Wellness: The Importance of the Mind

Posted on October 30, 2015 by MSAA

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.

A Short Fuse with MS – Community Feedback

Posted on October 28, 2015 by MultipleSclerosis.net

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!

Adapting to My Limitations and Doing a Marathon Anyway

Posted on October 26, 2015 by MSAA

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.

MSAA Teams Up with Wines ‘Til Sold Out

Posted on October 23, 2015 by MSAA

Join MSAA and Wines ‘Til Sold Out (WTSO.com) on Tuesday October 27th for an exciting online wine sale to benefit MSAA in support of the free programs and services offered to the entire MS community.

On October 27th from 8 AM – 8 PM ET, WTSO will donate $1 for every bottle sold to MSAA during their ‘Member Favorites’ Marathon which features customer favorites and the most requested wine deals, all up to 70% off (with free shipping options available). WTSO Marathons are fast-paced days that include upwards of 60 wine deals in one day, each offered one at a time until sold out, with a new deal every 20 minutes or sooner if the previous deal has sold out.

Becoming a member of WTSO.com is free and easy. To sign up and receive reminders about this fundraiser, please visit WTSO.com/invite/msaa.

Wellness is More Than Just What Goes in the Body

Posted on October 21, 2015 by Ro Washington

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 🙂

Putting Myself Out There

Posted on October 19, 2015 by MSAA

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!

Happy 50th Anniversary – Medicare Open Enrollment Begins

Posted on October 16, 2015 by MSAA

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

Family Wellness and Health

Posted on October 14, 2015 by Melissa Young

Wellness is a topic that encompasses many things. It is defined as the condition of good physical, mental and emotional health, especially when maintained by an appropriate diet, exercise, and other lifestyle modifications.

Wellness is much more than just medical health, it is a dynamic process. Maintaining a high level of wellness is crucial to living a higher quality of life. Everything we do and feel affects our wellness. And, our wellness affects our actions and emotions. It’s a circle. If we disregard our wellness, it can lead to a negative spiral that can be difficult to get out of. But, if we can achieve optimal wellness, it can lessen stress, reduce the risk of illness and ensure positive interactions with others. By focusing on your wellness, you and your family can become healthier and happier people.

5 Healthy Habits for Your Family

As a starter, incorporating wellness into your family is as easy as 5-4-3-2-1. Every day, attempt to reach the following goals and discuss your progress as a family:

• FIVE servings of fruits and vegetables
• FOUR servings of water
• THREE servings of low-fat dairy products for calcium and protein
• TWO hours screen time, at the most
• ONE or more hours of physical activity

This simple plan laid out by the Tanner Clinic will help you and your family start to address your physical wellness. However, physical wellness is only one of eight dimensions of overall wellness according to SAMHSA. To improve your total wellness, spend some time assessing where you stand on the other seven dimensions of wellness listed below.

If you and your family spend some time each week developing healthy habits related to each dimension of wellness, it will have a positive impact on both your physical and mental health in the long run.

Social Wellness

Posted on October 12, 2015 by Angel Blair

As our blog theme for the month will focus on various concepts of wellness, I wanted to emphasize that wellness does not necessarily mean just in the physical sense with diet and exercise. Wellness can encompass many different factors, including spirituality or social well-being. As with many notions and ideas we have, wellness too can be perceived differently by individuals, and there’s not only one right way of looking at it.

Social wellness can be just as important as other types because of the impact it can have on one’s body and mind. Taking care of yourself physically is vital, but taking care of and being mindful of your social needs is equally essential. Human beings are meant to connect to others to find fulfilling emotional and thoughtful interactions. Reaching out to other people to make ties that create happiness and contentment is one of the most basic human instincts. Of course there can be interactions and relationships along the way that don’t always bring this sense of fulfillment or joy. But again, it’s part of our nature to either work through these obstacles to work on trying to change and repair these ties, or to dissolve them if they are causing increased stress and harm. The latter decision can be very difficult, but it’s important to know when a relationship is not providing positive benefits but rather draining energy and support.

There are different ways for people to get socially connected to one another. Joining something like an art or education class, or attending social events in your community are some of the ways to increase connections. Throughout the MS community there are various internet group forums and discussions online, an MS Friends telephone line, support group settings and MS educational events. The form of communication can vary in social circles too, as some may feel more comfortable interacting online or may have access issues to physically attending outings. No matter the method, having affirmative social bonds can help to increase positive wellness.

MSAA Motivator: Wellness in Multiple Sclerosis

Posted on October 9, 2015 by MSAA

MSAA’s latest edition of The Motivator features an updated design, with printed and digital versions available.

Included in this issue of The Motivator:

Cover Story – Wellness in MS: How good food choices, exercise, correct posture, and other lifestyle changes can have a positive influence on your overall health.
Up Front – MSAA’s president and CEO gives a special message to readers, reflecting on his 16 years of service to MSAA.
Research News – Updates on recent news items occurring since the last issue of The Motivator are featured.
Program Notes – MSAA’s new aquatic fitness DVD, plus My Health Insurance Guide, are both highlighted.

Throughout the month of October, aligned with the release of latest edition of The Motivator, MSAA Client Services staff and guest bloggers will continue to highlight the impact that a wellness strategy can have on an individual with MS. Discussing topics such as diet and exercise, mental health, and social wellness, we hope to continue the conversation about wellness and learn from each other’s experiences.

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