What YOU Wish People Knew About MS-Fatigue

Posted on November 30, 2016 by MultipleSclerosis.net

MS-related fatigue is not “regular” fatigue, but it’s hard to help people who don’t have MS understand what this type of fatigue is really like. We recently shared an article by one of our community experts outlining some things others may not know about having MS-related fatigue. So many of our community members shared their feelings with us, so we wanted to capture some of their thoughts on what they wish others understood. Here’s what they had to say.

Wishing Others Would Simply Understand

“I know I work, and by the time I get off, my body doesn’t want to move, much less think. I can be somewhere and be just as lost because of the fatigue. I feel your pain that if you don’t have MS you don’t understand”

“Thank you so many times over. I started crying reading this. I have tried so many times to explain the difference between being tired and fatigue, I feel to no avail. My fiancé tries to understand but gets so frustrated with me when all I want to do is sleep”

“I have had this issue since my diagnosis, and like you said, when I say I am tired, people tend to go straight to their own tiredness and talk straight over me if I want to explain”

Cognitive Fog Troubles

“I am one of those who still work, but the stress of the job causes brain fog and cognitive issues and mental exhaustion. It’s not that I can’t do my job, it just takes me longer”

“More and more it’s not just physical fatigue, but a mental fatigue as well. My once very capable brain slows down to a point that the simplest math task or organization plan has to be figured over and over again until I’m annoyed and frustrated with myself”

“Spot on! I often find my brain sending me messages to give up. I can compare it to the feeling of sprinting until you can’t sprint any longer. Your brain tells you to stop, give up. The same is true for me with MS. My brain is telling me to give up”

Frustrations, Life Changes, and Never Giving Up Hope

“I always get the, ‘you’re just getting older.’ Hello!! I’m 34, how’s that old? Isn’t that like the prime of your life? People run marathons well into their 50’s!”

“On day after working, my then 10-year old son asked me to play a board game, I replied, ‘I’m too tired.’ He shot back, ‘mom you’re always too tired.’ That broke my heart”

“I can feel great, go out to dinner, order my food, and by the time it gets served, I’m so fatigued I don’t feel like picking up my fork to eat”

“You have the fatigue, but you still try to do things. It takes twice as long, since you drop things or are off balance. This leads to frustration, then anxiety, and full-blown stress. And your mind keeps playing the tune, ‘I wish I could feel good for just one single day.’ And to top it all off, it’s a beautiful day and you just want to enjoy it. The day in the life of a person living with MS”

“Remember that MS is not what defines us. We can still have a good life if we remain positive and keep trying. We CAN NOT let it get us down. We are all better than that. And for me, I try to remember that I am not in this alone, and sometimes that helps me get through the day… In between naps!”

Thanks to our community for your awesome responses. Keep sharing with us, and with each other, how you handle MS-related fatigue, and what you wish others knew about your struggles!

No more stress? Is that even possible?

Posted on November 28, 2016 by MSAA

By Penelope Conway

Stress is not a good combination with Multiple Sclerosis. I hear all the time how stress needs to be limited to keep from triggering an exacerbation, but how do you do that in a world full of “I want it now” people and “it can’t wait” situations?

There are hundreds of lists on the internet explaining what you can do to avoid stress, but listing things out and doing them are two different things. Then if you add MS into the mix of things, it seems an impossibility.

Maybe your day starts something like this…

You wake up in the morning to a busy day planned. You didn’t hear the alarm clock earlier so you are already being rushed to get your day started. It’s early, you’re exhausted and your body isn’t cooperating. You take a shower, and even though you did every cool down technique you know, your body is simply too weak to keep going at the fast pace you have set for yourself.

You take a moment to rest then push on to get dressed so you can get out the door to make up for missed time. All the while, playing through your head is a rundown of everything you must do today. You have lists created, app alarms set on your phone to remind you of your time constraints and post-it notes scattered everywhere.

You do your best to hold back your frustrations but before you have even left the house to begin the day, you are feeling overwhelmed and defeated. Somehow MS just doesn’t fit into a busy day and somehow you always seem to forget that tiny little fact.

The unexpected happens much more often now that MS is a part of your world. You get tired faster, weak muscles limit your functionality, your vision messes with your ability to complete even the simplest of tasks, dizziness and vertigo trip you up, and your thinking gets all muddled in the process. It’s hard planning for the MS unexpected. I always say a life with multiple sclerosis is like a box of chocolates…you never know what you’re gonna get. (Thanks Forest Gump for the inspiration.)

I have discovered that stress makes you extremely tired and can cause MS to worsen, but it’s stressful to avoid stress so you end up stressed out anyway. It’s really not easy trying to avoid stress. Ugh…just thinking about it is stressing me out.

So how do you fit a life with MS into a stress free list found on the internet? Well, for me that’s an impossibility. It seems MS doesn’t like lists or plans. It kind of has a mind of its own and doesn’t seem to want me to know ahead of time what it has in store for me throughout the day.

When life become overwhelming, and many times even before it gets to that point, I find that I need to take a moment to step back from all my commitments, work, and obligations. I need to take a moment to pause and re-examine everything. Literally.

Is there anything I could change or remove from my day that would help ease the load? Do I really need to vacuum the house today, tomorrow or even next week? If I wait and take a shower before I go to bed rather than when I get up in the morning, will it help? Can I recruit someone to pick up a few things from the store for me so I don’t have to go? Will the world fall apart if the laundry isn’t finished?

You are more important than the chaos that surrounds you and way more important than the stress that it can cause. Work on changing your workload bit by bit, little by little, moment by moment. You won’t be able to quit everything (which I happen to think would be nice to do at times) and you won’t be able to stop the world from spinning out of control, but you can make a positive change in your own life.

Take time to slowly work your way out of those over-commitments by finding others willing to step in and help. You may need to juggle schedules around and say no to people you normally wouldn’t say no to, but in order to simplify your life and relieve the pressures weighting you down, you have to do it. It’s not an option.

Do what you can today and leave the rest for another day. Take one step closer to living stress free, and before you know it you will be enjoying your life….even with Multiple Sclerosis.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (http://positivelivingwithms.com/) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

Happy Thanksgiving from MSAA

Posted on November 24, 2016 by MSAA

Wishing you and your family a Happy Thanksgiving from all of us here at MSAA!

To send a Thanksgiving eCard to your friends and family, go to support.mymsaa.org/holidayecards.

Please note: MSAA will be closed on Thursday, November 24th and Friday, November 25th. We will be back in the office on Monday, November 28th.

Happy Thanksgiving!

Working Together with the Spasticity Alliance

Posted on November 23, 2016 by John MSAA

By Kyle Pinion, MSAA’s Director of Advocacy and Public Policy and Southeast Regional Director

Have you ever woken up one day and found that your legs have painfully, and involuntarily, tightened? Or perhaps you were sitting in your favorite chair one afternoon while watching the football game and in the middle of a great play realized that your arm muscles clenched in a way that was incredibly uncomfortable. Those who are living with the progressive forms of multiple sclerosis are likely to understand this symptom all too well: spasticity is a tightness of the muscles, typically occurring in the legs, groin, and buttocks, though not exclusive to just these regions. While treatable in ways that can potentially reduce its effects, this symptom of the disease can be very debilitating and contribute to disability.

What you may not be aware of is that those living with MS are not alone in experiencing this troubling manifestation of their disease state. Many other condition-based populations see the effects of spasticity first-hand, such as those who have suffered a stroke, people living with cerebral palsy, and even those who have dealt with traumatic brain or spinal cord injuries. As such, advocacy organizations that represent each of these conditions recognize that greater amounts of information and resources are needed to help people living with spasticity grasp a better understanding of its effects and how to best seek treatment. To that end, the Multiple Sclerosis Association of America, United Spinal Association, United Cerebral Palsy, National Stroke Association, and the Brain Injury Association came together in June and initiated the planning process for what would turn into the Spasticity Alliance.

As MSAA’s representative for our regular Alliance meetings, it’s been fascinating to learn about the larger scope of spasticity’s effect on other disease states beyond our own organization’s purview. I’m so thankful to be able to share not only resources that have proven to be mutually beneficial, but also stories of people who experience this troubling symptom on a day-to-day basis.

When the Spasticity Alliance website launched in July, the outpouring of support from both the patient and professional communities was utterly overwhelming, as many deeply appreciated this pooling of efforts by advocacy organizations to provide resources and educational material for those living with this challenging and painful manifestation of these individual conditions – a manifestation that is all too little discussed. As we close out 2016, we’re looking forward to the further growth of the Alliance website, with very exciting plans on the horizon to make it an even more engaging and informative experience for our clients when they visit.

In the meantime, if you or someone you know has experienced spasticity, please visit the Alliance’s site at spasticityalliance.org. If you have any further questions regarding issues related to this symptom, please feel free to reach out to our Client Services department at (800) 532-7667, ext. 154 or via email at MSquestions@mymsaa.org.

Additionally, if anyone living with MS, or their family members or friends, would like to share their story for the Alliance’s site, please do not hesitate to reach out to MSAA and we’d be happy to discuss this with you further. Your stories really can make a difference through encouragement, fellowship, and education.

New Recipe of the Month – Gram West’s Pumpkin Pie

Posted on November 21, 2016 by John MSAA

Today’s recipe is from our dear friend, Lynn, in South Jersey…Lynn writes:

At Thanksgiving, more than any other time of year, I’m reminded of my Grandmother (“Gram”) who passed away from a neurological condition in 2010. Growing up in South Jersey, I only got to see Gram twice a year: once when she and my grandfather came to visit us in NJ, and then again when we visited them for Thanksgiving. I always remember spending time with just her in the kitchen, making pumpkin pies to enjoy after our Thanksgiving meal. It was “our thing,” and we always loved watching our family fight over who got the biggest slice of pie. This time spent with my Gram is something that I will always treasure, and to this day, I honor this memory by making pumpkin pies for any winter family holiday, using the following recipe which she handed down to me.

– Lynn, in South Jersey

Gram West’s Pumpkin Pie
(Makes 2 pies.10 minutes to prepare, 70 minutes to cook.)

Ingredients:

2 unbaked pie crusts (I use Pillsbury Pie Crusts)
4 eggs, beaten
1 can (29oz) pumpkin OR 3 3/4 cup freshly cooked and mashed pumpkin
2 cups firmly packed light brown sugar
2 tablespoons flour
1 teaspoon salt
1 tablespoon pumpkin pie spice
1 heaping teaspoon cinnamon
1/2 teaspoon ground nutmeg
1/2 teaspoon ground ginger
1/2 teaspoon ground cloves
12oz can evaporated milk
12oz regular milk

Directions:

Preheat oven to 425 degrees.
Lay pie crusts in pie plates, and flute the edges if desired. Put each pie plate onto a small cookie sheet (this makes for easier insertion and retrieval from the oven when you bake them). Cover the edges of the crust with a pie crust shield. If you don’t have one, you can use aluminum foil. This will help keep the crust edges from burning.
In a large bowl, combine the eggs and pumpkin.
Blend in the brown sugar, flour, salt, and all of the spices. Mix well.
Add the evaporated milk, then fill the can with regular milk and add that. Mix well (be careful, it splatters easily).
Pour the pumpkin mixture into the pie crusts.
Bake at 425 for 25 minutes.
Reduce heat to 350 degrees and continue baking for 40-45 minutes, until a knife inserted near the center comes clean. (Depending on your oven, you may need to bake longer.)
Cool the pies. Once cool, store in refrigerator.

*We hope you enjoy our Recipe of the Month selections on MS Conversations. Just remember: these entries may not necessarily be a part of an MS-specific diet; these are simply recipes compiled from MSAA staff and friends either from their own family recipe collection or based on recipes we think you might enjoy. As always, make sure to consult your doctor about any food or nutrition questions as they relate to your MS.

Last Chance for Thanksgiving eCard Vote

Posted on November 18, 2016 by MSAA

Have you voted yet for your favorite MSAA Thanksgiving eCard?

There’s still time to cast your vote for your favorite holiday greeting! Voting closes on Friday, November 18th at 3:00 pm (Eastern) so make sure you get your vote in at support.mymsaa.org/voteforcard!

Didn’t get a chance to vote? No problem! We’ll be announcing the winner the week of Thanksgiving on Facebook and via email.

Be the first to know which Thanksgiving eCard was triumphant by following us on Facebook or signing up for email.

Stress Management Tips

Posted on November 16, 2016 by Melissa Young

The holiday season is fast approaching. This time of year brings lots of great things like family traditions, fun activities, and opportunities to celebrate with friends. Unfortunately, holidays can also be stressful and unpredictable. Dealing with fatigue and managing your MS symptoms can add to your stress if you aren’t careful.

So, here are four tips to help you manage the stresses of the season so you can have happy holidays!

Plan ahead

Planning your holiday schedule of activities in advance can help to reduce anxiety and limit fatigue. Planning ahead will also help you identify the things you really want or need to do and weed out anything unnecessary or unpleasant.

Relax

It is important during the holidays to take time for YOU. Even just a few minutes to relax and recharge can reduce stress levels and help you cope with all of the chaos.

Eat healthy

We all know that holidays bring sweet and savory treats, late nights and unusual schedules. Be sure to stick to a healthy eating plan and reward yourself by having a few treats during the holidays.

Support

If you are feeling lonely or stressed, make sure you have a close friend, family member or someone you trust that you can call on. Maybe attend a local support group or call the MS Friends helpline to talk about how you are feeling. Multiple Sclerosis Friends: 1-866-673-7436

The holidays don’t have to be stressful. Take a step back and organize your schedule for the holidays, and make sure to take time for yourself. By doing so, you can enjoy time with family and friends.

Recipe of the Month-Broccoli and Stuffing Casserole

Posted on November 14, 2016 by Angel Blair

MS Conversations Recipe of the Month

So, it looks like we’re now in full swing of the fall season everyone! And with the holidays quickly approaching it’s that time of year for some tasty food concoctions. Below is a recipe that is sure to fill a hearty appetite and make them ask for seconds. Enjoy!

Ingredients:

2 pounds fresh broccoli florets
2 eggs, beaten
1 onion, chopped (optional)
1 (10.75 ounce) can condensed cream of mushroom soup (or you can use cream of broccoli/cream of celery soup)
½ cup mayonnaise
10 ounces dry bread stuffing mix
½ cup butter, melted
1 cup shredded cheddar cheese

Directions:

Preheat oven to 350 degrees. Lightly grease a 9×13 dish.
Cook broccoli in a large pot of salted boiling water until just slightly tender. Drain.
In a large bowl, combine eggs, onion, mushroom soup and mayonnaise.
Place a layer of broccoli in the prepared baking dish. Pour mayonnaise sauce over broccoli. Spread stuffing mix over the sauce. Drizzle butter or margarine over all and top with shredded cheese.
Bake at 350 degrees for 30 minutes. Serves 12 people.

Happy Eating!

S-T-R-E-S-S, what does that spell…?

Posted on November 11, 2016 by Angel Blair

As if the whole year round doesn’t bring enough stress, with the holidays approaching and busy end of year happenings, stress can rear its ugly head two-fold during this time. Stress can have negative effects on anyone’s health, but especially for those living with a chronic illness like MS; this beast can cause additional challenges on other symptoms. That’s why it’s so important and crucial to try and reduce stress when you have any control over a situation and it’s possible to have influence over it. Now this isn’t always the case, because as we all know, life tends to be a tad unpredictable at times so control isn’t always a possibility. However, when you do encounter those moments to change things yourself, make it worthwhile and significant to your benefit. So how can you try to manage stress?

S– Stay flexible. When things occur that you can’t predict or plan for, the stress we place on ourselves as a result can have real consequences. So try to stay open to change; sometimes it may bring good results.

T– Talk to others about the stress you’re feeling. Opening up about what’s going on may reduce the inner stress you’re experiencing if you keep things bottled up inside.

R– Rest and relax when you’re able to. Your body is stronger at combating stress and illness when it receives the rest and care it requires.

E– Enjoy simple pleasures and special moments when you can. Life goes by so fast, so make sure to take in the joyous times and happy occasions to hold onto if and when stress surfaces again, it can aid in the fight.

S– Socially connect to others who may have had similar stressful experiences and challenges—it can help to learn some different ways to cope and to also know you’re not alone in this.

S– Slow down. There’s no need to try and act like a superhero constantly. We are only human. Take time for yourself, do what you can and are able to, and don’t place unrealistic expectations on yourself. You’re already doing your best!

What are some ways you try to reduce stress?

Make Life Easier To Get More Done and Lessen Stress

Posted on November 9, 2016 by MSAA

By Stacie Prada

Everyone I know feels overwhelmed at times. They forget things, and they accomplish less than they’d like sometimes. I’m comforted when I have an organized life and am not worried that I’m forgetting something. I like to create systems that support me in being organized, simplify my life, and make life easier so that I can exert energy on the good stuff.

To reduce my stress level, frequently I put effort into reducing the number of decisions I need to make and the quantity of things I need to remember. If I don’t have a method for remembering it, I’ll get in a thought loop reminding myself to do it later. After a while, it can be crazy. It’s wasted energy that could be put to better use.

Streamlining things I do repeatedly makes them easier, less stressful, and more likely to get done. Making decisions takes energy. The more decisions I make in a day, the more energy it takes to get through the day. Decision fatigue is real, and when MS fatigue already affects a person’s health it can really lower their quality of life. Given that I want to be productive and maximize what I can accomplish, reducing the number or decisions I need to consider and decide repeatedly frees up energy and time for other things.

Simple ways I reduce the number of decisions daily life requires and ways I make decisions when I’m not in a time crunch are as follows:

Lay out my clothes the night before so that I don’t need to figure it out in the morning when I have a time limit for getting ready. I include my underwear and socks so everything is ready for me to get dressed and there are NO decisions to be made. My shoes and coat are ready by the front door, and so are my keys.
Create a packing list for things I do or places I go repeatedly. I refer to lists frequently before I go on a bike ride, take a long walk or hike, or go to the pool.
When making meals, make extra. Leftovers are easily one of the most time saving and decision reducing methods for reducing stress. Think about how often you ask yourself what to make for dinner or your next meal.
Automate bill payment when possible. For things like electrical or phone bills, set up bill pay so that they automatically get paid with a credit card. I can pay multiple bills in one sitting when I pay my credit card bill. I also don’t need to worry about forgetting to make a payment.

Lots of times it’s not about being unable to do something I want done, it’s about not remembering to do it. It’s easy to forget things if I’m out and about or get distracted at home. Creating memory triggers helps. Check out these easy ways to stay focused:

Make reusable flashcards. I use 3” x 5” index cards for recurring tasks or habits I want to create. When I remember I need to do a recurring task and can’t do it immediately, I’ll pull that card out or make a new one. I’ll place it somewhere I look frequently. For me it’s the kitchen counter or dining table. It’s a time saver and memory jogger. These reminders are especially great when you share your home. Family members will realize that laundry needs to be done and may help without you asking. They’ll also appreciate that you’re doing things that contribute to the home when otherwise they may not have noticed.
Set a timer: When cooking or doing things where I may not hear the buzzer, I’ll set a kitchen timer or phone alarm. This is great for things like laundry, cooking that requires pre-heating, or pulling something off the stove. It’s not a failure to need to use these tools. I know people with perfect cognition that get distracted and nearly burn the house down by putting something on the stove and forgetting. The timer is a necessity for reminding me I turned on the oven or put a load of laundry in the wash. I don’t necessarily need to have a reminder card for that (even though it doesn’t hurt), but there are instances when the timer goes off and it takes me a moment to remember what it’s for.
Leave myself a note: When needing to do something later, I’ll put a note in a hot spot I see frequently. It may be a post=it left in the car, at home or on my computer monitor at work.
Put appointments and reminders on the calendar in a mobile phone with an alert.
Create lists for what I need to bring for things I do repeatedly. I have lists for going for a walk, bike ride, leaving town, and getting back from out of town. I also have a pretty standard list of grocery items that I frequently eat. The point is to ease up on the number of times I need to figure out the same thing.

Often the difference between feeling overwhelmed and feeling like things are doable is one task or obligation. If you’re stressed out and having a hard time getting things done, be brutal. Remove things that don’t absolutely need to be done the way you’re used to doing them or would prefer to have them done. What’s the minimum necessary to get it done, and when is the deadline? What can be delayed until tomorrow, next week, or next month? What doesn’t need to be done by you or at all?

Get over the feeling that it’s embarrassing or not okay that you need reminders. I once had a family member laugh at me because she saw my reminder on the counter to “pack” for a trip. She thought it was absurd that I was reminding myself to do something that was obvious. Yes, it was needed and obvious, but my simple reminder kept me focused and less stressed.

I’ve learned that a single tracking or organization tool isn’t going to work for everything I want to remember or do. Just like Facebook, Instagram, Pinterest, email and texting have different strengths and times where they’re appropriate, organization is a compilation of lots of little methods. Think about what works and why it works for you. Then build on that. Where do you need to remember things and where do you frequently look? Make a system that works for you. It’ll be unique to you, your life, and your priorities.

*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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