Some of the ABCs

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Living with MS is a unique and different experience for each person it affects. No two people will have exactly the same symptoms or disease course, but many still find commonalities in their experiences and feelings when it comes to the condition. MS tries to bring a lot of baggage with it, but many find ways to cope and manage the disease in their own way that works for them. This is done with the help and support of healthcare professionals, family, friends, and others in the MS community. As we focus on some of the ABCs of MS this month according to each person’s view of it, I’ve highlighted some factors I’ve seen relate to MS below.

A: Some of the A’s I’ve seen correlate to MS include Acceptance, Adapting, and Adjusting. Hearing a diagnosis of MS brings a period of trying to accept the diagnosis and coming to terms with it. Acceptance is not an easy feat and can take time. It can come in waves and show up again at later points in the disease course too. So, it’s a step that individuals may find themselves faced with multiple times. Finding ways to help accept it can look different and change too and is unique to each person. Adapting and adjusting to some of the changes MS can create is something people find themselves doing often as well. Making changes and modifying things can help maintain balance and expectations. If routines/schedules/tasks need adjusting to help fit your needs better, take time to make these changes so they work for you.

B: B’s associated with MS can include Building and Backup. Building relates to the education and knowledge piece of MS. Building upon information about the disease and continuously learning new facts and resources is an important piece to the process. Continue to build upon your strengths and goals and finding what you enjoy too. Backup refers to the support you put behind you when dealing with MS. Whether it be your own skillsets and strengths, support from others within your circle, education and resources, and health information. It never hurts to have a little backup when needed.

C: The C’s related to MS incorporate Community and Care. Within the MS space there is a great sense of community that many individuals rely and depend on for support. It is vast and has many layers that consist of healthcare teams, MS organizations, peer and familial support, counseling help, and other pieces individuals connect with throughout their MS journey. Community support is a great tool in helping to manage the disease and finding assistance. Care is a crucial piece to the puzzle as well. Finding healthcare, personal, wellness, and emotional care aid is significant in helping cope with the disease and all its factors.  

It’s hard to imagine that one disease can have so many differing views of it and be experienced in such vastly different ways, but MS can and does. But no matter how unique each person’s course of it is, there’s still so much to connect and relate to about it. No one is alone in this.  

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Deborah Tomushunas – January 2022 Artist of the Month

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Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We receive many wonderful submissions from across the country and are delighted to share the work of these artists and their inspirational stories with you, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Deborah Tomushunas of Marietta, NY:

Deborah Tomushunas Artist of the Month's artwork entitled Savannah Trolley
“Savannah Trolley“

About the Artist – Deborah Tomushunas

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Ask the Expert – Mental and Emotional Health

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Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Question: As we enter into the New Year, what strategies do you recommend for positive mental and emotional health?

Answer: Of all the questions I’ve been asked over the past couple of years this is probably the most difficult to answer… and to answer briefly. For some people, positive mental and emotional health comes more easily and naturally. It doesn’t require a strategy or a lot of work. Perhaps it’s the good luck of genetics or a positive and nurturing upbringing. But clearly for some people, happiness is more difficult and requires more work. For the latter and probably much larger group, it does require more work, and more effort, and maybe a strategy. It’s clear to me that the effort is worth undertaking!

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What Those With MS Have To Say About The Most Challenging Chores

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There is a shift in the quality of life when managing a chronic condition. That is no different for those who live with multiple sclerosis (MS). There are always new challenges to overcome and new physical limitations to face and fear.

It goes without saying, managing daily life with MS takes a significant mental and physical toll. Activities and simple tasks that once were taken for granted, now take so much energy and strength.

We were curious about the impact chores have on those who live with this impactful condition. To learn more, we turned to the MultipleSclerosis.net Facebook page. We asked community members to tell us: “What household chores or tasks tend to be the hardest due to MS?”

With nearly 900 comments, let’s see what those with MS have to say.

Chores that require bending and standing

Actions that involve prolonged bending or standing are difficult for you. It is hard to maintain balance when standing. Your body starts aching, and the room starts spinning. This can be frustrating because many tasks involve being upright!

“Yard work. Cannot do bending and standing up.”

“Cleaning the tub! Leaning my head down then standing up makes me dizzy and off-balance.”

“Loading the dishwasher throughout the day and then unloading it.”

“The worst is grocery shopping. Too long on my legs, and they swell, cramp, and go numb.”

Chores that force you to move around

MS drains your energy. Trying to complete any chore is exhausting. You need to rest after tasks that once took no time or thought.

“Putting everything away is exhausting, and where I am alone, it just piles up.”

“Vacuuming, so I bought a Roomba. Love it!”

“Sometimes, I don’t have the strength to brush my teeth.”

“Changing the sheets and taking a shower. Both wipe me out.”

Anything that makes you hot

Many of you experience flares when you overheat. From the weather, exertion, or standing over a hot stove, heat is a struggle. You find tasks done around heat or that cause you to sweat challenging.

“Any outside work in the summer months.”

“Sweeping and mopping because I get hot.”

“Dishes! I love cleaning, but the hot water has me overheated in seconds.”

“Cooking is hard because any and all heat drains me.”

Mental tasks

It is often hard to maintain focus with MS. Brain fog settles in, and you forget what you are doing. Chores requiring mental focus wind up half done or overlooked.

“I do alright with physical chores. It’s the ones that require my brain that get me into trouble!”

“For me, creating and sticking to a meal plan and paying the bills. I have to set up bill pay from the bank as soon as the bill shows up. If I don’t, they are late, and I end up paying fees.”

“I forget where I’m up to with a recipe and adding ingredients, or if I’m making something from memory, I forget what I’m making!”

Tasks requiring motor skills

Muscle weakness and losing coordination result from MS. Tasks requiring motor skills are tough. Navigating steps, lifting, folding, or meal prep require attention and extra time.

“Laundry! Folding is so hard!”

“Getting up on step stools.”

“Peeling potatoes is really hard for me.”

“Climbing steps with laundry baskets.”

“Dusting is the worst. I knock everything over. I’ve broken almost everything breakable in my house.”

Thank you

Maintaining everyday chores with the limitations that come with MS can be mentally difficult. Please don’t ever hesitate to ask for help if it’s what your body needs. Resting your body and recognizing your limitations is not a sign of weakness – though that’s what society leads you to believe. It’s performing an act of service to your body that holds you up daily.

There is connection in community and we appreciate everyone’s insights. A member affirmed the value of this space and responses to the prompt.

“Thank you to everyone who posts. It makes me feel less crazy when I can see others have the same challenges. It’s so nice for me to be able to say ‘Me too’ and be able to relate.”

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Happy New Year

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As this year comes to a rapid end, I’d like to leave you with something positive to help you get your 2022 off to a great start. As I thought about what I might share with you, I came across this acrostic that truly inspired me. My hope is that it will inspire you as well, and that you will have a Happy New Year.

Happy New Year by Catherine Pulsifer

H appiness depends upon your outlook on life – Find the good in all situations
A ttitude is just as important as ability – Keep your attitude positive
P assion, find yours this year! – Do what you love and you will never work
P ositive thoughts make everything easier – Stay focused and stay positive
Y ou are unique with special gifts, use them – Never forget you have talent

N ew beginnings with a new year.
Enthusiasm, a true secret of success.
W ishes, may they turn into goals.

Y ears go by too quickly, enjoy them – Wisdom from your elders, listen
E nergy, may you have lots of it – Take care of yourself
A ppreciation of life, don’t take it for granted – Live each day
R elax, take the time to relax in this coming year – Keep a balance in your life

May your holidays be filled with joy and may you have a “Happy New Year.”

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A Slew of Hope

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By Doug Ankerman

Having hope is what keeps us going. Hope drives us. Hope motivates. Hope encompasses everything we live for — even the silly things, like these…

Hope I can wear these sweatpants another day.

Hope I can sleep tonight.

Hope I can make it to the bathroom.

Hope the tile floor isn’t wet.

Hope I don’t have to walk through the grass.

Hope it’s not too hot.

Hope it’s not too cold.

Hope no change on my MRI.

Hope I can remember your name.

Hope they have a fork.

Hope I can just “splash-n-spritz” and not take a shower.

Hope my shoes are handy.

Hope I can stay awake at the movie.

Hope they have close parking.

Hope there is shade.

Hope there’s a place to sit.

Hope this post doesn’t go on much longer.

Hope I still have another prescription refill.

Hope my pill-case isn’t lying (This IS Wednesday, right?).

Hope these socks match.

Hope the car has enough gas.

Hope I can open this ketchup packet.

Whoops. Hope Tide-To-Go works on this.

Hope no one sees me dressed like this.

Hope I don’t have to go upstairs again.

Hope my appointment is in the morning.

Hope this isn’t fattening (Who am I kidding).

Hope this isn’t another robocall.

I can’t read this — hope I can find my cheaters.

Hope this ends before I nod-zzzzzzzzzzzz

Hope YOU have a tremendous 2022!

Doug writes goofy things about MS and other stuff on his humor blog at myoddsock.com.

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Holiday Pear Bread

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If you are a fan of banana bread, you may love this too! It’s as a new twist on an old recipe.  It may come in handy especially at this time of year when many get holiday fruit baskets and you often do not know what to do with the beautiful pears you may receive. This holiday pear bread became a quick new favorite in my house.  It is moist and full of flavor. 

Yummy with morning coffee and tea!!

Ingredients

  • 1/2 cup vegetable oil
  • 1 cup granulated sugar
  • 2 eggs
  • 2 cups grated fresh pears
  • 1/2 cup chopped pecans
  • 1 teaspoon vanilla
  • 1 1/2 cup flour
  • 1/2 teaspoon baking soda
  • 1/2 teaspoon baking powder
  • 1/2 teaspoon salt
  • 1 teaspoon cinnamon
  • 1/2 teaspoon nutmeg
  • Dash of lemon juice

Instructions

  1. Preheat oven to 350 degrees. Lightly use cooking spray in a loaf pan.
  2. Combine oil, sugar, dash of lemon juice and eggs in a mixing bowl. Beat well. Stir in grated pears, pecans and vanilla.
  3. In another bowl, combine flour, baking powder, baking soda, salt, cinnamon and nutmeg.
  4. Stir dry ingredients into pear mixture.
  5. Pour into loaf pan.
  6. Bake for 55-60 minutes, or until toothpick inserted in the center comes out clean.
  7. Allow bread to cool for about 10 minutes

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A New Year Ahead

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I don’t know if it’s just me, but I’m having a hard time believing that we’ll be in a new year soon. Regardless, 2022 is rapidly approaching with each passing day. It feels like time has gone by more quickly, even during a pandemic, and that we’ve just flown through this past year at lightning speed. Luckily 2021 brought with it more hope and opportunity than the previous year. With its vaccine availability we were able to start doing more and seeing people again. The virus has not gone away but there is more protection now than before and with it more hope and high spirits heading into this New Year.

Spending time with others

Hopefully this upcoming year we will see people getting together more often. Of course, all the while still abiding by safety measures and precautions, when possible. But gathering again with friends and loved ones will be a welcome, continued change we hope to see.

Continued research and education

We continue to learn more daily when it comes to the COVID-19 virus and its variants, and hopefully this will continue in 2022. But not only that, MS research and education remain vital for the MS community as well. Treatment investigations, clinical studies, and education programs have increased over the past year and offered avenues of hope for those in the MS space. Education remains key to staying apprised of what’s impacting those touched by MS.

Support and encouragement

It’s been a trying time we’ve found ourselves in for nearly two years now. Things have weighed heavy on people’s emotions and well-being, but support in the MS community has remained strong and resilient. We’ve seen people still connecting with one another through various means to stay linked and provide encouragement to others. Be it online, by phone, or other avenues of communication, members of the MS community tried their best to stay in touch. MS organizations and groups continued to provide vital services as well, letting individuals know they’re not alone.

As we embark upon this New Year, let’s try to stay hopeful for refreshing changes and opportunities that may come. We can continue to hope for better times ahead.

Wishing everyone a hopeful and bright New Year!

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Kelsey Davis – December 2021 Artist of the Month

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Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We receive many wonderful submissions from across the country and are delighted to share the work of these artists and their inspirational stories with you, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Kelsey Davis of Wilton, NH:

Kelsey Davis painting entitled Cosmic Night
“Cosmic Night”

About the Artist – Kelsey Davis

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Tell Us You Have MS Without Telling Us You Have MS

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Sometimes, explaining multiple sclerosis (MS) to people who are unfamiliar with the condition is frustrating. The clinical definition does not fully capture the reality.

Finding Solidarity (& Humor) with the MS Community

The trend “Tell us without telling us,” or “tell me without telling me” asks people to share how they match a set of criteria or are part of a group without explicitly stating it. This trend allows people to make pointed statements that play with stereotypes, define characteristics, and share inside jokes – that includes those living with multiple sclerosis.

When we recently asked community members on the MultipleSclerosis.net Facebook page: “Tell us you have MS without saying you have MS,” the responses were amazing. This prompt struck a chord. With more than 1,000 responses, the creativity of the community certainly presented itself!

You are all too familiar with falling and tripping

Falling is a way of life with MS. Your balance and spatial awareness become compromised. You can trip over the slightest thing or nothing at all!

  • “The walls keep jumping in front of me, and the floor has bumps in it.”
  • “Ghost holes … watch out for them. They show up unexpectedly outside and even in your kitchen. The hole was there when I tripped then … abracadabra… it’s gone, and my new seat is on the floor.”
  • “I do all my own stunts – my random gravity checks are dedicated to science, not just spasticity.”
  • “Oh look … air … let’s just trip over it.”

Brain fog is the norm

Living with MS causes your brain to feel muddled. You forget words. You say the wrong word in place of what you want. Dates, tasks, names, or passwords that you have known forever suddenly vanish from your memory.

  • “I’d say what I’m thinking if I knew what it was.”
  • “In my head, it sounded right, but when the words came out, they were backwards.”
  • “Wait, what was I answering?”
  • “Would anyone care for some of my ‘Word Salad?’”

Everyday tasks are completely draining

“Exhaustion” does not begin to cover the depth of fatigue MS brings to your life. Formerly simple tasks wear you out for hours, if not the entire day. You find yourself needing lots of rest.

  • “I don’t have the energy to get off the couch to go to bed.”
  • “‘Good morning. Time for a shower and enjoy this beautiful day.’ Exits shower. ‘I’ll just sit down for a few.’ Cue the snoring.”
  • “Some days, I’m too tired to chew my food.”
  • “I put fresh sheets on the bed, and now I need a nap.”

Heat makes you miserable

With MS, you run warm. You feel hot and sweaty when others are cold. Hot weather makes the symptoms worse. Trying to keep your body temperature comfortable requires much effort.

  • “The thermostat sits at 68, and I’m in shorts; the rest are bundled up.”
  • “I take a shower just to get really hot and sweaty even after a cold shower.”
  • “I’m hot. It’s hot in here. It isn’t? Oh well, I’m hot!”
  • “Cancel our plans. The temperature is over 73 degrees.”

The MS hug is real

Most people living with MS are familiar with the MS hug. It feels like a tight squeeze around your chest. It comes on out of nowhere and is extremely painful.

  • “Want a hug? No? Me neither, but I got one today anyway.”
  • “Feels as if someone is lifting me off the ground and squeezing my middle chest section.”
  • “I feel like I’m being ‘hugged’ by a boa constrictor.”
  • “There’s this hug I would gladly do without.”

You spend lots of time in the bathroom

The regular need for the toilet is part of your life with MS. You experience incontinence. Leaving home requires forethought and planning around your bathroom needs.

  • “I pee myself daily.”
  • “I can tell you where all the nearest restrooms are within seconds of entering a building.”
  • “Excuse me, I need to go to the bathro …Oops. Nevermind. I’m just going to go change.”
  • “Where is the bathroom?”

Your calendar is filled with MRI appointments

Living with MS means frequent MRIs to monitor lesions. Comfortable or uncomfortable, the tube becomes familiar. Your image results look dramatic.

  • “My brain lights up like a Christmas tree on an MRI.”
  • “Looking at my MRI images is like looking out of a plane window when flying over a city at night.”
  • “So, I had an MRI last week …”

Thank you!

While all of this is a comical and light approach to what life with multiple sclerosis can entail, we know there is so much more. We’d like to thank those with MS for sharing wonderful insights into life with a chronic condition. We appreciate the honesty and such willingness to share.

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