the time of the year when the heart is merry and the spirits are high. Time to eat a hearty meal and spread the good cheer. One of my favorite childhood memories was hanging the Christmas stocking every Christmas Eve and as expected Santa always delivered. Those where the times when the little pleasures of life, gave immense fulfillment.

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Magical Holiday Traditions

By Courtney Blewett

There is a reason why the holiday season is considered the most wonderful time of the year. Embracing holiday traditions is one way to make this season merrier and brighter. Whether it be carrying on family traditions or creating new ones – traditions bring a sense of nostalgia, joy, and comfort.  Traditions are unique to every family, but no matter how we all celebrate, there’s one thing we all have in common: the holidays are meant to be enjoyed with those we love.

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Nutella Crescent Rolls

These Nutella Crescent Rolls are a delicious little treat. Great to serve as a dessert or for breakfast.  Made with only 3 ingredients. They are wonderful served warm!

They are so easy to make.  Simply spread Nutella on each uncooked crescent roll triangle. Rolling it up and then bake as directed.    

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Embracing Change During the Holidays

Traditions, especially during the winter holidays, are a significant part of our culture. For many of us, traditions bring a sense of connection and comfort. They represent consistency and hold great meaning and purpose. But how do we keep a tradition alive when things are ever-changing?  

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Christmas Dump Cake: A Stress-Free Dessert

The holidays can be a stressful time of year for anyone, but for those living with MS, it can be even more stressful. Things that may seem like a simple and even fun task, like baking, may be a daunting and time-consuming one for us with MS. When you’re dealing with a chronic illness, you must learn to take it easy on yourself. Give yourself some grace, even during the holiday season.

I’ve made some changes in my life to lessen my holiday anxiety and lighten the load a bit. For example, not putting so much pressure on myself to make dozens of homemade cookies or desserts. I use easy recipes that do not involve a lot, like this one I share with you below. It is one of my favorites and a crowd pleaser to boot! Spoiler alert: no one is going to care, or even know you made a boxed cake, I promise. 😉

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By Dana Mietus

Let’s start with some good news you might not know: No matter what way you choose to spell the Jewish festival of lights – you won’t be wrong. Of course, you could also see it as you can’t be right, but as someone who regularly spell-checks the word ‘restaurant’ (no I did not get it right the first time writing this) I prefer to choose the never wrong option. 

Hannukah graphic including picture of dog with plush dreidel and a bowl of latkes
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Vanessa Willison – December 2022 Artist of the Month

Black and white photograph by MS artist Vanessa Willison entitled Snowmen
“Snowment” by Vanessa Willison

MSAA features the work of many talented artists affected by multiple sclerosis as part of our annual MSAA Art Showcase. Each month we share these artists’ inspiring stories and beautiful artwork with you as our Artist of the Month. This month, we celebrate Vanessa Willison as the December Artist of the Month. Vanessa is from Dorchester, NE.

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