Planning Around the Holidays

As the holiday seasons steadily approach, so do the holiday events and planning. Perhaps you have already received an invite or two, or are a part of an elaborate e-mail chain or Facebook group. For some, the mere thought of having to plan around the holiday season is stressful; and for those living with MS, an often unpredictable disease, the stress burden can increase even more.

So how do you tackle the holiday planning in a polite and self-determined fashion, while making sure to keep your health as a priority?

  1. Recognize your limits and be honest with yourself. Sometimes we are our own worst enemies when it comes to planning. We want to be able to do everything, but realistically, it is not in our best interest. Knowing your limit and sticking to it can help alleviate the overwhelmed feeling that is commonly seen in planning events.
  2. Have a game plan. Use a calendar to keep track of events and use this to track tasks that must be completed for these events. For example, you signed up to bring a side dish to a friend’s holiday party; write down the day of the party, and plan ahead the grocery shopping day and cooking day and build those into the calendar. This will help avoid the last minute day of dash to the store that often leaves you too tired to cook or even go to the party!
  3. It’s OK to say no! For some, this is an on-going struggle; but saying “no” from the beginning of planning is a lot easier than the last minute “I can’t make it”. Place yourself and your health first, and build around that. Use the prior two steps to build a holiday plan, and know which events to say no to.

Eleanor Roosevelt said “No one can make you feel inferior without your consent.” When having to say no to an event, don’t allow others to make you feel bad about yourself because you cannot attend. By choosing to place your health and wellbeing on a pedestal, down the road one day, you will see what was actually important and thank yourself.

What tips and strategies have you established to help manage holiday planning?

Share Button

It’s Beginning To Look a Lot Like…

The holidays…that’s right. They’re quickly approaching and if you’ve seen any advertisements or store displays you’d think it’s been here since the start of October. Right about mid-November straight into January are some of the most festive times of the year. Gatherings, parties and decorations as the sounds and smells of old holiday classics fill the air. Most people think of this time of year and are instantly thrown back to childhood memories of parades, waiting to open gifts, big family dinners and traditions that predate you. They break out the recipe cards and address book in anticipation of all that the holidays bring.

This year before the holidays actually start (I’m telling you they should begin the Monday before Thanksgiving not the end of September) take some time to look at how you have celebrated the season in the past. Do you gather with family around a warm table and welcome meal? Get together with friends who are from far and wide to celebrate the connections you’ve built over the past year? Do you lend a hand and volunteer for an organization? Spend every waking moment coming up with just the right gift? Plan the details from décor to the meals to the stamps for your cards? Or maybe your holidays are quiet and calm.

keep-calm-holidays-are-comingYour holiday doesn’t have to look just like mine or like anyone’s for that matter. It doesn’t have to be a Norman Rockwell painting or look like the commercials you see for Pillsbury to be wonderful. There’s no one way to celebrate this time of year. Maybe this year your celebration will be completely different than years past and that’s ok. Take the time before the holidays begin and give yourself permission for this year to be this year. Circumstances may be different and life may not look the same. Take a moment to feel any losses and acknowledge the shift. Take in the changes and celebrate even the smallest of victories and good memories.

As the weather begins to turn cold and the days seem shorter take a moment to think back and find those things you most want to make part of your holidays this year and celebrate them.

Happy New Year… oh wait, we aren’t there yet 😉

Share Button

Tips For Managing MS Fatigue

Fatigue is one of the many symptoms of multiple sclerosis. It affects the majority of individuals with an MS diagnosis, and can be challenging to manage. According to Can Do MS, there are many helpful and practical things you can do to help boost your energy and improve your daily activities.

Can Do MS sponsored a webinar in October titled, “Tired of Being Tired? Tips, Tools & Techniques to Keep You Going.” This webinar can be watched on the Archived Webinar section of their website.

To summarize, Can Do MS recommends the “4 P’s” as a potential solution for managing fatigue:

  1. Planning:  Consider using a day planner or phone app to help manage what you may have going on. This could help you track doctors’ appointments, medication regiment, meal planning and shopping trips, and ensure you do not try to do too much on any one specific day.
  2. Prioritizing:  If you are feeling tired on a particular day, decide what is important or must get accomplished and what can be put off for another day. Do those things that need to get done and give yourself permission to push the other tasks off for a day when you have more energy.
  3. Pacing:  This strategy will help prevent you from feeling overwhelmed when at work. If you expect a task to take an hour, don’t pressure yourself to get it done in an hour. Instead, give yourself an hour and a half and take a ten minute break for every 20 minutes of work.
  4. Positioning:  This involves rethinking the location of physical things in your life to make your daily activities simpler and more efficient. One example of this would be placing everyday cooking utensils in a convenient, easy to reach place in the kitchen so you do not have to exert yourself every time you reach for them. Making simple adjustments may help you save some energy for use at other times throughout the day.

In addition to managing your fatigue, it might also be a good idea to track your activity to determine what is causing you the most fatigue. This better understanding of your fatigue could help you modify your activities and help you conserve energy throughout the day. MSAA’s free mobile app – My MS Manager, now has a newly added fatigue scale to help you track and measure your fatigue. The app also allows you to connect to physicians and other members of your care team via the app to securely share your progress and reports. Click here to learn more and download the free app.

By following the “4 P’s” and tracking your fatigue, you will hopefully have a better understanding of what activities affect you the most and an easy tool to you manage your daily fatigue better.

Share Button

Election Day and Disability Voting Related Concerns for the MS Community

While most of the media has already turned their attention to the upcoming Presidential Election, it’s worthy to note that there are still important issues and elections occurring this Election Day, Tuesday November 3rd.

Voting provides us the opportunity to weigh in on the issues that are most important to us as well as how our hometown and state are governed. For those living with disabilities, following and supporting elected officials with similar goals in mind is critical. For example, many who rely on public transportation as a means to get around town should know which officials support expanding transportation services, versus those who may plan to shut them down.

We have the power to create change through our votes. While on a local level it may seem insignificant, state level policies have a way of affecting those living with disabilities. Disability Rights organizations often open up their phone lines on Election Day to help answer disability related voter questions. Contact your local Disability Rights group to learn how you may be affected in this upcoming election.

Having an issue getting to the polls? Visit our Accessible Voting blog for information and guidance around access issues.

Happy Voting!

Share Button

Wellness: The Importance of the Mind

By: Meagan Freeman

When I was diagnosed with MS in 2009, I never would have imagined that my greatest challenge would be overcoming my own demotivation and fatigue. My struggle over the past six years has involved many physical challenges, but I have found that my mind can truly pose the greatest threat to my own wellness.

I have never been diagnosed with depression, but I do cope with extreme fatigue, and the symptoms can be very similar. It is often confusing for patients to determine whether they suffer from a psychological, MS related depression, or rather the well-known phenomenon of MS fatigue, known as lassitude.

I have made many lifestyle changes since my diagnosis, including adopting a plant-based diet rich in fruits and vegetables, exercising regularly, and challenging my cognitive skills with writing and academics. According to my most recent blood pressure readings (I also have hypertension,) and my cholesterol panel, I am incredibly healthy from a cardiovascular standpoint. However, the one issue that remains my greatest obstacle is fatigue. As I sit on the couch, my life often swirls around me at the speed of light.

I sit, and my family moves around the house, carrying on with a normal day. Children play, my husband bustles around cleaning, picking up toys. Friends come and go, family members chatter on the phone. Children are getting ready for school, a trip to the park, or horseback riding lessons. All the while, I sit.

It is a feeling like no other, this inability to get up and take part in my life. This experience of being an observer, rather than an active participant. My mind wants desperately to get up, to join in and be there instead of here. My mind urges me, “Get up! You can do it! Let’s go! Don’t miss out!” But my body doesn’t listen. My life feels like a movie at certain moments. It is as if I am sitting in a theater seat, watching images on a screen. The only difference is, the scenes passing by in front of me are my life. Laughing, running, spinning, jumping children fly past me, friends call, invitations are declined. And my internal voices do battle. The mind vs. the body: The epic saga continues.

How do we cope with MS fatigue? Are there any good answers? Often, we ask ourselves whether we are just being lazy, or could we be clinically depressed? The answer is typically, neither! 80% of MS patients suffer from fatigue, and it isn’t your average, everyday exhaustion. It is specific to MS, and incredibly debilitating.

What can we do to manage this fatigue? First and foremost, see your provider. Make sure you aren’t missing a treatable reason for your fatigue, such as a thyroid disorder, sleep apnea, or anemia. Once those causes are ruled out, our options (as always) are quite limited. Physical therapy might be helpful. Sleep regulation is incredibly important, and should be addressed first. Stress reduction and relaxation techniques may be helpful. Avoiding extreme heat is a must, as heat may dramatically worsen fatigue. In addition, several medications are approved for fatigue management with MS.

Most importantly, make sure you are taking care of yourself in all the classic ways. Adequate hydration, nutrition, and rest are essential parts of your daily routine as an MS patient. Avoiding excessive caffeine and alcohol, avoiding smoking, and getting as much activity as possible are all effective ways to manage MS fatigue. Though it may seem counter-intuitive, getting some degree of physical activity can actually increase your energy, even if it is the last thing on Earth you feel like doing. Getting up and off that couch and taking in some sunlight can elevate your mood.

Consider inviting friends to visit you at your home, if you don’t have the strength to go visit them. Being completely honest is essential. Let your friends and family know the degree of your struggle with fatigue, and give them the opportunity to understand. It is important not to isolate and withdraw from friends and family due to fatigue. We often jump to the conclusion that “no one gets it. No one will ever understand.” Maybe they will if you give them a chance. Educating our family and friends about our illness is our responsibility, as patients. We should offer as much advice and information as possible to those in our circle. They will likely be happy to help if they can!

My own fatigue continues to be an ongoing battle, but with my Neurologist’s help, I am learning to manage my symptoms more effectively. I believe the most important thing to remember is that we are not alone. Many of our symptoms are entirely treatable, but we can never hope to see improvement until we reach out and ask for help.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Share Button

A Short Fuse with MS – Community Feedback

facebook_share-12995

Tick, tick, tick…boom! That’s the sound of explosive “word vomit,” the result of a broken brain filter, the final moments of a shortening fuse. Many MS-ers have experienced this 0-60 build of anger in situations that would normally cause little concern. So, our fabulous contributor, Lisa Emrich, decided to do a little digging and see if this shortening fuse was actually linked to MS. Her article was a hit! While the research data may not be clear-cut, the community’s reaction certainly was:

This is so me!

  • THIS IS ME!!! I have a very short fuse and very little “filter” on what I say when I “blow.” I don’t mean to act like that and it upsets me when I lose it, but I can’t seem to stop it either.
  • This is me, too. I’m a really nice, caring person but…with a really short fuse. I also tend to speak without thinking, which has gotten me in trouble.
  • I’m the same way! And I don’t mean to be. I have never been like this before and when I say “it’s the MS” I get the “yeah, right” look from some people.

It’s worse when I multitask.

  • I find that when there is too much going on around me I cant keep up, and it is so aggravating!
  • If I’m doing just one thing and then end up having to multitask AND answer questions or listen to someone talk, I break down.
  • My fuse goes when there are multiple people/activities demanding my attention. I’ve discovered that I can only focus on one thing at one time. When that one thing is taken care of, then I can usually move to the next thing.

Sometimes I just want to scream “Shut up!”

  • As soon as it starts I try to tell people to stop and hush for a bit, but they don’t understand, or they roll their eyes, or they keep talking,. Then they comment on how they AREN’T talking. My point is, there is never silence, and sometimes, I need silence.
  • The fact that people in the office feel the need to yell because they don’t seem to have inside voices just makes it that much worse.
  • Some people just know how to push the hell out of my buttons!!!

My poor family gets the brunt of it.

  • The only way for me to deal with it is to declare to my three teens “I’m way off my A game today, so please bear with me.”
  • I am so frustrated, and it is ruining my relationships with people, especially my poor child!
  • I’ve found that too many demands for my attention at one time creates a very unlovable person—my family puts up with a lot.
  • I hate it. It requires, love, patience, and understanding from the spouse!

I’m not me; this isn’t who I am.

  • I have done a complete 180 since my diagnosis in 99. I used to have a REALLY long fuse, but I’ve started snapping more and becoming more passive-aggressive.
  • I don’t even know who I am anymore!? It’s so hard.
  • I can blow up in a second if things aren’t the way they’re suppose to be, and that’s not me!
  • I never had this issue before. Now I tell people that “my bitch switch has a hair trigger.”

Does this sound familiar? Have you experienced an inexplicably short temper? Share your experience with us!

Share Button

Adapting to My Limitations and Doing a Marathon Anyway

By: Stacie Prada

I walked a full marathon. I didn’t think I’d ever be able to say that. Before I was diagnosed with MS, doing a marathon was something out there that I thought I would do someday. After my MS diagnosis it seemed like a goal I would have to let go.

It’s all the more amazing and rewarding to me now since I wrote in my Life List post I had accepted that doing a marathon was something I wouldn’t do in this life. I thought marathons required that people run them, and my MS symptoms cause too many injuries when I run long distances. Surely 26.2 miles was out of the question now that I had MS.

Drop foot caused me to run off kilter and consistently brought on hip pain and injuries that took months of physical therapy to heal. When I complained that jogging hurt me but I wanted to do running events, my physical therapist responded, “You need to decide if it’s worth it.” She was wise to let me know that it was a choice I was making. It was then that I realized running long distances wasn’t wise for me anymore.

I decided to focus on other activities I enjoyed including walking and hiking. It was after a ten mile walk that a friend suggested I do the Portland Marathon where they encourage walkers to participate. I was immediately excited and signed up in January for the October marathon. Two friends also signed up, and we put together and followed a marathon training program that would allow us to not only do the marathon, but train in a way that would have us prepared and able to enjoy the entire adventure.

We usually upped our distance one mile per week. With 36 weeks to train, we had plenty of time to prepare. Internet sources educated us on how to train, and that was terrific. I’m sure we would have over trained if we’d come up with our own training schedule. We walked one long walk per week and did two to three other workouts each week of yoga, walking or gym cardio and weights. Sometimes we were ambitious and would increase our miles more than one mile per week. But we checked in with ourselves and each other throughout the journey to make sure we weren’t pushing ourselves too hard. The threat of getting sick or injured was enough to keep our drive in check.

We did have some physical challenges to address along the way. New shoes and socks, icing our ankles and feet after walking, coating our feet with Vaseline before walking, and staying hydrated helped us perform beyond our hopes. We started our training hoping to finish the marathon in less than the eight hours required. By race day we felt optimistic that maybe we could finish in six and a half hours. By the end of the marathon we were ecstatic to finish 20 minutes earlier than we ever could have hoped!

I chalk our success up to pacing ourselves, allowing enough time to train, making steady progress, paying attention to our bodies’ needs, and sharing the journey with good friends. We promised ourselves we would make sure we had fun every step of the way, and we did!

It’s empowering to accomplish goals even when I do them differently than I’d imagined. MS is full of adjusting expectations for the future, and modifying how I do something hasn’t diminished the enjoyment and sense of accomplishment. It’s made me appreciate the experience all the more.

Share Button

Wellness is More Than Just What Goes in the Body

It may just be me but when someone says the word ‘wellness’ my immediate thought is “what physical activity do you have in mind now?” While physical health is very important there are other aspects to consider when you think about your overall wellness. Intellectual wellness is a sometimes over looked car on the wellness train but taking the time to find ways to stretch and build on your own intellectual wellness will do you a world of good.

While in school we are continually challenged to stretch our minds, think outside the box, be open to new ideas and continue to grow our set of learning skills. Then we become adults and too often we stop challenging ourselves to think creatively and others cease pushing us to grow in that way. When we talk about our total wellness we have to include our intellectual measures. Which can cover a wide variety of topics and areas but they all relate back to us valuing the mentally stimulating activities that can help us to rediscover long put away interests or come across new avenues of expression.

wellness2

Taking care of your intellectual wellness can be in the form of a number of things. Try your hand at picking up a new hobby such as painting or crafting. You can join a book discussion in a book club or online forum. Spend some time learning about local politics. Stretch your horizons by challenging yourself to learn a new language or take up blogging, which I hear can be very rewarding. How about strengthening your funny bone by writing some jokes to share with friends and family or hone your artists’ eye by capturing your world photography. You could also add to your circle of interest by trying out a Broadway show, music festival, museum or gallery. Growing intellectually doesn’t have to be overthought or something we do only while being challenged in grade school. I’m sure there are plenty of activities you’ve always wanted to try or once loved and haven’t picked back up in a while. The next time someone mentions to you what you’re doing for your wellness you could reply back with ‘Working on a few new words in Italian’.

Arrivederci Amici 🙂

Share Button

Putting Myself Out There

By: Stacie Prada 

Having MS has frustrated me, limited me, knocked me down for a bit, and eventually released me from fears I had that kept me from doing certain things and from becoming someone I want to be.

Since being diagnosed with MS in 2008, things I have done for the first time include: yoga, trapeze, traveling abroad, ending a long term marriage, running for and being elected to public office, walking a marathon, and writing. I’m sure there are more, but thinking through my feelings and putting them to paper has been extremely therapeutic for me.

I figure I put so much effort into learning about myself, MS, and how I can live a fulfilling life that maybe sharing my experiences, inspirations and perspective might be helpful to someone else. Or at least it’s something I can refer to when I need to be reminded of things that helped me in the past that I’ve forgotten.

I’m inspired and motivated by people and ideas every day. Hearing what other people with MS have experienced and overcome helps me ease fears and build confidence that I will be able to deal with whatever cards life deals me. And while I put a lot of effort into my health by eating well, exercising, building relationships, sleeping, and contributing to society, I know that I’m not protected from MS disease progression. If MS limits my mobility and my ability to do things in the future, I want to feel secure in knowing I did all I could to slow my disease progression and build a safety net. In the end I believe it will be my attitude that dictates how well I adjust to any difficulties I may have.

It’s with this motivation that I hope to periodically share blog posts in this forum. My name is Stacie, I’m technically a middle aged woman although I feel young, I work full time, I have MS, and I generally feel good about life. Thank you for taking the time to read this!

Share Button

Happy 50th Anniversary – Medicare Open Enrollment Begins

This year marks the 50th anniversary of President Lyndon B. Johnson signing into law the Medicare program. Since its inception July 30, 1965 the program has seen many changes. Medicare and Medicaid started as basic insurance programs for Americans who didn’t have health insurance, the programs have changed over the years to provide more and more Americans with access to quality and affordable health care.

Open Enrollment

You don’t need to sign up for Medicare each year. However, each year you have a chance to review your coverage and make changes. Most Medicare beneficiaries should receive an Annual Notice of Change (ANOC) and Evidence of Coverage (EOC) from their existing Medicare Advantage and Medicare Part D plan providers by September 30th.

Individual Medicare plans can change each year—things like cost, coverage, and which providers and pharmacies are in network. So it is important, that each year during the open enrollment period you dedicate some time to review your plan.

During this open enrollment period you can make changes to various aspects of your coverage.

  • You can switch from Original Medicare to Medicare Advantage, or vice versa.
  •  You can also switch from one Medicare Advantage plan to another; or from one Medicare Part D (prescription drug) plan to another.
  • And if you didn’t enroll in a Medicare Part D plan when you were first eligible, you can do so during the general open enrollment.

Get Started

Visit the Medicare Plan Finder at Medicare.gov/find-a-plan. With the Medicare Plan Finder, you can compare plans and learn about the coverage, benefits, and estimated costs for each plan. For further information and questions, contact Medicare directly at 1-800-MEDICARE (1-800-633-4227).

Want to learn more about Medicare, or the different types of coverage options available? MSAA’s My Health Insurance Guide provides comprehensive, easy-to-follow information and resources for the MS community about Medicare and Medicare Advantage plans.

Need additional help?

Get personalized counseling and assistance in choosing coverage. State Health Insurance Assistance Program (SHIP) provide free, in depth, one-on-one insurance counseling and assistance. Visit https://www.shiptacenter.org/ to locate the office nearest you.

Sources:
http://blog.medicare.gov/2015/07/27/medicare-and-medicaid-50-year-anniversary/
https://www.medicare.gov/Pubs/pdf/10050.pdf

Share Button