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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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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Don’t Wait, Act Now!

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

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New Beginnings

By Stacie Prada

Spring holds top honors
as the season of new beginnings
for new growth, budding blooms and wildlife births.
Spring marks the end of winter,
although they often overlap
in their weather shift competition.

January 1st rivals spring for a new beginning point
as the first day of the first month,
and it too may garner significance
for its relationship to
the last day of the prior year.

Waking marks the beginning of the day
and end of overnight slumber.
A new friendship,
a health diagnosis,
a life without someone
exist in cognition as before and after
a moment.

All are endings and beginnings.

Moments in time often pass
without anticipation or awareness
until later upon reflection and applied significance.
Detecting these turning points in real time
is infrequent
not for lack of effort
but for the constant stream of beginnings and endings.

Noticing and assigning purpose
elevates common moments.

Foreseen, by happenstance, or noticed in hindsight,
each ending lays foundation for a new beginning.

*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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Hop to it, but a nap might be better

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.

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Stress Management with Chronic Illness

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:

  1. Deep breathing
  2. Take a sip of cold water
  3. Focus on listening to my surroundings
  4. Recite lyrics to one of my favorite songs 
  5. Think about everything I am grateful for
  6. 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.

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Relaxing Method: 4-7-8

By Doug Ankerman

4-7-8 relaxing method of breathing

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.

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