Do You Have Irritability with MS?

Living with MS comes with many challenges, both physically and emotionally. These life changes and demands can often lead to irritability, which happens to be one of the most common experiences that can come along with MS. Mood swings and irritability can be brought on by the physical pain and the overall toll MS is taking on the body. The stress and emotional adjustment of living with MS, as well as the treatments and medications prescribed, can all add to this exasperated and agitated state.

We recently published an article from one of our contributors, Calie Wyatt, who compared herself to the character of the Abominable Snowman from the classic movie Rudolf (the red-nosed reindeer). The character was continuously enraged and ill-tempered to those around him, but little did the others know, he was actually suffering from a horrible tooth ache, which led him to being so irritable. It was an interesting analogy to how Calie’s MS pain and fatigue would cause her to lash out at her family and friends. We received such incredible feedback from our community members about this article that we thought we would share some of their responses with you.

Pain

Sometimes irritability and belligerence are a direct reflection of the physical impairment and pain of MS on the body.

“Sometimes I feel the crankiness stems from trying to push past the pain, and live up to the expectations of others.”
“I’m not even aware of my physical misery until I become horrid and crabby…”
“It’s so frustrating having pain all the time. I have been having problems controlling my emotions.”

Fatigue

No matter what you’re dealing with, we all can get ill-tempered and irritable when we are tired or uncomfortable. However, this experience can be made worse when dealing with a chronic condition like MS.

“I get extra crabby when I am tired, and I am tired ALL the time.”
“I used to be a morning person, now it takes so much energy to get going and stay going. I try not to be grumpy, but I can’t help it.”
“I don’t have the energy for life.”
“As far as the exhaustion and fatigue are concerned, I’ve noticed its worse on days when my pain level is high because I feel my mind and body are constantly trying to cope with it and tolerate the pain.”
“I pay close attention to how tired I allow myself to become…I have total meltdowns if I push myself too far. The MIND AND THE BODY JUST SHUT DOWN. When I say I AM TIRED this means I’m DONE… I go lay down – sometimes just a short break and sometimes for the rest of the day if that’s what my body and mind needs.”
“I can relate, I am tired and irritable and can be short and snappy with people.”

Isolation and Anxiety and Depression

Living life with a chronic condition may lead an individual to stay at home more than ever before. This, along with anxiety and depression can contribute to irritability.

“Understanding that the source of our emotions may be depression can help us show ourselves grace.”
“I think my isolation makes it even worse when I do go out, and anxiety jumps into the mix.”
“While I usually never get grumpy, I do get very distant and quiet when I have a lot of pain.”
“This condition has made me a hermit!”

Personality Change

The day-to-day struggles and stress of living with MS can easily lead to moodiness and irritability that can provoke entire personality changes.

“This condition can flat out change your personality in ways that are directly opposite of who you are. I’ll make a rude comment and later wonder: what the heck is my problem?”
“I lashed out at a stranger at the market just a few days ago. I’m not normally like that.”
“I’ve been embarrassed about my behavior but finally forgave myself when I accepted that I did the best that I could at the time.”
“I’m so emotional, I can’t keep my thoughts at bay…they spew out of me so often that I annoy myself. I’m so tired! “
“I’m not the same person, I’m nasty I think. I snap a lot.”

Irritability can strike anyone at any time, and pain, fatigue and depression can all be contributing factors. However, for those living with a chronic condition like MS, irritability can come from all of these factors and so much more. When possible, try to identify what may have triggered your irritable state. If you’re able, pay attention to those things or situations that can lead you to being tense and uneasy, so you, and your friends, family, or healthcare team can try to help resolve them. If you experience any MS-related irritability, let us know how you navigate through, or if there’s anything we’ve missed!

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Prioritizing Needs = You

By Lauren Kovacs

You would think after 20 plus years of MS and three kids I would be good at prioritizing.  I struggle with this monster to this day.  It is not always easy to slay this dragon.  It is relentless and seems to have many lives.

Mentally or on my phone, I try and note my path. I try and tackle one, maybe two, things a day.  Try being the optimal word.  I often plan the week out on Sunday evenings.

It can be hard, too, when prioritizing has a roadblock called “help”.  Many of us rely on help from others.  We end up waiting patiently, all while cooking in stress and anxiety.

I know beggars can’t be choosers.  As if needing help for simple things is not hard enough, we must learn to function on someone else’s schedule and timeline.  Their priorities never click with yours.

Make “you” the priority.  For example, we go to 10am mass.  It is kind of far and my sons are alter servers.  I make sure they don’t smell and are presentable, and then they help me.  Even with all older boys getting out the door is hard.  Being a wrinkled mess, nuclear breath, and non-matching clothes don’t bother them apparently.  Yet, my shoes are tied and I am always ready.

I get up at 6:30am and take my medication, eat, get dressed, do my eyeliner several times, hair only goes into ponytail or down and do any other leaving the house stuff.  I save the things I can’t do for later.  Some days I am completely ready on my own and others I am not.

Yes, it drives me insane, after 20 minutes I can’t tie my shoes.  I may have irritated my ears trying to put earrings on, but at least my eyeliner is straight.  Some days I can’t button my blouse or fix my collar.

Part of prioritizing is letting go.  I only wear silver earrings without those little backs.  They may not be super matchy-matchy to my outfit, but I have earrings on.  If they were there from days before, no biggy.

Trying to go with the flow is torture for many of us.  Most MS folks are planners.  We usually have plan B, C or maybe even plan E. “E” is usually the “enough is enough” plan.

Is it essential to survival that I have different earring on?  Am I at least modest in my dress to go to church?  I hate dresses, but I make sure my pants look nice.  Are my pants easy up and down?  How easily can I get to the bathroom?  The wheelchair does not fit in there, but the walker will.  Are my bowels and bladder empty?

Priorities change like our MS does. Factor in everything.  Is it a huge deal that you had to wear sneakers?  Yes, the black boots would have looked much better. The dress pants would look good, but they have a button and zipper.  Are my fingers working today?  Will I be too tired?

Overthinking might, in some cases, be helpful.  Choose the path with less stress.  Ask yourself what you can do by yourself, if you built in extra time. If I just can’t button my shirt, I wear one without buttons or ask for help, if time permits.

Prioritizing can be exhausting.  Even making phone calls is tough, when your speech is garbled.  I worry someone will report me because I sound drunk.  It gets worse as the day progresses.

I try and keep appointments for late morning.  My day is prioritizing.  Everything comes before my afternoon nap. Once I nap I wind down the day.  My descent into more MS speeds up after lunch.

Making “you” important.  It is a balance to do this on top of family needs.  Don’t brush your wants and needs aside.  I may want my hair pulled half back.  Find a way to meet that want.  I don’t mind having two hairstyles, but there are times I want something different.

Putting make up on is very hard. My eyeballs are used to being stabbed with mascara wands. Baby wipes are great for removing eyeliner that left a wiggly path.  Don’t give up on you because MS is in that path.

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Between You and I

By Doug Ankerman

Time we had a chat. A good ‘ol face to face.

You know we have a few things in common, right?

First, we both have multiple sclerosis. Me, since 1996. An MS diagnosis can be difficult to accept but over time you realize you can’t change the past so you must work to positively improve the future.

Which leads me to the second thing we have in common…muscles.

Did you know we have around 640 muscles in our bodies? That’s not 640 between us, you have 640 muscles and I have 640 muscles. (Although looking at me one might think I left a few hundred muscles in my other shirt!)

And those muscles…your muscles, my muscles, our muscles…want to move!  They want to be stretched, strengthened, and energized.

Meanwhile, multiple sclerosis wants to painfully wretch, tighten, and shorten your muscles till they cry “Uncle.”

So we must have a plan to keep that from happening. We must prioritize our needs to keep our bodies strong, loose, and resilient.

We must make our health the number-one, numero-uno priority. We must give our body what it needs and craves. Give it movement. As much as you can. Reach. Reach further. Now to the other side. Twist. Turn. Then do it again. Get up. Walk if you can. Extend your arms. Move your legs. Wiggle your feet. Do it standing or sitting – it doesn’t matter how because anything counts. Every little movement helps. It doesn’t have to be intense. And you don’t need a gym membership. You just need to keep moving those muscles. All 640 of them. The more your muscles move – the better they move.

MS is a bugger that doesn’t give up. So neither must you.

Make time for you and your muscles. Two minute here, ten minutes there. Move during the commercials while watching television (You never like them anyway!).

Make it your first priority. You will feel better. Feel positive. Muscles will loosen and let the energy flow throughout the body.

Remember, movement means mobility.

I’m so glad we had a chance to talk. Now we know what we need to do. So go ahead. Get started. Get going and move!

*Doug writes about MS and other nonsense with a humorous twist at myoddsock.com.

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MSAA’s Mission with the Mouse

By Gina Ross Murdoch, MSAA President & CEO

Recently, MSAA embarked on a new initiative of endurance events including the Rock ‘n’ Roll Marathon Series, Tough Mudder Race Series, and the Disney World® Marathon Weekend presented by Cigna®.  This was an opportunity for us to engage people across the country in our mission to support the entire MS community.  Wanting to jump in and be part of this important effort, I signed up for my third half marathon at Disney World.

Team MSAA-Disney included fourteen runners participating in the 5K, 10K, Half Marathon, Full Marathon and, for two overachievers, all four consecutively!  I selected the half marathon which is 13.1 miles. Training for the 13.1 mile half marathon is a grueling process that takes dedication and stamina. However, living with the uncertainty and challenges of multiple sclerosis is much more difficult than training for any endurance event.  As one of the participants, I sent out my fundraising emails and received some wonderful donations.  I was proud to be a full member of Team MSAA.

As my inspiration, I reached out to board members, volunteers and friends across the country to add their name to my running singlet.

As you can see, I carried the names of so many people who struggle every day with multiple sclerosis.

Race weekend – let’s do this!

Ready to run, tutu and all!

We begin at a very, very cold start with 60,000 Disney runners including 13 Team MSAA members.

Rosa and Ramón in their Team MSAA shirts stopped by for a photo before we take off

The fireworks explode and we are on our way!  Throughout the run, I see elite athletes running easily and I see others digging down deep to finish this challenge.

Here I am at the 3-mile mark with Nemo and Dory – still a long way to go!

I reach the 7 mile mark and I am tired.  I grab a drink and look down at my singlet and see the names of so many who are tired every day and not just this one day.  I think about their stories of their diagnosis, their journey, their challenges and they inspire me to continue on in their honor. As you can see in the photo below, those living with multiple sclerosis, those caring for a loved one living with multiple sclerosis, the entire medical community that has dedicated their lives to research and care, propelled me through the next 6.1 miles and I cross the finish line!!

Victory! I crossed the finish line inspired by all of the members of the MS community.

On Sunday, I am cheering for Team MSAA members Bekah, Rachael, and Michelle who are participating in the full marathon. Bekah and Rachel are completing the Dopey Challenge which consists of a 5K, 10K, Half Marathon, and Full Marathon over the four days of the event.  They run in honor of their father, Dan, who lives with multiple sclerosis.

Here’s a picture of Rachael and Bekah after they completed the Dopey Challenge on Sunday. What an incredible accomplishment!

I received texts along the way as they cross milestones of 5K, 10K, 20K, 23 miles, and come ever closer to that 26.2 mile marathon finish line.  I received the final text that all three runners have now completed the run and are receiving their well-deserved medals.  The amazing thing is that Bekah, Rachael, Michelle and the entire team were thankful to have the opportunity to participate in this event and support our mission. It is the members of the MSAA staff who are honored and humbled by their efforts over so many months to physically train, mentally prepare, and financially support our mission.  I could not be prouder of my fellow Team MSAA members who participated in everything from the 5K to the Dopey Challenge.  You are inspiring, amazing, and incredible people!!

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Bisquick Quiche

This Bisquick Quiche Recipe was a Bisquick recipe on a box at some point, and I still use it and love it every time I make it for my family.

This recipe is simply the easiest and best quiche ever! It can be an easy vegetarian recipe too, just add your favorite veggies (minus the bacon)!!

Ingredients

  • 12 slices of bacon, cooked, drained, and crumbled
  • 1 Cup Swiss cheese, shredded (about 4 ounces)
  • 1/3 Cup onion, diced
  • 2 Cups milk
  • 1 Cup Bisquick
  • 4 Eggs
  • 1/2 Teaspoon salt
  • 1/8 Teaspoon ground black pepper

Instructions

  1. Preheat your oven to 400 °F.
  2. Lightly grease a 10-inch pie plate.
  3. Sprinkle the crumbled bacon, shredded cheese, and diced onion evenly over the bottom of the pie plate.
  4. Beat the eggs with the salt and pepper and then stir in the milk.
  5. Add in the Bisquick and beat until smooth – it must be smooth to work.
  6. Pour the liquid mixture over the ingredients in the pie plate.
  7. Bake in the preheated oven for 35 minutes or until a toothpick inserted into the center of the quiche comes out clean.
  8. Let cool on a wire rack for 15 minutes.

Enjoy!

 

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I Need To Up My Game: Prioritizing Needs

By Stacie Prada

When I feel great, there’s no need to change what I’m doing.  Following new and improved advice may actually break the complex formula of nutrition, fitness, and lifestyle that keep me in good health. If I’m not feeling well, figuring out what I need and prioritizing it within the mix of all my other needs becomes an issue.

We subconsciously prioritize and adjust our behavior to meet our needs all the time.  For me the demand to put effort into prioritizing needs comes when I don’t feel well.  I’m stressed, something hurts, or some part of me isn’t working as well as usual.  It could be one small thing that is snowballing into a big issue, or it could be a big issue that’s easy to identify yet overwhelming to fix.

This past year, my pain level increased to a level that was affecting sleep and causing debilitating discomfort.  I researched possible causes and tried stretching, massage, supplements and rest. It helped a little but not much.  I went to a massage therapist who worked the muscles, and it caused almost unbearable pain for days. Through my neurologist, I tried medication and was told I’d need to take it for a few weeks before the side effects would mellow out.  I gave it a good try, but I could see it wasn’t going to be a good long-term solution for me right now.  I obtained a referral for physical therapy, and there I had someone work with me to specifically design a fitness regimen that will address my nerve pain. She assessed my personal condition and through trial and error pinpointed the cause of the pain.  She helped me devise a mix of exercises that will increase my strength, improve my balance, and hopefully reduce the nerve pain I’m living with.

Each step of the way, I had to make my health a priority while still doing everything else my life requires.  While under her care, I dutifully did all the exercises she prescribed.  It was tough doing it all, and it wasn’t something that I could sustain.

When I think about doing everything the physical therapist advised, I get overwhelmed. I want to do it all, but it’s too much right now.  I anticipated this and specifically asked her what the minimum daily fitness activities would be so that I could start there.  This took being honest with myself and with her.  I had to be open to being judged negatively and accept I’m not going to be the model patient I’d love to be.

I already have a minimum fitness routine I do every day and have been doing for years.  Seriously, I missed eight days two years ago and none last year.  I thought I was doing great, but it wasn’t enough to protect me from having problems develop.  So now I’m working on modifying my routine to deal with my changing body. I’m incorporating the minimum she gave me, and I have a long list of things to add when I’m ready.

I’m not doing everything she gave me, but I’ll get there.  And I like having the guidance for what to do when I’m ready to up my game. She may or may not approve of my approach, but I’m the one who knows me and lives with the consequences.

It feels like slow change, but it’s not no change.  I’m in it for the long haul and doing what I can as I can.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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This Year I Will…

Oh the New Year…. Everywhere you see signs, commercials, social media posts and billboards advertising “New Year, New You.” We all make resolutions to get to the gym, cut out the junk food, meet Mrs/Mr Right, get out of debt, budget better and there is nothing wrong with any of those things!! We could all use a better budget and probably to eat less simple carbs… especially after the holidays. But this year be encouraged to not create a brand new you, but finesse the you that’s already there and Do Less or Do More. Radical changes that turn things on their heads usually tend to end in disappointing failure which can cause even the most devote of us to doubt if we are ever going to be capable of change.

But what if instead we took stock of what we wanted, were honest with ourselves…not with our best intentions but with our real selves and instead of resolutions made Less/More lists. This year I have decided to Waste Less… of not only nature’s resources but also my time and energy on things that are not good for me. I’ve decided to Judge (both myself and others) Less in order to extend grace and understanding, to be Hurt Less in that every painful situation should not derail me continuing to live my life to the best of my abilities. To Doubt Less in my abilities and talents, in my own worth and potential and to Fear Less… to let fear have it’s rightful place but not take over from me the joy and growth that new experiences and tough situations can bring forth. I also decided to Reflect More on my surroundings and my place in the world, to Care (for both myself and others) More in that it’s ultimately my responsibility to be there for myself and I can extend that care to others until they are able to do so for themselves also. I decided to Explore More and Read More of the world around me in order that I can Grow More from experience and Learn More from others. I also decided to Accept More both the things I cannot change but wish I could, the people I encounter who are who they are and my own shortcomings and missteps. I have decided to Reach Out More to others, Connect More with the community and people around me and Love More in situations that I could use or might even feel called to insert hateful words, closed ears or turned backs, to decide that in spite of everything I will Love More.

I don’t need to be a New Me in this New Year… I needed to take stock of the things most important to me, evaluate and be honest about the things and people in my life and what I want from my life in order to come to the decision that this year…. This will be the year of More and Less of what I decide to make it. So what will you make it??

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Priority Number One: You

At the beginning of a new year, many people make resolutions for ways to make this calendar year better than the last one.  Some of the most common resolutions made at the beginning of the year include: dieting, exercising more, learning to budget money better, spending more time with friends and family, and learning a new language.  One resolution you might consider is learning to prioritize your own wants and needs, especially when it comes to living with MS.

It can feel selfish to focus on yourself and your own needs, but that doesn’t make it unimportant. We are able to give more of ourselves to the people and things we care about when we have first taken care of our own bodies and wellbeing.

Living with a chronic health condition like multiple sclerosis can force you to become better attuned to your body’s needs as the severity of your symptoms change.  Each person knows their body better than anyone, and knows their limitations (whether we choose to acknowledge them or not).  If you feel you need time and space to focus on a particular physical, emotional, mental, or spiritual need this year, make the time to do so.  Family, friends, hobbies, work, social life – they are all important, but so is your overall health and wellbeing.

This year, challenge yourself to create a new habit – choose at least one activity a day that helps you focus on self-care (and let us know in the comments how you are doing it)!

For more information and strategies for overall wellness this year, check out MSAA’s Overall Wellness section on their website.

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New Year, New Beginning

As it turned midnight on January 1st of 2018, I think a lot of people, including myself, held hopes that this new year would bring with it more optimism and hope, especially more so than its previous 2017 counterpart which brought controversy and devastation throughout the year. Entering a new year can mean new beginnings for things and more possibilities, but most importantly, a chance to reassess what your needs are and how to fulfill them. For some this may be physical needs as it relates to the body and addressing medical issues or concerns. For others this may mean focusing on emotional or spiritual needs and how this influences day to day and self-care. No matter what the needs look like, the beginning of a new year represents another fresh start to prioritize things and to take care of you.

It’s not always easy to do this with the chaos each day can bring, but that’s why you prioritize, so certain things take precedence over others when there’s not enough time in the day for everything. It may come down to making to-do lists with tasks and goals and crossing things off one by one, or setting one specific need as a goal to focus on for the week or entire month. The method of prioritizing needs doesn’t have to be perfect and it surely won’t look the same for everyone; it’s going to be tailored to each person and what their specific needs are. But it all begins with an act of self-respect; to increase awareness of what it is that’s needed and telling yourself you deserve it.

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January 2018 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2017-18 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

Mary Winton – Colorado Springs, CO
New Skates

About the Artist:
“My life has always been absorbed with the creative arts. After receiving a degree in graphic design, I was fortunate to have had a long and fulfilling career in the art field.

Then I was diagnosed in 1995 with multiple sclerosis.

I was totally unaware of what kind of journey this disease was going to take me. This journey is one I’ve turned into a positive. It has shown me how strong and durable I can be.”
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