Community Views: How Changing My Diet Helped Me Feel Better

Paying close attention to what you eat is important if you live with multiple sclerosis (MS). Although there is no special “MS diet,” the foods you eat can make a big difference in your overall health. Your diet may also affect your energy level and your bowel and bladder function.1

To learn more about how people with MS are working to improve their diet, we reached out to our Facebook community. We asked members, “Have you altered your diet? What has your experience been like?”

Keep in mind, of course, that everyone is different. There is no guarantee if you follow a particular diet, you will feel a certain way. These are just the experiences of 40 of our Facebook followers. Be sure to consult your doctor before making any major nutrition changes!

Sugar is out and fiber is in

A low-fat, high-fiber diet is important when you have MS. You should try to limit the amount of sugar and processed food you eat. And getting enough fluids is also important.1,2

“I hardly eat fried foods anymore. I bake or air fry now and I limit pasta dishes and rice. I cut out sugary soda pops. Lost weight and feel lighter. I try to take probiotics also. Helps with digestion. I eat lots of homemade soups and salad. My body likes that.”

“Clean eating. No artificial or inflammatory foods/ingredients. No gluten/dairy. So far, so good.”

Staying at the right weight makes sense

People who live with MS should try to maintain a healthy weight, recommends the National Multiple Sclerosis Society. Obesity may increase the risk of other health conditions that can worsen a person’s MS.2

“I lost 10 pounds by eating less meat and more vegetables.”

“I know there’s a lot of negativity towards Keto but that’s what worked for me. I lost over 60 pounds in the course of 2 years (walking daily as well) and I had very low inflammation. I got off of it for about 2 years and am starting again because I felt so much better on it. I also did organic and grass-fed meats and eggs.”

Pass up the meat and try a nut butter

People with MS should focus on lean sources of protein and healthy fats. Experts recommend limiting intake of animal-based fats. This means cutting back on butter, whole milk, and meat, but it does not mean a ban on delicious foods.3

Try out some different kinds of fish. And include some nut-based fat sources like olive oil, avocado oil, and peanut or almond butter in your meal plan. They are a rich source of healthful omega-3s.3

“No salt, dairy, beef, processed food or processed sugars.”

“I have eliminated dairy and 90 percent gluten. Those made the biggest difference in how I felt overall. I have generally stayed away from processed foods. A family member ranches, so we get amazing meat through them, but we don’t eat a lot of meat anymore.”

Eat a rainbow of fruits and vegetables

Experts recommend that people with MS increase their intake of fruits and vegetables.2,3

“I am limiting processed foods and processed carbs and my focus is on 3 to 5 servings of fruit and vegetables each day, and 2 should preferably be dark leafy vegetables. I eat blackberries, blueberries, strawberries, pistachios, and broccoli daily.”

“Vibrant fruits and veggies – as much color as I can get on my plate!”

“I eat a lot more fresh fruit and vegetables and more food that has no preservatives, is not fried, and is low in sodium and sugar. While I’m not 100 percent with this, I DEFINITELY feel a difference with the way I eat.”

Thank you to everyone who shared information about their experiences with multiple sclerosis and making changes in the diet. We appreciate your honesty and willingness to share.

References:

1. Diet and Nutrition. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Diet-Nutrition?Accessed 8/2/2021.
2.Wellness for People with MS: What do we know about diet, exercise and mood and what do we still need to learn? National Multiple Sclerosis Society. Available at https://nmsscdn.azureedge.net/NationalMSSociety/media/MSNationalFiles/Brochures/WellnessMSSocietyforPeoplewMS.pdf. Accessed 8/2/2021.
3. Is there a multiple sclerosis diet? The Mayo Clinic. Available at https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/expert-answers/multiple-sclerosis-diet/faq-20057953. Accessed 8/2/2021.

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Identity, Humor, Intelligence, & Chronic Illness

By Stacie Prada

Living with a chronic illness that progresses and has no cure has made me hyper aware of how I view myself and others. Faced with potential physical disability and cognitive decline, I realized how much of my identity was based on what I can do, say and accomplish.

I remember my early years navigating acknowledging I had multiple sclerosis. The long list of symptoms and conditions that can result from MS lesions is frightening. Cognitive changes scared me. They can affect a person professionally, compromise analytical and problem-solving skills, and end a career. They often change personal relationships, and I wondered if they would change how I interact with people. 

These scared me, and in that swirling jumble of symptoms, possibilities and impacts, I worried what it might mean for my personality.  I worried it would change how people see me and how I see myself. 

Would I lose my sense of humor and intelligence? Would my personality become something different? Would I like who I become?

Identity

It turns out I am becoming more serious and intentional, and I’m also keeping my quick-thoughts and silliness. MS integrated into my identity.  It didn’t displace it. MS is a big part of my life, but so are all of the other aspects of my being. 

I haven’t lost my sense of humor, but I have become clearer about why things make me laugh. Something I experience or observe may make me chuckle to myself, and whether I share it with the people around me depends on the situation and relationship. Anecdotes and observations on living with a chronic illness can ring true and boost connection with some, and they can make others uncomfortable. Sometimes a modification to how it’s told can make it relatable, and other times it’s worth waiting to share with a person who already understands.

Being silly can sometimes be seen as immature or flippant. Growing older, gaining confidence and learning every day helps me share my thoughts more and worry less about what people will think. If someone interprets me differently than I’d like, I’ve gotten better about not owning their opinion.

I’ve watched friends experience physical and cognitive impacts due to illness and aging. Searching for the right word to express their thoughts can take longer, but it’s also because the right word matters to them.

Intelligence is not the ability to retrieve a word or speak quickly. It’s understandable yet misguided to presume communication equals comprehension and intelligence. I’ve learned through the years and many friends that the ability to communicate or retrieve words have no relationship to a person’s intelligence or understanding of things.

When a person takes their time to find the word that accurately captures what they want to convey, I’m often rewarded with a perspective and insight I hadn’t anticipated. It encourages me to honor the person and the conversation by staying quiet, interested and unhurried.

Curiosity and not rushing a conversation are crucial. Not finishing a sentence when they’re searching for the word reaps rewards. I may think I know what they’re going to say, but often they surprise me with more depth, cleverness and humor than I’d anticipated.

If I could talk to the newly diagnosed me from 13 years ago, I would tell her this:
Living with chronic illness affects everything, but MS will integrate into your identity in a way that matches your personality. Your intelligence, humor and identity will evolve, but they will be what you make them. You’ll gain insight into a world that teaches you about others and yourself. The experience will make clear who you are and who you want to be in this life. Through all of it, you’ll still be you.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Funny, Not Funny

By Lauren Kovacs

OK so there is nothing funny about a chronic illness. Injecting a little bit of humor can go along the way. Don’t force it.

Yeah, the fire breathing dragon on my path to a decent night’s sleep is not funny. His blow torch breath on my arm for hours kinda sucks. But, maybe he can get a part on Game of Thrones instead of being part of my nightly nerve pain.

So my right leg identifies as a tree log. A very heavy log. It is my Barbie Leg. The Floppy Fish Foot is a special added MS gift. 

If I can’t manually bend Barbie Leg, Floppy Fish Foot steps up and makes movement extra hard. It gives 110%. It really knows how to increase the difficulty.

I left many things behind when my boys became teens. Not so much in reality. I load my van for a trip with as much stuff as when my boys were little. Only now my bed rail has replaced the pack and play. My wheelchair replaced the stroller and protein powder pushed out the baby food.

Ah, to be young again. Wait… my special fork replaced baby spoons and my water bottle with a straw replaced sippy cups. At least I am accustomed to needing lots of stuff.

Try and find a wee bit of humor in things. Not everything is funny though. I spend many moments in frustration tears. Take something you deal with and turn it around. The back of my thighs are starting to burn a bit.  Nothing big or painful yet. Getting ready to turn that around with humor.

Yes, my right leg is spastic, but I turned it into something silly. I can laugh most of the time. Plus I am finding people understand a Barbie leg better then spasticity. Make your descriptions as simple as possible for everyone. Your silly analogies can clarify things for people.

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5 Years of Camaraderie and Community

Living with a chronic condition — such as multiple sclerosis — can feel isolating at times, particularly during a pandemic. Especially in this last year and half, we have all learned the value of connection with other people. One way that people affected by MS have managed to connect and create a sense of community for the last five years is through MSAA’s online peer forum, My MSAA Community.

My MSAA Community is a free, online peer-to-peer forum for members to share their MS experiences. The community is a safe space that allows users to post a question and get answers from members of the forum, share their MS journey, connect with others, and contribute to ongoing conversations.

For the past five years, members of the MS community have come to this online forum looking for advice and connection from someone living a similar experience. With more than 6,500 members and more than 16,000 posts, you can find:

  • Coping strategies for difficult MS symptoms
  • Tips on how to talk to your healthcare team
  • Discussion about different therapy options
  • Support for some of the more challenging aspects of living with MS
  • Fun stories, and more

Join My MSAA Community and help us celebrate five years of camaraderie and connection for people affected by multiple sclerosis.

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Day Trip Outings

By Stacie Prada

Living with MS can lead a person to avoid doing things outside of the routine. Dealing with unpredictability can make a person avoid additional inconveniences and uncertainty.

When my gut reaction is to think something is too much effort, it’s good for me to think about why I’m resisting. There might be a good reason for resistance, but knowing the cause is helpful. If it’s rooted in avoidance or fear, I want to challenge myself to identify what I can do that would offset the what ifs. 

What if it’s not worth the effort? What if I go somewhere and my MS symptoms rear up? What if I need something and I don’t have it or I can’t get it?

Living well with MS requires knowing yourself well, respecting and adapting to health needs, and planning ahead. All of these life skills are well-suited to successful and enjoyable outings, and doing new things can add excitement and fulfillment to any life. Day trip outings are perfect for experiencing the joy of travel while keeping the comfort of sleeping at home. 

You do you. If you don’t want to go somewhere or do something, don’t!  But if you want to do some day trips and are feeling resistant, consider this:

  1. Perpetual planning allows spontaneity to thrive. Many barriers can be accommodated with creativity, preparation and a willingness to explore alternatives. Over prepare and expect things won’t go perfectly as planned. 
  2. Pack a day bag with personalized essentials to ease stress. The day bag should include anything that will provide comfort and options. I like to include water, snacks, medication, bath tissue, sunscreen, jacket, hat, extra shoes and socks. Think about everything that could be in the car to make it feel like any circumstance or change of plans could be accommodated.
  3. Set reasonable expectations. Overestimate travel time, and grant yourself permission to change plans.
  4. Focus the trip around one anchor focus or goal for the day. Create a mental or written list of other things that can be done, if plans change and energy and time allow. Back up plans help diffuse disappointment when things don’t go as intended. Schedule plenty of extra time to do more or less in order to take good care for yourself. Delays and unexpected changes of plans can sometimes lead to wonderful opportunities.
  5. Allow for lots of bathroom breaks, and never pass a restroom assuming another one will be available later. It’s better to go too often than to not have access to one when it’s needed.
  6. Make the travel experience as fulfilling as the destination. Go with someone you want to spend time with. Have a good playlist, podcasts or book on tape ready to play. Consider why you’re going. If it’s a trip to a view point, there might be clouds obscuring the view when you get there. Enjoy the journey, the people and doing something out of the routine. 
  7. Look for surprises, and be open to exploring them. Allow for impromptu diversions. Rainbows, herds of elk and skydivers landing have all been rewarding unplanned sights I’ve enjoyed because I looked beyond the road and was willing to turn off the planned drive.
  8. Use technology, but don’t get overwhelmed. Look online or use apps for recommendations in the area, and consider them. I love using navigation apps for simplifying the directions and letting me know the time and distance to my destination. 
  9. Talk to people. Locals always know the best places, and they love sharing special tips that you might otherwise miss. Just connecting with people can be fulfilling too!
  10. Interrupting someone is required when pointing out something nearby or of interest that won’t be visible a few moments later. 
  11. There’s always time for ice cream. Literally or figuratively, indulge and enjoy the trip!
Elk on a day trip

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Community Views: Advice I Would Have Given Myself at Diagnosis

Advice for MS diagnosis

Multiple sclerosis (MS) often feels overwhelming at the time of diagnosis. Feeling powerless may be your first reaction. Yet, as you live with MS, you find strength and coping strategies.

Everyone needs tools for the journey. We recently asked the Facebook community, “If you could go back to the day of your diagnosis, what advice would you give your younger self?” We have compiled some of the shared wisdom below.

Get a second opinion

One important tip you shared was to see an MS specialist for your care. While your primary care physician (PCP) is a good starting resource, having someone who specializes in MS is vital. Specialists will be current on the latest research and are your best asset for managing the disease.1

“Get a second opinion with a doctor that specializes in MS right away.”

“I was referred and told it would be a 6-month wait by a doctor I respect. I turned out to be 9 months and worth the wait.”

Mental Health

Being diagnosed with MS can have a significant impact on your mental health. Having a chronic illness creates all sorts of turmoil as life and abilities change. Caring for your mental health at the outset of the disease helps you manage long-term.

“Depression has been harder for me than the MS! Get a good therapist and investigate the meds.”

“Mental health is just as important as physical!”

Treatment

The community also shared the importance of developing a treatment plan with your doctor from the start. Getting MS into remission and keeping it there involves making a plan and staying consistent with it.

“Get on treatment and STAY on treatment.”

“Start on relapsing-remitting drugs as soon as possible.”

“When you go into remission, be sure to keep taking your medication even if you feel fine.”

Move your body

Getting regular exercise helps manage MS symptoms. Gentle exercise can improve strength, mood, bowel and bladder function, and bone density.2 Many of you shared what a difference regular movement makes with this disease.

“Do the yoga, do it now and keep doing it.”

“Stay as active as you possibly can. Keep your muscles in shape.”

“Walk while you still can.”

Lifestyle changes

Living with MS involves adapting your lifestyle to accommodate the changes. Some of you prioritize your “bucket list” in the early years of having more stamina. You also learn to slow down and listen to your body to avoid exacerbations.

“Eat right. Stay hydrated. Stay away from stress.”

“Don’t try to get everything done before getting too fatigued.”

“Do whatever you dream of now because you might not be able to do so later on.”

“Be willing to adapt. Your future husband will NOT fold towels the way you do – and that’s okay, he’s trying to help.”

Keep living

One of the most crucial things you shared was focusing on enjoying life. Life does not end with an MS diagnosis. It will change, many days will be hard, and yet, as you reminded us, “Your disease doesn’t and never will define you!!”

“Stop worrying about what MIGHT happen and focus on the good in life.”

“Don’t assume you will follow the path of someone else; everyone is different.”

“It will be OK. OK may just look different, but it will still be OK.”

“You are still you and always will be. This is just a detour in your life’s journey. It is NOT the end of the road, but rather the beginning of a new one.”

References:

1. Cavallo M. Neurologists and Specialists of MS. MS Focus Magazine. Available at https://www.msfocusmagazine.org/Magazine/Magazine-Items/Posted/Neurologist-and-Specialists-of-MS. Accessed 5/25/2021.
2. Exercise. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Exercise. Accessed 5/25/2021.

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Too Too Hot

By Doug Ankerman

Yep that’s me in my usual place on hot days… laying in front of the register, hogging all the AC.

Except on THIS hot day (the 1st one of the season) our air conditioning was on the fritz. There would be no refreshingly cool splendor till we had someone come check it out.

Our neighbor knew a guy who knew a guy who did AC work on the side. Always looking to save a few bucks, we called the “mystery guy” named Dennis who said he wouldn’t be available for a couple days.

“No prob,” we replied. “We’ll see you then!”

What followed was a stretch of near 90 degree temps with thick Ohio humidity you could serve with a ladle.

Yes, I was fried.  My MS-infused nerve endings were popping like bacon on a hot skillet. My dogged feet dragged ruts in the carpet going room-to-room in search of a cool spot.

I baked. It would have been cooler in the oven had I turned on the exhaust fan.

I rejoiced as word came that Dennis, my new-found AC savior, would be here the following afternoon. That night was another restless slumber. I actually had to be peeled from the sheets getting up in the morning.

My legs were weak. My arms were numb. I was Betty Spaghetti’s older brother, Bobby.

Put me in a strainer ‘cuz I was 180 lbs of cooked pasta.

Dennis knocked on the door promptly at 3:30. After I finished kissing his scuffed boots, he and his tools commenced to work on our defunct air conditioning.

A mere five minutes later the behemoth box was humming with life. Seems it had been turned off outside and all Dennis had to do was flip a switch. (We had new siding installed last fall so the siding guy disconnected the AC and simply forgot to turn it back on.)

Cool air returned — and slowly, so did feeling in my body.

Thanks to Dennis I have returned to my usual summer haunt. Hogging all the air. A glutton for comfort, I am.

I tell you this tale because you already know the tricks of keeping cool when temps flare. So I’ll just remind you to be careful. Work slow and steady. And enjoy the too too hot summer wisely.

*Doug writes silly stuff about MS and other topics on his humor blog at myoddsock.com

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I Crumble in the Summer Heat and Sweltering Humidity

By Penelope Conway

Thermometer in the summer heat

Last summer the heat outside kicked my butt. I tried all the normal tricks to remain cool and keep my core body temperature down, but no matter what I did my body grew weaker as the summer progressed. I’m not looking forward to the coming hotter days.

It’s crazy to get exhausted just going to the mailbox. That short of a trip and I’m ready for a nap. I have learned to take things as they come and listen to my body even though it’s not always easy to do. It can actually get quite frustrating.

Sometimes I will have my heart set on going somewhere then not have the energy to go and have to cancel plans. Or I have something that needs to get done but it doesn’t get done for days and days and days just because I can’t muster up the strength to do it. If I could, I would hire a maid to clean for me, a cook to make my meals and a chauffeur to take me places. Now that would be the life! Include getting rid of MS into the mix and that would be my dream come true.

But as it is right now, I’m the one that has to do everything. It’s up to me to take care of the house, do the laundry, prepare my meals, bathe, vacuum, pay the bills, make the bed, put gas in the van, clean up my messes, and live with MS.

Between the coming heat and sweltering humidity, I crumble. Some of my tips of how to survive the hot days may seem a bit odd, but they work for me.

Wear an Ice Vest to Bed

I have an ice vest I receive many years ago but it’s too heavy to wear so I have created a lighter weighted version of the vest and wear it to bed. That’s the time of day I really need help with the heat the most. If I can’t get comfortable at night, I’m miserable. The ice will stay cold for about two and a half hours and then I switch out the ice with a second set of ice packs.

Make Cold Drinks

I keep plenty of frozen water bottles that I take out of the freezer an hour before bed so they have time to thaw out and I can sip on them. I also will use my ninja blender to crush ice and make soft snow cones to enjoy. They actually cool me down quite a bit.

Keep a Water Hose Hooked Up Outside and Ready to Spray

I still do yard work which can be killer in the heat but having access to water that you can spray as needed helps. I have been known for getting drenched each trip on my riding mower to the back yard.

So what do I do when the heat overwhelms me and I can’t do what I need to do? I do what I can and leave the rest for another day. I have had to learn to be okay with not getting everything done that I want or even need done.

Taking care of me is way more important these days than taking out the trash or getting the mail. My well-being is more important than attending a ballgame in 100 degree weather and my health is of greater importance than buying a birthday gift for the lady down the street.

Be good to yourself. Take care of you. No one else is going to do it for you. It’s okay to cancel plans, veg on the couch, sleep late, and most importantly to need help. That’s not being stubborn or selfish. That just what you have to do to keep going.

Keep going, doing, being, until you can’t any longer. I have never met an MSer that wasn’t a strong and powerful fighter even on their weakest days. We push through some of the toughest battles. Things that other people never see or even know about because we simply keep going. MSers are an amazing example of strength, persistence and determination. I’m so very proud of you and cheering you on today.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2013. 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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Summer Heat

By Stacie Prada

Summer’s here, it’s getting hot, and it’s getting really tough to stay cool.

With multiple sclerosis, many people have heat sensitivity that triggers MS symptoms. For me, it brings on fatigue, and my body goes numb. It usually starts with my feet and legs. Without intervention, the numbness can spread to my full body from the neck down. It’s not disease progression, but it can be frustrating and depressing. In my youth I basked in and relished extreme heat. Now it makes me anxious for the possible consequences.

Cooling feet off in the water

Suggestions abound for ways to stay cool in the summer heat. Stay hydrated, wear cooling aids, stay in the shade, have air conditioning, travel somewhere cooler, be rich. The last one is said in jest, but there are so many barriers to remaining cool when the weather heats up for more than a day or two. I suspect the barriers are easier to remove when wealthy.

The preferred options are also very individual. Environment, health, finances and area of control differ drastically for each person. Cool showers work for me, but they might not be possible when needed. They can also be difficult for those with mobility issues. My go-to method is to use my medication cold packs as cooling aids. Wrapped in a towel, they cool me down quickly when placed on my belly or the back of my neck. 

I don’t have air conditioning in my home or at work, so I plan ahead for hot days. My office is located in an historic building of stone and brick construction without air conditioning. We fondly refer to our office as a pizza oven when the brick warms up and our offices remain excessively warm for days. In my area, it’s the start of a heat wave. It was 80 degrees at my desk today, and the humidity made it feel hotter.

I drink cold water, use the ceiling fans, open the windows for air flow, and direct a small fan above my desk at my torso. Films coating the windows and blinds adjusted help diffuse the sun’s rays from directly warming the office. None of this keeps the office cool, but it makes it a little more bearable. 

It’s a challenge getting work done and looking professional while trying not to overheat. Sportswear is good for the technical construction and breathable fabric designed to keep athletes comfortable, but it can get expensive and isn’t always appropriate for the office. Sun dresses, skirts, breezy style tops and other loose clothing that don’t cling to sweating skin help. Often being comfortable can be achieved, yet we resist in an effort to be socially acceptable and presentable. The business world generally encourages discomfort at the expense of good self-care. I want to give myself and others permission to do whatever it takes to stay as cool and comfortable as possible in hot weather.

I try to remember the conditions where I am are not the same everywhere, and they’re sometimes drastically different at a nearby location. It’s interesting to me how different it is for the offices across the hall located on the shady side of the building. They’re often cool even on very hot days. I need to remember this. Where might it be cooler? Go there for a moment. Even a quick break could help.

Note to self: Sometimes it’s not about being able to do something to relieve the discomfort, it’s about giving myself permission to do what it takes to be comfortable.

I live near the beach, and yesterday I walked along the shore barefoot in the water. It felt so decadent that I couldn’t believe I’d resisted the idea of taking off my shoes and socks to get in. I knew the saltwater would be really cold, and it was. I hadn’t considered how refreshing it would be after the initial shock. It cooled me off, and the unplanned stroll was heaven.

Lesson noted: Sometimes the initial discomfort is necessary to get to comfortable conditions.

Please do what you need to do to care for yourself and those around you, especially in heat waves and situations where certain behavior is expected. You might just inspire someone else to give themselves the permission they need. 

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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The War on Summer Heat

By Lauren Kovacs

It is a war of bugs and blankets of heat.

Limit time outdoors folks. Being unsocial is part of MS for many. I would rather not be a wet noodle. Even if you are an extrovert, say “no” to the soggy social butterfly. I would rather be perky than soggy. Butterflies can’t fly with wet wings and MS can drench them. Be social inside. Air conditioning is our friend. Stay cool and they will come, so to speak.

Drink slushees and smoothies. I find sipping semi frozen drinks help me, if I can get through the brain freeze. When available, ice cream is my BFF. Ice being the main word for me. Wear ice and consume it.

Cool feet housed in sandals, a cold drink, air conditioning and various cooling items are my shields in the war on summer heat.

I also picked up a trick from my aunt years ago for fashion purposes. Now, I use it for MS. Swim trunks make great shorts, with the mesh cut out. They can get wet, thus a glorious moment of reprieve. Bonus, they dry fast and allow for multiple cooling opportunities.

I used cooling wrist wraps, when I rode horses for therapy. I need new ones, however. Their farm smell was offensive at my last theme park visit.

While the kids rode some puke inducing roller coaster, I waited in the shade. Many folks didn’t embrace the earthy smell my wrist wraps were omitting. So yeah I need new ones.

Cool is cool. We are not going to gain brownie points. I often pay for trying to be outside. Stay where it is cool. I personally have days of paybacks just for letting my butterfly be social. If I get hot, then paybacks are longer.

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