MS Mood Swings

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You can only blame lack of sleep for so much before you start asking “Why is my mood so inconsistent!”  Turns out, it’s not just fatigue – it’s actually a common symptom of MS! As with many invisible symptoms that can occur with MS, mood swings can have a profound effect on relationships and emotional health as a whole.

Our phenomenal contributor, Devin, described this frustrating symptom perfectly in his recent article “Invisible Symptoms of MS: Mood Swings” and the community rallied behind him sharing their own stories and support.

It became clear that this is not uncommon, and while difficult to manage, having the support of other people with MS can make all the difference. Here are just some of the comments our community members shared:

Sometimes, even I can’t figure out why I’m upset

  • I never thought my mood swings could be MS- related. Sometimes I can’t explain to myself why I’m reacting as I am.
  • Since my diagnosis, I cry at every chick flick and even the Budweiser Clydesdale commercials! I can’t seem to get my emotions together sometimes
  • There are times I know I’m picking a fight with my husband about something stupid, but I don’t even know why I’m upset!

I just thought I was crazy!

  • I always thought it was just who I am. An emotional roller coaster with frequent break downs.
  • The problem is most people don’t know about this symptom, so I get more depressed because I feel like people think I’m losing your mind.
  • I always know when my meds aren’t working because I start to feel like I’m going crazy – then I have a lot of people to apologize to
  • I just thought I had gone crazy: I didn’t think it could be a MS symptom. It puts my mind at ease to know I’m not alone.
  • I thought I was just a raving lunatic!

Knowing why is one thing; managing these swings is another!

  • It feels normal in the moment; not until after that I look back and realize just how moody I was being. I know it’s the MS, but I don’t know how to control it
  • I definitely get moody, but what can you do? I just live with it and try to stay strong! Laughter is key.
  • I can feel it coming on – as soon as I start to feel practically homicidal I isolate myself in my room and wait it out.
  • Knowing my MS was the cause of my mood swings was a relief, but finding ways to conquer them is the next challenge.

How about you? Have mood swings impacted your life? Have you found any good approaches for managing these? Feel free to share with the community – you are not alone!

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Meet MSAA’s Newest Guest Blogger – Lisa Scroggins

I am Lisa Scroggins, wife, mother, CPA. I was diagnosed in 1991, and my mother had MS. There’s more: two of my five siblings also have MS. So, obviously, I am a person with MS: a patient. I don’t like to be called an MSer. I also resist substituting different words for the letters, M and S, such as “Made Strong:” I like to think of myself as an advocate, and I have written to members of Congress on various issues. I’m currently in the process of trying to correct an inadequate parking situation in my community¹.

If I’m brutally honest with myself, I just don’t like being a disabled person, and I have hope that I can improve. Having officially stopped working because of disability, I am having an identity crisis, as well as an existential one. I know I have pretty severe limitations, which mostly have arisen in the past three to four years. There’s my first clue: it seems as though it’s very recent, but I just typed the truth: my walking ability has worsened over several years, not the one or two that I’ve been telling myself. It has been only a couple of years since I’ve worked, but it’s important to know that I experienced a life-changing series of events which have left me reeling to this day. In other words, it’s complicated.

I’ve had MS for a very long time. I’m lucky, in that for many years, my symptoms were invisible to others. Although they were always in the back of my mind, I had learned to compensate for them.

First example: I’m shopping in a Sam’s Club store. It’s a huge building, and as is typical, I’ve walked around for a while, just browsing for things that I might want to buy, when I realize that fatigue² is kicking in. I’m not prepared to check out, with all that entails: getting my payment and membership cards out, unloading my items to the conveyor belt, putting them back in my cart, storing my cards safely, but keeping my receipt ready to be checked before exiting, trekking to my car, unloading my purchases into my trunk, parking or maybe just abandoning my cart, climbing back into my car where I will rest for a few minutes, while hoping that no one is idling behind me, waiting for my parking spot—oh the pressure! Also, I’m a pretty good distance from the checkout lines, and those lines were fairly long at last glimpse. What to do? I head over to the book section. I park my cart so that hopefully, it won’t impede any other shoppers, grab a few books to peruse, and sit down on the floor to rest and look through the books. Occasionally, I get some questioning looks, but hey, you do what you have to do.

Second example: I have what’s known as a “neurogenic bladder.” Real world translation: I experience urgency, which means I have to pee now! It doesn’t matter when I’ve last relieved myself, or how much my fluid intake has been. (That commercial for an overactive bladder medication is spot-on and even cute! The bladder IS in charge and drags me where it will.) Whenever I enter a building, if I don’t already know where the bathrooms are, I focus on finding their locations. When driving, I have been known to pull over to the side of the Interstate when I couldn’t make it to the nearest restroom. The technique involves putting on my car’s flashers, exiting my car, rapidly walking over to the passenger side, opening both front and rear passenger doors to provide a modicum of privacy, grabbing a fast food napkin or two from the map storage compartment door on the front passenger side for, oh, come on, you know what it’s for (always kept stocked for emergencies such as these!), and doing the squat. There’s just no way to do this in a dignified manner. I always feel guilty for littering. The pre-MS me would never have done such a thing.

The nature of my MS has changed and its effect on me has been nothing short of dramatic. As isolating and terrifying as it is, I know there are thousands of other people going through the same thing. The need to redefine myself in this new state of existence, is a powerful one. In our culture, what we “do” defines us. I’ve been treading water for some time, trying to figure what it is that I “do” now. If it’s true that “necessity is the mother of invention,” I’m looking for some tools. Maybe we can search together.

¹ You may have thought, as I did, that the ADA fixed this stuff, but that is incorrect! An explanation in a future blog post is in the making
² Often cited as the most common and disabling symptom among people with MS.

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Keeping That MS Monster Asleep

By: Lauren Kovac

Ah, spring is in the air. It means pollen-covered cars, sneezing, and nesting. Getting organized for the coming season is something we all want to do. Organization can help MS people feel a small sense of control.

I was extremely organized, before the MS changed that. It messed up my neatness. Actually, it was more like a tornado barreling through my nice organized piles.

I have learned to turn a blind eye, take a deep breath, and have some chocolate. However, some things cannot be left. With MS, you constantly have to learn to find alternative ways to keep the MS monster sleeping.

With three boys and constantly using my clothes for target practice, a laundry mountain cast a dark shadow on my life. Getting the basket from my bedroom to the laundry room was an obstacle course. My solution is now to push it with my walker on a plant stand with wheels.

Spring means soccer too. Games are fast, so outings are short. I get some much-needed vitamin D and adult interaction. Enjoy outside while you can. Take advantage of nice weather, before the heat comes. It is nice to enjoy the fresh air without being a bug buffet.

Interaction face to face is nice too. I love our dog, but he can’t talk back. He is not a conversationalist. He only has one sound and it sounds like barking. He will whine occasionally, if you are eating cheese. His conversations are rather one sided.

I relish my weekly therapeutic horseback riding lessons. The quiet of the farm, the green pastures, flowering trees, and even the horse poop means freedom. Swirling whirlpools of shed horsehair in the breeze means I can enjoy outside.

Once it gets hot, I embrace my inner hermit. Until then, I soak in the lovely weather, take an allergy pill, and get some rays. I like being a toasted mushroom instead of a pasty one. Sun, interaction, horses, and watching my son’s soccer games are great ways for me to keep that MS monster sleeping.

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April 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by MS.

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

April Artist of the Month:
Debra Robert – Lake Worth, FL
Constellation des Colores
Debra Robert - Constellation des Colores

About the Artist:
“I have been painting for over 25 years. I have a BA in theatre arts and an MFA in film producing. My career has taken me around the world, working in live events/concerts/conferences for over 20 years.

Now diagnosed with Multiple Sclerosis (MS), I had to retire from my exciting, vibrant career. I am determined to put my energy into art full-time, surrounding myself in a world of color and light. I pull my inspiration from years of the lighting design, sounds and imaginative shapes from live performance production.”
Read more

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March is almost over…But before we go

This month we’ve been highlighting MS Awareness as we present different topics important to and associated with MS as well as ways in which we can educate ourselves and those around us. In addition to MS Awareness, March is also Social Work Month. Social workers play a vital role in overall health and wellness, mental health, as well as in areas far outside of the health sciences.

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Social workers have been around since before the 1800’s working diligently on issues of injustice, inequality and to help empower individuals and communities to use their collective strength to make a difference. Some of our most noted alums here in the United States started institutions such as the Hull House in Chicago in 1889, which was established to help the surrounding low-income neighborhoods have access to education programs, health care services and recreational opportunities. In addition to reaching out to low-income communities, social workers throughout history have partnered with the Red Cross to treat soldiers returning from war, been civil rights activists, served on presidential cabinets and worked in legislative arenas as catalysts for change. Social workers are often thought of as the caseworkers in hospitals or with children and family services. While those are two of the important roles that social workers take on, social workers also work with the military or international businesses as well as be political campaign workers, community organizers, run nonprofit organizations and are behavior and mental health professionals. Our first lady Michelle Obama has an MSW (Master of Social Work) on her team to initiate new programs and services across the country.

Social work as a profession has evolved from those early years but some things still remain. The individuals who enter into social work are dedicated, compassionate, innovative, inclusive and hard working professionals who cover a bevy of occupations and can be found in almost every avenue. We meet people on some of their worst days and walk with them through circumstances and over obstacles while assisting them to build on their own strengths to come out the other side better equipped to tackle some of life’s uncertainty. It takes a special person to be a social worker and partner with others to be the difference someone may need.

Social-Worker-Board-Exam-Results-June-2014-Quotes

Thank any social workers you know for all their hard work not just in the month of March but whenever you get the chance.

 

 

 

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MSAA and MultipleSclerosis.net Partner for a Live AMA

MSAA recently partnered with MultipleSclerosis.net to co-host a live Facebook “Ask Me Anything”. For one fast-paced hour on March 22nd, everyone from the multiple sclerosis community was invited to ask questions about living with MS and have their questions answered by MSAA Client Services Specialists and MultipleSclerosis.net staff and patient advocates.

Read more about this AMA and find out what topics were discussed at MultipleSclerosis.net.

AMA March 22 2016

A special thanks to our friends at MultipleSclerosis.net for allowing MSAA to be a part of this special MS Awareness Month event and for helping improve lives today for the entire MS community!

 

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MS and Making Plans: Community Thoughts

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There is a lot about MS that is difficult for “healthy” people to understand, and one of the most frustrating things is that it can be really difficult to make plans in advance. You just never know how you are going to feel the following day, or even the following hour. One of the amazing contributors at MultipleSclerosis.net, Matt Allen G, wrote a wonderful article about his frustrations with being unable to make plans with friends in advance, and then some people not understanding why those plans may have to change at the last minute. Matt’s words really resonated with our community, and so many other people shared their thoughts and experiences with us. Here’s what our community had to say:

It’s emotionally draining

  • My head tells me I can do it but my body won’t let me. For me this is the worst. I look around during my house and there is such that needs done but I just can’t. Depressing.
  • I get so sad and discouraged when I see people posting pictures of everywhere they go and the fun they have…and I do well to get to the store once in a while.
  • This is one of the hardest parts of staying in the family dynamic.

MS Doesn’t Care

  • MS doesn’t care if your children need you to drive them here, there, and everywhere. MS doesn’t care if you got all dressed up and now you need a nap. I have gotten all dressed for church and then as my husband is backing up the van I ask him to stop as I need to go back in the house. Then I take a nap, fully dressed, too tired to undress.
  • I have an international trip coming up, and the anxiety alone is killing me, but I figure you only live once. If I let this disease deter me from making plans and living my life as best I can while I still can I’ll always regret it. Tomorrow is not promised to anyone. You never know when there’ll be a “next time”.
  • I never know when I am going to feel better; 10 minutes good, then it’s downhill.

Tips

  • I always get trip insurance and have used it. It takes the pressure off. Make sure it covers pre- existing conditions as most don’t. I think it is Travel Guard. You have to purchase it within 2 weeks of booking a flight or trip. Really truly despise this part of living with the monster.
  • My experience has been to make plans with the people who understand that I will do what I can. I go, do what I can and find happiness that I did what I could and had an experience that I will remember.
  • I stopped making plans because I never know how I’ll feel. One day at a time.
  • Fatigue and meltdowns make it so difficult to do things around the house. I’ve learned to do things as I can because pushing to finish anything isn’t possible for me.

No one understands

  • This sums up my life perfectly. I HATE the unpredictability of this disease. Especially when “I look so good!” but my body’s numb. Or I can’t lift my leg. People just don’t understand what its like. No matter how much they try to empathize they’ll NEVER understand it. Like the phrase goes, “no one Gets MS Until they GET it”.
  • This is something I wish all my family and friends understood.
  • No one understands what MS is doing to you… You have to listen to your body. You will lose people because they just don’t understand… Keep positive and Never ever give up!!
  • I wish my grown children would understand this.

I won’t let MS run my life

  • It never stops me. I’m going to Thailand, jumped out of a plane, to work I drive a modified car, and I play wheelchair basketball for my local team.
  • One day at a time is all you can do.
  • It’s not about having a good day. It’s about having a good minute!

What about you? Do you struggle with planning? Do you find that friends and family don’t understand?

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Meet New MSAA Guest Blogger Lauren

By: Lauren Kovacs

My name is Lauren Kovacs and I am 41. The stress of moving from California to rural Virginia poked the MS monster for the first time at age 16. My official diagnosis didn’t show up on stage until I was 21.

I was a pediatric patient with optic neuritis. This meant no learning to drive, no depth perception in gymnastic, and crashing into hall walls at school. I was not in a good place, but the MS monster had only stirred.

After nine months, my vision returned. Life went on. I went to college and made the university’s cheer team. MS was never the diagnosis at 16.

I worked part-time, took a full load of classes, and was a college athlete. The summer before my senior year, after a very tiring and hot week at cheer camp, I got sick. I rode home on the floor of the student-athlete van. I unknowingly had poked the monster again.

The next day, I went numb from the neck down. So began my quest for an answer. Some thought it was a virus and others thought I had been dropped in cheerleading camp and had a slip disc. I stumped all the athletic doctors for the university’s athletes. Cool. The best was a civilian doctor who told me I had a stroke and sent me back to campus with muscle relaxers.

I went back to my original neurologist. An MRI and other tests came back showing MS. The doctor told me not to research it. I was sent back to school. Confused, alone, angry, and tired was the casserole I was served. Newly diagnosed and alone, questions swam in my head and some chocolate in hand, as comfort.

I didn’t make it to nationals for UCA and I felt my teammates were more worried about re-doing the routine without me than my devastating diagnosis. Some even accused me of faking in order to skirt practice.

I kept going. I pushed on. I graduated, got a job, and married my sweet heart. I saw a new doctor who put me on Avonex. I had baby boy one. Four months later, I was hit with a horrible flare leaving me numb from the neck down again. After slithering around on the floor with a new baby, IV steroids were prescribed. Life went on. I did Appalachian clogging and was very active. I started figure skating instead to combat the heat.

Baby boy two arrived without any MS issues at all, except my fall down the stairs, which I can blame on MS. He was premature with health issue. A toddler and a sick infant meant stress. I finally changed doctors, after five years, because he refused to prescribe anything, but Avonex. He kept telling me I would get used to it.

The new doctor prescribed Copaxone, not long before we moved to North Carolina. I took Irish dance lessons, once we moved. The two boys were doing well. Heat, fatigue, and stress were manageable. The monster appeared to be contained.

Baby boy number three arrived and that began my slow decent. The monster was waking up. I was able to nurse for eight months. I was thrilled. IV steroids forced me to end that scene. However, they did their job and I changed doctors again. That is five neurological, if you are counting.

I had a new doctor who finally believed three healthy boys and me. Life was good, too smooth really. When my youngest was four, rocks were being thrown onto my path. The Betaseron was no longer working and I began sporting a cane. The monster was fully awake.

No worries, I can adapt, I thought. We took a Disney cruise with friends and when I had trouble walking onto the boat, I knew things were changing. I sat and waited for a cast-member to get a wheelchair. I held back tears, but the cast-member said I would enjoy my trip more. I did, but I felt crushed.

By the time my youngest was in first grade, I used a walker. I was also head cheerleading coach at their school. I was officially handicapped and life was getting tougher.

Here I sit, now. I only use a walker in the house. I crawl on my hands and knees, if I am not steady. I have the kids make dinner and there have been times I instruct from face down on the floor. But, I do it and I fight.

MS is a battle and you must never give in. Being realistic and humor go hand in hand with MS.

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Taking a Break

Sometimes we all just need a break from things. No matter what’s going on around you—whether it be in your relationships, work, family roles, etc. there are times when we need to take a step back and reflect on ourselves and our needs. Everyday challenges and obstacles can be difficult enough, but throw something like MS into the mix and the stressors can sometimes multiply. MS demands much from everyone it touches; unfortunately it makes no exceptions or allowances if there are other things already going on—it’s selfish that way. So there are times when those caring for individuals whom MS affects need some respite care-time to themselves.

The term respite means taking a break or relief period from something that may be somewhat stressful, difficult, or challenging. Those who provide caregiving to others may need periods of respite, even if it’s just for a brief time where they can step outside of their environment and do something else. This can be very important in relationships where a loved one provides care for another family member. Relationships themselves require a lot of maintenance most of the time and for them to continue working there are moments where those involved need space and time to themselves.

It’s an innate, human characteristic to feel the need to distance yourself from others sometimes. There are times when we all need to pause and catch our breath and examine our own needs, especially if we’re providing care to others around us. We need to be able to self-care in order to be depended on. There are different types of respite services and resources available, especially to care partners so that they can take time for themselves or other things and know that their loved ones are being cared for.

The following resources can help when searching for respite service information:

Family Caregiver Alliance
Phone (800) 445-8106 www.caregiver.org

Caregiver Action Network
Phone (202) 772-5050 www.caregiveraction.org

Eldercare Locator
Phone (800) 677-1116 www.eldercare.gov

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You and Your Neurologist: One of the Most Important Relationships

By: Meagan Freeman

Finding an excellent Neurologist is one of the first things we need to do after diagnosis with MS. It can be very difficult to choose a random name from a list of covered providers from our insurance companies, and without a solid recommendation from someone we know, we often need to take a “test drive.” Patients and providers are much like any relationship we have in life: Some personalities are a perfect blend, and others will never work together. It is incredibly important to seek out a provider who is not only medically competent, but also a good fit for your personality.

I find that some providers are cold and distant, only seeing patients as a disease process. What about the mind? We are so much more than a body. Providers should always see the patient as a mind-body unit, addressing the full scope of chronic illness. Psychological and emotional symptoms are common, and no one should leave an appointment feeling dismissed.

I am a family nurse practitioner, and we are trained from day one to see the humanistic side of medicine, to view the patient as a whole being, rather than the sum of the parts. The body cannot be healed without addressing the spiritual, emotional aspects of the human being. After being diagnosed with MS, I appreciated this manner of teaching more than ever before.

There is an intricate, indivisible connection between the body and the mind, and treating only one while ignoring the other will never prove effective. There is, what we call in medicine, an “emotional overlay,” to almost every physical issue. Whether this means that the condition is purely psychological, or whether the mind is reacting to a physical issue (anxiety, panic attacks, depression,) the mind must always be taken into consideration when treating every patient.

Our society is very quick to assume that modern medicine has all the answers, a secret book of treatments, available only to those who have attended medical school. This magic book contains all of the recipes for treating illness, and is kept hidden, under lock and key. The providers of the world are assumed to have the ability to fix anything, treat anything, and if they do not offer a fix, they are assumed to be withholding treatment intentionally.

I can tell you, this is not the case. One of the most shocking things I learned while transitioning from a registered nurse to a nurse practitioner was the absolute limitation in options we have as providers. We only have a few things to offer, a few laboratory tests, an x-ray or two, a few medications that may or may not be effective. Most medications also go along with an enormous list of potential side effects that have to be taken into consideration. Many prescription medications are not necessary, and can lead to a variety of new problems. The risk versus the benefit of any treatment needs to be considered. Treating physical illness is not only a science, but also an art; and sometimes, providers simply run out of ideas. Every possible treatment option has been exhausted, and there is simply nothing further to offer. I find that patients are shocked when this is the answer. “What do you mean, there is nothing left to do?” Sometimes, the answer is just that, and we are left trying to cope with our “new normal,” whether it is pain, numbness, weakness, or any other symptom.

When you visit your provider, keep in mind that they may not have an answer for every question you have. Your provider is doing their best, I am sure; but the answer “I do not know,” is an acceptable one sometimes. I always trust providers who admit that they do not have an answer, because this is honesty. If your provider says, “Well, if you really want to take something you can try this…” this is code for- “you really do not need this.” Sometimes, in medicine, less is best. The minimalist approach to treatment is wise, and so many patients have been “overtreated” in recent years. Too many medications, wasteful, unnecessary diagnostic testing, and the resulting side effects and anxiety are major issues in medicine currently. Patients and providers need to take a moment and ask themselves, “Is this really a necessary test or treatment?”

Trust your body to be able to handle most minor issues. Your body is an intricate, well-constructed, dynamic machine that is much wiser than we are as health providers. Now and then, the body might need an extra hand at combating an infection, but not always. Listen to your body! Prevention is the key! Get your immunizations, get some exercise, eat healthy foods, and obviously avoid smoking and alcohol. MS aside, we all need the same basic advice on remaining healthy and living the best life possible.

Questions to Ask Your Provider at Appointments:

1. Do you feel that my disease is well controlled with my current medication?
2. If not, are there other medications available that you would recommend?
3. Do you recommend any other treatments for my current symptoms (alternative or traditional?)
4. How often do you recommend appointments and MRI?
5. Is there any new research that has become available since my last appointment?

Try to develop a relationship with your provider, and if you feel dismissed or ignored, it may be time to consider a change. Like any relationship in life, some people just don’t “click.” But in this case, your health is at stake; so don’t be afraid to find the right fit for you.

*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.

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