MS and the RSVP

Do you go with the last minute RSVP? Or end up canceling plans?

Most invitations sound great when they come, but for many with MS, it’s simply impossible to predict the way one might feel the day of the event. Symptoms can change, flare-ups can occur, and/or exhausting fatigue might set in. The desire to go may still strongly be there, but the physical strength and wellbeing are not. A response of “maybe I’ll be there” is often necessary for those living with MS, and sometimes, it’s the Continue reading

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I’ll Be There for You…

Relationships are pretty often thought of strictly in the context of romantic attachments. Especially this time of year as we emphasize love and romance, couples, and all that comes along with it. But there are other relationships we sometimes forget to emphasize. Friends, family, co-workers, support group members, or neighbors. All of these, too, are relationships. It’s difficult in a world where things move a mile a minute and there is so much vying for our attention to remember to think of these other relationships and place some emphasis on them as well. Not just when the stores turn to red and pink and the costs of flowers rise to somewhat ridiculous levels.

While romantic relationships are important and make up a good portion of our understanding of relationships, support and encouragement for many often comes from those they are not romantically linked to. Friends who are there for us when we need a shoulder to cry on or a hand up when we are weak. Support group members who share their own story and listen to ours as we all try to live our lives as best we can and make the most out of all we have. Neighbors or co-workers who help us pass the time during work or who we bond with over community concerns and celebrations. These relationships, just as important as romantic ones, help shape both who we are as well as those around us and are strong bonds during trying and uncertain times. This month in addition to celebrating and relishing any romantic relationship we may be in and acknowledging the importance of this in our lives, let us take some time to also thank and celebrate the other relationships in our lives with people we love… just not in that way. Remind your friends and family what they mean to you or show appreciation and gratitude to your co-workers or support group members. It may not be the stuff of Hallmark movies but I’m sure they’ll really appreciate it that you took the time.

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There’s No Place Like Home…?

So the holiday season is here and for some of us that means a lot of extra time spent with family. Now for many people this is a welcome and joyous gathering; spending time with loved ones and those you may not see all year round is longed for and appreciated. For others, being with family may be a bit more stressful, so one’s strength and will can find that it’s tested more so this time of year. Now don’t get me wrong, I’m not saying that all family occasions and activities are taxing, they can be very pleasant at times, but there are those moments where we find ourselves maybe wishing we were at Ebenezer Scrooge’s house for Christmas dinner (the Ebbie we see before his change of heart, lol).

I think most of us can relate to those relatives who can bring out the worry, stress and anxiety in us—and for whom we do our best to place a smile on our face and grin and bear their remarks and actions because they come from a place of concern. I know some say that family only wants the best for us, but do they have to work so HARD at it? Tough questions, unrealistic expectations and lingering comments can be very trying to endure, especially for those coping with their own changes or challenges and expectations. No one’s arguing the fact that we do ultimately want to treasure and appreciate the moments we have with family, because we all know that special moments can be fleeting and life can be very unpredictable when it wants to be. But why do some of these moments have to be so hard sometimes? Why can’t we get through a meal or activity without that moment of discomfort because someone asks an unwelcome personal question or comments on something they don’t know anything about?

Again, I’m not saying that all family get-togethers and events bring about these types of feelings; I’m merely trying to validate that these moments do occur for some and they are not without frustration or stress. The question is; how do you approach these more interesting of family encounters, especially around the holidays? What would Ebenezer do? (The changed Ebbie at the end of the tale, that is).

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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?

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Love Conquers All… (Including MS!)

By: Meagan Freeman

Valentine’s Day brings to mind images of unconditional love, commitment, and romance. We see the theme as we stroll through any store during the month of February, the candy hearts, the red roses, and the chocolate. Sometimes, we forget what this concept truly means, and get caught up in the “commercial” aspects of the holiday, instead. If anyone is looking for a true story of love, hope, inspiration, and unending devotion, I have one for you.

My grandparents met on a Southern California Beach in 1944. My grandmother wore a bright yellow bathing suit, as she sat in the sand under an umbrella. My grandfather always described her as “the most beautiful girl I have ever seen.” Both of my grandparents served in the military during World War II, and both were stationed in Santa Monica, CA. It was love at first sight, according to both of them. This bond grew in the following year, and they were married in a beautiful ceremony in 1945. This strong bond they had formed would be tested in the coming decades, and it would carry them through the most difficult times.

In the following decade or so, my grandparents had seven children, three girls and four boys. My mother was the oldest child. Sadly, my grandmother began to develop neurological symptoms such as weakness and emotional instability. Eventually, she experienced seizures on a regular basis. This led to a fairly rapid decline, leaving her wheelchair bound by age 40, and bedridden by age 45. Eventually, she was diagnosed with a rapidly progressive form of multiple sclerosis. The advice regarding MS in the 1950s-1960s was generally to “get in bed and stay there,” and “do not ever exercise.” As we know, this is some of the worst advice for MS patients.

When my grandfather was faced with the decision whether to move his beautiful wife to a nursing home or keep her in the family home, he insisted she remain with him. He lovingly cared for her for over a decade in the home, all while raising the seven children and working to support the family. He helped her to dress in her best clothes during family gatherings, brushed her hair, and made sure she was a part of the family in every way. My grandfather was a photographer, and he took hundreds of incredible family photos, always including my grandmother.

Eventually, my grandmother lost her battle with MS. My grandfather carried on for many more years, visiting the grandchildren (myself included,) gardening, attending church, and waiting for the day he would see his wife again. His faith was strong that he would see her again someday, and he spoke of her often. He passed away in 1994, and on their grave is the quote that sums up the undying dedication they showed for one another through the most difficult times life could throw at them: “Suffering disappears, love remains.”
Love is indeed forever.

meagan feb blogMy grandparents on their wedding day, 1945

 *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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Hard Family Conversations and MS

By: Matt Cavallo

During my initial hospital stay and subsequent diagnosis of MS, one of the biggest challenges that I faced was talking to my family. We had a history of multiple sclerosis in my family. My dad’s sister, Loretta, was diagnosed with MS in the 70’s and she passed away in 1981 due to complications of the disease. During that time, there was little in the way of treatment available to help her. Not only that, but the disease progressed very quickly. She passed when I was only four, but I still can remember her. She was in a wheelchair and she couldn’t talk, she could only mumble and moan.

While I was laying in my hospital bed contemplating my diagnosis, I was thinking that I shared the same fate as my Aunt Loretta. The whispers around my bed from my family members supported my fears. As a result of these fears, the conversations changed. Family members started treating me differently. They were walking on eggshells around me, careful not to divulge any of their true fears of my future. Even with treatment, as my functionality returned, everyone held their breath for MS to strike again.

Six months later I had another drastic exacerbation. Then, twelve months after that another one. It seemed like I was following Aunt Loretta down a perilous track. And my family treated me that way. It was to the point where I didn’t want to have conversations with them because I wanted them to remember the person I was and not the person I had become with MS.

However, there were a couple of things I had going for me that my aunt didn’t have. One was timing. In 2005 there was a lot more knowledge about the disease and many more treatment options available than when she had it in the 70s. The second thing was history. I knew my Aunt Loretta’s story and I didn’t want mine to end the same way. Family members told me that she didn’t like the advice she received from a doctor, so she never went back to that doctor. I used that information to motivate myself to learn as much as I could no matter if the news was good or bad, scary or hopeful. I just wanted to get the most objective, up-to-date information available to fight. Lastly, I had hope. In the seventies there was little known about the disease. Today, there is research and scientific breakthroughs, social support networks, and hope.

If I could go back in time with all I know today about living with multiple sclerosis, the fear and egg-shell conversations with my family would be dramatically different. I would use the resources around me, like My MS Journey, to educate myself and ease my family’s fears instead of staying silent.

Today my family conversations are no longer about the horrors of MS. My family and I now talk about my future and my kids and all of the awesome stuff that normal people talk to their family about. Today we are a normal family and I just happen to carry the torch of multiple sclerosis. I have had it for approaching ten years now and I am still working, playing, being a dad and living the life I always wanted to live. That makes me proud to talk about my MS journey and how I have lived a great life despite my diagnosis.

Resource:
https://mymsaa.org/journey/

*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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Family Ties

The relationships that we hold with family members are some of the most significant and influential ties that we will carry throughout our lifetime. These bonds, whether good or a little rocky at times, help to build the foundation of our relations with other people. Because these relationships hold so much meaning and importance, individuals put forth much effort into maintaining them to ensure they remain intact. What helps to make this possible?

A key element in all types of relationships is communication. Being able to disclose feelings, concerns, and needs to others is important and can build strong ties in the connections. Reading other people’s minds can be a challenge, so talking openly about things is a good step to knowing what the other person is feeling. This isn’t easy for everyone; it can be difficult to bring matters to other people’s attention and talk about different issues, especially if they are personal or sensitive in nature. Because of this it’s important to think about whom you feel comfortable disclosing things to if challenges arise.

Having that go-to person/support in place is essential to communicating effectively and being able to share your personal experiences. Sometimes you may seek this type of support outside of your family structure which may inadvertently upset family members. So then with family, you may need to have a discussion about communications barriers or discomforts to be able to disclose why communication is difficult. This can help to reduce confusion and misconceptions in these relationships, and still leave the communication lines open. As family remains one of the strongest ties in connecting to others, communication will remain an integral part of this system.

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Creating New Memories this Holiday Season

“What if Christmas, doesn’t come from a store. What if Christmas…perhaps…means a little bit more!”
― Dr. Seuss, How the Grinch Stole Christmas

Growing up, one of my favorite activities in school was around learning and exploring new cultures and how they celebrate holidays. Being so young and not yet having a chance to explore the world around me, I found it fascinating that people were different from what I assumed was the norm.

For example, in Germany, December 6th is St. Nicholas’ Day and “der Nikolaus” comes to the home of small children and brings gifts, such as sweets and chocolate, and puts them into the shoes of the children, who place them by their doors the night before. Then on the night of December 24th, Father Christmas brings presents to the children.

In Argentina, families celebrate starting Christmas Eve with a large family meal following with a fireworks display at midnight, toasting to Christmas. Many families stay up late into the night meeting with friends and family, then they will sleep all of Christmas Day.

To celebrate the New Year, people in Greece hang an onion on their door to symbolize rebirth and in the Philippines, women wear polka dot dresses and men carry coins in their pockets to symbolize prosperity and happiness for the new year.

The purpose of sharing these variations of holiday celebrations is to show that no matter how you choose to celebrate a holiday this year whether it is Christmas, Hanukkah, Kwanza, remember that it is OK to be different. Value time spent with family, not the gifts that are given, or the decorations that are hung. Create new memories this season and don’t be afraid to veer from the holiday norm. As the Dr. Seuss quote illustrates, the holiday spirit cannot be bought from a store, the holiday is what you make of it.

If you are looking for some inspiration from other countries on how to add some new culture to your holiday, check out the Why Christmas webpage to learn more about Christmas Around the World or 123 New Year to learn about New Year’s Traditions and Customs.

How do you plan to make new memories this holiday season?

References:
http://www.whychristmas.com/cultures/
http://www.123newyear.com/newyear-traditions/philippines.html
http://www.businessinsider.com/new-years-rituals-around-the-world-2013-12#in-greece-people-hang-an-onion-on-their-doors-3

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Holidays Past

The holidays are a time where people come together to celebrate the joy of the season, to honor past holiday traditions or to create new ones for generations to come. Holidays of the past can foster different types of memories – fond ones, funny ones, and those, “I still can’t believe that happened!” moments. For me, the holidays were always a hectic time, where you never quite knew what was going to happen. I do hold some fond moments about old traditions in our family, and though they may seem odd to others, every family is different and has their own ways of celebrating.

In my family, Christmas Eve was the night our extended family would get together to celebrate the holiday and exchange gifts through a Pollyanna. But the gift exchange and celebrating couldn’t happen until midnight, when it was really the start of Christmas day. As a child this was agony, as half of us would fall asleep before the countdown to midnight even began, and the rest of us were so tired that when it did come time to open presents and rejoice, we didn’t really appreciate the tradition at that late hour. However, this still remains a heartwarming memory for me, because for some reason or other throughout the years, this tradition is no longer. As more children were born into the family and members didn’t want to travel home so late, gifts are now exchanged at leisure, with no countdown or anticipation as years past. It’s still a nice tradition, but it’s different, and now we take time to reminisce about those past holiday memories and look back with joy.

Each holiday season brings varied traditions, moments, and feelings that are unique to each person and family celebrating the occasion. And even though things may change through the years, making holidays different from ones that came before, there are still memories to be made and joy to experience.

What are some of your holiday memories?

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Lasting Holiday Memories

Having just polished off the leftover bird from the table, cranberry sauce and stuffing galore, you may be experiencing a sigh of relief or even a moment of anticipation as further holiday and end-of-year festivities abound.

Whether you had a pleasant or taxing Thanksgiving, you probably are not thinking about what creates a lasting holiday memory, but inevitably as the season progresses you may just think back on past holiday seasons and some of the stand-out moments which are meaningful to you. Over time, sometimes even the mishaps and anxieties which were so troublesome to you at the time may even win out for most re-counted and favored memories.

For example, I’ll never forget the Thanksgiving my dog snatched a turkey leg right off my nephew’s plate (why he had a giant turkey leg, I have no idea). I chased the dog around the dining room and battled for it. When I finally broke his hold on the greasy turkey leg, riotous laughter erupted around the table.  At the moment he stole the food, my thought was, “Oh no, he ruined Thanksgiving,” but the reality was there was plenty of food to go around and everyone delighted in some comic relief. A few years later, and it has become a story we re-count when we talk about all being together and what we are thankful for (which does, in fact, include our dog).

Lasting Holiday Memories

So as the year winds down and you anticipate even more hoopla, remember that even the crazy, wild, and hectic moments can turn into those lasting, laughter-filled, or meaningful moments. Events may not turn out exactly as planned, but the love, support, and laughter of those that surround us and support us are what the holidays are all about.

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