The Social Butterfly

By Lauren Kovacs

Staying social is a huge obstacle for many people with MS. Even before MS, I was more of a wallflower than a butterfly. Now, I struggle with my inner hermit. I think I might be allergic to people.

Like a butterfly that has two wings for balance, so does a social life with MS. Balance is key to our safe and an even flight into the world. We cannot fly with one wing.

Socializing outside can inject heat into your plans. Just as you pack for a beach trip, pack your MS bag. Be prepared for anything. Good thing my sons are Boy Scouts. Being prepared is their theme.

Planning ahead makes for a smoother flight. Look at the temperature and the humidity level. Know where and how close bathrooms are. For me, heat boils my guts. Bubble, bubble toil and tummy trouble is my summer cheer.

Stay cool however you can if you are outside. Jumping into lake water might be your only option. In my case, flopping off the edge of the boat or being thrown in is my method. Air conditioning is best. Don’t suffer in silence. Butterflies are silent creatures, but let people know when you are too warm.

You need to know your limits. Boating above 80 degrees with high humidity is not an option for me. The lure of delicious KFC chicken and a good time are not enough for me to risk turning into a wet noodle with tummy issues.

Be a social butterfly when you can, on your terms. Butterflies are cold blooded and like the heat. However, like there are thousands of different butterfly species, heat effects us all differently. A wet rag slurring his or her words is no fun to be around. You don’t want to be a hermit, but socialize smart.

If my feet are cool, I feel better. Investing in several pairs of sport/water sandals is a must, for me. If I am neat water, my feet are in it. I always make sure to get a fabulous pedicure. Painting my own toes is just ugly.

It is a struggle to be social in summer. Be a butterfly when it is cooler. Sitting around a fire pit at night toasting marshmallows can be just as fun as boating with friends. Slap on some bug spray and enjoy the night. Butterflies are sleeping, but the owls are out.

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MSAA Joins Spasticity Alliance

Spasticity Alliance

Spasticity, which is an involuntary tightness or stiffness of the muscles, is one of the most common symptoms of multiple sclerosis (MS), affecting approximately 80 percent of those living with the disease. Among other issues, it can be painful and limit movement. Like many MS symptoms, spasticity can have a negative impact on a person’s quality of life.

To increase education surrounding this symptom and treatment strategies, the Multiple Sclerosis Association of America (MSAA) is proud to announce that we have joined with the National Stroke Association, United Spinal Association, United Cerebral Palsy, and the Brain Injury Association of America to form the Spasticity Alliance, found at www.spasticityalliance.org. Together, our goal is to raise awareness about spasticity and help people living with spasticity resume normal daily activities.

This site, launching in conjunction with Spasticity Awareness Week (June 13-19), features a variety of educational resources, multimedia tools, and personal stories of those with different health conditions living with spasticity. The Spasticity Alliance hopes to empower individuals and their family members through these valuable tools, along with offering effective management options.

Spasticity Alliance Learn More

 

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Social Benefits

Sometimes it’s really difficult to maintain relationships and stay social with others around you. This can be due to a number of reasons and factors. Life in general creates enough hurdles and curveballs that prevent us from staying engaged and interacting with others, at times it’s simply because things get in the way. Having a chronic illness like MS can certainly make staying connected even more challenging as the disease comes with its own agenda and unpredictability. But it’s important to try to stay socially linked to people and support networks around you, because it can be beneficial in more ways than one.

It’s understandable if there are times when you don’t want to reach out to others and engage in social interactions, it happens to everyone. There are moments where we just want to be alone and process things on our own. However, making ties and maintaining relationships can create added benefits to one’s life. Positive connections can help to boost your mood and attitude, especially when surrounding yourself with encouraging and optimistic people. Staying social can create a sense of cohesiveness and camaraderie with others. These bonds may form even stronger if the same types of values, goals and experiences are shared—or if they are not, there is infinite respect in the relationship to appreciate these differences.

Having a chronic illness can sometimes cause feelings of isolation and separation for those affected—a feeling of being alone in what’s happening because others do not know or understand the condition. That’s when connecting to others who have similar backgrounds or experiences can help. Sharing the same types of feelings, thoughts and hopes with others increases a sense of belonging and validation in knowing you’re not alone in your experiences. Social engagement can help decrease stress levels and keep your mind active which can also aid in improving your overall health. And it doesn’t matter what type of social activity you’re engaged in; whether it’s taking a walk or ride, going out to an event, talking on the phone or attending a group, what matters is the connections you’re making and the positive benefits they have on your well-being.

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Maintaining a Social Life Despite MS

By Meagan Freeman

Sometimes, I avoid social contact because I fear that I might need a helping hand from my friends due to my MS issues, whether that might be a simple door being held open, or help with bags. This need for assistance keeps me from interacting at times, and I realize that I may not be alone in my feelings. This fear of dependence might keep us from enjoying our friends and family, and this is not something we should ever allow. I detest feeling dependent on others, especially my close friends and family. In fact, one of the first thoughts I had after my MS diagnosis was: “I refuse to be someone’s burden!” 

There are little things that happen each day, my inability to open a jar, my inability to drive at night, my fatigue in the afternoons. Then, there are larger issues such as my ability to earn a living the way I used to, the missed children’s football and soccer games due to heat and flares, and the emotional impact this is having on my husband and children. How do you cope with this loss of independence? It is almost inevitable that this diagnosis goes hand in hand with increased dependence on others.

The MS patients I have met in the last few years are just like me. Have you noticed that? Most of us are very strong, stubborn, independent individuals who feel just as I do. I find myself feeling guilty every time I have to ask for help. Apparently, this is my life lesson, my challenge, my big obstacle to overcome.

As I examine my motivations and feelings more closely, I realize that a lot of these feelings are purely my ego. I gain self-esteem from being independent, and I always have. I have had a constant little voice in my mind throughout my life asking “would I be okay if I lost everyone I know?” My answer was always a resounding: YES! However, now I realize that this was not a healthy mindset. Now, I have much to lose.

In the past, I mistakenly saw my lack of dependence as strength. I thought that because I had nothing to lose, I was untouchable emotionally. No one could ever hurt me if I did not care that much. I needed nothing from anyone, and I liked it that way. Boy, was I wrong.

We need to feel supported by others. It is a basic human need.

The question then, is: How do we do this? How do we accept our small (or large) losses of independence? My answer is that our loss may actually be our gain.

When we ask for help we:

1. Show that we are trusting of another human being.
2. Show that we are in need at the moment, but not forever.
3. Develop a bond with another human being.
4. Form the foundation of a long, connected relationship.
5. Create an opportunity to help someone else in the near future.

How great would that feel? To know without a doubt that your friend/spouse/caregiver/family member will always be there for you, no matter what? This is what I gain when when I lose. I may need a hand opening my next jar, but I have a lifelong bond with my spouse that is strengthened each time I need a hand.

Do not mistake needing help for weakness, or independence for strength. Strength comes from building a strong relationship with those closest to you. This is where our true strength lies. Socializing is an important part of our lives, and MS should never stand in the way of enjoying activities with those we love.

*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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Who’s in Your Social Network?

It’s beginning to look a lot like Summer. Rising temperatures have engulfed many parts of the country as we head into three months off for many schools and time marked by vacations, day trips and outings around town. One of the things often associated with summer are the get-togethers with friends and family, cookouts and time to connect. After the long chill of winter and rains of spring, being social and connecting with others can breathe new life into our daily routines. But being social can also be difficult to manage and navigate. Where to start and what to do to put yourself out there are some questions that you may ask as you venture into being social. Here are some helpful things to keep in mind this time of year as you look for ways to put yourself out there.

  • Set a goal: This summer I want to make one new interaction a week. Goals are important, they keep us accountable and give us something to aspire to. Make sure your goals are reasonable, obtainable and of interest to you.
  • Reach out to volunteer: Volunteering is a great way to meet new people, discover a new interest and also give back to the community around you. There are sites such as Volunteer Match as well as your local community center than can help you get started.
  • Plan something you’ve wanted to do: Maybe you’ve been saying you want to have people over or get together with a friend who you haven’t seen in a while. Now’s the time to reach out and put something in the books.discuss
  • Give the internet a try: Now I know the internet is pretty much part of all our lives and one of the reasons is it’s ability to provide us with new and fun ways to interact. Join a new online community such as MeetUp.com where you will be able to find local opportunities to join others interested in board games, cooking classes, paint nights and any number of activities.
  • Give yourself a break: Doing new things and getting out there to meet new people or even planning things with those you know can be a lot, but it doesn’t have to be overwhelming. Give yourself a break if your goal is to make one new interaction this summer or you have to reschedule that dinner with friends. What’s important is that you are seeking the engagement and building new connections.

Staying social is great to our overall well-being. It gives us outlets, keeps us connected and provides other individuals that we can reach out to in times of need. This summer add some points of contact to your social network.

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Making Relationships a Priority When I’m Tired and Everything is Important

By Stacie Prada

I didn’t worry about needing to consider my social life as it related to my health before I was diagnosed with MS.  The downside was I also pushed myself beyond my limits and consequently averaged two exacerbations per year. Unknowingly I was adding stress to my body and accelerating my MS disease activity.

Spending time with friends and going on adventures were something I believed I should be able to do, and I didn’t see fatigue as a symptom of something larger and more serious. I still believe I should be able to spend time with friends and experience adventures, but I now weigh and budget the energy it takes with the joy I’ll experience.

The Harvard Study of Adult Development tracked men for 75 years (and counting) and showed that people with good quality relationships with family, friends and community are not just happier than people without good relationships, they are also physically healthier. They experience less memory loss, pain doesn’t affect their mood as much, and they’re generally more resilient.

As such, I see my relationships as imperative to my future health.  Investing time in my social relationships is not optional.  MS symptoms like fatigue can make it more difficult to build and maintain those social connections.  When work, bills, housekeeping and everyday tasks take more energy than a person has, it’s easy to turn down invitations to social gatherings and become isolated.

Rethinking beliefs:

I grew up believing that school came first and only after you get all your work done can you get the reward of playing with friends. As an adult with a chronic condition that affects my energy level, I’ve learned that this approach feels like constant punishment. It also neglects the human need to have more in life than work. I’ll never have enough energy to do enough of the good stuff I want to do after all the work is done.  To compensate, I pace myself on things I need to do, reduce the effort it takes to do them, and save enough energy for the good stuff in life. Among the good things are spending time connecting with other people.

I’ve heard the saying that to be rich, a person can make more or want less. I translate that as to be more energetic, I can make more energy or use less energy. I can do things that recharge my energy level, and I can conserve my energy by reducing the effort it takes to do things.

I boost my energy by exercising, eating nutritious food, being organized, pacing myself and resting. I’ll conserve my energy by streamlining, prioritizing, and delaying or delegating tasks. Doing these things allows me to feel confident that I’m doing the best I can, and it allows me to feel justified in placing a high priority on fun and relationships.

Prioritize Joy and Relationships:

A terrific method to maximize joy with limited energy is to double up on the benefits by combining things that need to be done with social interaction. I’ll go for a walk with a friend to combine exercise, social engagement, time outside getting fresh air, and time not eating or doing other things I should limit.

If I need to do some shopping, I might go with a friend who can drive and help me find what I need. I make sure to allow time to rest before, during, and after the excursion. It often changes the experience from one that can be draining to one that is invigorating and recharging.

I’ll reduce the effort it takes to participate in social events.  I’ll shorten the length of time I’ll stay, but I’ll still show up. Sometimes I choose events that are easier to do and less physically taxing.  Other times I’ll choose events that may require a lot of energy but are rewarding and worth the effort.  If I love it, I make sure I streamline and reduce other activities so that I can have enough energy to do the one that’s a big deal.

The level of effort it takes to engage socially vastly ranges. I can choose how I want to connect at any time based on my level of energy and the relationship I want to maintain:

  • Text
  • Write an email
  • Write a letter or send a card
  • Call them on the phone
  • Skype
  • Meet for coffee, lunch or dinner
  • Go to a movie together
  • Exercise with a buddy: Go for a walk, hike, bike ride, swim, etc.
  • Go to an event: Attend a concert, museum, or dance
  • Plan an adventure
  • Take a trip, visit family, explore new places with someone

It also helps to explain to the people in your life how MS might limit your activities and that you’ll do your best to stay connected. While talking on the phone with my sister one night, we were having a very engaging and fun conversation when I hit the metaphorical wall.  I interrupted her, “I’m sorry, but I need to go now so I can go do nothing.”  We laughed at the time, and I still crack up that I could say that to her without being rude and without her feelings getting hurt.  It’s important and empowering to recognize when to push myself to be socially engaged and when to quit while I’m ahead.

biking break cropped

*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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June 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.

June Artist of the Month:
Elana K. Rosen – Cincinnati, OH
Lunchtime Dining
Elana K. Rosen - Lunchtime Dining

About the Artist:
“My name is Elana K. Rosen and I have always drawn and painted. I was diagnosed with MS in my thirties. Occasionally I have a hand tremor. When this happens my art is looser and I cannot paint detail. Painting makes me happy and helps me feel a sense of accomplishment.”
Read more

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Staying Social with MS

By Matt Cavallo

Many of you who follow this blog may have noticed that I haven’t posted here in a while. That is due in large part to a massive MS relapse I suffered in March and April. The relapse rendered me non-functional on my right side. I developed drop foot and could barely walk. My face drooped on the right side and I couldn’t squeeze my lips tight enough to drink without dribbling or even swish water while brushing my teeth. Most devastating is that my right arm and hand were completely numb. I couldn’t lift it or feel any sensation other than pins and needles. I also couldn’t pick anything up with my right hand and couldn’t grab a pen, keys or even type.

April and May were spent mostly in recovery, waiting for my functionality to return.  As a result, I wasn’t writing. Writing wasn’t the only thing I was avoiding. I didn’t want my friends to see me while I was in a relapse and recovery mode. I started isolating myself to anyone outside of my house. I missed events at school for my kids and major events like a good friend’s baby shower. (Actually, I briefly attended that one but quickly left due to embarrassment when I dropped a plate of food in the buffet line due to my numb hand). This also took a toll on social interactions at work. I travel quite extensively and all of a sudden I was asked to stay home instead. While it was for the better, it still changed the dynamics of those relationships.

Deep down I knew avoiding everyone wasn’t healthy, but I also didn’t want anyone to see me in my current state. I have spent so much of my life and professional career showing people how well I am managing my MS and to have this severe a relapse really was damaging to the way I felt about myself. While my wife was a rock, I could see that my condition was taking a toll on my two young boys, age 6 and 8. I couldn’t participate in their activities and they had to watch their dad go receive home infusions and struggle with mobility. All of a sudden, I found myself in the throes of depression. I knew I had to take action, but I didn’t know where to start.

The first thing I did was talk to my neurologist. Since I was having a major relapse, my neurologist was seeing me every two weeks to monitor my recovery. I disclosed to him some of the concerns I was having at home, at work and with friends and he suggested that I talk to a psychologist. While I thought it was a good idea, I decided to manage my depression on my own. This was a personal decision, if you are going through something similar, please reach out to someone who could help.

I decided to have a talk with my boss. He completely understood and supported me in my recovery. He appreciated that I was being open and honest with him. He reiterated that I was a valuable member of the team and that my health was the most important thing. He made changes to my schedule to accommodate my disability.

Next, I started having discussions with my friends. I reached out to some close friends to meet me for dinner. I explained everything I was going through and they were very sympathetic. Like my boss, they wanted me to know that they valued me as a person and that my MS was a part of who I was and that it didn’t change the way they thought about me at all.

Finally, I had a talk with my kids. I explained in the best way I could what was going on with my relapse and recovery. They hugged me and told me that despite what I was going through, that I was the best dad in the world. My wife has been my rock through this and I couldn’t have started my social outreach if it hadn’t been for her support and understanding.

Some of you may have a hard time staying social with MS. Maybe you are withdrawing from your family, friends and work, like I was. I just want to let you know that you are not alone. Being diagnosed with MS, losing functionality, dealing with devastating fatigue is a lot for a person to handle. To further complicate it, the people closest to you may not understand what you are going through. Everyone deals with MS in a different way. I just want to let you know that if you are feeling isolated or depressed, there are people out there that can help.

If you are feeling the same way, here are some tips that can help:

  • Talk to your neurologist, or other doctor, about how you are feeling.
  • Tell your friends, family and coworkers what you are experiencing. Even if they don’t completely understand they will want to be involved in your life.
  • Attend a support group meeting, MS webinar or social media MS group. There are opportunities to network with other people living with MS like you and sometimes it is nice to have a conversation with someone who understands.
  • Don’t overdo it. When I first decided to reengage socially, I pushed myself to the limit and wound up being really fatigued. If you set expectations and don’t overdo it, everyone will understand.

This last relapse was a tough one. It made me pull away from the people and the things that I love. I stayed isolated and depressed for a while. I decided to talk to my doctor, friends, coworkers and family about how I was feeling and together, we got through it. If you are having trouble with MS, staying social just might be the support you need.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Celebrating Memorial Day

Memorial Day is considered by many as the official start of the summer season. Some of you may be celebrating by going to a cookout with friends and family. Some of you may be heading to the beach to enjoy the sun. And some may just spend the day relaxing. No matter how you enjoy your holiday, it’s important to reflect on and remember what the day represents. Memorial Day is a time to remember those who have served in the US military; those who fought for our country and dedicated their lives to keeping us safe.

On this day of remembrance, MSAA honors all of the men and women who served this country so courageously.

Please note that MSAA’s offices will closed on Monday, May 30th, in observance of Memorial Day. 

Have a safe and enjoyable weekend!

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What You Wish They Knew About Your MS

Many people have heard the words “multiple sclerosis” before, and probably know it’s a chronic condition, but so many do not know what it really means to have MS. We asked our community at MultipleSclerosis.net “What’s one thing you wish more people understood about MS” and the responses were phenomenal. Below you’ll read real experiences from people just like you that start to paint a picture of what MS is really like. These are the things people should be aware of; this is how we spread true MS awareness!

I’m Not Drunk!

  • My memory is not always good! My husband and children understand and are patient, but people who don’t know look at you like you are drunk or high
  • She’s not drunk. She doesn’t even drink. It’s the MS that makes her off balance sometimes
  • I am not drunk, I am not dumb, I am not lazy – I have MS
  • Don’t tell me I seem drunk when I trip – It’s not funny

I Miss My Active Lifestyle, Too

  • If only others understood how we miss our active life before MS. It’s bad enough that we often feel like a burden, being treated as one is pretty much the worst feeling
  • Sometimes I feel depressed not being able to do what I used to be able to do – others just don’t get it
  • People always knew me as being active, and now they never see me. I just wish they would come by sometimes. All I need is to know someone out there cares

When I Say I’m Tired, I’m Tired

  • When I say that I have to go home early because I am tired, I am really tired. It´s not because I am lazy, it´s not because I am bored or boring, it’s because I am tired!!
  • When I say I’m tired, I’m not being lazy. And when I say my body hurts, Aspirin will not help
  • I wish they understood that my tired is not like their tired, and my pain is not like their pain
  • Just because I look healthy does not mean I am and when I say I am tired and need to sit down, it’s not a joke! 

Every Day, Every Minute, Is Different

  • I wish they understood that every moment is different. I can be good one minute and not the next
  • I wish people understood that my mind and body change every moment of every day
  • One minute I could be fine, but then next I’m not. I put on a brave face, but don’t assume I’m “fine”
  • Don’t ask me how I am if you don’t really want to know

How about you? Do you ever feel misunderstood? What do you wish more people understood about life with MS? Share this article and your own stories and experiences to spread the word about what it really means to live with multiple sclerosis!

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