Community Thoughts on Apologizing for MS

The impact of MS on a person’s every day life can be profound. There are good days, and then other days that are just downright terrible, for a whole host of reasons. One of the contributors at MultipleSclerosis.net, Nicole Lemelle, wrote an absolutely touching story about one of her particularly bad MS days where she had embarrassing trouble with incontinence, and her husband stood by her side. She shared: He asked me “Are you alright?” Totally embarrassed, I shook my head yes and continued to softly cry. He lifted me to my feet and walked me over to the toilet. I sat there while he helped me get my clothes off and then assisted me as I got into the bathtub. I ran the water and he got me towels. As I sat in the tub soaking he cleaned the urine off the floor. It was taking him a while as it had spread throughout the bathroom. I sat in the tub watching him. I started to think that he didn’t sign up for this. If I were only normal again this would have never happened. I just kept saying, “I‘m sorry. I‘m sorry. I‘m sorry.” From his hands and knees while crouching in urine, he looked at me and said, “Don’t ever apologize for having MS.”

Nicole’s story struck a chord with our community, and so many people reached out to share their thoughts and stories with us. Here is what they had to say (and to read Nicole’s full article, click here.)

It’s hard to deal with bad MS days

  • Reading anything from Nicole usually makes me cry, and today is of no exception. I’m stuck in bed going on a month now with my latest “perfect storm”. Ear infections in both ears, a sinus infection, and the recent diagnosis of Mono is simply too much to handle right now. I also got the bad news that I’m too sick to fly to Florida and see my son graduate from high school. MS has taken so much from me that I don’t recognize myself anymore.
  • ‪I wish we MS people could all just get together and have a good cry sometimes.
  • I feel so out of place at times.
  • I can sadly relate to every word! I don’t remember what normal was like. I find myself often wondering what my life would have been like, if not for MS.
  • I’m saying a prayer for you. Your post made me cry, for you, for all of us. I’ve missed “normal” the past few years, but especially the past few months. It’s gotten very hard. I almost don’t remember what “normal” is, and maybe that’s a good thing.
  • I work a full time job and also have epilepsy (seizure free 10 years now). I have to do my shot on Friday night which, in turn, takes my Saturday away because I am sick. Not much of a life. Makes me so angry
  • I’m forever apologizing!
  • I feel like I have been put in a corner my family buzzing around me. I feel like a nonentity and like I shouldn’t be around
.
  • Thankfully my husband and now grown children understand completely. However my mom, who is staying with me for the next six weeks, just worries and does not understand if I take a nap that lasts until the next day. She fears something is wrong with me but won’t accept it MS that is wrong with me. My husband is away on business for the next three weeks causing me to do all the tasks at home. Cooking, cleaning, shopping. Things I could always do without a thought or care and now I struggle to complete and suffer after.
  • When I got my diagnosis last summer I cried on my husband’s chest as he hugged me. I have so much guilt of putting him through this life with this and that I may have given this to my kids. I miss me and I miss our lives before this. We were long distance cyclists, runners, skiers, scuba divers, horseback riders and now…?

I no longer apologize for my MS

  • I used to apologize all the time for being unable to do things and finally I woke up! I was at a family event and my mother was pushing me to do something I was unable to do and I apologized, and then suddenly it dawned on me, and I said NO, I do NOT apologize! I can’t do this and it’s NOT my fault, whether you want to believe it or not I’m ill and you shouldn’t even ask me to do it.
  • Reading your words made me feel more normal (what’s normal anyway?), made me sympathize, made me cry for myself and for anyone else with any nasty disease to deal with BUT your words made me realize that I don’t have to be SORRY for having MS.
  • I like everything you said about not apologizing. Right now I’m in the hospital and asking so many people to help do things at my house. I HATE IT!!! Someone is going to stay there. Meanwhile I have no clue what my body is doing this time. I’m scared I won’t return to how I was last week. I want someone to be there for me like your husband. Mine left years ago because I was no fun

‪



.
  • I also have been struggling for 20+ years. I’m 47, and I feel exactly the same way every day but we are alive and on this earth if only just to comfort & support…be strong inside.
  • I have never felt the need to be normal, before my diagnosis and after. Normal is boring. I have always been different and always embraced it. As they say, “different stokes for different folks.
  • And I thought I was the only one with a husband that goes above and beyond! He’s always trying to fix things-it’s sweet, but every now and then I have to remind him I’m not fixable at the moment! He means well
  • Oh my God. This is my story as well, but it happened in the hallway on carpet. My husband didn’t bat an eye. It’s just carpet he said.
  • I don’t feel I need to apologize for not being able to do something.
  • After your initial diagnosis of MS there is no normal. I have learned to appreciate the good days and plow through the bad days. Reading what everyone writes helps me know I am not alone. God bless you all.
  • Sounds like my husband. I am totally blessed with a man who loves me despite this horrid disease
  • Please don’t be discouraged. Your life has become something different. It’s hard to imagine, but life has a strange way of presenting new realities sometimes. Your husband is an angel sent to help; I too have an angel and I am thankful every day.
  • I remember before 2006 I would go out have fun, dance. I don’t do any of that any more, especially at night. At around 3:00pm I start going down hill. If I’m up and out I try to be home around 3. Having MS truly changed my life. I have a truly wonderful caring husband who loves me unconditionally. GOD made that possible.
  • This IS normal! And it’s not like we camped out at MS headquarters to get a jump on anybody else so we could be first to get this great disease. Nobody knows why we get MS, but I’m pretty sure it’s not our fault. We do the best we can on any given day. And if wetting our pants is part of that day, then so it is. It’s messy, but how bad is that? I’m glad you have loving patient partner to help.
  • I have been re-reading this article over the last couple of weeks. It so touchingly addresses the fear and shame that underlies the diagnosis of MS I’ve been getting my head around since February. Always the strong person, the one who is leaned on, who am I if my strength is gone? Well, reading your words shifted that perspective. Your sharing of this shows your strength, the strength of your relationship and the guts to look at things in the eye. Thanks so much for sharing this.

What about you? Do you find yourself apologizing for your MS? Please share your thoughts with us!

Share

Sometimes Things Change…

Change is something that can be unavoidable at times and not always favored, nor asked for or necessarily welcomed. Though sometimes it can be difficult, there may be times when change is needed to make certain things more manageable. As it can be known to cause shifts in all types of roles, relationships, plans, or daily routines, adjusting to change can have impacts not just on yourself but those around you as well. One of the significant pieces needed throughout the change process is communication. Communication with family, friends, support networks, medical teams and others within your circle is important to be able to discuss what change has occurred and what can be done to accommodate it.

When dealing with something like a chronic illness, change can particularly affect family and relationship roles and dynamics. This can be difficult for all the family members involved. It can be difficult to change a routine and how things used to flow from one day to the next.  Say one family member has been known to be the ‘caregiver’ to the others, taking care of the household duties and responsibilities. What if they suddenly need to be the one being cared for due to an illness? This can create a shift in how the household duties are shared and now need to be assigned to others.

Communicating how these changes affect the relationships is important. Feeling frustrated, confused, or even angry at times is ok because things are different. The critical point is to make sure that these thoughts and feelings are expressed to ensure that all people feel they are heard and that their feelings are validated and valued. Seeking some type of family counseling supports can be beneficial to talk about change in a safe and open format—so that all of those affected can discuss it.

Has change affected any of your relationships? How did you approach this?

Share

Building a Relationship with Your Healthcare Provider

Not long ago, patients expected their doctor to tell them what to do about their health and doctors expected patients to follow orders. With the growth and expansion of technology, individuals are given an opportunity to read medical journals, watch health-related television, and visit information sites regarding their specific condition.

With the expansion of medical knowledge, there has been a shift in the doctor-patient relationship. Patients are now expected and encouraged to ask questions and have medical discussions about their care. Some doctors are more open to this relationship than others, so how do you build a relationship with a doctor who may not be as open to this type of relationship?

Communication in any relationship is a key factor; having a discussion with your doctor about what you are and are not comfortable with is very important. By having this conversation, assumptions about what you may or may not know about your disease, or the treatment options is avoided. You have a right as a patient to receive appropriate medical care and the right to have your voice heard.

Just like any relationship, if you do not feel comfortable or feel as though your voice is not being heard you have two choices, leave the relationship or work to change it. Have you had to have a conversation with your doctor about your relationship? What was that like for you? Do you have any advice for others?

Share

Splash for Multiple Sclerosis on Memorial Day

This Memorial Day, MSAA invites you to join our team and help us make the BIGGEST splash yet! Whether you’re a swim enthusiast or just enjoy the water, there are numerous ways you can participate and be a part of MSAA’s Splash for MS Memorial Day Team.

Here’s how YOU can participate:

  1. Register on MSAA’s Splash for MS Memorial Day Team today and get your Swim for MS swag to show off while you’re having fun in the sun.
  2. Make a donation to the event! Click here to make a donation toward our goal.
  3. Already registered to Swim for MS? Email us at swim@mymsaa.org and we’ll add you to MSAA’s Splash for MS Memorial Day Team.
  4. Tweet, Instagram, or Post a picture of you and your friends and family making a splash on Memorial Day! We will be posting pictures of team members showing their support for the MS community all across the country so don’t forget to check out MSAA on all your favorite social media platforms! #SwimForMS #MemorialDaySplash
  5. Don’t have a pool? No problem! Get in on the fun at your nearest beach, river, or even your backyard Slip ‘N Slide! Take a dive, swim laps, dip your toes in the water, or just float your way through Memorial Day.
  6. Any Pool, Any Time, Any Way you Swim for MS helps Improve Lives Today!
  7. The first 10 people to register by May 15th will receive a very cool Swim for MS carry-all cooler chair!

The great thing about this event is that you can choose how you’d like to participate – swim laps, makes some waves in the ocean, or run through the sprinklers with the kids! Click here to register today!

 

Don’t forget that Swim for MS is a year-round fundraiser. Even if you can’t participate this month, any time is the right time to dive into action to show your support for the MS community. Any pool, any time – the choice is yours!

Share

Making Friends and Finding Support

Making friends as an adult can be a challenge. Often the friends we have as adults are those we have grown up with, either through grade school or college. Sometimes those friendships change and we find ourselves looking for new friends, or friends that share a common interest, skill, or lifestyle.

Individuals diagnosed with MS may be looking to make connections with others that are diagnosed, but have a hard time meeting people face to face. There are several opportunities available to promote friendships and support to those diagnosed and their family members.

Social media can be a great way to get connected, just be comfortable knowing that your diagnosis or personal information can be shared online. Facebook groups allow individuals throughout the world to connect and share information; search in Facebook ‘multiple sclerosis’ and find a number of private or public groups. Online message boards such as MS Connection or MS World can also be an effective way to find individuals who are interested in a certain topic.

If online communication is not your thing, MS Friends, a program organized by the National MS Society connects individuals with MS through a telephone service. You can contact 1-866-673-7436 and speak to an individual with MS. MSAA also offers a Networking program, which can connect individuals through letters or e-mails.

With so many options to get connected, how do you stay in contact with others?

Share

Getting Off to a Good Start

There’s a philosophy about first impressions that states within a few seconds of meeting an individual we can evaluate who that person is and create an instant opinion about that person. As a social worker, I have never really understood that philosophy. Sure, by evaluating body language, tone of voice, or physical appearance we can get a sense of the person and what they may be experiencing at that moment. But it is not fair to cast judgement and say that the way a person presents in that moment is who that person truly is.

Isn’t everyone entitled to a bad day? It is impossible to be on point every moment of every day. The same can be said for individuals with multiple sclerosis. Individuals with the relapsing forms of the disease who experience periods of heightened symptom activities will experience good and bad days. Are you just supposed to stay out of the public’s eye during those bad days with fear of being judged in that moment?

As a society, we need to be more forgiving and open to learning about an individual before making a snap judgement. MS education can play a valuable role during this period. While an MS diagnosis does not define an individual, offering more information about how you are affected may help in providing some sensitivity and awareness to others about living with chronic illness.

As an individual, how do you come back from a bad day and present yourself again?

Share

Mothering Through MS

By: Meagan Freeman

How will my children remember me?

Isn’t that a question every parent asks? We want to set the best example for our kids, leaving a legacy behind when we are gone. Often, this is one of the main reasons people choose to become parents in the first place. One of the first fears in the minds of parents who are diagnosed with MS is: “How will this disease affect my ability to parent?” Followed soon by, “Will my young children remember me when I was healthy?” MS often strikes in the prime of adulthood, when most people are finally successful in a career, finally married, or starting new families. This is the cruelest aspect of this illness, the theft of young optimism. We want our children to recall these years of health, vitality, energy and strength. We want them to remember vacations, playing ball, swimming, and dancing with us. We want them to remember us as young, beautiful adults who never failed them; however, illness interferes with that image, and creates an image of inability and dependence.

Mothers with MS face an incredible challenge, coping with an incurable illness while tending to the needs of little ones, putting the needs of others before their own. In my own family, I witnessed the strength and perseverance of two mothers, facing incredible odds, refusing to give up no matter how difficult life got. MS was no match for these incredible women I am referring to, my grandmother Bette, and her daughter Susan, who happens to be my own mother. My grandmother was diagnosed with MS in the 1950s, and she had 7 children at the time. As a child of 5 or 6, I have vivid memories of visiting the home of my grandparents. We spent many holidays there, the home where my mother and her 6 siblings grew up. My grandfather Stan was the breadwinner, and my grandmother Bette struggled while trying to raise her children. She had been diagnosed with multiple sclerosis in the 1950s, when there were no treatments available. She was basically told to “get in bed and stay there.” Faith, love, and hope were the keys to their success, and my grandparents were a living example of heroism and true love despite devastating life circumstances.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them. When I question whether truly unconditional love exists, all I need to do is recall this life story and look at their pictures. Despite MS, my grandmother dedicated her life to her children, instilling love and values that remain to this day. You see, what matters at the end is our life story, our legacy; the story that will be told to future generations. Each of us is slowly writing a story that will be told someday, and it is incredibly important that we write one that we will feel proud of.

My mother was the oldest child in her family. Due to her mother’s progressive MS, at age 12, she took over a majority of the household chores and duties, becoming a surrogate mother for the 6 younger siblings in the home. My mother needed to grow up quickly, and assume the role of a parent at a very young age. At the time, there was simply no choice. Rather than playing, my mom would cook, clean, and help younger children bathe. She sacrificed her own needs for those of her family, and she never failed in her duty. The defining characteristic of a mother is the resolve to care for her children and protect them from harm, no matter what. My mother continued to care for others when I was born, and she was the most wonderful mother anyone could have asked for; I truly don’t know how I got so lucky! She provided me with a beautiful childhood, and gave me all any child could ever need, always putting my needs before her own.

My mother set a wonderful example for me, and I try to carry that on each day. I struggle with MS daily, but despite those struggles, I can still enjoy my children. I see their innocence, their desire to see the world as a beautiful place. My goal is to continue to allow them to see things as awe-inspiring, breathtaking and amazing for as many years as possible. I try to share openly and honestly with them, letting them see certain aspects of my disease, but shielding them from others. I am fortunate to have witnessed two incredible examples of motherhood in my own family, and I think of these incredible women every day. Each mother with MS is going above and beyond, coping with physical challenges while sacrificing daily for her children. Thank you to every one of the MS moms in the world; each of you is a true hero. Thank you, Grandma Bette, and I love you, Mom! Happy Mother’s Day to all…..

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

Share

May 2015 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2015 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 MS Art Showcase online gallery to view all of the new submissions.

May Artist of the Month:
Lisa Wright – Austin, TX

 Lisa Wright - Mum and Dad

About the Artist:
“MS can be a challenge. It saps your energy, dulls your wits and creativity. Sometimes it feels like an effort to pick up a brush or pencil. I was diagnosed in 2002 after a bout of optic neuritis that left me temporarily blind in one eye. It was enough to leave me wondering about what this meant for my future, and not just as an artist, but everything.

Fortunately, my MS had been discovered early. They put me on a therapy immediately and my flare-ups have been minimal. I am grateful to my doctors for their guidance, to my family and friends for their love and support, and to my husband – also my caregiver – for his patience. He keeps me focused if things become difficult.

And thanks to you, MSAA, for all the thorough information you provide. I’m part of the MS community, along with a lot of creative people just like me!”
Read more

Be inspired – please send an online card featuring artwork by MS artist Lisa Wright and spread awareness of MS and MSAA.

Share

Hi! It’s nice to meet you. What do you do?

Such a direct question, right out of the gate! And it’s one we encounter often when meeting new people – report your name and occupation for informational purposes, please. Because of the nature of this interaction (which feels very unnatural at times), meeting new people can be intimidating. It can be an awkward situation with pressure to ask or answer certain questions that may be sensitive to you or the other person. It can also be stressful to open yourself up to new people because the outcomes can be uncertain. How will the other person interpret what you said? Will they be accepting of you? And the detailed request to explain what you do rather than who you are can feel uncomfortable too, especially for those who may not currently be in the workforce to identify themselves as their work first.

Ok, so new conversations don’t exactly occur like this: “Hi, I’m John. I like traveling, going to the opera, and fishing.” But they don’t necessarily have to evolve into interactions that make you feel like you’re filling out paperwork at the DMV either. There can be a balance, where you can actually learn about the person’s character and their likes before judging them solely by what they do or don’t do for a living. It may not feel like it, but perhaps those who are no longer working are at an advantage at times in this new meeting scenario. This leaves the discussion open to actually discussing matters that are not just work related!

Other topics of conversation can be brought into the encounter and people can learn who the other person is and not just what they do. Maybe this conversation flow can include “tell me something about yourself,” thus creating a whole new direction of discussion between new people.

Even though meeting people can be scary sometimes, it can also open up so many exciting doors for increased interactions and forming relationships with others, which can be of great value!

How do you meet new people?

Share

Highlights from MSAA’s Improving Lives Benefit in Washington, DC

On April 22nd, MSAA held the second annual Improving Lives Benefit at The Pavilion at the Ronald Reagan Building in Washington, DC. It was a wonderful evening filled with good food and fun – all in support of a great cause! The funds raised from the event directly support MSAA’s free, vital programs and services.

Honorees - Doug - Sue

(Pictured from left: MSAA President & CEO Doug Franklin, Honoree Kristen Adams, MSAA Board Chair Sue Rehmus, and Honoree Dr. Randall Schapiro)

This year, two special people were honored as MSAA champions for their accomplishments, commitment, and support of the MS community.

Dr. Randall Schapiro, MS neurologist and member of MSAA’s Healthcare Advisory Council, was honored for his dedication and contributions to the MS community. Among his many notable accomplishments, Dr. Schapiro founded the first comprehensive MS center in 1977, participated in numerous research studies, and helped to develop two MS organizations. Through his years of service, he has come to recognize the importance and impact a “team approach” can have in helping the MS community.

“That’s the way we’re going to make progress. That’s the way we have success in dealing with a difficult disease. So I’m appreciative, very appreciative, of accepting this award on behalf of my team; all of the team; all of the people that have been involved with me and helped me.”

–Dr. Randall Schapiro

Also honored was Emmy award-winning network producer and writer, Kristen Adams. Diagnosed with MS in 2008, Kristen serves as an inspiration to all who hear her story. In early 2014, Kristen played a major role in helping to launch MSAA’s Why I Swim initiative by producing and starring in nationally broadcast videos to inspire others to share their stories.

“I can be a good example. And I know now why that is important and why I continue to do that. And I am deeply grateful to MSAA for allowing me the opportunity to do that. Thank you.”

–Kristen Adams

This year’s Improving Lives Benefit would not have been a success without the support and generosity of our donors. With the help of our supporters, MSAA was able to raise more than $115,000 – which will make a tremendous difference in helping to provide vital programs for so many people affected by MS.

Thank you!

Share