My Inner Cheerleader

“The reward of a thing well done is having done it.” 

~Ralph Waldo Emerson

Sure, Ralph. Sometimes, having something done well is enough. It’s a relief to have it off the to-do list. It’s not nagging at me, and I’m not stressing about doing it anymore.

But sometimes I still need acknowledgment for my hard work. A quiet nod or smile to myself in recognition: a star or smiley face drawn in my journal.

A lot of living with Multiple Sclerosis for me is invisible, and the effort it takes to prevent or delay physical decline is huge.

Fatigue and spasticity are constant companions, yet no one else sees them. Perhaps thinking of having my inner cheerleader join us could help. She can help motivate me when I need a nudge and celebrate my efforts.

Yesterday, I used calf massagers, I stretched, hydrated, took my supplements and medications, and I went for a walk. These are all efforts to offset spasticity in my legs and try to maintain longer-term mobility and flexibility. They take time and effort, and they help. They don’t rid me of pain, though. And none of these efforts are monumental or worth shouting from the rooftops.

Bring in my inner cheerleader.

Great job, Stacie! You’re doing great! Way to do the hard stuff when you’re tired, and you don’t feel like it! You can do this!

Fatigue and spasticity, I didn’t invite you. You’re here, and you’re clearly staying. I’m bringing in a new friend to this group. Cheerleader, welcome to the party!

Singing for Wellness

Last year, my naturopath suggested I take deep breaths each day, and I agreed it would be good for me. I approached it like a prescription and made sure to do it. I followed guided meditations, and they were fine. I’d set a timer and count deep breaths in and out to meet the goal. It seemed good for me, but I didn’t love it or look forward to it.

Then I had an “aha moment.” I’ve long wanted to improve my singing, and I realized I could make progress with singing AND practice breathwork in a way I’d enjoy.

My inspiration was a music app. It would allow me to do breathwork and improve my musical knowledge and skills.  Most importantly, it could be fun. I’ve now been doing singing lessons for a few minutes each day for 22 weeks. Because I want to keep my streak, I make sure I do it every day. I love that it’s a bite-sized daily commitment, and it’s doable.

My ambition isn’t to be great. I want to learn, improve, and silence the voice in my head saying I’m awful at singing.

I also know that for me, breathwork isn’t just a good idea. I need it to offset my overactive mind, and it’s helpful to monitor how my MS symptoms are behaving.

During a difficult time some years ago, when stress was extremely high and MS symptoms were acting up, I realized my lung capacity and throat muscles weren’t operating as usual.

It took multiple and focused efforts to blow out a candle wick. I couldn’t blow up a balloon. I didn’t have enough breath to sing through some of the longer notes and verses of favorite songs. Swallowing pills was harder. They wouldn’t always go down, and it took more effort and patience to take my daily supplements. None of these things had been a problem before.

MS can hinder any ability that relies on the central nervous system. Any means of improving plasticity and creating new pathways is extra helpful.

I’m trying to improve in a lot of areas where I know MS makes me vulnerable.  My hope is to learn new skills, get stronger, and become more resilient when facing challenges. I aim to allow more room for aging and for losing abilities, so I can live as well as I can for as long as possible. It can sound depressing, and that’s why it’s even more important to me to have fun while I put effort into it.

Singing daily is making me happy, and it's
just one habit that improves my wellness now and hopefully for years to come.

Bittersweet Advocacy

I’m proud to advocate on behalf of Multiple Sclerosis issues, and I aim to normalize discussing human health experiences without shame. If we live long enough, almost all of us will experience big health issues, and learning from others is a huge help for navigating them.

I’ve participated in Bike MS, Meat Fight, Walk MS, and self-help group leadership. I write openly about my MS experience, I contribute regularly to MSAA’s blog MS Conversations, and I let my community, colleagues, and legislators know that I have MS. I’m happy to answer questions and have spoken to newly diagnosed people and family members quite a few times over the years. If I’m the only person they know with MS and they would like to chat, I’m there for them. They’ll have a unique MS experience, and I want to support them in their journey. I’m eager to encourage kinship, help where I can, and remove any cloak of shame regarding health issues.

That said... sometimes I get uncomfortable. When it feels like it’s putting me in a poster child position, I get emotional. Those are the moments when I am sad that I have MS and live a life where I have to deal with it daily.

While riding the Bike MS victory lap that celebrates and honors those of us with MS, I was proud to be there supporting the cause. I’m immensely grateful I’m doing well and can participate as an example of people living well with MS. I also got very anxious before the ride. People were looking at me, and they were cheering me on. Their kindness spurred a counterintuitive response in me.

My emotions went into overdrive with a mix of opposing feelings. I held back tears as I processed my feelings and tried to understand why it felt different from other advocacy efforts.  

Sure, I felt like I was on display, which can be discomforting, but I don’t think that was it. I think it was because I recognized the magnitude of what participating means to me. I was overwhelmed, feeling simultaneous pride for participating in a cause I support greatly and sorrow for personally needing MS-focused philanthropy to give me hope.

Just reading this last sentence aloud while reviewing and editing this post makes me emotional. MS-focused philanthropy gives me hope, and I’m sad I need it.

At the event, I was glad to participate in the ride and relieved when it was over. I liked being back among everyone supporting the cause and blending into the crowd again.

Friends with MS have expressed their happiness with how well I’m doing and have told me they appreciate my advocacy efforts. One dear friend and mentor who’d lived with MS for at least 20 years longer than I had lovingly called me a poster child for MS. She saw my efforts as giving hope and representing the cause well, and I greatly appreciate that.  I know my health is due to hard work and a lot of luck, and I hope to encourage and support others in any way I can. I also aim to learn and grow from every other person with MS I encounter.

I wasn’t unnerved when she used the term "poster child," because it was a one-on-one conversation, and I felt the love and admiration she exuded as she said it. I was honored to hold her regard, given how much she had comforted and inspired me through the years.

I’ve been living with MS and advocating for MS issues since 2008, and how I participate varies. I wish I could do more, but I consistently contribute in ways that align with my interests, abilities, energy level, and time available. There are plenty of ways to advocate, and it makes me feel good to give back to a community that has helped me so much. It’s bittersweet advocacy.

Vision & Values

I created a vision board years ago that included images of women doing yoga poses I couldn’t do. I attended yoga classes weekly, and I loved how it combined calming breath work with some of the gymnastics, athleticism, and flexibility that my Multiple Sclerosis issues had curtailed.

I placed the collage vision board near my makeup vanity, and I didn’t put a lot of effort into tracking it. About a year later, I looked up, and I was startled to realize I could do all the poses on my vision board! Without realizing it, I slowly worked my way toward poses that seemed completely out of reach a year prior. Dancer, feathered peacock, and crane pose had become regular movements in my yoga practice without any periodic notice or celebration. With this realization, my glee absolutely overflowed.

Looking back, I think about how dreaming and acknowledging my aspirations, combined with regularly showing up to yoga class, were the key. They helped me achieve things I hadn’t been convinced I would ever do. 

While it sounds like it was simple and potentially easy, it took a lot of juggling to make sure I made it to class each week. The competing demands of adulting made it hard to do something that seemed like it only benefited my physical health and ego. It cost money that could have gone to savings or other things. There were always more demands at work and home. MS fatigue reared up often, and the desire to do nothing was enticing. It was emotionally taxing to repeatedly choose to make yoga class a priority. Work and other people were always wanting more, and my body never seemed to get enough rest. Those were the days I intentionally evolved from always putting work first to balancing it with my personal well-being. 

Since my MS diagnosis 18 years ago, I’ve become firm in my resolve to put health as a high priority. I’ve made progress, yet I still find myself having internal debates.  I’ll assume judgment from others and mentally prepare detailed justifications for putting my emotional and physical health before work, relationships, and other commitments. I know I’m replaying perspectives from my youth. I learned that work ethic was the highest goal, and sacrifice was admirable. Let me be clear, no one else is saying any of this to me. I pre-empt any questions or conversation by providing my reasoning. I’ll explain why I’m making a choice that doesn’t align with work first, family second, everything else except me third, and personal needs last. While my reasons are potentially unnecessary for the people I’m telling, it’s good for me to say them out loud. I also reason that it’s good to model healthy behaviors and encourage others who wrestle with this issue. 

Inconvenience reveals our values. I want colleagues, friends, family, and everyone to monitor their health and say no when needed. Sure, it takes surging efforts and problem-solving skills to figure out how to navigate unforeseen absences or changes in plans. Yet I always want people to be where they need to be when they need to be there.  

I think being responsible shouldn’t be defined as always sticking to a plan. It’s having backup plans, sharing knowledge, building teamwork, preparing others to be able to get by, and helping out when others need it, if plans have to change. It’s knowing when it’s time to shift plans as a group effort to accommodate the well-being of ourselves and others. Our collective health and happiness rely on each of us to incorporate and accommodate our individual needs where possible. 

Taking time to dream of what can be, in any aspect of life, is a great first step toward achieving better things. Envisioning what’s possible and living our values makes for a path worth traveling. 

Holiday Wellness Bingo Card

Each year, the holiday season is a time of increased tasks, deadlines, and obligations. It can be stressful doing everything I need to do and want to do. Add managing my health issues with Multiple Sclerosis, and it can get overwhelming. I’d love it if the satisfaction of nurturing my health and sanity was enough to maintain healthy habits as its own reward, but it hasn’t been. Temptation abounds, and denying myself can feel punishing at times. I strive to enjoy both in healthy doses.

Over the years, I’ve trimmed down and streamlined seasonal tasks to reduce effort and stress. This year, I want to infuse fun with a Bingo card. By choosing items that support my personal goals and having a deadline to complete them, I’ll be more likely to do them.

My goals are to encourage nutrition, physical fitness, connection, non-phone related activities, pampering, and things that reduce stress and MS symptoms. Some items are a one-and-done, while others involve creating routines.

In choosing them, I made sure to include a frequency that might be challenging for me but doable. I recognize that doing something every day is tough to accomplish, but three to five days per week allows for progress and success. Building in flexibility is especially helpful when my schedule is disrupted or I’m not feeling great. I’m more likely to meet or exceed my goals with a lower threshold than I am to keep doing it if I’ve failed after aiming for perfection.

I’ve decided to allow more than two months for this Bingo card, because it’s often hard to do something in 30 days within the confines of a single month. If I span months, I’m much more likely to be successful. It also allows me to bridge this year into next, since having a deadline of New Year’s Day can get stressful.  I want to be successful with this, not create more stress.  

MS spasticity has been increasing for me lately, and it’s a priority for me to do more now. It’s a frustrating MS symptom that causes my calf muscles to stiffen and hurt. Spasticity is when nerves fire messages more than is normal, and it can cause muscles to live in a constant state of tension. That stress on the muscles can seem like an easy way to build muscles, but it’s not. It reduces muscle flexibility, which is imperative for long-term well-being and mobility. Medication isn’t doing enough to prevent it for me, but stretching, massage, hydration, and magnesium oil help. I’d like to combat it better, so I’ve included a few things in my Bingo card that should help.  One is stretching multiple times throughout the day. I’ve chosen to use my watch’s hourly reminder to stand as a reminder to stretch. Another tactic is to massage my legs throughout the week. It’s not pleasant for me, since it means massaging areas that hurt and are painful when touched. My hope is to reduce tightness from spasticity and ultimately minimize my reluctance and pain.

The 25 squares I’ve chosen to include in my Holiday Wellness Bingo card are:

1. Bingo Center Square: Make a bingo card and get credit with the center square

2. Stretch calves average 6x per day 30 days.

3. Massage legs 4x per week for 30 days

4. Drink 8 glasses of water per day for 30 days.

5. Drink Veggie & Fruit smoothies 4x per week for 30 days.

6. Make a large pot of stew and put half of it in the freezer for future meals.

7. Create a calendar with key dates & commitments: I created a calendar that spans November through the middle of January so that I can get a feel for how much time there is. I’m including deadlines for shipping gifts and sending cards, as well as putting up decorations, gatherings to attend, and other commitments.

8. Write a letter.

9. Reconnect with an old friend.

10. Submit medical expenses for insurance reimbursement: I need to do this, I’m avoiding it, and I’m more likely to get it done if I get credit on my Bingo card!

11. Track gift expenses: This is good for financial management.

12. Bake something: This will encourage me to make time for this. While I like baking, it tends to be one of the first optional things that gets cut when I’m busy.

13. Take a beach walk: This will help me slow down, enjoy the outdoors, and improve my physical and mental health.

14. Read a book (or listen to an audiobook): This will help me expand my focus and provide a break from daily stress.

15. Dry brush & cold-water blast 5x per week – These improve circulation, and they’re good for general health. Gently dry brushing before a shower helps with exfoliation, circulation, and pampering. I’m not likely to do a cold plunge, but a quick blast of cold water at the end of a shower feels like a decent substitute.

16. Moisturize full body 3x per week – This is pampering, and it’s a good opportunity to use magnesium oil to help combat spasticity.

17. Mani/Pedi: While I’m good with keeping a manicure, pedicures tend to get missed during the winter months. This will be a nice pampering effort.

18. Listen to two MS Focus podcasts – I always appreciate them, but I often listen to news or fluff. Continuing to learn what’s new in MS developments and hearing other perspectives help me stay motivated and informed.

19. Purge and donate clothes – Some clothing, costume jewelry, and shoes aren’t getting worn or don’t work for me anymore. Someone else could use them, and I can use the space.

20. Grant myself grace: This is one I could use all the time. Putting it in the Bingo card is intended to help me remember.

21. Make three mocktail recipes: This is an attempt to add a feeling of pampering myself in a healthy way and practicing moderation when the holiday season encourages more frequent alcohol temptations.

22. Make three fruit-based healthy desserts: This is intended to inspire creativity and fulfillment when a lot of treats are not nutritious.

23. Journal 4 things per week that were new to me or inspired me: People are amazing, and being open to new perspectives is exciting for me. Writing them down will be a great way to review them later.

24. Strength training 12x in 30 days: Getting stronger is recommended for all of us as we age. It’s easy for me to let it slide. Setting this goal will keep me motivated.

25. Take lunch breaks @ work 16x in 30 days: I often work through lunch, and setting this goal will be a tough one for me to meet. I’m ready to try, though!

While this card is unique to my challenges and goals, I hope it spurs ideas for what would be good for you. If you make a Bingo Card for yourself and you’re willing to share, I’d love to know what you include!

Creative Thinking & Well-Being

Being creative is generally accepted as a desirable trait, and the science supports it helps our well-being. When we look at our health physically, it’s often using objective measurements, lab test results, and diagnostic imaging.  They provide numerical measurements and data to compare ourselves to a healthy range for most people.

To capture emotional well-being, we use more subjective measurements that consider mood, worry, stress, happiness, and level of confidence we feel about managing our health.  

 

Sometimes lab results explain why we’re experiencing certain health challenges, and sometimes they don’t. Without test results that validate our health issues, there might not be a specific medical treatment to help. It’s those situations where working on our emotional well-being might be the only thing we can do to cope.  

 

I was heartened to learn that studies provide support for how much creativity helps subjective well-being. One study, “Being Creative Makes You Happier: The Positive Effect of Creativity on Subjective Well-Being,”¹ describes how a sense of well-being promotes creativity, and creativity is conducive to well-being. The more creative we are, the more satisfied with our well-being we become. And the better our well-being seems to us, the more creative we tend to be.  

 

It’s a chicken and egg scenario, and I like learning that creativity is not frivolous. It’s good for overall health!

 

Creativity can be considering unusual solutions in everyday situations.  I didn’t have a rolling pin for a pie crust, so I used a cocktail shaker. My brand-new manicure chipped at the tips of a couple nails. A quick brush of an accent color on those nails and the same on the other hand fixed the chips and made the manicure look like an intentional design choice. I love being creative with leftover food and turning it into a new gourmet dish. I take pride in being able to create delicious meals when someone else looks in the kitchen and thinks there’s “nothing to eat.”

 

Living with Multiple Sclerosis can lead to more sobering problem-solving opportunities. I spend a lot of time looking for ways to improve my health in hopes of slowing disease progression and managing symptoms. It can be frustrating and annoying. I find I’m happier when I approach problem solving with creativity. Medical providers might suggest certain exercises or lifestyle changes. If I don’t like what they suggest, can I find alternatives that would accomplish the same things in a way more pleasing for me? 

 

Anything involving self-expression is a creative endeavor. Hair style and color, makeup, clothing choices, nail polish, jewelry, and eye glasses have tons of options. Having fun with them can be a fairly low risk commitment. When MS leads to needing to change shoe preferences or other accommodations, are there styles or ways to customize them and reflect my personality and style? 

 

People often say they can’t draw or they’re not artistic. I would challenge them to rethink the purpose of art. It’s not all about the end result. Doodling, coloring, drawing, painting, and assembling collages can be enjoyable no matter the level of skill. Paint & sip gatherings are fun for the experience, and you can modify yours however you’d like. Participating with the sole expectation of having fun allows creativity to flow. You might surprise yourself. If you don’t like it, you can paint over it. If you think it’s a masterpiece, enjoy it!

 

If visual arts like painting, sculpture and photography aren’t interesting to you, consider writing, humor, or music. Anything that expands skills and stimulates different perspectives promotes creativity. Creativity promotes well-being, and who couldn’t use more of that?

 

1.   Tan, Cher-Yi, Chun-Qian Chuah, Shwu-Ting Lee, and Chee-Seng Tan. “Being Creative Makes You Happier: The Positive Effect of Creativity on Subjective Well-Being.” International Journal of Environmental Research and Public Health 18, no. 14 (July 6, 2021): 7244. https://doi.org/10.3390/ijerph18147244.

Establishing Safety Nets

Back-up plans and safety nets ease my worries. If I know I have options and support, my stresses for the future can be put on the back burner. 

Which safety nets do I have control over? Which are vulnerable and might not be reliable? How strong are my safety nets, and where are the gaps? 

There are safety nets for daily needs and long-term needs. They’re useful for health care, housing, finances, friendship, physical health, and mental well-being. 

Safety nets aren’t just for taking care of my needs; they’re also for taking care of the people and things relying on me. With colleagues, I share what I know and how I navigate issues. The more they know, the better they are for having backup plans if I’m not available temporarily or permanently. Mentoring and sharing help reduce stress for things I do with them and for them, and it helps all of us relax. 

When I was diagnosed with MS at almost 38 years old, I feared MS progression would make me unable to work, compromise my health insurance, and lead to immense difficulty surviving. The statistics said I would likely need mobility aids within ten years. Suggestions were to have a single-level home by the age of 55.

The nature of my MS lesions, the frequency of my MS exacerbations, and fear of the unknown led me to believe it was very likely I’d have difficulty walking as my MS progressed. 

That was 17 years ago. I’m nearing 55 years old, I work full time in a job that is the highest level of my career, and I live in a home with stairs that isn’t easily conducive to needing a mobility aid.  MS symptoms take effort to manage, but I still have full mobility.

I’ve decided in life to plan for the range of possibilities, but I don’t want to skip phases out of fear. That said, I do have vague backup plans. If tomorrow I woke up unable to walk independently, I could have a chair lift installed on the stairs pretty quickly. I have people who would be willing to help. 

When I was younger, I had a car with a manual transmission, and I could navigate the stick shift just fine. Then I hurt my Achilles, and recovery meant I had to keep off that foot.  I navigated work, home, and shopping on foot using crutches and a knee scooter.  I couldn’t drive my car anymore. Fortunately, I had access to a car with an automatic transmission, and I could still get to work. While it was a huge inconvenience, it was doable. It was temporary, but it was a terrific learning lesson for how much of my life relies on my mobility and energy level. Just hopping from the coffee maker to the sink, coffee beans, and mugs in different areas of the kitchen showed me how much walking my morning coffee routine required. 

I think about my routines with this in mind. Can I keep things together and reduce effort? How would I change things today if I knew I couldn’t walk tomorrow?

I’d have options and support for short-term accommodations, and I have options for adapting to long-term needs. Regularly monitoring how I’m doing will help me decide if and when I need to make a change at some point. 

Financial safety nets vary widely and depend on each person’s needs. 

One safety net I wish I’d set up is a long-term care insurance plan. Medicare doesn’t cover long-term care, but Medicaid does. To access Medicaid, a person needs to meet strict financial income and asset requirements. People I’ve known who had long-term care insurance were able to move to places where their needs could be met without a significant financial burden. 

I looked into it a few times, and the cost for me to get long-term care insurance now would be really expensive. Since I’ve already been diagnosed with a chronic illness, it would be tough to afford. If you don’t have a diagnosis yet and you’re able to access a long-term care plan, know that I regret not getting it. It would have been a safety net that hopefully I’ll never need, but it would have reduced the stress of planning for my future.

I’m grateful for the career change I made at age 30. I started a job where the paycheck required me to contribute to a retirement plan in addition to Social Security contributions. That requirement helped me establish a safety net that is still growing. Social security payments at full retirement age don’t come close to what I make working full time. Forced retirement plan contributions have allowed me to have the safety net of an income when I’m older that will cover my living expenses. 

Another safety net I’m working to create is covering expenses if I ever have a gap in health insurance.  If I leave the workforce willingly or unwillingly before I qualify for Medicare, health insurance will be a significant expense. I’ve started putting part of my paycheck into a deferred compensation plan. I don’t pay income taxes on it now, and in a few years, it will be available to help pay for health insurance and health care if I need it. It gives me options and eases my worries for a very expensive part of taking care of me.

These are just a few of the safety nets I work to establish and maintain. They’re not fun, they take time, effort, and money, and it’s really tough when money always seems tight.  When I was younger, I wouldn’t have thought I would be able to ever afford some of these options. It was slow going, and I often felt I started too late. As much as I could have done better planning, I started when I could, and it’s made a difference. They help me feel better prepared for the future, whatever it holds.

Being Cool

More than any other time of year, summer shares my not-so-secret secrets. I’m not as thin, flexible, or strong as I used to be. It’s easier to disguise and ignore in colder weather when clothing is bulkier and outdoor activities are less promising.

This time of year encourages reality checks for how I look, feel, what I’m able to do, and how things that used to be easy now require more effort. While natural aging is challenging, Multiple Sclerosis adds even more difficulty to living well in later years. 

I remember as a kid thinking my 50 to 60-year-old grandparents were really old. They weren’t active, and it wouldn’t have occurred to me that they could be. As I’ve watched baby boomers age, they’ve shown they can still be active. They’ve changed my expectations and hopes for myself for my later years. 

Just as each generation is changing expectations for what’s possible, I think the potential to live well with MS in later years is improving. This isn’t always true for each person, but as a whole, those of us living with MS today are doing better at each age than those with MS fifty, thirty, and even twenty years ago.  

For me, having MS is a burden to endure and a motivator to do what I can to combat its likely effects. At almost 55 years old, I’m hopeful that I’m still in the late summer of my life and still have time to delay decline. Each year I do well, I’m encouraged that I may keep doing well for a while. I know achieving that goal demands even more effort. 

If I let up, spasticity will tighten my limbs, limit mobility, and cause more pain than it already does. Medication helps, but stretching is mandatory for maintaining any flexibility. I’d think the way spasticity fires nerve messages and tightens muscles would lead to stronger limbs, but that hasn’t been my experience. It just tightens them, makes movement more difficult, and causes pain. 

It takes a lot of work to be where I’m at, but I still haven’t given up hope or effort for improvement. 

Thankfully, summer provides more opportunities to do things that improve my health. Produce is fresh and fleeting. Enjoy the flavor and nourishment while it lasts. Days are longer, and more sunlight improves my mood. I love being active outside, and the weather is conducive to outdoor activities. Friends are more likely to want to get together, and they support my well-being. 

Sometimes vanity can get in the way of making things easier or less stressful. Things that accommodate aging and MS-related issues are often bulky, less fashionable, and just don’t look cool. Similar to how opinions and expectations are changing for aging, I’d love it if we redefined what cool looks like.   

If needing accommodations for heat sensitivity, consider it’s cooler to be cool than it is to look cool. Lately I’ve noticed more spectators and athletes wearing cooling devices. They’re helping to change the stereotype that cooling vests and accessories are only for people who are weak or vulnerable. Cooling devices worn by athletes appear high-tech and something that helps high performers excel. Maybe with time, more people will see them as not only normal but desirable.  

With age, I’ve embraced comfortable shoes and safety equipment. I love my hiking poles for the stability they provide and stress they ease when I’m navigating trails. On a paddleboard, I’m fine wearing a bulky personal flotation device. I’d rather focus on balancing and enjoying the water than taking risks. 

I’m eager to let go of self-consciousness when it doesn’t support my goals while recognizing it's not easy to let go of vanity.  I’m hopeful comfort and happiness become the norm for being cool, and I'll advocate wherever I can.

Self-Advocacy: Challenges, Tips, Mentors and Allies

Self-advocacy is hard work. We’re likely advocating for ourselves in tiny ways all the time, and we don’t notice when there’s little to no resistance.  Frustration grows when we meet opposition and live with pain and unmet needs. 

Barriers to self-advocating: Sometimes, I don’t know what I need, I’m unsure of what resources exist that could help, or I’m not being heard by those who could help me. Even if they want to help, they might not know how. 

Cultural stereotypes breed internal barriers that are often met with very real external opposition. Some will see self-advocacy as being selfish, difficult, bothersome, or unreasonable. They’ll see it as a challenge or threat to them in some way. Just as that isn’t always true, it’s important to recognize that successful self-advocacy might not yield the results we seek. The burden falls on us to advocate for our needs, and we can’t control how others will respond. 

Tips for self-advocacy and being an ally: 

What might help could be learning more, speaking up, seeking advice, or realizing there are other options for treatment, relationships, and the future. Sometimes the fix is to chart a new course.

Soft skills like team-building, facilitation, communication, and compassion go a long way to navigating interactions for successful self-advocacy. The same skills are helpful for allies who want to help us navigate our challenges. 

My favorite and most helpful allies haven’t always given me what I asked for. They listened to me, made suggestions recognizing they might not be right, praised me for what I was doing, and encouraged me when needed. They may have seen what changes I needed before I did, but they didn’t push harder than I could accept at the time. 

I aim to emulate the friends, family, instructors, medical providers, coaches, bosses, and counselors who cared, believed me, understood they didn’t know everything, and helped me navigate through many challenges. They knew they couldn’t fix things for me, but they could be an ally and resource in my journey. 

Advocacy examples:

At fitness classes, I’ve learned to be clear with instructors about what my specific issues are, things I avoid, and areas that need extra attention. I’ve learned instructors who use boot camp methods of encouragement not only don’t work for me, they sabotage my health goals and MS symptom management needs. I will naturally push myself harder than I should, and it contributed to many MS exacerbations over many years before my MS diagnosis. It’s taken a lot of effort to right-size my fitness activities, monitor when I’m pushing enough or too much, and feel confident that I’m doing what’s right for my health. I’m always cautious with new fitness instructors and activities and want to see if we’re a good match. 

I need an instructor who will help me find the right level for my needs, not someone who will push me to my highest exertion level for the duration of a session. That’s when I have frustration, resentment, and feelings of inadequacy that don’t serve me. I make sure to advocate for myself by explaining my limitations and goals. Instructors who challenge me, show compassion, respect my limits, and praise me for my efforts make the cut. 

Medical care providers: At the neurologist’s office, I learned that I tried hard to be a good, likable patient, and I wasn’t being as firm or persistent as what would be helpful for my health. I brought a friend with me to my neurologist appointments a few times, and they were surprised by my behavior.  They knew professionally I was confident and clear about things. I wasn’t aware I was behaving timidly, but when pointed out I agreed. My friend encouraged me to use my professional skills at my doctor appointments, and it has helped me immensely. 

I was lucky to have a primary care provider who was AMAZING. Previously, I’d had doctors who dismissed issues I mentioned. I wanted things to be fine, and they supported my desire to dismiss issues as not worrisome. 

The one who was amazing? She would call and make appointments for me from the exam room. When suggested follow-up appointments were too much for me to take on immediately, she accepted my plan to wait with respect and compassion.

They praised me for my efforts when I was down on myself for not following my health plan perfectly.  My favorite and most helpful medical care professionals granted me grace.  They taught me I was reasonable and worthy, I didn’t need to expect perfection of myself, and I not only could but should express my needs. 

Physical Therapist: When they suggested a 30-minute per day strength and balance routine for me, I asked them to create one that was 15 minutes. I understood 30 minutes would be better, but I knew I was unlikely to do it consistently unless it was shorter. I didn’t enjoy it, and I preferred other activities. In this case, self-advocacy was pushing for what I was willing to do rather than what they thought I should do. 

Personal and Professional Relationships: I’m a fan of discussing goals for the day, week, and weekend. I’ll advocate for what I need and want, and I’ll ask them what they need and want. It helps to collaborate on a plan that serves us both. It’s taken me a lot of time and practice learning to be direct and discuss things. It can feel risky being open to rejection and judgment, and it’s been rewarding to have grown enough to be able to have tough discussions with friends, family, and my partner in healthy ways. 

At work, I’m open with what I do to accommodate my health needs, and I support my team when they need to address their own health and family needs. The rewards of supportive and flexible relationships individually and collectively far outweigh the inconveniences. 

I’m grateful for all of the mentors and advocates who have taught me with every interaction. They’ve improved my ability and willingness to advocate for myself, and they’ve shown me how I can be an ally and advocate for others. They may not have intended to make such a difference, but they did to me. 

Self-advocacy can change a life for the better. Collectively, we can improve the lives of many. 

The Joy of Imperfection

If I could talk to my younger self, I know she’d be surprised, excited, proud, and likely a bit skeptical to learn that I’ve genuinely found fulfillment in imperfection.  

I was a very timid and quiet child. I feared making mistakes, looking dumb, and not doing things right. I tried to avoid any possibility that I’d do something to be ridiculed or judged negatively. 

I visibly shook throughout a presentation on candle-making to my fourth-grade class. It was torture to be the center of attention in a classroom. A high school presentation of a memorized poem wasn’t much better.  Neither my nine-year-old self nor my 15-year-old self would ever have imagined that someday I would frequently present with confidence to large groups. Young me would be amazed that I overcame my fear of public speaking. People who have only known me for the last 10 years would not believe I was ever that shy and fearful. 

Being diagnosed with Multiple Sclerosis was a pivotal moment in my life. It added loads of new worries, put my existing fears in perspective, and motivated me to live as well as possible regardless.

New fears were big ones. I feared losing physical mobility, memory, and cognitive clarity. I worried about losing the ability to work and afford health insurance. I became increasingly aware that things I want to do someday might not be possible as time progresses and my health likely declines. I worried about the worst that could happen, and I aimed to combat my worries with action. 

I feared MS would cloud my thinking and limit my ability to work and be good at my job. I was worried that misspeaking would be a sign of MS progression or stupidity. I started tracking how often people misspeak in meetings, presentations, and conversations. When I did, I noticed people say the wrong word or the opposite of what they mean A LOT. My hyperawareness taught me that smart, competent, and seemingly in perfect health people say the wrong word or the opposite of what they mean all the time. I’ve learned that when I misspeak, it’s how I react that matters. Knowing this allows me to relax, thank anyone for pointing out the mistake, correct myself, and roll with it. A benefit is it encourages group participation, and it shows others with less confidence that a person can be smart, good at what they do, and still make mistakes. This is the type of situation where I would have been embarrassed or insecure when I was younger. Now I embrace making mistakes and celebrate the benefits.

I feared asking dumb questions or being wrong, so I often didn’t ask many questions. I’d think about things a lot, soak up what I could, and learn a lot from books. In my professional life, I’ve experienced over and over again how much more I learn when I’m willing to offer my opinion and be told I’m wrong. Those are times when I learn something new, and I might not ever have known a different way of looking at it without being willing to be wrong. These are also moments where it’s how I react that matters. It’s become important to me to show that people can be good at what they do and also be wrong sometimes. I consider these instances to be good examples to others who might need to overcome this fear. 

I avoided looking silly to anyone other than my closest friends and loved ones. Being diagnosed with MS helped me see how things I thought would be judged as silly or foolish aren’t a bad thing. Singing karaoke was something I never thought I could do. When I did, it was fun and brought me closer to others. Letting fear limit how I have fun now seems a foolish decision.

Striving for perfection was an effort to avoid making mistakes. Embracing imperfection has been freeing and fulfilling. I know my younger self would have a hard time accepting the joy of imperfection, but I know she eventually did. 

Burdens Shared

March is MS awareness month, and it’s a good time to reflect on the lessons I’ve learned while navigating life with Multiple Sclerosis for 16 years. Of all of the lessons I’ve had to learn, the hardest has been accepting my MS is not just my problem. 

When I was diagnosed with MS, I firmly wanted to be able to deal with it myself. I saw it as my problem, and I didn’t want it to affect those around me. I saw it as solely my responsibility, and I thought it would be unfair for me to let it burden anyone else. 

I didn’t sign up for having MS, and neither did my friends, family, and colleagues. I thought I could shelter them from my hardships, and I thought that was the noble way to approach it. I strived to be independent and strong, and I thought being needy was a weakness. 

When it got to be too much, I sought help. Some rose to the occasion, and some resented my pleas for help. I was embarrassed to ask, and it was crushing being rejected. Those willing and able to provide healthy support were grateful I was finally asking for and accepting help. They have been essential to my well-being, and I’m grateful for them.

I’ve learned that sharing my experience and counting on people to help me is not a burden. They are components of healthy relationships. It takes strength and courage to let people in, and I’ve come a long way. I’m grateful when people ask and accept help with their challenges. 

I’ve learned to let people know how my MS may affect them, and most people are incredibly supportive and kind. I hope to lead by example for how we can be compassionate and understanding when life doesn’t go as planned. We all have challenges throughout our lives, and hardship grows when we try to go it alone. 

While this lesson has been hard earned, it’s also been the most rewarding. 

Moments Matter

Have you ever been in a mood and had something happen that changed it in a moment? It happens a lot, and some moments stick through the years. 

I recall being at work years ago, and cheerfully saying, “Good morning!” They responded quickly and sharply, “What’s good about it?” 

I don’t remember how I responded then, but I still think about how it startled me. I felt like I’d done something wrong, and I wasn’t sure what. My mood swiftly dropped from happy to resentful.  This memory helped me learn the life lesson that we’re all living different experiences, and lots of interactions have nothing to do with us. 

The same holds true for the ability of strangers to lift my spirits.  I regularly recall the child who years ago mistook me for their mom.  While I perused the shelves at eye level, I felt a tight hug around my legs paired with, “I love you.”  The child looked up at me and realized I wasn’t their mom. They quickly released me and ran to their mom in embarrassment.  Their mom and I exchanged a quick smile and assurance all was fine. I was left surprised by how good it felt to receive love that wasn’t even meant for me. I was grappling with immensely difficult life circumstances, and that moment lifted me up in a way I really needed at the time. 

My mood shifts between highs and lows throughout the year, but it can feel even more intense during the holiday season. I’m physically managing intensified Multiple Sclerosis symptoms, and I’m emotionally managing some sadness that the holidays often bring. I’m often interacting with more people than usual and pushing myself to do more than my usual routine.  The stakes seem higher, and I anticipate I won’t always be at my best. Similarly, every other person out there has their own world of stress, hardship, and expectations. 

This isn’t earth-shattering, surprising insight, but reminders to think beyond my thoughts help me when I’m having a hard time. Considering how hard life is for many helps me be more patient and compassionate. When I aim to spread kindness, I feel better about myself. When I feel better about myself, I’m more likely to spread kindness. That feels good.

Look Forward to Something

Fall where I live means shorter days, less sunlight, more rain, and colder weather. I realized after my Multiple Sclerosis diagnosis, that seasonal shifts to spring and fall are times when I’m more susceptible to MS exacerbations. I used to worry about it, and it’s taken a lot of effort to feel more confident approaching seasonal changes.

My usual approach is:

1. When things are tough, take inventory of what’s tough, what will help, and what’s helped before; and

2. Look forward to something.

For the first item in my approach, check out my post, Seasonal Well-Being Checklists, for some practical tips for coping with season changes. With this post, I’ll focus on the second one: Looking forward to something.  

It’s easy to focus on the season's challenges, but it’s helpful to acknowledge and take advantage of the benefits.

Shorter days mean sunrises are later in the morning, and I’m more likely to be awake to enjoy them. Many of my favorite sunrise photographs and moments of enjoying them were in the fall. Earlier sunsets and darkness also make it less difficult to get to bed and fall asleep. 

Shorter days also mean earlier sunset and darkness. I chased the Aurora Borealis in May this year and managed to see them spectacularly.  That evening I saw them lightly at 10:00 pm and stayed up until 1:30 am to capture the show.  It took a toll on me staying up so late, and it was worth it to me to see them for the first time. Tonight, I saw them at 8:00 pm and am still able to go to bed at a decent hour. They might not be as incredible this time, but I loved it and won’t need a couple days to recover from staying up late. 

Colder weather means I’m more comfortable outside and don’t need to worry about heat-induced MS symptoms. When the weather isn’t as warm and sunny, I feel less pressure to be outside. Spending time indoors feels more cozy, comforting, and relaxing. 

October brings Halloween and autumn foliage. Seeing photos from friends and family of kids enjoying the fall season is delightful. I love seeing their pumpkin patch outings, apple orchard picking, and Halloween costumes. I enjoy giving candy to trick-or-treaters and admiring their costumes. 

Early autumn brings low-pressure Thanksgiving and Christmas planning. Planning early for decorations, cards, gifts, and get-togethers can be done with excited anticipation rather than last-minute anxiety and stress. 

When I focus on what I enjoy with the season, it brightens my outlook and makes coping with challenges a bit easier. 

Keep Moving

If you can’t run, then walk, if you can’t walk then crawl, stretch, or flex. Just keep moving.

Living an active lifestyle can be a challenge in the best of circumstances. Add living with Multiple Sclerosis symptoms such as fatigue, foot drop, and heat sensitivity, and it’s generally frustrating and takes more effort to stay motivated. Factor in adverse weather conditions, and it’s a huge undertaking to override the urge to be sedentary.

With MS, it’s common for symptoms to act up when the body temperature increases. That’s why hot weather is one of the many obstacles to staying active. When I was still learning how MS affected my body, it was scary when a jog led to body numbness from the neck down and an inability to control my feet reliably.  Over time, I learned to differentiate between heat and exertion-induced pseudo-exacerbations that would subside within an hour or so after I cooled down and disease-progressing exacerbations that last much longer. 

It helps me to remember that my body needs movement, and all of the reasons to not exercise don’t change that. 

What to do with this immutable fact?  Remember creativity and flexibility are superpowers to draw upon for living with health issues and less-than-ideal conditions.

I’m not apt to follow a strict fitness regimen, because I need to respect my body’s ever-changing needs. A menu of exercise options with various exertion levels is useful for right-sizing activity to accommodate my MS symptoms of the day. The same approach is true for the weather.  During a heat wave, my body might be okay with outdoor activities if it’s in the shade, there’s a breeze, or scheduled before or after the hottest parts of the day. Varying exertion levels help too. I may not be up for a jog, but a walk might be doable. When it’s not conducive outside due to extreme heat or smoke, I’ll use the yoga mat inside for some stretching and strength movements. 

When creating your activity menu options, consider the following:

• What do I already do or like to do, and how can I keep doing it? What accommodations will help?
• What do I want to do, and what would it take to do it?
• Which combination of benefits, location, type, and exertion level will work on this day?
• Benefits: movement, strength, stretch, balance
• Location: outside, inside, gym, pool, trails
• Type of Activity: gardening, housework, playing with kids, biking, hiking, walking, dance, yoga
• Exertion level: most activities can be done gently or with high intensity, quickly or slowly.  

Using yoga as an example, yoga can be done with a range of exertion, location, and benefits. There are endless variations including high-intensity hot yoga in a heated studio, Acroyoga classes with a partner, moderate-intensity yoga focusing on flexibility and strength, low-intensity yoga focusing on relaxation and breath work, chair yoga, and even bed yoga.  They can be done in a class setting or at home following videos or free-form and self-guided. If one type or location doesn’t work on a specific day, another will. 

Seek inspiration everywhere and use what you can to keep going. While the following was said for much grander and more important social issues, I think of it whenever I need motivation. 

“If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.”

― Martin Luther King Jr.

I’ve modified it for fitness purposes to be:

If you can’t run, then walk, if you can’t walk then crawl, stretch, or flex. Just keep moving.

The other saying that helps me feel grateful for all I can still do seems to be loosely based on a quote from Tolkien’s Return of the King:

“There will come a day when I cannot do this. Today is not that day.”

Seeking Hope

Finding my new normal was my initial goal when I was diagnosed with Multiple Sclerosis. I didn’t know what I’d need to know to live well with MS, but I held faith that I would learn what I could when I was ready. My hope was to live as well as possible with MS. Both faith and hope are deeply reliant on me to do what I can.  

The fact is I’ve had periods of holding it together, phases hoping to come out of a lot of MS symptoms, and moments where I feel like I’m rocking this life and doing fabulously. 

Early in my diagnosis, I sought out every resource I could find. I read all the books related to MS in the local library, I joined the local MS Self-Help group, and I followed my neurologist’s advice. I monitored my symptoms and tried to make sense of a confusing and inconsistent illness. I searched the internet to learn all I could about MS and what helps. My health was a project to solve, and I treated it like a second full-time job. The urgency to figure out what could help was stressful, but I think it was a necessary phase of adjusting to life with a chronic illness. All of these efforts helped me become more hopeful.

Scientific studies conclude those of us living with chronic illness have a better quality of life when we have hope. When we’re optimistic, we believe our efforts can make a difference. Having hope helps combat stress and anxiety. 

When lacking hope or feeling pessimistic, we’re less likely to think our efforts matter. Either way, what we believe matters for our mental and physical health when dealing with adversity.  

We can’t fully control or count on a constant level of hope. Accepting our highs and lows as normal can help ease some of the stress of living with MS. Monitoring our mood and stress level can help us notice when we’re feeling less hopeful. What we need in those times differs for each of us, and they vary depending on what’s challenging us at that moment. 

What do I need, and what might help? 

Sometimes I need to research the symptoms that are challenging me, and others I need to talk to someone who will listen. Some moments benefit from taking a breath, stretching, and looking inward. Other moments are best served by looking outward and thinking about something other than myself. Each moment’s feeling is unique, and each needs its own plan of action. My not-so-new normal is only consistent for seeking hope and accepting the path is always changing.  

Navigating Life With MS Without My Mother

This is my truth. If my mom hadn’t died when she did, she would have been a comfort and helper when I was diagnosed with Multiple Sclerosis and felt so alone. She would have made a difference in millions of ways, but I’ll focus here on how being motherless relates to my MS. 

I was diagnosed 15 years after my mom died.  In hindsight, I’m certain that following her death I had an MS exacerbation characterized by extreme fatigue, depression, and surprising clumsiness. At the age of 23, I was executrix for her estate. It was a monumental responsibility organizing her funeral, managing her finances and legal affairs, selling her home, and dealing with everything a life suddenly cut short entails. 

I acknowledge my experience wasn’t harder or easier than others, it was just mine and a lot.  The heartbreaking irony was that I wanted and needed her help, yet she was the reason the job needed to be done, and she wasn’t there to comfort me. Regardless of the grief, tears, frustration, and inexperience, the job demanded I rise to the occasion.  

It was a lonely experience then, and I felt similarly isolated and unprepared to deal with my MS diagnosis.  Even though I was married and had friends, family, and colleagues, I felt an immense lack of support and guidance dealing with adjusting to living with MS.  None had MS or experience with any chronic illness. Worse, none were my mother who knew me so well and would have willingly helped without me asking. 

I felt like I was a project manager expected to know what I needed, and know and tell others how they could help. Add my feelings of guilt for being a problem to solve and a potential burden, and I felt a responsibility to reassure others I’d be fine and to comfort them for how my health condition triggered their emotions. Sometimes it was pride that kept me from showing vulnerability and accepting help, and sometimes I clearly saw others were unable to see beyond their own needs to help me with mine. 

My mother would have willingly and confidently stepped in without instruction, and I would have let her. 

In the thirty years since her passing and my fifteen years living with MS, I’ve learned, grown, and adapted more than I ever anticipated.  I’ve learned my desire for complete self-reliance in hopes of not being weak or burdening others shares the downside of cultivating isolation. 

I didn’t set out to find people to fulfill the mothering I lost, and I actively rejected anyone claiming they could. They weren’t people I didn’t need to explain myself to.  They didn’t know my strengths, challenges, and life history, and they weren’t going to love me no matter what.

I’m learning to appreciate people helping as honoring my mom, not replacing her. It takes a lot of relationships to cover the roles my mom provided for me, and I’m heartened when I realize I have many. I’ll notice when people show compassion in the way my mom did. When they describe me to others with pride. When they cheerlead and feel happy about my accomplishments. When they show compassion without pity. When they see my vulnerability and don’t think I’m weak. When they notice, anticipate and assist without me having to ask. When they look out for me and create calm in the chaos. When I’m angry, frustrated, and feeling lost, and they still love me.   

It takes self-awareness and humility to know what I need and be able to ask for help. I aim to find what I need when I need it, and I hope to contribute to others as I can. Sometimes I’m better at it than others, and I’m fine with accepting it as a lifelong effort.