MS Means Managing Your Energy

SherylBy: Sheryl Skutelsky

It’s Football Season! So, what does that have to do with MS? Well, in my case an unexpected wonderful opportunity to travel to meet my son to see my very first live NFL game. This opportunity truly once again brought to light the ways in which I have to live my life a bit differently from everyone else.

My dad wanted a boy, but instead he got me, an only child. So, I was placed in front of the television from as early as I can remember to watch the Jets play. I was taught every rule and regulation.

I’ve lived my entire life in New York, but for some reason my son had been a Packers fan from as early as I can remember. He dreamed of getting tickets to Lambeau Stadium for over 20 years. He finally had tickets for the Packer’s first home game against the Jets, but he broke up with the girl that was supposed to accompany him.

I get a call from my 31 year old son, now living in Houston, asking me if I would like to meet him in Green Bay for my birthday to finally get to see my Jets play live. Instantly I was ecstatic and panicked at the same time!

MS means managing your energy to avoid overwhelming fatigue. I didn’t have enough warning to rest all week for this trip. I also remember my son telling me that as a teenager he often felt that I wasn’t there for him; I was always too tired. I hadn’t been diagnosed yet, and my son rationally understands now why I was always tired, but I didn’t want to let him down this special weekend.

Well, the Packers beat the Jets, and I came home a Packers fan, but more importantly, my son and I had such a special weekend together. He had tattooed the MS logo on his ankle for me several years ago which meant a lot, but this weekend he also showed me that he truly understood how I had to live a little differently with MS.

My son did all the driving, took care of me, kept me out of the sun as much as possible, and made sure I got time to rest. We had such a great time together in Wisconsin, and my son told me how proud he is to tell people how his mom doesn’t let MS stop her from enjoying life. After all, what more can a mother ask for?

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

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National Day of Gratitude

“Feeling gratitude and not expressing it is like wrapping a present and not giving it.”
― William Arthur Ward

Thank someone on National Day of GratitudeRecently on Facebook, a trend has emerged where individuals are challenged to list three things that they are thankful for and re-post three new things for five days in a row. At the end of the five days, they are to nominate other friends to complete the five-day challenge.

Although sharing feelings of appreciation or value can occur on any day, sometimes it takes a nomination from a friend, or a national “holiday” to remind us to share those thoughts with others. The expression of personal emotions and feelings are often the most difficult to convey. Assumptions are made that the other party understands our feelings without ever discussing them. But as the quote at the top illustrates, having gratitude means nothing without sharing it with others.

So while it is important to personally remind ourselves of the things we feel grateful for, it is also important to share it. Writing a letter, posting to Facebook, or making a phone call are some of the ways to reach out to someone to say that you are grateful for them.

This Sunday, September 21st is the National Day of Gratitude. In what ways will you show your gratitude? Leave a message in the comments section to share your appreciation and gratefulness.

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Summer Reflection

By: Matt Cavallo

For me, having MS sometimblog pices means more sleep. This is especially the case for me with two young boys, who don’t tend to sleep in and have endless amounts of energy. I find that when the seasons turn to fall and the long sunny days turn to long dark nights, I find myself chronically tired and needing to hibernate. When I feel like I need more sleep, I draw on lessons learned from the summer.

This June, my wife and I decided to drive to take the kids to Legoland in San Diego. San Diego is about a five hour drive from my house, so we loaded up the minivan and hit the road for a three day vacation. Prior to that vacation, I put it in my mind that it was going to be hot and that I was going to be waiting in long lines for the rides, but that I needed to give my kids a vacation to remember.

The first day took a lot out of me. The drive was exhausting. Even though the kids behaved and there was only a little traffic, driving that long can be taxing. However, once we got to the hotel, the kids wanted to play. Even though I was exhausted, we met up with friends and went to the beach. I spent the entire time at the beach playing in the water with the kids. After about twelve hours of going non-stop, we went to the hotel and I crashed.

The next morning came too early, but the kids were up and ready to go. I felt like if I could just get a little more sleep, I would have energy for Lego Land. More sleep was not to be had but we spent an awesome twelve hours running around the amusement park, going on the rides and playing the games. The sun was brutal and beat me down as I waited for ride after ride. By the time we got to bed, I was so exhausted that I didn’t think I could possibly pull it together another day.

The next day came and I needed just a little more sleep, but that was not going to happen. It was day two at Lego Land and the kids were ready. It was a repeat of the first day and the kids were having the time of their lives. We spent another twelve hours roaming the park being roasted in the early summer sun. By the time we got back to the hotel, I thought I was going to pass out from exhaustion, but the kids wanted to swim at the pool. So even though I had expended all my energy at the park, I needed to dig down and find the inspiration for one more hour of activities.

While I was sitting at the pool watching the boys swim, I thought that this is what life was all about. It turned out that I didn’t need more sleep. Sure I was tired and the sun and MS fatigue were wearing on me, but I needed to be there. At this moment, having MS meant time with my sons. So many times, I had let my MS fatigue get the best of me, but I fought through it to create memories that will last a lifetime.

As I look forward to the fall season and the long nights, I think back to that summer vacation. I look back at how I was fatigued and didn’t think I would make it, but created precious memories. For me it is all about getting going, because for me getting started is the hardest part. This fall, I am not going to require more sleep. I am going to spend more time with my sons, because that is what motivates me to keep going. What lessons from summer are you going to use to keep going this fall?

*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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National Preparedness Month

September marks the observance of National Preparedness Month, a time when individuals are encouraged to make safety plans and preparations in case of emergencies, such as natural disasters, for the protection of themselves and family members.

Family standing outside house illustration

With the atypical weather conditions experienced throughout different parts of the country this year especially, like the harsh winter months and peculiar storms, it is important to have emergency plans in place to prepare for such conditions. Discussing strategies with your family members or neighbors can help to increase cohesiveness and coordination when planning for emergency situations. Individuals with disabilities should develop strategies that will accommodate personal needs in case of an emergency as well, including how to move within the household if the power were to go out and safe exit strategies if you need to evacuate the home.

Websites like the Centers for Disease Control and Prevention and ready.gov provide information and materials for individuals to make plans and build safety kits for emergency preparedness.  Here are some additional tips to consider when creating emergency plans:

  • Develop a plan that is accommodating for everyone’s needs in the household. If someone has a disability, try to consider and incorporate those needs into emergency plans and evacuation strategies.
  • Ensure all household members are aware of the plans and what their role is in implementing them.
  • Stay informed about emergency preparedness by checking media and news sources often.

Increasing awareness of how to protect yourself and the ones you care for in an emergency can aid in making thoughtful and careful decisions in unexpected situations. Take this time to learn more about National Preparedness Month and educate others as well!

 

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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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