Life with MS: My 5 Ways to Stay Happy, Lollipops and All

By: Jeri Burtchell

Let’s face it, even days that start out all “sunshine and lollipops” sometimes wind up with you getting sunburned and the lollipop stuck in your hair. You can’t prepare for the negative things that happen in life and those with MS know what I mean when I say we have our fair share of them.

Whether it’s awakening to an unruly new symptom, or spilling all your medicine on the floor when the top finally gives, you know what I’m talking about. Some days it seems like Murphy’s is the law of the kingdom.

jeri blogBut what can you do? Well if you sense an impending bad mood brought on by circumstances beyond your control, I say put yourself in time out…on the beach…in a hammock. And don’t come back until your attitude is better. If that were possible we’d all be heading for the white sands and drinks with umbrellas.

Okay so that advice was just wishful thinking and not exactly helpful, so I’ll make it up to you before I ruin your day and risk your wrath. Here are five sure-fire ways to happy-up your day.*

  1. Laugh at it. When circumstances threaten to punch a hole in your life raft, hang on. Take a step back (provided it was a symbolic life raft we’re talking about) and look at the big picture. Surely there has to be something funny about this that you’re really going to laugh at later. Granted sometimes it’s years later, but you’ll laugh. Try to recognize it now.
  2. Take a nap. Seriously. Sometimes it seems like everything is going wrong, and maybe it is. But it could just be that fatigue has made life temporarily insurmountable. Just rest a while and sleep on it. Most of the time, for me anyhow, I will awaken feeling like I’ve got a fresh start (and even thinking it’s morning again when it’s actually 3 in the afternoon).
  3. Hug a pet. Unless it was your awkward doberman who knocked the pill bottle out of your hands to begin with, our pets have a way of making it all better. A furry snuggle can drain the negativity and stress from your body and has even been proven to lower blood pressure.
  4. Get back to nature. No pets to hug? Next time you trip over a laundry pile or discover the leftovers were out all night, try finding a quiet spot outside to commune with nature and reflect on something that redirects your mind and brings you happiness. A little sunshine (with proper sunscreen) does wonders for elevating your mood. And bird songs don’t hurt either.
  5. Phone a friend. Make sure you have that one go-to friend on speed dial. Someone whose voice brings you joy even if they’re reciting the alphabet. You know the person. But DON’T talk about your problems–that’s not the point! Distract yourself by asking them how things are going. Then really listen. By focusing outward you stop dwelling on your own negatives and before long you will be happy again.

You probably think much of this is silly nonsense, but just trust me. Give it a try. Life’s too short to stay down in the dumps and you really do have the power to create your own positivity. We might not be able to choose what life throws at us, but we don’t have to keep going around with lollipops stuck in our hair either.

*Your mileage may vary. Batteries not included. Some assembly required. :)

*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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CANNONBALLLLL!!!

Cajun Cannonballs - FB 2Swim for MS participant Joshua Piro and the Cajun Cannonballs have done a fundraiser every Fourth of July to raise awareness of MS and funds for MSAA’s programs and services. This year, MSAA invites you to join the fun and get cannonballing this holiday weekend in support of the MS community. So grab your friends and family and Cannonball for MS! Submit your pictures by using #SwimForMS on social media and you could win some cool Swim for MS gear. Please visit SwimForMS.org/Support to register today.

Even if you’re not a fan of the water, there is still a way you can get involved and help improve lives today with MSAA. We’re looking for enthusiastic, passionate people like you to join our Street Squad!  Street Squad members work to spread the word about the Swim for MS fundraiser and raise awareness for MS.

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The MS Hug – Our community shares their experiences

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MS is associated with a whole host of common symptoms, like numbness and tingling, vision problems, weakness, cognitive deficits, among many others. But then there are symptoms that are less “text book,” and therefore not as well defined. One such symptom is the MS Hug. Cathy Chester, one of the contributors and patient advocates who writes regularly for MultipleSclerosis.net, wrote a wonderful article describing the MS hug, including her own personal experience with this frustrating symptom. It turns out that many of our community members also deal with the MS Hug on a regular basis, and many of them shared their thoughts with us in response to Cathy’s article. Here’s what our community had to say:

I didn’t know what an MS Hug was the first time I had one

  • I’ve had it happen a few times. The first time I went to the emergency room because I thought I was having a heart attack.
  • I had one LONG before I was diagnosed, after the birth of my child. I only recently read about it and realized what it actually was!
  • I have had two – one before I was diagnosed. I took an ambulance ride I thought I was having a heart attack. I then had one about a month ago. It hurt so badly it felt like my lungs were being squeezed.
  • I had my first MS attack when I was 12 weeks pregnant I thought I was having a heart attack couldn’t even lift my left arm up.
  • I’ve experienced the MS hug 3 times in 3 years. It’s a scary feeling. I felt like my entire body was in a vice. I don’t ever want to experience one again, not sure what brought it on. I thought I was having a heart attack, but thankfully that wasn’t the case.
  • I can’t believe this. I just recently, as in yesterday, started having this “hug” pain and wasn’t sure if I pulled a muscle or if it was another wonderful MS “thing” that I was experiencing…thank goodness I came across this.

I find ways to cope with an MS Hug

  • I do adaptive yoga for MS (Yoga Moves MS). They have taught us a banana stretch lying flat on our backs. I do this every day. I use to have the hugs several times a day, but now maybe once a month if at all.
  • I can feel it coming on, so I just have to relax and ride it out! It can take 48 hours or more.

I really struggle with MS Hugs

  • These are the worst ever hugs; I wish that they would never happen to us.
  • I get a quarter hug – just the front on one side – usually the left. That’s enough for me. I don’t like it at all!
  • It’s more like the MS python!
  • It’s the worse hug in the world. I don’t want another at all.
  • I get them sometimes, I think it’s like a big snake wrapping itself around me and squeezing tight! It isn’t very pleasant at all!
  • When I get over-tired, I get squeezed.
  • They are horrible – it’s painful and hard to breathe. Those are the kind of hugs I can do without!!!
  • I had one recently during a relapse…no fun!
  • I take Flexeril almost daily and it still hurts. I also was glad to come across this very thing a couple weeks ago too!
  • It isn’t fun at all, since you never know when it’s going to hit.
  • Hugs are supposed to be nice. This is more like a vice.
  • I call it the death grip because it felt like a boa constrictor was squeezing me for almost 3 days.

People who don’t have MS don’t understand what it’s like

  • I stopped telling anybody about the hugs and any other issues or pain. Nobody understands unless they have experienced it. My husband says, “just work through it!!” For everything. Really?
  • My husband doesn’t get it. When I am going through a 24 hour fatigue he says I get tired to I just don’t sleep like you do I just deal with it. Ugh! It’s just not worth an argument

Even my doctors don’t know what an MS hug is

  • The first MS hug I’ve ever had I thought it was a heart attack. The hospital checked me out and I was fine. My Neurologist said that it was a MS hug, like I would know this. The doctor at the hospital did not know this. Go figure.
  • My doctors don’t even know what it is, like usual with my symptoms they say its not related.
  • Had one of these 5 years ago and I was rushed to hospital with a suspected heart attack, as the medical staff had never heard of an MS Hug!

How about you? Have you ever had an MS Hug? What have you done to find relief? Share with us in the comments!

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Never an Easy Season with MS

By: Matt Cavallo

I was really excited. My allergies were horrible and I was feeling absolutely miserable. Why does this excite me you ask? When I feel horrible, I get inspired to write and was going to write a piece on allergies and MS as a follow-up to last year’s, Is There a Relationship between MS, Allergies and Histamine blog.

Then, this happened to my local weather in Arizona:

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Out here in Arizona, we say that three straight days over 100 degrees kills all the pollen. I don’t know if this is true or not, but my allergies certainly haven’t been bothering me since it got into the 100’s at about Friday of last week.

But guess what? The heat has been killing me!

Luckily, I got a Kool-Max cooling vest, similar to those in the MSAA’s Cooling Program. Now, even in the dog-days of summer, I can still participate in activities or chores and not feel trapped inside by the summer heat.

This got me to thinking, is there ever a perfect season to have MS? We all know that the summer heat, no matter where you live, is not good for MS. The symptoms of heat exposure can cause a pseudoexacerbation, or brief episode of neurological symptoms not classified as a relapse. These pseudoexacerbations can come and go all summer long as the heat and humidity persist.

However, during the cold dark of winter, us MSers yearn for a hot summer day. The low light of winter is not generally considered good for people with a Vitamin D deficiency, as most of us living with MS may experience. Winter also presents trip hazards with ice and snowy conditions, so those of us more prone to falls have a harder time getting outdoors and staying active during the winter.

Fall presents many of the same trip hazards. As soon as the leaves turn colors, they drop to the ground and become slippery to walk on. Fall also has dramatic temperature fluctuations where it can be summer hot one day and then brutally cold the next. This is where cold and flu season start to come into play along with the pseudoexacerbation possibility from those really gorgeous summer-like fall days.

That leaves spring as the only possibility for an easy season living with MS, am I right? Wrong. Spring is the reason I started writing this blog. It was nice this year, but the pollen kept me from enjoying it. I could not differentiate from an MS day or a sick-with-allergy day. The inability to breathe really caused excess fatigue rendering me unable to discern the difference between allergies and MS symptoms.

The truth is there is no easy season when you live with multiple sclerosis. However, each day is what you make of it. Don’t let the changing seasons stop you from living your life, rather adapt with the seasons and plan accordingly. Wear sunscreen, stay cool and don’t let MS stop you from having the best summer ever!

*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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How Cool Are You?

Summer is fast approaching, so now is a perfect time to remind everyone about MSAA’s Cooling Program.

As the heat starts to build, so do requests for this free MSAA service, so please place your order now before the summer rush. Please know that there is a five-year wait period to reorder any cooling products if you have already received items through the MSAA Cooling Program.

You can download the MSAA Cooling Program application or call MSAA at (800) 532-7667, ext. 130 to request an application by mail. Have a cool and fun summer!


Not eligible to apply for MSAA’s Cooling Program? The following Stay Cool Tips can be used to help fight the heat:

  • Portable or personal fans are an inexpensive and quick way to cool the body. The fan helps to circulate the hot air and move it away from the body.
    • Try putting a cool rag in front of the fan to circulate the cold condensation from the rag.
  • Be mindful of clothing choices. Wear lightweight and loose clothing that allow for air circulation.
    • Embrace light colors. Dark colors absorb light and heat, light colors reflect light.
  • Search for indoor activities in local shopping malls or stores where air conditioning is always free.
    • Window shopping at the mall or a mid-day matinee at the movie theatre is a great way to take advantage of the often cool air provided at these locations.
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Summer Planning and Travel Resources: An MSAA Blog Re-cap

As planning begins for summer vacations or trips, many are left searching or wondering what resources may be available to help with planning. MSAA guest bloggers Matt Cavallo and Jeri Burtchell have written over the years to provide some helpful tips for the travelling MS community.

In Air Travel Tips for the MS Community; Matt, a seasoned traveler, provides his Five Steps to Stress-Free Air Travel for People Living with MS. Matt writes, “Travel is stressful for everyone. Airports are big, busy and fast-paced. Security lines can be long and the thought of standing, unpacking, and repacking at TSA is enough to unravel even the most seasoned traveler”.

Often times the smaller details are those which are overlooked when planning a trip. Those small details such as the size of your carry-on, or the snacks packed in your bag can often make or break a trip. In Jeri’s Summer Travel Tips for Flying with MS Part 1 and Part 2, she identifies some of those smaller details that should be thought of ahead of time in order for smooth sailing….or flying in that matter.

We often learn through the experiences of others. Please share your flying or travel tips in the comments below.

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Summertime Memories

The summer season usually conjures up warm memories for me (sorry, no pun intended!) of times when things were simpler being young and summer was the best time of year. Growing up, my family used to gather at my aunt and uncle’s house for get-togethers and special occasions, especially during the summer months because their house was attached to a private elementary school where there was a lot of open area. They acted as caretakers to the school grounds so we had access to two different playgrounds equipped with slides, swing sets and jungle gym activities and a large tot-lot for playing basketball and volleyball. We often had family barbecues there and were so excited when the 4th of July holiday was celebrated because we could watch the fireworks right from their porch. These are some of my best memories I hold from my childhood – playing outside with relatives and being with family and thinking the summer should never end.

As we grow older our memories stay with us – as special pieces of time you’ve stored for yourself to take out and reminisce over whenever you’re feeling sentimental, or just want to recall something good. There are certain triggers that can activate these memories – songs, movies, places, things. For me, my summer memories are triggered by the smell of flowers and grass, barbecue grilling – and the charcoal kind, not the fancier gas grill devices seen all over the place nowadays. Rice Krispy treats – my grandmother used to make the best treats for summer occasions. And mosquito bites – I know this one is a bit strange, but those little buggers would eat us alive playing outside during the summer!

The point is, no matter what the memory is or its trigger, these precious fragments of time that represent moments throughout our lives are something to treasure and hold onto with care. They allow us to go back to times we remember fondly and that gives us hope that the memories could possibly be recreated again someday.

What’s your favorite summertime memory?

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Cool Summer Activities

As most schools around the country end their school year, many parents are finding themselves searching for activities that will preoccupy their children, but that are also accessible for the whole family. While many folks may opt for the parks or playgrounds in the warmer weather, individuals with MS may have to get creative to try and find activities that can be taken indoors during those warmer days to help avoid some of those heat-related symptoms.

But how can you entertain your children, before they tear through every cabinet in the household looking for something to do? Parents magazine provides some online fun activities that can be modified for any age group. Thinking about, or having a list of activities on hand may be helpful for days where MS symptoms are present, or fatigue has taken a toll.

Local programs are also available to children during the summer months. Many of these activities can be completed indoors to help beat the heat. Local libraries may have reading programs or special events; often they post these on their social events calendar or on a bulletin board in the lobby. Stores like Lowe’s, Home Depot or Joann Fabrics have free workshops available for families or children; you can call around to local stores to see if a calendar or events listing are made available.

Get creative this summer and see what fun activities you can find that can be completed indoors. Do you have any cool plans this summer?

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Summer Heat: The Enemy of the MS Patient?

By: Meagan Freeman

Before my diagnosis, the blistering sun of the summer season was my best friend. I was a swimmer, wake-boarder, and sun worshipper. I enjoyed my teen years, soaking up the rays in the California sun, trying to get a nice tan and reading magazines with friends. The hotter the better was my attitude! Boy, have things changed since my diagnosis in 2009.

Now, I have had to accept that the heat is no longer my best friend, but rather, my worst enemy. The heat of summer can be an incredibly challenging thing for those with MS, and it can lead to staying home alone while the rest of the family enjoys the beach, pool, and outdoor summer activities. For several years, I felt depressed about my situation. I had several relapses each summer, and my family members were enjoying my formerly favorite activities while I stayed home on the couch in my air-conditioned home, a virtual prisoner.

After several years of this seasonal imprisonment, I began to search for ways to beat the heat, and still enjoy family time outdoors. There are many options for combatting the summer heat, and I want to share some ideas for other individuals struggling with this issue. Fortunately for us, cooling technology has dramatically improved over the years. I always avoided cooling vests, merely because of vanity. I did not want to be seen with a bulky, unattractive cooling vest; but fortunately we have some wonderful, stealth options now.

The key is to keep the core temperature at a normal level, and through cooling technology, individuals can enjoy the summer days without experiencing flares and relapses caused by the heat. Heat leads to increased inflammation, which we need to avoid at all costs. Fortunately, simple cooling products can achieve the goal of maintaining a normal core body temperature, despite warm days.

MSAA has a wonderful program, offering free vests and cooling products to individuals who qualify for the program. The link for the MSAA cooling vest program is: http://mymsaa.org/msaa-help/cooling/. There is a short application to fill out, and this program can offer a vest to qualified patients at no cost. For those who may not be financially eligible, there are several other companies offering these types of cooling products. A good cooling vest can mean the difference between missing out on family activities, to being an active participant.

In addition to these products, I have found several MS vacation organizations, including the “MS Cruisers.” This organization offers cruises to many ports of call around the world, specifically tailored to meet the needs of MS patients. “This cruise is open to all MS patients, family members and friends who share an interest in the MS community, believe that health and fitness are powerful tools for overall well-being and independence, want to travel and interact with others who are facing the same challenges; and are aiming for the same goal of enjoying life to its fullest as they go through the process of adjusting their lifestyle to best suit their constantly changing needs.” (MS Cruisers.com, 2015.) Consider checking out this site for many options for amazing summer cruises. The site is located at: http://mscruisers.com.

I believe that the key to finding happiness and acceptance during a life with MS is to continue to enjoy all of the activities we enjoyed before our diagnosis. Through the use of simple cooling technology, and finding the right vacation options, we can continue to participate in life, enjoy the sun, and feel as “normal” as possible. If you find yourself imprisoned at home in the AC all summer, consider reaching out and trying one of these amazing programs. This can be your ticket to a wonderful, active summer season. Go enjoy it!

*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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Things to Consider for Summer Traveling

It’s here again – the summer season is upon us! Though for some people it actually may feel like it’s been here for quite a while depending on where you live. But the recent Memorial Day holiday really kicked off the start of the season for most around the country. With the arrival of summer some people start making travel plans and agendas for how to spend these months. Trying to schedule a trip can be stressful, and for those traveling with a disability or chronic illness, the planning process can be extra demanding. Ensuring certain accommodations are in place, scheduling stops and making arrangements for accessible travel are some of the necessary steps to take when planning a trip. Here are some things to consider in the planning phase:

Where are you going?

  • If they are needed – does your destination have disability accommodations? Like accessible bathrooms and sleeping areas, accessible activities/restaurants/shopping/travel routes within the town? It may help to call hotels and destinations beforehand to ensure their facilities meet your needs. This can help to decrease the stress of arriving at your destination and not having what you need to enjoy your trip.

What will you need for your trip?

  • Packing necessities like toiletries is just one part of the process. Having the appropriate amount of medications/treatments, equipment, and other products is important to ensure you won’t be left without something significant for your health condition while you’re away.

Who can you contact for help?

  • While planning a trip you will find there are resources available that can help you with the process. For example, you can work with a travel agent who specializes in accessible and disability travel that has knowledge on how to find locations and services that are accommodating for your requests. You can also get in touch with disability organizations and resources in the area where you’ll be traveling for additional assistance regarding local services and what’s available. Websites like Disabled Travelers and Access-Able Travel Source can provide information for accessible travel needs as well.

Do you have plans for the summer? What does your planning process look like?

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