Playing the Cards I’m Dealt

By Stacie Prada

I love the emotional and intellectual sides of aging. With each decade, I grow more certain about who I am, what matters to me, and where my strengths lie. I worry less about pleasing others and more about doing what’s right for my physical and mental health. Without multiple sclerosis, I likely would have enjoyed this aspect of aging, but I believe having MS accelerated my drive to live a life I love and feel good about myself.

I thought some things were non-negotiable while I was pre-diagnosis and in peak physical health. Post MS diagnosis, those same things were reconsidered and proved to be negotiable. With diagnosis, my body’s confusing aspects had an explanation, and I could no longer dismiss them when they appeared. Work and the expectations people placed on me were no longer the highest priorities. Rest, sleep and personal fulfillment earned positions of power that would affect choices and influence decisions. For me, this was helpful and necessary.

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Staying Busy

By Lauren Kovacs

I must say this is easier said than done. 

I am kinda bored actually. I am a homebody, but even I have limits. MS has aged me, too.

I mean, I have always liked birds, but watching them used to bore me. Now I can watch them up close. It is like watching a fight club with feathers. Male Cardinals and Blue Jays are jerks. Bullies. I can watch a soap opera right outside the window. 

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Short Days, Dark Nights, and Big Hopes

By Stacie Prada

Each winter, darkness pervades my free time. Living in the Pacific Northwest, daylight hours seem to only exist on weekends and during lunch on weekdays. Dry, sunny days are less frequent, and spending time outside requires dressing for wind, rain and cold. While invigorating to experience, inclement weather provides encouragement to stay inside and find comfort from the elements.

It takes more creativity and effort to be active when the environment encourages spending time indoors. The draw of the sofa and screen time is compelling and comforting. I can justify that time and accurately describe it as productive by using it to rest, connect with others, learn, create, reflect and amuse myself. All are valid uses of time, and they only lack fulfillment if they sabotage my needs or goals. Usually the challenge is not the use of time but the amount of time spent on them.

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Community Views: An Accurate MS Commercial

Are they for real?! Most multiple sclerosis (MS) commercials feel completely disconnected from your experiences of living with the condition.

We wondered how you would improve them, so we turned to MultipleSclerosis.net and asked community members to get creative! We asked our community to fill in the blank: “If you directed a commercial about MS, it would include ___.” 

With more than 300 comments, they had some great ideas! 

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Tell Us You Have MS Without Telling Us You Have MS

Sometimes, explaining multiple sclerosis (MS) to people who are unfamiliar with the condition is frustrating. The clinical definition does not fully capture the reality.

Finding Solidarity (& Humor) with the MS Community

The trend “Tell us without telling us,” or “tell me without telling me” asks people to share how they match a set of criteria or are part of a group without explicitly stating it. This trend allows people to make pointed statements that play with stereotypes, define characteristics, and share inside jokes – that includes those living with multiple sclerosis.

When we recently asked community members on the MultipleSclerosis.net Facebook page: “Tell us you have MS without saying you have MS,” the responses were amazing. This prompt struck a chord. With more than 1,000 responses, the creativity of the community certainly presented itself!

You are all too familiar with falling and tripping

Falling is a way of life with MS. Your balance and spatial awareness become compromised. You can trip over the slightest thing or nothing at all!

  • “The walls keep jumping in front of me, and the floor has bumps in it.”
  • “Ghost holes … watch out for them. They show up unexpectedly outside and even in your kitchen. The hole was there when I tripped then … abracadabra… it’s gone, and my new seat is on the floor.”
  • “I do all my own stunts – my random gravity checks are dedicated to science, not just spasticity.”
  • “Oh look … air … let’s just trip over it.”

Brain fog is the norm

Living with MS causes your brain to feel muddled. You forget words. You say the wrong word in place of what you want. Dates, tasks, names, or passwords that you have known forever suddenly vanish from your memory.

  • “I’d say what I’m thinking if I knew what it was.”
  • “In my head, it sounded right, but when the words came out, they were backwards.”
  • “Wait, what was I answering?”
  • “Would anyone care for some of my ‘Word Salad?’”

Everyday tasks are completely draining

“Exhaustion” does not begin to cover the depth of fatigue MS brings to your life. Formerly simple tasks wear you out for hours, if not the entire day. You find yourself needing lots of rest.

  • “I don’t have the energy to get off the couch to go to bed.”
  • “‘Good morning. Time for a shower and enjoy this beautiful day.’ Exits shower. ‘I’ll just sit down for a few.’ Cue the snoring.”
  • “Some days, I’m too tired to chew my food.”
  • “I put fresh sheets on the bed, and now I need a nap.”

Heat makes you miserable

With MS, you run warm. You feel hot and sweaty when others are cold. Hot weather makes the symptoms worse. Trying to keep your body temperature comfortable requires much effort.

  • “The thermostat sits at 68, and I’m in shorts; the rest are bundled up.”
  • “I take a shower just to get really hot and sweaty even after a cold shower.”
  • “I’m hot. It’s hot in here. It isn’t? Oh well, I’m hot!”
  • “Cancel our plans. The temperature is over 73 degrees.”

The MS hug is real

Most people living with MS are familiar with the MS hug. It feels like a tight squeeze around your chest. It comes on out of nowhere and is extremely painful.

  • “Want a hug? No? Me neither, but I got one today anyway.”
  • “Feels as if someone is lifting me off the ground and squeezing my middle chest section.”
  • “I feel like I’m being ‘hugged’ by a boa constrictor.”
  • “There’s this hug I would gladly do without.”

You spend lots of time in the bathroom

The regular need for the toilet is part of your life with MS. You experience incontinence. Leaving home requires forethought and planning around your bathroom needs.

  • “I pee myself daily.”
  • “I can tell you where all the nearest restrooms are within seconds of entering a building.”
  • “Excuse me, I need to go to the bathro …Oops. Nevermind. I’m just going to go change.”
  • Where is the bathroom?

Your calendar is filled with MRI appointments

Living with MS means frequent MRIs to monitor lesions. Comfortable or uncomfortable, the tube becomes familiar. Your image results look dramatic.

  • “My brain lights up like a Christmas tree on an MRI.”
  • “Looking at my MRI images is like looking out of a plane window when flying over a city at night.”
  • So, I had an MRI last week …”

Thank you!

While all of this is a comical and light approach to what life with multiple sclerosis can entail, we know there is so much more. We’d like to thank those with MS for sharing wonderful insights into life with a chronic condition. We appreciate the honesty and such willingness to share.

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Intentional and Collaborative Planning

By Stacie Prada

It’s typical to ask “What do you want to do today?” I’ve had richer conversations and better success asking, “What are your goals for the day? What would make today successful for you?”

It helps shift the conversation from specific decisions to a discussion about attributes that matter to each person. It might feel a little goofy or too structured, but I promise it contributes to relationships of respect and understanding with people who mean well and care. 

During the holiday season, it’s even more worthwhile to be clear about what matters to each of us. Holidays bring out heightened emotions and expectations for how to celebrate. Keeping traditions and doing what we’ve always done isn’t always possible or wise anymore. Whatever the reason, it’s worth introspection and discussion to adapt.

Collaborative Planning

What are your goals for the day, the weekend, the month or the holiday season? 

I try to ask these questions of myself and those I’ll spend time with.  When I know what I need to get done, what I want to do and what the minimum is that I hope to do, I can be realistic about what will meet my needs.

When I share my answer with others, they help me make it happen. When they share with me what they’d like, I factor their needs and preferences into plans. Usually our desires are compatible, and meeting everyone’s needs is doable. When we’re on the same team and plan collaboratively, we often come up with better and more fulfilling plans than if we’d left decision-making to one person.

Everyone has different desires, and each decision has different implications. A solution to one barrier might create other problems or eliminate something important to someone else. 

What’s important? What’s the essence of what would make it successful?

Knowing this helps shape decision making. We can collaborate on plans and understand what we’re trying to accomplish for each person involved.

If you don’t know what you want, you’re unlikely to get it or know you got it. If you don’t share what you want, you’re leaving everyone guessing and unlikely to make decisions that will meet your needs.

I have a friend who shared they get frustrated when they plan holidays and vacations with everyone in mind, but no one asks what they want. They understandably feel unappreciated. It’s not easy advocating for our needs, and often friends and family forget to ask. Proactively asking everyone what they want or need allows everyone to share in the conversation and decision-making. It also helps make decisions when things don’t go as planned. Everyone can contribute to problem-solving, because they know in advance what attributes are important to each person.

There are some who might not cooperate. Anyone sabotaging plans or dismissing another’s needs must be dealt with or avoided. If that’s an issue, find an ally who can reinforce or champion your wishes along with those of the rest of the people in the group. If that’s not possible, one-on-one counseling may be needed to navigate the specific situation or relationship.

In good relationships, sharing needs and limitations leads partners, family and friends to advocate for each other. Being self-aware, forthcoming and curious cultivates healthy bonds and boundaries. Being intentional with planning and collaborating with everyone involved is an opportunity to learn about each other, accommodate needs and appreciate our uniqueness.

*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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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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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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MS with Arm Weakness and Spasms

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.

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