You Know You Have MS When . . .

The day you receive a multiple sclerosis (MS) diagnosis can feel surreal. It is common to be in denial and want to ignore it. But over time, you start to see that your symptoms match what the doctor explained would happen.

For most people, there is a moment when they cannot deny their symptoms or their diagnosis anymore. And life goes on.

To find out more about what that moment looks like, we turned to the MultipleSclerosis.net Facebook page. We asked the community to fill in the blank: “You know you have MS when _____________.”

More than 250 people in the community responded. Here is what they said.

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Ask the Expert – Numbness and MS

Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Headshot of doctor Barry Hendin, chief medical officer for MSAA

Question: Does new or increased numbness indicate a worsening of MS, and is this symptom typically permanent, or can it subside on its own?

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Balancing Whimsy and Invisible Forces

By Stacie Prada

Art that resonates with me changes depending on where I am in my life, how I’m feeling, and what I’m facing. Some things I loved at certain points in my life I love because they spoke to me at that time. I think if I were to first see some of them today, I would not connect in the same way as I did back then. I have some pieces that spoke to me during dark times that I chose to let go when times changed and they no longer brought me solace.  Others have endured through life changes and still resonate.

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Art perception

What is it about artwork that catches our attention? Is it the colors? Or maybe the artist’s story. As an art newbie, I don’t have knowledge of the proper technical skills or techniques. I don’t know what makes a piece of art great. I have minimal understanding of the intricacies of painting, but what I do know is how it makes me feel.

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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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