Has Your MS Caused You to Embrace the Hermit-Life?

“I make plans, I cancel plans, all in the name of MS.”

“Friends just don’t understand, I’d rather just stay home.”  

MS can be overwhelming in so many ways that most others can’t understand or relate to.  Many individuals with MS find it can be exhausting and tiring to get out and socialize.  The constant forgoing of plans, canceling on activities that you may have looked forward to for weeks because of a flare-up, or the feelings of exhaustion and frustration that come along with your daily MS battles may push you more and more towards a hermit-like life. We recently shared an article with our community from our advocate, Laura, called Has MS Made You a Hermit? The response from our community members was amazing. Here are some highlights from what they said.

“I tend to push people away that want to help, forgetting this is new territory for them too.”

“Regarding help and independence, it’s annoying because OFTEN people want to help me when I DON’T want help, and don’t want to help me when I DO want/need help”

It’s challenging going places and dealing with people who insist on “helping”.  Sometimes, when you go out, others feel the need to constantly try and “help”, when, in actuality, you are capable of doing things on your own.  It just may take a bit longer than others, which is totally okay!  However, it can get taxing to continually try to explain this to others.

“I feel this way a lot, but sites like this keep me going and help me realize I’m not alone.”

“Thank you for speaking out with this piece. Once again, so relieved I’m not the only one.”

Social Media can also be emotionally exhausting on anyone, yet even more draining for those with a chronic condition.  It’s tiring for those that are researching facts and cures and deciphering between lies, truths and half truths.  Social Media can trigger many emotions when reading others comments and situations, and can cause a lot of confusion and frustration.  Conversely though, social media sites and communities like ours can often provide a safe social haven where you can get the social exchange you might occasionally want, without having to leave your home or expend a lot of energy!

“For me, it’s been easier to not go out and talk to people. Fatigue, cognitive problems and the fact that I really don’t enjoy social events that I would have had fun at before…”

“Been easier to hang out with my dog since she doesn’t ask questions.”

“I love my friends and family, but fatigue says I love my bed a tad more. And with Netflix, popcorn, and wine, I can’t say it’s not time well spent…”

At times, going out socially can cause apprehension and overwhelming feelings, as some attempt to go out for a fun social evening, yet try so hard to avoid negative conversations and situations.  It really can set you back and take a toll.  Sometimes you may just want a rest from all the exhaustion that these situations bring.  Especially if you feel like just getting through each day is a chore!

It is completely understandable if you just want or need to to stay in and stay to yourself to avoid the grueling challenges out there.  You know the balance you need, and what your body can and can’t handle.  It’s completely okay to say that a hermit’s life is the life for you when you need to!

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Resolutions…What Resolutions??

Resolutions! We’re winding down the end of month one of 2017…have you stuck to your new years resolutions?? Or have you like most of us slowly fallen off that bandwagon? Every year individuals around the world make promises to themselves or set goals for the new year. Big, small and things in between, we make our lists. I’ve often done this myself and like many come the start of February when someone asks me “Hey how are your New Year’s Resolutions looking?” I look at them and with complete focus reply “Resolutions…what Resolutions?? Oh those silly things”

I’m sure I’m not alone in this idea of looking around at midnight on December 31st and getting caught up in the excitement and coming up with a few dozen things I will definitely do differently in 2017. This year as I watched the clock tick down and 2016 was on it’s way out the time door I decided that instead of vowing to eat better, read more or even save money that instead this year I wouldn’t make a resolution so much as start a conversation…with myself. As the party started to count down, 10…I thought over the past year. 9…The experiences and the problems. 8… I thought about the things that I’d loved about 2016. 7… and those that I didn’t. 6… And then I had a thought. 5… What if in 2017 instead of promising to do things I may or may not actually do. 4… I decided to promise myself something. 3… That this year, in 2017. 2… I would find, explore and do the things that make me happy. 1… My one and only promise/resolution/goal for 2017 was to the take time to really ask myself and listen intently to the answers to what makes me, me. The happy, more positive version of me…0.

So that’s what I’ve been doing this year. Yes I had my “I really should cook instead of running thru the drive thru” moment and gotten up early to do some yoga, or in some cases just have a cup of coffee and watched the sun rise. But not necessarily because I’m trying to be super healthy or save money or anything specific to that. But because cooking and watching a new day start and coffee make me happy. So it may be the end of the first month of 2017 but there is definitely still time to decide not on a resolution per say. But on more of a journey or an exploration…What if you spent some time this year, finding what makes you happy and doing that from time to time not by accident but intentionally. It might be easier to keep than some of the other resolutions we’ve all made.

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2017 Has Arrived

By Lauren Kovacs

It is tough to welcome a new year. Seems like I recently adjusted to it being 2016.  Alas, we must shed the old and embrace the new.  Shake it off.

Like anything with MS, don’t rush. Rushing does nothing good. Slow down.  Ease into 2017.  Take a deep breath and take a baby step into the New Year.

Setting wee goals makes the weight of the New Year manageable.  Don’t make a long list of goals.  Maybe do an extra few reps when exercising.  Doing 13 instead of 10 might be something you can do.  You can maybe add an extra pound to your weights. A few small goals are more realistic.

I know I soaked myself in gluten over Christmas and I never said “no” to Christmas cookies.  I was being polite.  Generally, it was a baked good free-for-all.  If it was within reach, I ate it.  I love candy too.  My daily PT suffered.  This month I am weeding out some gluten and doing part of my PT.

I started my New Year’s goals the day after Christmas.  A tiny bit each day does wonders.  I restarted my laps around the house.  I am trying to do at least one.  I am supposed to do three.  Wade in slowly.  No head first diving into 2017.  The water is cold so, most towel off and never go back in.  Don’t let too many goals shock your system.

I am trying to get off the couch more.  The butt marks on my couch don’t look good.  One of my sons got a real bow and arrow set from Santa.  (target tips) I go out and watch him practice.  I can’t get out there without help, but I am trying.  I am off the couch.

Take your time and slow down.  So what if it takes you longer to tie your shoes or hook you bra?  Rushing leads to frustration.  Slow and steady, as they say.  If you just can’t, after trying, ask for help.  Frustration leads to stress and stress is bad for MS.

In general, MS makes you slow down.  Take your time.  We run a very different race.  If I can shower without losing balance, when standing up to get out, it is a goal I reached. If I can comb my wet hair without smacking myself in the face, I met another goal. Take your time.  2017 is not going any place any time soon.

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Resolutions, Goal Setting and Multiple Sclerosis

By Susan Russo

Every year on January 1st, the first thought to pop into my head is “OK, it’s a new beginning, what do I want to do going forward?”

And every January 1st, I say “Well, absolutely nothing comes to mind.” Except coffee. I need coffee. And eggs and some bacon. So I climb out of bed and meander my way into the kitchen, all the while telling my son “Happy New Year Chris! We made it through another Holiday Season, still intact and none worse for wear.” Still not married, still alone, and still no grand babies for me to raise. Chris just grunts in unison, rolls back over in his bed and drifts back into his safe place. What that is, I don’t dare ask. All I hear is a muffled, low grade growl of “just stop it mom, pleeeeeeaaase!”

As I take my cozy seat at the breakfast table with my favorite blanket, (and, yes, it does get cold enough in winter to use a blanket in Houston) I begin to reminisce on the past few years. “How is my MS doing?” I ask. It answers back with a flush of burning, tingling, a bit of numbness, and a side order of vertigo, reminding me, “Hey girl, I’m still here. Did you forget about me?” And I’m like, “geez, sorry I asked.”

No. I have not forgotten. It’s just in the midst of all my goal setting, you simply slipped my mind.

And that’s just it. The thing about setting goals for the new year…it really is so important. Resolutions allow me to forget about multiple sclerosis, even for just a moment. Thinking of my dreams and aspirations brings me to a happy place. And by the time I finished my toast with jelly, I have a list of a thousand things I want to accomplish. We all know that feeling of elation. Yes, I can learn to swim so my MS will stop burning me, as I splash around in the pool like a halibut. Yes, I will become a world famous artist, move to the Fiji Islands, employ a cabana boy, drink ice tea, and paint until my heart’s content. And eat tons of potato chips. I love potato chips. And maybe have a glass of champagne. Just because I can.

Then, Boom! Reality comes knocking on the door. “You can’t ignore me forever! Let me in or else!” I sigh and take a gulp of my coffee, politely expressing to my reality to “go away, I still have bacon to eat.”

The thing about reality…it’s real and it’s relentless, and it never goes away. So, begrudgingly, I focus. One step at a time. One day at a time. One goal at a time.

  • I will take my Avonex on time each week. (I was tired of my MS injections, so I skipped a few. Don’t tell my doctor.)
  • I will swim 2 to 3 times a week.
  • I will eat healthy foods. (Yeah, like that’s gonna happen.)
  • I won’t pester my son about marriage and babies and wanting a corgi puppy.
  • I will create more art because I am totally talented and people like my work.
  • I will volunteer at the local police department because I have respect for officers of the law. (Actually, I adore a man in uniform, just sayin…)
  • And, I will find a cure for MS! It’s gonna happen people!

My point is this. It’s imperative to set goals, especially when we are in a battle with MS or other dreadful diseases. Unfortunately, they are a part of our lives. We cannot ignore them. So, include them in your dreams and aspirations. Keep it simple. Don’t set goals you know in your heart you won’t keep. Be kind to yourself. Reward yourself. Go see that movie that you’ve been wanting to see.

Remember this. No matter how crazy the world gets, if you have just one goal that gives you a sense of accomplishment, set it and follow through. When you succeed, pat yourself on the back. Smile. You did it. Then set another. And another. Pretty soon, you will find that resolutions can be made and effortlessly (well, you may have to exert some effort) accomplished, not just on the very first day of a new year, but anytime you wish.

The choice is yours. And know this, if you falter with your attempts to better yourself and the world around you, do not dismay. Time keeps coming. Days keep flying by. And January 1st will still be the 1st day of the new year. Always.

Time for resolutions and dreams, with an entree of bacon, eggs, coffee, and more bacon. And perhaps a little grand baby to cuddle.

Heck, I’d settle for the corgi puppy! I’ll name her Isabella.

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Crock Pot Taco Soup

This recipe is one of the easiest soup recipes you’ll ever make in a crock pot.  It is a crowd-pleaser and is wonderful left over too.  On a cold winters day this will surely warm you right up.

Ingredients

  • 1 (15 oz.) can black beans, drained and rinsed
  • 1 (15 oz.) can pinto beans, drained and rinsed
  • 1 (14.5 oz.) can petite diced tomatoes, drained
  • 1 (15.25 oz.) can of corn, drained
  • 2 (14 oz.) cans chicken broth
  • 1 (1 oz.) packet taco seasoning
  • 1 Tablespoon cornstarch + 2 Tablespoons water
  • 1/2 pound lean ground beef (if you prefer to go meatless you do not have to add ground beef)

Instructions

  1. Add all beans, tomatoes, corn, chicken broth and taco seasoning to a large crock pot. Stir to combine. Cook on low heat for 4 hours.
  2. Mix together the cornstarch and water to create a slurry. Add to the soup in crock pot and stir. This will help thicken the soup.
  3. Brown the ground beef in a large skillet until thoroughly cooked. Drain grease. Add beef to crock pot and stir together.
  4. Serve soup warm with shredded cheese, tortilla strips and sour cream.

“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 either from their own family recipe collection or based on recipes we think our audience would enjoy. As always, make sure to consult your doctor about any food or nutrition questions as they relate to your MS.”

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The Benefits of Creating Artwork… It’s More than Just a Pretty Picture!

Each month, we honor an artist from our Art Showcase in our Artist of the Month series.  But have you taken a moment to look through the Art Showcase to see what you’ll find? In addition to a wide variety of beautiful pieces of art, you’ll find personal stories written by the artists. These stories add a whole new dimension to the artwork, allowing you to read about the artist and learn what inspires him or her to create.

In looking through these stories, you’ll find one common theme: In addition to creating a piece of art, the act of doing the art is extremely therapeutic – and this is true whether drawing or painting, as well as crafting, knitting, or throwing a clay pot on a pottery wheel. It often changes one’s outlook and gives individuals a new purpose in life.

These positive effects are exciting to hear and are certainly not limited to MSAA’s Art Showcase! The entire field of art therapy is based on the benefits derived from the creative process and the resulting artwork, and these advantages may be experienced by children, adults of any age, healthy individuals, and individuals with physical, emotional, or psychological challenges.

Numerous studies have been conducted with healthy individuals as well as those with various conditions to examine the positive effects of creating artwork. One small study found that the women with MS who participated in a creative art program experienced significant increases in self-esteem, social support, and self-efficacy to function with MS (self-efficacy is the ability we believe we have to meet challenges and achieve goals). The study also saw a strong effect on hope. The authors concluded that creative art has the potential to enhance the lives of those living with MS.

Another small study conducted in Ireland found that the group of adults with MS who participated in creative classes experienced deep immersion in their artwork, offering respite from worry about their illness. The art-making processes and artwork created increased emotional wellbeing and promoted self-worth, while attending the classes provided an opportunity for social camaraderie and learning. Artwork even helped to support their identity and to accommodate functional losses associated with MS. Participants expressed the feeling that art was “opening new doors” for them.

The American Art Therapy Association at arttherapy.org explains that art therapy is a mental health profession in which art therapists use art media, the creative process, and the resulting artwork to help their clients to explore their feelings and reconcile emotional conflicts. Among other benefits, they note that art therapy can help people to foster self-awareness, manage behavior and addictions, develop social skills, improve reality orientation, reduce anxiety, and increase self-esteem. Anyone interested in learning about art therapy or locating an art therapist in his or her area may visit this website for more information.

It’s important to note that you do not need to work with an art therapist to enjoy the rewards of creating artwork, nor do you need to be an artist or believe you have any “talent” as an artist. While an art therapist may be very helpful to someone who is experiencing emotional or psychological issues, including depression or anxiety… or to someone recovering from an illness or coping with a medical condition… anyone is free to explore his or her creative side… and discover the positive changes associated with creating his or her own works of art!

Another informative resource on the value of art is the Be Brain Fit website. This site was created by two health professionals and cites many published works relating to the benefits derived through art and the creative process. In this section of their website, they explain that creating art is a very effective way to stimulate the brain and that anyone can do it. To follow are a few points from Be Brain Fit, all supporting the positive effects of artwork.

Art relieves stress by enabling you to become totally immersed and providing a distraction for your mind. As you concentrate on details and pay more attention to your environment, it acts like a form of meditation. Many of the new coloring books being marketed to adults were designed with the idea of reducing stress, and have even helped veterans suffering from post-traumatic stress disorder (PTSD).

Art uses both sides of your brain, encourages creative thinking, and enhances problem-solving skills. Art is thought to serve as a type of brain exercise and stimulates communication between various parts of the brain, creating new connections between brain cells. It also boosts self-esteem, provides a sense of accomplishment, and can help children to become better students. Art has even been shown to enhance cognitive abilities and memory for people with serious brain disorders, and has been shown to improve memory in individuals with Alzheimer’s disease or dementia.

Now that you know some of the exciting benefits that art has to offer, this might be a great time to give art a try! You can start with a pencil and paper, a coloring book and pens, a craft kit from the store, paints and brushes, or a scrapbook and glue… whatever you might find to be interesting and fun. You can even enroll in a local art class. The results will surprise you! And who knows? Maybe the next MSAA Art Showcase will feature one of your works!

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Show Your Support on this National Day of Service

Monday, January 16th is observed as a national holiday in honor of a great leader and activist, Dr. Martin Luther King Jr. In addition to being a federal holiday, Martin Luther King Jr. Day is recognized as a national day of service, empowering citizens to give back to their communities and help bring change in a nation so profoundly influenced by the courageous acts of Dr. King.

This day of service encourages our nation to have a “day on, not a day off” and support causes they feel a connection to. This is why MSAA encourages everyone to take part and offer a helping hand to those within the MS community.

There are many ways to give back and help improve lives in the MS community. Here are a few suggestions to help you get started:

  1. Donate your time by creating a fundraising event to benefit MSAA. This could be anything from a bake sale to a bowling tournament!
  2. Participate in Swim for MS – get creative and make your own unique swim challenge!
  3. Make a purchase from a company that supports charitable causes.
  4. Make a monetary contribution.
  5. Love using social media? Become a member of our Street Squad and help spread the word about MSAA!
  6. Perform a random act of kindness for someone in your community.

The hectic holiday season can certainly bring on a lot of stress. Allow this day of service to help you reflect on what you’re grateful for, and how you’d like to assist your community more in the New Year. We thank you for your continued dedication to our mission and hope you enjoy your volunteer work, whatever it may be!

We would love to hear how you are spending your Monday. Let us know what activities and service you are participating in either on our blog or on our Facebook page.

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MS Clinical Trials Made Easy with MSAA and Antidote

MSAA is pleased to announce that through a partnership with Antidote, a digital health company, we are now offering a clinical trial search tool on our website that will make learning about and connecting with MS clinical trials easier than ever.

While we remain dedicated to improving lives in the MS community through vital services and support, MSAA recognizes the value of having access to clinical trial information, providing important answers to researchers. This is why we encourage you to try Antidote’s clinical trial search tool.

Although some may be familiar with the purpose of clinical trials, others may not know or understand the benefits of these studies. Clinical trials are scientific studies that test the safety and effectiveness of new treatments for diseases, including MS. They often use patient participants; are conducted by universities, MS clinics, and neurologists; and must follow FDA-approved protocol so that all treatment is provided and all data is collected uniformly. No drug can be approved by the FDA until there is clinical trial proof of their safety and effectiveness.

The major advances in the treatment of MS in the last 15-20 years have only been because of data provided through clinical trials, which is why these studies remain so significant for MS research.

You can start searching for clinical trials for you or your loved one right now on our website. Click here to begin.

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Why Just at New Year’s?

Last week people all around the world celebrated and rang in the New Year; 2017 felt like it came so quickly and of course with it came the routine creation of resolutions and goals for the start of the new year. It’s tradition, right? To make New Year’s resolutions and try to stick with them until at least… the end of January? Lol.

I heard something on the radio recently about resolutions – the question as to why people wait until January 1st to make them and essentially put their goals and hopes of change on hold until this significant date. Sure, it does make sense to wait until the start of a fresh year to initiate change; the New Year has always symbolized new beginnings and a clean slate to start anew. But just imagine if you were to start your own tradition of making resolutions and promises of change in the middle, or anytime of the year for that matter – whenever it is that the idea first pops into your head? You’re under no obligation to delay or put your life on hold because of past traditions and habits. If you’re one who likes to wait and mark these resolutions in the New Year then that’s great! But there’s no reason if you want to make a change now, why you’d have to postpone it. I mean there is something to be said for traditions, it’s nice to have customs and practices that are familiar and safe and comforting, but it’s also ok to spark a new practice within your life. Though the world and life in general can have their own very strong influences and effects in your day to day, you still have power to make decisions that impact your own life too, so that means you can make choices that suit your best interest, not just at New Year’s but all year round.

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New Year’s Resolutions, Taking Stock & Creating a Personal Health Reference Manual

By Stacie Prada

I used to think it was more important to just do things than to track them, but now I see the value in writing them down and acknowledging how far I’ve come over time. When the calendar year ratchets up and I think of myself as another year older, it’s a natural time to reflect and make goals. I like to review what I’ve accomplished, endured, thwarted and nurtured. When I’m feeling like I have a lot I still want to do, knowing how far I’ve come is a reality check for my expectations.

I aim for full life wellness, and I categorize my areas of wellness as health, home, relationships, finances, creativity and adventure.  At all times, I try to have at least one goal for each area. I like to incorporate small activities in my life that move me toward achieving my goals, and I like doing one or two large projects at a time that leap me forward on a goal.  Depending on my levels of energy and obligations, I’ll do a little or a lot on the larger projects. I try to establish and maintain balance in my life without sacrificing or ignoring another aspect of my life. My overarching goal is to keep working toward something while appreciating who, where and what I am now.

My 2017 Resolution: Take stock.

I think it’s helpful to take stock.  To think about what made me happy in the past, what I love about the present, and what I would like my life to be soon or someday. Committing those thoughts and ambitions to paper or a digital file allows me to look back over time to see if I still want the same things in life now that I thought I wanted in the past.

I’m taking stock figuratively and literally. I’m pouring through all of my personal belongings, my finances, my routines and my data. I’m compiling the things I’ve learned over the years since I don’t always remember something when I encounter it again. This will focus my attention on what I have, what I could adapt to use differently, what I still want, and what I’d like to upgrade for the perfect fit.

My Personal Health Reference Manual

A big project I’d like to accomplish this year is compiling all of my health information for things I’ve experienced, tried and currently use. I aim to create and maintain a binder for all the ways I keep my health in check. It will include all the successful and unsuccessful treatments.

The idea for this project came to me after my hip started hurting. I know that my hip can hurt when I jog longer distances, and I could tell that I’d overdone it. I believe the cause is foot drop that slightly affects my gait when I jog and triggers a misalignment in my hips to compensate.  In the past, I’d curbed my distances to deal with it. Sadly, it took hurting my hip twice in a month and six weeks of recovery time before it occurred to me I’d dealt with this before!  I remembered that I had physical therapy exercises from seven years ago that helped heal my hip from the same problem.  My hope is that using these exercises will not only allow me to heal my hip faster but prevent future injury and allow me to work back up to longer distances again.

This experience made me realize I need a personalized easy-reference health manual to manage my health with less stress. MS affects each person differently, and it requires constant adaptation to live successfully with MS. I want to reduce the amount of time spent enduring something and wracking my brain figuring out what will work for me in order to hasten effective treatment. An up to date personalized health reference manual will help.

The information I want to compile will include the following:

Conditions, Symptoms, and Injuries

  1. Indicators, triggers and causes
  2. Preventative measures including lifestyle choices, nutrition and activities
  3. Treatments including prescriptions, exercises, and natural remedies
    – Pros
    – Cons
    – When it’s effective
    – When it’s not effective
    – Why I choose this (or don’t)
  4. Experiences with this issue – what’s worked or failed
  5. Theories for why my body reacts a certain way – correlations proven and disproven

Sources of information I’ll use to compile this reference manual include:

  • Tracking calendars of health data and disease-modifying drugs
  • Notes I’ve taken at health appointments
  • Physical therapy treatments and exercises
  • My memory
  • My friends’ memories – often they recall things for me that I’ve forgotten
  • Books and internet resources that can trigger my memory for things I’ve tried but didn’t write down
  • Medical records from doctors

I’ve included a couple of examples at the end of this post that I’ve put together so far. It’s tailored to my health and experiences, so yours will look different. It’s also a work in progress, so I’ll keep adding and editing it as time passes and I change.

I wish I was low maintenance. Sadly, as I’ve aged I’m getting to be higher and higher maintenance. I joke that at least I’m doing the maintenance and not pushing that responsibility onto other people!

That said, if I do ever need help with my health, this will be a great tool for anyone helping me.  They’ll know what I’ve already tried, what works, and what hasn’t worked. I won’t need to start from scratch with each new provider.

This is organizing my health from my information and experiences. It frees me from relying on information from the web each time I confront an issue. Sometimes the information can just be too much, and what will help me gets lost in the mass of opinions and recommendations. This is organizing around me and benefiting from the decades of experience I have being me.

Examples of pages from my Personal Health Reference Manual:

Condition: Vertigo and dizziness with nausea

  1. Indicators, triggers and causes: crystals in ear out of place
  2. Preventative measures: none
  3. Treatments: Epley Maneuver to put crystals in ear back in place
    Pros: Non-invasive, I can do it at home, and no side effects. Immediate results.
    Cons: none
    When it’s effective: When dizziness is caused by ear crystals out of place.
    When it’s not effective: If dizziness is caused by something else.
    Why I choose this for now: It’s an easy fix.
  4. Experiences with this issue, what’s worked or failed. I experienced dizziness and nausea for a week before seeing my neurologist. He did the Epley maneuver to me on one side and it didn’t do anything. He did it again on the other side, and immediately my vertigo vanished! He taught me how to do the Epley maneuver at home, and I have used it a couple times over the years since. When I need a refresher, I’ve found a Youtube video to remind me.
  5. Theories for why my body reacts a certain way, correlations proven and disproven: It’s common.

Condition: Fatigue

  1. Indicators, triggers and causes:
    – When numbness intensifies or spreads from the usual areas
    – Spring and Fall when the seasons change
    – Less daylight in winter
    – More obligations than usual after work or on weekends
    – Workdays that involve constant personal interaction without breaks
    – Relationship stress
    – Big events – both happy and sad!
    – Long periods of added stress
  2. Preventative measures: Track fatigue level daily and adjust activities and treatments based on fatigue level.
  3. Treatments:
    1. Coffee/caffeine:
      Pros: It lessens light or moderate fatigue effectively and temporarily, it tastes good, it’s accessible, I don’t need a prescription, fewer side effects than other methods
      Cons: It can adversely affect sleep and intestinal health. Dosage can only go up to a certain level before getting jittery and anxious. I felt better physically (except for fatigue) when I went without coffee for a month.
      When it’s effective: For minimal to moderate fatigue.
      When it’s not effective: When fatigue is extreme.
      Why I choose this for now: I like it and it fits within my lifestyle. While I need to work in an office setting, it’s helped me maintain.
      Experience: Green tea inflames my throat. Caffeine tablets were harsh on my stomach. I may as well drink coffee and enjoy it.
    2. Rest:
      Pros: It’s helpful
      Cons: It’s isolating, it can conflict with life obligations.
      When it’s effective: At least some rest daily, but more intensive rest needed when fatigue is heavy or extreme.
    3. Modafinil (Provigil):
      Pros: It’s effective
      Cons: It requires a prescription, and my insurance doesn’t cover it. Out of pocket cost was $120 for six pills in 2012. (Could check on this periodically to see if it’s changed.)
      When it’s effective: It can help me get through periods of time when I’m not able to limit my obligations to get more rest. It’s a good temporary option if I can get an Rx.
    4. Exercise:
      Pros: Moderate exercise helps reduce fatigue. It’s good for weight management. It helps keep me mobile and able to experience lots of activities.
      Cons: Hard to always gauge how much exercise is enough and how much is too much. Too much extreme exercise over months can tax my body and lead to more fatigue.
      When it’s effective: When I’m not injured or severely fatigued.
    5. Organization & Prioritization:
      Pros: It lessens stress and frees up mental and physical capacity for reducing stress.
      Cons: It takes a lot of thought and practice to create organization methods.
      When it’s effective: Pretty much always.
    6. Blue light
      Pros: Non-invasive
      Cons: Daily time investment required, and the results aren’t immediate. Hard to gauge if it’s helping or not. It was an expensive investment without any assurance it would help.
      When it’s effective: Fall and winter when the days are short where I live.
    7. Limit activities
      Pros: Helps free up time for rest and sleep.
      Cons: It can get depressing and make me feel like I’m being punished.
      When it’s effective: When I’m still able to do things that satisfy me emotionally.
  4. Experiences with this issue, what’s worked or failed. I used a blue light in 2010 through 2012. I think it helped, and I should pull it out and try it again this winter. I don’t need it in the summer and I forgot I had it. Exercise, rest, coffee, and good nutrition work for daily maintenance. Modafinil works well when I need to keep going for a week or so beyond what my body would prefer. Rest is required to recover from overdoing it.
  5. Theories for why my body reacts a certain way, correlations proven and disproven: Fatigue is the #1 symptom common for people with MS. With so much damaged nerve insulation (myelin), it takes more energy to do common tasks than for someone with healthy myelin. My neurologist explained that the energy it takes a healthy person to walk a mile may be an equivalent of a mile and a half or two miles for someone with MS.

*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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