I Crumble in the Summer Heat and Sweltering Humidity

Posted on June 25, 2021 by MSAA

By Penelope Conway

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.

Summer Heat

Posted on June 23, 2021 by MSAA

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.

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/

The War on Summer Heat

Posted on June 11, 2021 by MSAA

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.

Community Views: Managing a Flare

Posted on May 28, 2021 by MultipleSclerosis.net

Prepare for MS flare - an illustration of an MS flare

Part of living with multiple sclerosis (MS) is dealing with flares. A flare, also called a relapse, is when MS symptoms recur or worsen.¹ The change in symptoms lasts for at least 24 hours, but often much longer.¹ Flares throw a wrench into daily life and plans. They are challenging to manage. Curious about how you handle flares, we recently posed this prompt to our MultipleSclerosis.net Facebook community: “You feel a flare coming on. What is the first thing you do?”

Continue reading →

Don’t Wait, Act Now!

Posted on May 26, 2021 by MSAA

By Doug Ankerman

There are things we are reminded to do on a regular basis.

Replace batteries in smoke alarm
Floss
Rotate tires

Some are to be done seasonally, others annually.

Change furnace filter
Swap baking soda in fridge
Have eye exam

And yet, others are on an “as needed” basis.

Cut toe nails
Vacuum inside car
Shave back

But what I ask is… “Why wait to make a change or a new beginning?”

Why wait till a new season? Till the new year? The next month? Or, even Monday?

Do it now. This moment. There’s nothing stopping you. Do something right now to improve your being. It doesn’t have to be huge. Drink water instead of soda. Eat a piece of fruit. Stretch your weary legs. Take a deep breath. Dance to music. Make a silly face.

My point is, don’t wait to begin anew. Certainly, our nemesis multiple sclerosis doesn’t wait around. It doesn’t wait for the following day, week or month to wreak havoc. Heck no, that bad boy changes constantly. So we must be willing to change with it.

A fresh start, or a new beginning can happen anytime YOU want it to. There is no need to put it off till the flip of a calendar. You can make a change right now. This very instant.

Replace car’s air filter
Have an MRI
Clean dryer vent

Okay, okay, I understand the importance of replacing batteries in one’s smoke alarm—but don’t put a timeline on improving yourself.

Get started right now. That other stuff can wait.

*When not shaving his back, Doug writes goofy stuff about MS and other topics on his humor blog at myoddsock.com

Hop to it, but a nap might be better

Posted on May 14, 2021 by MSAA

By Lauren Kovacs

Hop away from the old and hop to the new. It is always a good time to star anew, fresh air and new life. Leave to cold dead winter behind. Shed it like an old snake skin.

I know easier said than done. I face the “why bother” monster too. Spring feels magical. Embrace that magic. Before the suffocating, still summer heat, and bugs, enjoy the clean breeze and light air.

New beginnings don’t care where you plop them, but springtime seems to be good. Try a bit of exercise. Maybe some easy, gentle yoga? Maybe a few sit-ups. Maybe a pet is your new or perhaps something else. Organizing something to better suit your needs. Be open to anything being a new beginning.

A new hair cut is a refreshing way to mark a new beginning, even if it is crushed by fatigue. I think making plans is just as good as doing them. Trying is worthy for us. Daily unplanned obstacles are thrown at us, like an over filled water balloon.

I plan on getting some pink streaks in my hair this summer. If I can get it done, great. If not, no loss. I avoid appointments because I never know what MS will do. I am far from spontaneous and I hyper-plan. With MS, appointments often are commitments I avoid. MS requires flexibility. I am more set in stone, a “yes sir” kind of girl. MS is at odds with being raised a Navy brat.

So, plan your new beginning, but be flexible enough to change plans. MS is like chocolate in summer. Some days it melts on your hand and other days you have bad tremors and it melts in your hair. True story. Plan, but be flexible.

I like to see flexibility as plan B. Flexibility and spontaneity cause me anxiety. New beginnings are more like goals. I think any new good habit is a new beginning really. Self improvement is great. Self care is a great new beginning too.

Fresh flowers, for example, on my kitchen counter, all the time, was a new beginning for me. My allergies don’t really like it, but too bad. I enjoy fresh flowers, as my morning greeting. I just have tissues handy. New beginnings should be good. They may require a contingency or a strategy.

MS with Arm Weakness and Spasms

Posted on April 28, 2021 by MultipleSclerosis.net

For many people in the MultipleSclerosis.net community, Anita Williams’ article was a game-changer. Williams wrote openly and honestly about how this diagnosis affects her arms.

This is something that is not often talked about in the community. But it seems it should be. This article stirred the community, leading folks to realize they are not alone in facing this symptom.

To dive deeper into what this issue looks like for community members, we reached out on the MultipleSclerosis.net Facebook page. We asked, “Foot drop is a commonly discussed MS symptom, but what about arm drop?”

More than 400 people commented. Here is what was shared:

Understanding of the issue

An overwhelming number of folks with MS shared that they have arm spasms and lack of functioning in one or both arms. Many did not realize that other people with MS deal with this same problem. Several thought their arm problems were due to their physical jobs and not a result of MS. There is comfort in people knowing that they are not alone and in finding out the real cause.

“I completely understand this kind of pain and, before reading this article, felt I was alone. It is comforting to know that I am not.”

“For the longest time, I thought I knew no one with arm problems like mine.”

“I thought it was just me who dealt with trouble in my arm.”

Dropping things constantly

For many community members, this shows up as dropping things at unexpected times. Many with MS cannot trust themselves to hold anything – coffee, keys, or even a baby. Some have adjusted by buying things that can withstand being dropped, like protective cases for cell phones.

“I hate dropping things.”

“I have been using plastic dishes for a very long time. I drop things more and more.”

“I will never have a phone without an Otter box and insurance on it thanks to this.”

Dealing with limited functionality, especially when arms are overhead

This issue can affect someone with MS by making it difficult to raise their arms overhead for more than a few moments. This can make it a challenge to blow-dry hair or put away groceries. Some community members do chores in short bursts with lots of breaks so their arms do not get tired.

“I cannot raise my arm all the way up.”

“I get where my fingers get stuck and I cannot move them. It actually hurts I have to pry them apart with my other hand.”

“If I hold my arms up, they start feeling weak.”

Having the problem only on one side

Many who deal with these symptoms find that only 1 arm is affected. The good news is that this leaves 1 arm with full function. But this also means learning how to work with 1 reliable arm. Some learn to use their non-dominant arm, which takes some getting used to.

“I have learned to do most stuff left handed, except writing.”

“Happens with my right hand and arm. Most of my issues are on my right, dominant, side. I cannot keep track of how many cups of coffee I have spilled because it is ingrained into my brain to use my right hand.”

We want to say thank you to everyone who shared for this story. Thank you for being a part of this community and showing so much support for one another.

Stress Management with Chronic Illness

Posted on April 26, 2021 by MSAA

By Moyna John

It was November 2019, and my life was extremely challenging. I was struggling to find a balance between working and parenting my two-year-old toddler. I questioned myself at every turn. Being a first-time mother, I was very unsure of myself. Plus, I was still experiencing a case of post-partum depression. I was not handling all the stress well. Weeks later, I woke up with blurred vision in my right eye – this was the beginning of my symptoms. By the end of December 2019, I was diagnosed with multiple sclerosis (MS). I am sure that my high stress levels led to my initial MS symptoms.

Stress is something that everyone experiences. But managing a chronic illness can add even more. Unchecked stress can lead to various physical and mental symptoms. Some of these symptoms are chest pain, anxiety, headaches, depression, high blood pressure, and panic attacks. Stress management can provide healthier methods to cope with stress. Here are some stress management tips that I use.

Take care of your body.

You only get one body in this life; it’s essential to take care of it. Your body will give you signs when you are overly stressed. There are many different ways you can take care of yourself. Exercise is a great way to relax your mind and body—the endorphins from exercise can relieve stress and pain. I bought an exercise bike for my home. I try my best to exercise at least 30 minutes a day. Also, a well-balanced diet is another way to take care of yourself. Since my diagnosis of MS, I switched to a gluten-free diet. I have found that this diet has helped reduce my symptoms. Before making any changes, consult with your doctor first.

Relax your muscles.

I have noticed that my body gets taut when I am stressed. During overly stressed moments, I experience muscle spasms. One way I keep my muscles loose is through massages. COVID has prevented me from going to a spa to receive a massage. I purchased a massage gun, and it is a game-changer. It can be painful sometimes because of the intensity of the massage gun. Another quick way to relax your muscles is taking a hot shower/bath.

Grounding techniques.

According to Dr. Sarah Allen, “Grounding means to bring your focus to what is happening to you physically, either in your body or in your surroundings, instead of being trapped by the thoughts in your mind that are causing you to feel anxious.” My therapist recommended trying grounding techniques when I feel stressed or anxious. I have found these techniques to be very helpful for calming myself down. Here are the following techniques I do:

Deep breathing
Take a sip of cold water
Focus on listening to my surroundings
Recite lyrics to one of my favorite songs
Think about everything I am grateful for
Countdown backward from ten

Finding a hobby.

A hobby is an excellent way to occupy your mind. Find something that interests you or keeps your hands busy. My hobby is coloring; I have found a color by numbers app for my phone. Also, I purchased a paint by numbers kit that comes with an easel, paint, paintbrushes, and canvas. I think these kits are great because you get everything all in one; something to occupy the mind and hands and beautiful pictures that look lovely once completed.

Life is full of stressors, and chronic illness can only make it more challenging. Stress management strategies can help reduce stress-related symptoms and maintain a quality of life. Be mindful of taking care of your body through exercise and a well-balanced diet. Grounding techniques can be helpful for self-calming. Plus, finding a hobby can occupy your mind and keep you relaxed. Overall, stress can be detrimental to someone with a chronic illness. Remember to keep your health a priority!

*Moyna John is a multiple sclerosis advocate and freelance blogger. She is passionate about adding representation within the MS community, creating space for Black MS warriors, and empowering modern women to live a purposeful lifestyle outside of chronic illness. Visit her website or follow Moyna on Instagram.

Relaxing Method: 4-7-8

Posted on April 21, 2021 by MSAA

By Doug Ankerman

Trying NOT to sound like an infomercial, snake oil, salad shooting pitchman BUUUUUT here’s the easiest, cheapest and most relaxing method to melt stress and ease pain while clearing your head.

No more warming oversized beanbags in a microwave.

No more soaking in the tub till you’re a giant prune.

And no more oily and expensive massage sessions.

Yes, this stress reliever is no mess. Can be done anywhere at YOUR convenience. And is absolutely free. You heard right…FREE!

What is this life-changing, stress-reducing procedure, you ask?

It’s breathing! Breathing to a count of 4-7-8, in particular.

What’s 4-7-8, you ask? (You ask a lot of questions!)

Well, 4-7-8, beside being my locker number in junior high, is a simple, deep breathing technique that helps restore energy, focus… and sanity in this cray-cray world.

Let’s break it down so you can learn to breathe the 4-7-8 way…

FOUR

Begin by inhaling through your nose to a slooooww count of four. One…. Two…. Three…. Four. Make it a deep, belly-expanding breath. Filling your lungs to max capacity with fresh air.

SEVEN

Next, hold that glorious breath for a seven count. One, two, three, four, five, six, seven.

EIGHT

Finally, exhale through your mouth as you slowly count to eight. Tighten your belly, squeezing out as much stale, old air as possible.

Repeat the compete cycle again. Inhaling through your nose to a slow count of four. Hold the fresh air for seven. Before slowly exhaling through your mouth for an eight count.

Do the 4-7-8 cycle several times as you focus on slowly inhaling, a relaxed hold, followed by a slow, controlled exhale through your mouth.

I like to breathe 4-7-8 when first waking up. Breathing fresh air deep into every cell gets your body ready to rise and shine. Likewise, a few 4-7-8’s before bedtime releases the day’s stress and preps your mind and body for a restful night’s snooze.

The 4-7-8 breathing technique can be done anytime! Anywhere! At your convenience! Whenever you feel stressed. At work. At home. Even at the in-laws!

Melt stress today…. with 4-7-8!

4-7-8 is yours, absolutely free, but I feel no shame in accepting credit or even a donation!

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

Stress Management, Resilience Skills, Time to Shine

Posted on April 16, 2021 by MSAA

By Stacie Prada

Stress isn’t inherently bad, but it feels awful when it causes suffering. Stressful moments are usually only upsetting when my go-to skills aren’t cutting it to skip feelings of tension and anxiety. I’m feeling pushed to do more than I can do, I’m feeling pressured to respond more quickly than I’d like, or I’m interacting with someone who is using bullying tactics.

When something triggers stress in me, it feels more empowering to think of it as a chance to flex my resilience skills than to say I’m managing my stress. It subtly shifts my perspective from feeling like a victim needing to suppress my natural responses to being an active participant and even champion in the outcome. Managing stress may not have the same connotations for everyone, but to me it feels like a compromise.

If I think of stress as bad and my body saying I’m failing or bad at dealing with things, it sabotages my ability to get through the moment with self-control and grace. Instead, I’m aiming to notice stress as my body telling me it’s ready to really perform at peak level. It’s alert, energized and capable. It’s ready to shine.

My mantra this week is, “Breathe, focus, and shine.” I say it to myself as I leave home in the morning. I remind myself to take a moment, consider the situation, and choose the best path forward. I’ve been working to remember in stressful moments that I can slow down and behave deliberately. Respond instead of react. Remember I have options, and I am choosing my behavior. I’m not obligated to a specific reaction.

Stress makes everything feel urgent, but that’s exactly when I need to set my own pace. When it’s a person testing my resilience skills, I need to listen more, ask a question, listen again. Slow the tempo of my dialogue and know that listening to a person who is mad doesn’t mean I’m disconnecting or agreeing with them. Let them experience their emotions without feeling obligated to join them on their roller coaster of frustration, anger, or abuse.

In everyday behavior, I can proactively live a life that nurtures my body and builds resilience for navigating stressful moments when they arise. Have fun, live with purpose and know I have value in this world. I can nourish my whole self with good nutrition, movement, self-reflection and connection with others. Network with colleagues, teammates, friends and mentors who can give perspective and suggestions. Connect with people who experience similar life stressors and can share their approach and successes.

I want to react to stress by pausing and asking myself this:
If I was the most skilled person in the world to deal with this, what would I do?

It doesn’t matter if I am the best person in the world to deal with it or not, because I am the one dealing with this. It might mean I just need to take a momentary breath to think it through. I might need to take a longer break and come back to it another time with a fresh mind. Maybe I should contact someone I know who could help me with it. I might literally be the worst person in the world to deal with this, but thinking about what the best person would do will help me figure it out. It can be my time to shine.

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