Summer…Here I Come

By Penelope Conway

Summer is almost here. It’s a time for pool parties, vacations, picnics, gardening and concerts in the park. With multiple sclerosis it’s also a time of fatigue, weakness, and heat sensitivity that tends to make all my symptoms a gazillion times worse.

The warmer it gets, the more numb my body becomes. I can actually feel the numbness as it creeps up my arms and legs, and as it works its way down my face, neck and chest. My vision becomes more blurred and I lose color clarity in my left eye which can be quite weird. My legs won’t cooperate with one another, I drop things more frequently and naps are a necessity.

Summer for me is a great struggle as I select between the things I know I can do, those that I can’t do and the ones I decide to soldier through limping and dragging my body along. I know one thing for sure: the inventor of the air conditioner should have been given the greatest achievement award that existed at the time because without it, I wouldn’t survive.

Not only do I hibernate in the winter, I do so in the summer too. MS and heat just don’t mix together very well. My body can attest to that.

If I have to be out in the heat of the day away from the coolness of my indoor environment, I try to plan around the hottest times by doing things in the mornings before the temperature becomes unbearable. When I can’t plan around my mornings, I make sure to have ice with me in one form or another in order to keep my core temperature a bit more controlled.

Ice vests are awesome. I never thought I would like wearing one because most of them aren’t very stylish. I thought I would look like a fisherman wearing a tackle box or a construction worker packing pockets of nails, but they actually aren’t so bad. Most of the time people don’t even realize I’m wearing ice. I’ve turned it into my own personal trendy style. Even healthy people get jealous and want one for themselves.

I also try to keep ice water with me to sip on. Sometimes just holding the cold bottle is enough to get me through a bad moment. That and wrapping a cold wrap around my neck help tremendously.

My freezer has a shelf dedicated to ice packs for my vest, frozen neck wraps and partially filled water bottles frozen and ready to be topped off with cold water. It’s amazing how much ice gets me through a hot day outdoors.

Air conditioning, ice and careful planning are my summer norm now. You may not find me hanging out at the beach watching a game of volleyball or spending the day at an amusement park waiting in long lines for the roller coaster, but I will still be having fun and possibly eating a snow cone or two.

Yes, multiple sclerosis has limited me. That’s a fact. But even with my limitations I am able to do things that I never thought possible thanks to innovative technology and devices that help to keep my body temperature regulated. Summer…here I come!

Oooh…I think I just heard the ice cream truck going down the road. Help. Does anyone have a dollar I can borrow?

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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If You’re Not Staycationing…

Earlier this month I talked about considering a staycation in regards to planning and preparing for the upcoming summer months. Not everyone may be staycationing around their home this summer so I wanted to talk about travel preparations if summer is going to take you out of your backyard. In a prior post about summer traveling, we reviewed some things to think about and prepare for when creating your travel itineraries. Considering things like accessible accommodations, materials needed for the trip, and who you can work with for assistance were some of the discussed topics. It’s important to do what you can when making travel arrangements so you can be prepared as best as possible, especially when dealing with an unpredictable disease like MS that makes its own plans a lot of the time.

While the planning piece of the trip is significant, let’s circle back to the beginning when you’re thinking about your destination. What’s important to you when deciding where to travel? What does the decision process look like? Everyone has their own needs and wishes when contemplating journey destinations; many even have a ‘bucket list’ of desires that they wish to accomplish at certain points of their life. Some individuals may have a random selection method they use to pinpoint their vacation spot—pick a point on the map and go. Others are very methodical in their decision making because there may be multiple factors that need to be taken into account to plan the journey. Either way, it’s good practice to be mindful and considerate of what your needs and wishes are and to not be afraid to fulfill them. Half the fun is in the planning so enjoy even these smallest of moments along the way.

What are some of your plans for the upcoming summer months?

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Summer is the Carnival of Life

By Lauren Kovacs

Step right up and get your tickets for the carnival of summer with MS. Don’t be shy about entering the MS fun house. Try and visit places before the landscape melts in the summer sun. Distortions can be fun and dealt with at the same time.

MS is not fun, I know. Attack it with caution and preparation. Fatigue is an annoying clown that follows you around the carnival. It taps you on the shoulder just when you get your cotton candy. It makes you see it as a fluffy pink pillow. A nap would be nice. Take charge and eat it. I hate clowns.

Sandals can mean cool (temperature wise) feet. Cool feet often lead to cooler bodies. If you are a lady treat yourself to a pedicure first. I recently could not expose my toes because my son told me my feet were “jacked up.”

Stay cool by hanging out in the shade, if you skip a ride, for example. Eating ice cream or a snow cone can help cool you. Just use two hands because fatigue and/or heat can bring on tremors. I learned this by launching my ice cream cup at my mother-in-law. It missed and we laughed.

Laugh at yourself. MS can be funny. It can be very mean, but humor helps calm that beast. If you make light of something you did, it seems to help everyone to move on. Yes, I threw my ice cream cup. Funny. Next.

Wear wrap-around polarized sunglasses, and a hat that you can wet down. I had my manual wheelchair, when we went to a theme park recently. One of my sons pushed me and I occasionally closed my eyes to block out over-stimulation from sights. The glare was reduced when my eyes were open. Too much to look at can increase my fatigue. Glare drives me nuts.

Drinking only water can help limit bathroom trips too. I love soda and I often need the kick from caffeine. However, sticking with water is better. Fewer bathroom trips also help limit fatigue. Wear an incontinent pad, if you need to. They are bulky, but if you are sitting no one knows.

Limiting sights and stopping in shade helps slay the fatigue clown. Only drinking water limits the energy exertion involved with numerous bathroom breaks from caffeinated beverages. Proper sunglasses and hats you can wet down make a big difference. Wearing sandals, if your toes are pretty, can help keep your body cool too.

The summer carnival of life with MS can be tough to navigate. We are always trapped in the fun house. I know it is not really fun; however, the many distortions in our lives can be dealt with. Preparation and humor can help smooth that wavy mirror in the MS fun house.

Go enjoy yourself. Limits are all around us, but do your best. Shade, frozen treats, and limiting energy sucking activities can assist us. Try and stay involved and fight the inner hermit. Send that fatigue clown to the naughty corner, while you enjoy life. Know your limits and have no regrets at the same time. Have a churro. Chocolate melts.

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MS Conversations Named One of the Best MS Blogs

Last week, our friends at Healthline published their list of the best multiple sclerosis blogs for 2017, which includes MS Conversations!  Every year, Healthline compiles a list of the best blogs for the MS community based on the information provided and the personal stories shared throughout the year.

MSAA is thrilled to be included on this list, and we would like to thank all of our contributing writers and our guest bloggers, who share their powerful and unique perspectives on living with multiple sclerosis with us every month!

Check out the full list of winners on Healthline’s website.

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Peach Milkshake – Recipe of the Month

This peach milkshake recipe has just a few ingredients and is perfect for sipping on summer nights. It would be a perfect treat for the Memorial Day weekend too. Who doesn’t like a milkshake!

I like to keep my blender right out on the counter so making a milkshake is an easy thing to do.

Ingredients

  • 1 (15 ounce) can sliced peaches, drained
  • 4 scoops vanilla ice cream
  • 2 cups vanilla soy milk, or 1% milk
  • 1/4 cup orange juice
  • Splash of vanilla
  • Dash of cinnamon

Instructions

In a blender, combine peaches, ice cream, soy milk and orange juice. Blend until smooth. Pour into glasses and top with whipped cream.

Enjoy!

 

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Ice Ice Baby

By Kristi Krause

Last summer I was mid-relapse and hating life. I like to think of flares and relapses as living in a “dark cloud of despair”; a type of brain fog that grows thicker, heavier and angrier as the day wears on to slowly smother the life out of you. Invisible, yet it can not be ignored. Working then felt disastrous, but my patients and coworkers never caught on to my struggles. I was new to MS and beyond frustrated at how much power it had over me. By lunch break, I would send a hysterical text to my husband, “I just can’t do this anymore”. He, my neurologist, and reality joined forces to try to nudge me toward leaving critical care. To that, I stubbornly responded, “Absolutely not, it’s my comfort zone!” The fear of a future reviewing charts in the muggy, stale basement of the hospital fueled my search for help with symptom management.

I read about how cooling measures increase the transmission ability of nerve impulses through areas of brain damage, but had no idea that there were vests, scarves, and gloves made for this purpose. The thought of wearing ice sounded miserable because feeling cold is fairly loathsome. I was desperate when I put it to the test one day at work. Between the disaster direct admission to ICU and my tracheostomy patient having hourly panic attacks, I was severely fatigued by first break. I escaped into the supply closet, grabbed an ice pack to put on my head and five minutes later, the brain fog was gone and I was high. It was almost as glorious as a double espresso shot! Returning often to the closet for the next fix, I became an instant ice junkie.

I started browsing the internet for cooling items and ordered most of what I found. Some were duds and others a godsend. I worked with wearable ice packs under my scrubs, and had extra packs in the freezer to change out at break and before getting into the hot car to drive home for the day. My MD wrote a prescription for a cooling vest so insurance would reimburse the cost (instructions on how to do this are online). I have both ice and phase change inserts for it and I use the vest while  working out during most of the year.

My favorite scarf to wear while cleaning the house drapes around the neck for carotid cooling. I still have to take breaks  while trying to accomplish simple household tasks that were once no big deal, but far fewer and shorter breaks than normal. Eating a popsicle during said break restores energy even faster!  Cooling items can be worn to summer sporting events or for “pre-cooling” on the way to dinner, the grocery, whatever. Music venues, however, are not so welcoming for wearing ice, as security believes you might be smuggling bags of illegal substances. Do not try this! Instead: arrive well hydrated, have a drink, eat the ice, ask for more ice, eat ice the whole time you are there, use the hand fan you brought, and go home before your body begins to feel weird(er).

Summer can be embraced with excitement for people with MS. Cooling measures can allow even the least mobile of us to get outside and soak up the sun. The benefits of sunshine versus vitamin D supplementation are possibly numerous and poorly understood, but why wait for science to figure it out? I am a simple girl; if nature made it and we ran around naked in it for thousands of years, then I believe it might good for us to stop being afraid of it. I do know that with safe levels of sun exposure, there can be a boost in mood, the body can regenerate ubiquinol (ever heard of CoQ10? Hello mitochondria!), and produce immune-modulating effects by generating the hormone, vitamin D. My tips for maximizing these benefits are to drink/eat something green before going outside, waiting about thirty minutes before slathering yourself with sunscreen (depending on where you are, so use common sense), and don’t wash off the vitamin D from your skin as soon as you go indoors.

MS tends to emerge at the worst times in a young person’s life, and new mothers are not exempt. Summer heat can be doubly threatening to someone expecting. As long as I have something frozen on my body, stay hydrated, and remind myself to take breaks, then the dark cloud of despair is kept at bay during summer. My ice vest and cooling gear are even more important to me now that I am pregnant! I workout at a snail’s pace, am easily winded, have frequent temperature fluctuations and painful cramps in strange places. But I still get out there, however sad my little workouts may seem, because I am exercising for two now. Sometimes it takes hours to hit my mileage goal for the day, but I would rather be slow than say “I can’t.” Baby and I will be healthier and happier because of it. I imagine that when August arrives, I will be waddling around the track, wearing my ice vest blissfully unaware of the sweltering misery that I have been warned about when one is due in late summer.

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What are you doing to cope?

If you can believe it, we are already in the month of May! 2017 has been steadily moving along and this month we are looking into the topic of coping. Everyone has their own versions and ideas about how they best cope with, and through, stressful or difficult situations. For years professionals have presented, written about, fine-tuned and zenned over the most positive ways that we can cope. While not every example will work best for every person it’s always great to have some ideas in your back pocket when the need arises. There is nothing wrong with testing a few out to see which ones do not work for you and which ones are your go-to when counting to 10 just does not cut it anymore. You can try:

  • Cooking or Baking
  • Scheduling some time off and stick to it
  • Spend some time with young children or animals (both tend to be care free and some of that may rub off on you during your time with them)
  • Create something artistic (this can be any number of mediums such as music, clay, paint, found objects, writing, photography and the like)
  • Visualization, Meditation. Group or Individual Therapy
  • Physical Activity (this too can be any number of things; swimming, dance, yoga, stretching, sex…yep, you read that right…a bike ride or walk)
  • Give of yourself to organizations you are interested in. Volunteering can not only  help you, but also others
  • Explore something in your area that you haven’t before
  • Get some more sleep
  • Seek out speaking with friends or family and expressing your emotions

We all know that we have some negative coping mechanisms that may help for a short period of time in the moment but still leave us a bit in the lurch. Seeking out more positive ways in which to cope, these or others may help us to set up a more positive pattern to help deal with a negative situation. We’d like to hear some of your positive coping skills or ideas that you’d like to share. Take a moment to check out our thread on My MSAA Community.

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When You Have MS, You Can’t Live Without…

Recently, our friends at Healthline.com asked a question to individuals with MS:

When you have MS, what is the ONE thing you cannot live without?

Healthline collected responses from various bloggers and MS community members to compose an article of the many ways people with MS are able to overcome challenges thanks to their strong support systems. Take a look at the ways these individuals stay motivated during tough times, and what helps them remain positive in the face of adversity. Some examples include family, friends, the outdoors, wheelchairs, and even MSAA! Read more examples here. What is something you can’t live without since your diagnosis?

P.S. – You may recognize a few names – MSAA clients Cathy, Sara, and Simone from our Changing Lives Monday to Sunday video offered their insight to Healthline as well!

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Consider a Staycation!

Wow, can you believe it’s already May? Time feels like it’s flying by and we’ll be headed into the summer months before you know it! Many people spend time traveling and taking trips during the summertime, usually because kids have off from school and different attractions set-up shop and thrive during these warmer months. But many people aren’t able to travel abroad or from state to state for various reasons at times; so you may have to get a little more creative about how to spend these vacation days.

The word “staycation” is an expression that has increased usage within the past 10 years or so as a way to describe a vacation spent at home—spending time seeing local attractions, participating in activities close to home, or just hanging out in the backyard. What constantly amazes me is how many beautiful and remarkable sights so many people have right in their own cities! The world is filled with many extraordinary attractions and wonders, but sometimes it’s nice to be able to start at home with learning and appreciating what’s nearby. From parks and forests to museums and historical landmarks, there can be new things to explore and experience right near home. Traveling can be great, but a staycation can be just as satisfying. A staycation can also reduce stress because you don’t have to deal with long distance travel and spending excessive amounts of money; it may be more relaxing to just lay low and plan day trips and activities at your own leisure.

If you’re going to commit to a staycation, one of the most important things to do is to unplug. This means that if you are employed, disconnect from your email, and do not go into work just because you’re close to home! If you participate in daily groups or activities that you want to take a break from, this is the time to do just that. If you want to stray from your day to day and do something different, this is your opportunity. It’s tempting to stay connected because you’re not truly ‘away’ on a vacation elsewhere, but it’s still YOUR vacation, and you deserve this time as much as anyone. If you want to make other guidelines for your staycation like not using any electronics at all or not communicating to certain folks, that’s completely up to you! After all, it’s your time to do what you wish, and if your wish is for a restful staycation, then sit back and enjoy it!!

Have you ever had a staycation? What were some things you did to enjoy your time?

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May 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2017-18 Art Showcase – celebrating the work of artists affected by multiple sclerosis (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 online gallery to view all of the new submissions.

Martha Sue Meek – Arlington, TX
Grandmother’s Flowers
Martha Sue Meek - Grandmother's Flowers

About the Artist:
“I don’t remember a time when I didn’t love art! When mother was painting she would set me up at a place nearby. I taught art for thirty plus years.

Then MS came in with not much warning about three years ago. I have been active my whole life and then BAM, MS has slowed me down. What has happened for me is my MS, even though I didn’t ask for it, gave me time to reflect and paint! I realized my art would give me time finally to paint more than I ever had before. Art gives me great comfort and peace. MS is a battle, but I WILL NOT let it dictate how I feel about life!”
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