Getting Graphic When You Have Multiple Sclerosis

Young couple looking distressed or angry

Sometimes when you try to communicate with others, your point may be misconstrued, or something may be lost in translation, or you feel that no matter what you are saying the other person just doesn’t “get it.”

In my role here at MSAA, I have heard from many people who are frustrated or disappointed that someone close to them, be it a family member, a friend, or even a close co-worker (someone who they know cares about them), just doesn’t “get” MS. They may not understand the daily or even hourly ups and downs of MS, or the invisible or hidden symptoms you are trying your utmost to manage, or maybe it’s just an expectation that everything should be the same as before your diagnosis, when for you it feels like the whole world has shifted.

No one wants to feel that our friends, family, and supporters are clueless, unhelpful, or uncaring…after all you KNOW they care about you, and that’s why you include them and want them to be a part of your life, and that’s why it feels so wrong when you can’t express your needs or they don’t seem to “get” what it is you are dealing with, or struggling with, or needing.

When words aren’t enough, get graphic…and not in the style of an R-rated movie, but instead embracing that sometimes a photograph, picture, or artwork can help support what you are saying. Even a visualization can sometimes be helpful, for example, “Sarah, I know that you are trying to help, but when you say that it makes me feel like you’re asking me to put a bag with a smiley face on my head…can you picture that? ” If you picture it, a person with a smiley face bag is being asked to hide their true emotions, or even if they express those emotions they cannot be seen by others. Sarah may picture that bag the next time she wants you to turn your frown upside down and be more empathetic to your needs.

So, the next time you feel like words are just not enough: snap a photo of how you are feeling, draw a picture of your thoughts, or give a visual depiction of your concerns. You may find that a visual display is sometimes the bridge that is needed to help your support person really “get it.”

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You’re My Person…

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So in our day to day we sometimes overlook things that are important to us. It’s not done on purpose or due to an act of spite; it’s realistic that things get pushed to the side when we have so many other things going on. In a world such as ours with life going a mile a minute, how can things not go unnoticed? But when you do have time to talk, to listen, and be with someone else, who brings out the best of who you are? Who’s your person? Who is that being you turn to when you need someone to confide in? What is it about this person that makes you feel so comforted in communicating with them?

Every individual is different; thank goodness for that! It’s a person’s quirks, attributes, and strengths that attract us to them in the first place. We like when someone is different from us so they can offer new perspectives on things, but we also like when we share the same interests and personality traits that make the relationship flow so well. We tend to look for connections that will hopefully bring out the best in us – someone to complement our traits and allow the best part of us to shine through. We confide in others when we need to vent, discuss things out loud, and find validation for what we’re going through. It’s comforting to know that someone else is there when we need to reach out.

Your go-to person may be a family member, friend, significant other, or someone else – the relationship title doesn’t make a difference. It’s the communication and bond you share that matters. Family members may drive you crazy at times, but sometimes they’re the ones you’re closest to, without even realizing it. If you are still looking for your ‘person,’ that one who you can confide in and turn to in times of need, take another look; they may already be a part of your life…..

Who’s your person?

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Celebrating My Birthday Despite MS

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By: Matt Cavallo 

This weekend we were celebrating my birthday. A birthday is generally a cause for celebration, but when you are living with multiple sclerosis, sometimes you don’t feel like celebrating. Especially if you live near Phoenix and high temperature on the day of your celebration was 111 degrees. I was feeling fatigued, overheated, and wanted to stay in bed all day. I was considering cancelling the dinner, but there was one party guest that had been waiting months for this night.

I had promised my son that we would go to Rustler’s Rooste, a famous Phoenix steakhouse, known for serving Rattlesnake. My oldest son is currently obsessed with snakes. A couple months back, he attended a birthday party that had an entertainer with exotic animals. At that party, he got to handle a snake and has wanted one ever since. I made the mistake of mentioning to him that a Phoenix steak house served Rattlesnake as an appetizer. He made me promise that I would take him for Rattlesnake. Even though I didn’t feel like going out, he needed me to live up to that promise.

As I laid in bed before I needed to get up and get ready to go to the steakhouse, I contemplated how MS had stopped me from going to other social events in the past. For a period of time, I had isolated myself from my friends and family because of how I felt. It got to the point where people stopped inviting me to events because they knew I wasn’t going to show. Now, here I was on the verge of letting MS fatigue and heat intolerance affect celebrating my own birthday and sacrifice the promise I made to my son.

As the clock ticked closer to our reservations, my fatigue and heat intolerance were not letting up. Neither was my son’s talk of finally getting to live his dream of eating Rattlesnake. I had a decision to make: was I going to let MS win and stay home, or was I going to fulfill my promise to my son?

Despite the MS fatigue and heat, I rose to the occasion. I took an ice cold shower, and we went over to the steakhouse. The boys had a great time, and so did I. I was happy that I had forced myself to go. Cooling myself down helped me handle the heat. More importantly, I didn’t let my MS keep me from making memories with my boys. The biggest surprise was that my boys liked eating the Rattlesnake. My oldest said it tasted liked fried chicken!

*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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Time to wind down…

After a long and seasonably warm 4th of July holiday weekend, it may be time to relax and recover a bit from the weekend’s festivities and weather. A long holiday weekend can tire anyone out, and for those with MS, the heat index does not add favorably to the situation. Spending time with loved ones and friends, though enjoyable, can be tiring as well, so make sure to focus on your needs and health after these get-togethers. Take some time for yourself-retreat to cooler environments, take a stroll in the evening to unwind, or settle down with a hobby or activity you favor. Taking a time out from busy activities can help you catch your breath and get back into a routine that works in your day to day.

What do you do to wind down?

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Give Yourself Time to Plan for Travel

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When planning a summer vacation (or any trip for that matter) a great deal of detail is required to figure out the best place to stay, the quickest and easiest way to travel, and what activities you want to do. The list goes on and on.

When you also need to plan for accessibility or special accommodations, it adds extra steps to the traveling process. Sometimes you may even want to throw in the towel if planning the vacation becomes so hectic or frustrating that it causes increased stress or anxiety.

Depending upon your needs, creating a plan of action or checklist of sorts may be a good first step in alleviating frustrations. Here are a few ideas to get you started on your list:

1) What places might be fun to visit/where do I want to go?

2) How much do I have budgeted to spend?

3) Will I need to fly, drive, or take a train/ bus (and what are the benefits and challenges for me getting on a plane, bus, etc.)?

4) Do I want to go as part of a guided tour with a set itinerary and is there an accessible travel option?

5) Where will I stay, and do I need to call ahead to confirm accessible accommodations?

Once you begin to narrow down your choices of budget, location, and means of travel, you can then begin to focus on planning for specific accommodations (picking the seat closest to the bathroom or coordinating with your flight attendant to offer wheelchair assistance) and the fun activities you want to participate in on your trip.

Wherever you go, even if it is a day trip, try to have some fun this summer!

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Who’s in your circle?

After attending a retreat this week for helping professionals, there were a lot of things put into perspective for me. One being that we all need to make time for is self-care in our routines, to maintain a balance between things we must do and things we should be doing for ourselves on a daily basis. But another poignant moment at the retreat posed the question: “Who do you want to bring into your circle?” The circle symbolizes your safe space, the area you’re surrounded by that accompanies you through your day to day. It represents your thoughts and hopes and also your vulnerabilities. So the question that was posed of whom you’d want to enter this space with you or who you’ve already accepted into this space was profound. It’s not often that we are able to take the time to consciously think of those we’re surrounded by and why it is we’ve chosen them to be a part of our lives. Being able to reflect on this was moving.

We go through life at times with certain blinders on. We rush through daily activities and sometimes forget that we’re part of a bigger world, full of other people experiencing similar types of thoughts and feelings, though each unique and different in their own way. Our circles intersect with others, and though we may not realize it, some of us have already chosen whom or what we’d like as part of our circle. They are the family and friends we surround ourselves with, those we let in when we need to connect and feel validated. They are the places we like to visit, the things we enjoy doing most. It can really be anything or anyone; it’s up to you who enters the circle, because after all, it is yours.

Who’s in your circle?

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Did Cupid Miss? Finding True Love Wherever it Lies

By: Jeri Burtchell

Ah, February! The prelude to spring and the time of year when happy couples profess their love for one another on Valentine’s Day. What could be wrong with that?

Well, sometimes real life falls short of “Sleepless in Seattle”. A study published in 2010 says that folks with MS have a greater likelihood of ending up divorced than other couples. Odds are, someone with MS who is reading this spent Valentine’s Day alone. No amount of chocolate can make that pill any less bitter to swallow.

When I learned the MSAA blog theme for February would be “love”, I decided to explore the less traveled paths to the heart. Instead of romantic love, this is for all of you who are facing MS head-on and doing it solo. For everyone who thinks the groundhog predicted six more weeks of loneliness.

Everywhere you look in early February, friends are doting on their better halves in tweets and status updates. Pictures of happy couples abound. Even those with MS seem happily connected to the “best husband ever” or “the most amazing wife.” You don’t see anyone saying “I’m single, yay me! I’m doing just fine.”

But there is love beyond romance and I want to draw your eye to it. If you focus on the love that you do have, then perhaps it will ease the sting of having to say “table for one, please.”

Most of us have the love of family that surrounds us. Think about that sister or brother, mother or father, aunt or uncle who is there for you. Helping you cope, caring how you feel, sharing good times and bad. That is love.

Even if you are divorced, there’s a good chance you have kids. They love you, right? Don’t roll your eyes at me that way. Romantic love may come and go, but the bond between parent and child will last a lifetime. That is also love.

No kids, no family, no significant other? Don’t stop looking for the love that seems elusive. Just look a little closer. You may be overlooking a love right under your nose. Literally. Look down. See some little eyes in a furry face looking back up? That, my friend, is love…or it could be hunger. (Nah, it’s probably love).

The unconditional love of a pet is real and powerful. Besides love, the Centers for Disease Control says that having a pet can lower our blood pressure and triglyceride levels, plus chase away our loneliness. They also give us a reason to exercise and opportunities to socialize while we’re at it. Just ask Sheryl about her Teeny Tiny Mighty MS Mascot.

What’s that you say? You have no family, no close friends? Your kids are grown and gone? You’re allergic to pets? All hope is not lost. The camaraderie of an online community may fill the emptiness you feel. Reach out and connect. Meeting others with MS can be rewarding, reassuring and often leads to lifelong friendships. I can honestly say some of the most meaningful friendships I have now began online.

Last but not least, there’s one final love you’ve had by your side all along, although you may have never noticed. You overlooked it while you were pursuing Prince Charming or Mrs. Right. It’s the person who will be by your side through thick and thin no matter what. It’s you.

When you learn to be your own best friend you’ll never be alone. Explore hobbies that give you satisfaction. Read books, go jogging, take a bubble bath, buy yourself a little something. When you see that gorgeous sunset, your first thought won’t be “Oh, if only I had someone to share it with.” Don’t gauge the pleasure of the moment by someone else’s reaction. It’s okay to love the sunset all by yourself.

So if February isn’t your favorite month and all this lovey-dovey stuff your friends are sharing gets you down, just try to focus on all the other love that surrounds you. And cheer up! March is just around the corner and we can soon celebrate MS Awareness Month together.

My parting shot to the romance of February as it heads out the door is, “Yay me! I’m doing just fine.”

References:

http://www.ncbi.nlm.nih.gov/pubmed/20483882

http://www.cdc.gov/healthypets/health_benefits.htm

http://contributors.healthline.com/family/my-teeny-tiny-mighty-ms-mascot

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Family

“Let us make one point, that we meet each other with a smile, when it is difficult to smile. Smile at each other, make time for each other in your family.”

-         Mother Teresa

 “There is no doubt that it is around the family and the home that all the greatest virtues, the most dominating virtues of human, are created, strengthened and maintained.”

-         Winston Churchill

Sometimes they can drive us crazy. We can argue, bicker and disagree on just about anything. I remember one Thanksgiving where my uncle, who thinks of himself as a turkey specialist, complained of how the turkey looked undercooked. He argued with my mother (the cook) about it all day, and yet continued to eat piece after piece of it even before the rest of the meal was finished. Yes, our relatives can really have their moments. We find that they can be our greatest allies, and yet some days, present us with our greatest challenges. They are family, and as the saying goes, “can’t live with them, can’t live without them.”

But there can be moments of such love and warmth within a family that have the ability to trump unforeseen obstacles, lighten unbearable situations, and bring insight we may have overlooked. At the end of the day we are who we are, and reflecting on the love and support of our “family,” biological or not, can oftentimes help us to face an unpredictable day. Share some of your memorable family experiences and the moments that make you feel loved by those closest to you…

 

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