Family Roots and Branches

To quote the band Talking Heads from the song Once in a Lifetime, “How did I get here?”

And why does it matter?

For my ancestors who died before I was born, I contributed absolutely nothing to what they did or who they were. I try not to take any unearned pride in their efforts. I have no idea if we would have even liked each other. 

Still, I marvel at the many hardships they endured that brought my family to the United States and led me to be here.

I’m fortunate that some of them wrote about their trials and travels, described what people were like, and included humor with history. Reading these family history compilations helps connect me to world history.

One side of the family history traces back to the 1880s, to a girl born in Georgia, a province of Russia near the border of Turkey. She was orphaned at age six. Her son wrote about her life in 1988 when he was 81 years old. It’s a treasure of recollections describing tragedy and grit. 

From a childhood of working to earn her keep, a marriage, three children, and arriving in America by way of Ellis Island, the extreme hardship and poverty are heart-wrenching. Hard work was a constant. 

Another side of my family traces back to 1795 in Ireland. A wedding gift of 500 acres in Tennessee brought my forefather to America. After reading “Journal of Exploration” written by Lewis and Clark, they decided to travel west to the Oregon Country in 1845. The five-month, 2,000-mile journey was filled with danger and hardship, and their granddaughters memorialized it 100 years later in 1945.

It’s impossible for me to adequately describe how much every generation before me experienced. There’s just too much. And that is the marvel of it being written and being able to know it. It’s truly a gift they spent time and effort compiling their life stories.

For the family members I’ve known and spent time with, I feel freer taking pride in knowing and loving them.

A grandfather who, at the age of nine during the Great Depression, worked to help his mom feed them. My father, who worked hard and achieved impressive professional success. My mother, who epitomized resilience and continues to influence me daily decades after her passing. 

My roots are filled with people doing big things, shaping lives and opportunities for their generations to come.  Snippets and stories told describe family characteristics, traits, values, and morals. They are filled with life lessons to emulate and avoid.

My family tree branches brush up against my own limbs more easily now, thanks to social media. It lets us connect more often and know more about each other across many miles. They’ve spurred visits and friendships.

My uncle passed away this year. I had no idea that when I spent significant time with my aunt at his memorial that it would be the last time I’d see her. She passed away less than two weeks later. I’m extremely sad for myself with their passing, and I’m a million times sadder for my cousins losing both parents.

I’m grateful for the time I spent with my aunt, uncle, cousins, and their kids over the years, and during this recent visit. We’ve shared walks, meals, and lots and lots of stories. Each time we connected, I discovered more about who they are, what they’ve done, what hurt them, and what made them happy. I got more context about other family members through funny stories decades old. I’m better for knowing them, and I’m honored they shared their lives with me.

My family roots and branches give me strength, support, and flexibility. Whether in memories or current connection, they grant me kinship, perspective, and appreciation for where I am and the opportunities I have. I admire their adventurous spirit and fortitude, and I’m motivated in my own life to know that my genes support me in dreaming big and persevering in trying times.

It Takes a Village

When I think of my community, I first think of where I live, my friends and neighbors who will show up for me, and those I’m compelled to show up for. In times of crisis, a surge of community help is noticeable. A call to action is made, and people rise to the occasion.

As a teen, five people in my family, including me, were in a serious car accident. The neighborhood organized a month of meals for us. Because I was the only one who was mobile and not seriously injured, it helped me immensely to care for my family in ways that didn’t require constant cooking. I hadn’t known most of my neighbors at the time, and their kindness still moves me. Since then, I’ve contributed by providing a meal or donating financially to help others in similar need. I don’t need to know them to help.

When need is ongoing, it's harder to get a surge of assistance. That’s where volunteers who consistently show up make a different kind of difference. Many of our community services rely heavily on volunteers. The list of organizations and number of people volunteering are mind-blowing. Our libraries, fire departments, emergency response network, non-profits of every variety, religious organizations, food banks, and Meals on Wheels are just a tiny subset of the groups serving our communities and trying to meet extremely important needs.

I’m a firm believer in thanking and encouraging people doing the work. People are often praised when they retire or leave a role. When they’re doing the work day in, day out, appreciation makes a much bigger difference.

Where my health limits my energy, I find ways to participate and contribute that align with my skills and abilities. I can donate, attend the annual event, or offer my knowledge as a resource. Spreading the word and speaking positively about the work organizations do helps.

I won’t be able to do hours of engagement because I work a full-time job and manage my MS symptoms with a lot of rest. Still, I can research, offer suggestions, or contribute financially within my means. Sometimes people judge when I don't participate the way they think I should. Not everyone will understand or approve of how I choose to contribute, and that's okay. 

When I expand my focus, I notice my communities aren’t limited by geography. Online Multiple Sclerosis support communities have provided a wealth of information, support, and a sense of kinship. Recently, a group from the United Kingdom contacted me about using some information from my blog. It made me feel good that they found my writing useful. While I won’t be attending anything in person, I’m enjoying reading their newsletter and seeing their local MS support efforts.

My contributions to my community are readily known through my job and the work I do, and I feel good about that. The lesser-known contributions involve sharing how Multiple Sclerosis affects me, how I cope with it, and how I hope to destigmatize living with health issues. I’m eager to support and cheerlead others, be a sounding board, and do what I can for people navigating their own health issues. I’ve been surprised over the years to learn how people knew of me and suggested that someone newly diagnosed should talk to me. It’s created more connections and friendships, and it’s shown me how far-reaching my community is.

Self-Guided Summer Fun

When looking for things to do in the summer months, I think of my favorite experiences and memories. Some were big, pricey events with lots of planning, and some cost next to nothing, were memorable for some reason, and were special for who I did them with.

This summer I’ll have close family visit me. Our primary goals are to spend time together and relax. Still, it’s the perfect opportunity to create an indulgent staycation for me and a fun vacation for them. They’ve already visited many times, so my goal is to do more of what we’ve enjoyed in the past and find new experiences for us to enjoy together.

It’s interesting playing tourist in my own town. Things I enjoy and may take for granted, I see differently, imagining how they seem to visitors. Many of the museum and library-sponsored events are inexpensive or by donation, and they’re happy to have people participate.  Searching social media or the web using the name of a place and “things to do” or “self-guided tours” has revealed a ton of ideas. There are plenty to choose from for artwork, history, architecture, and culturally significant places. I love self-guided tours because I can do some or all of them at my own pace. If I do it fully, great. If I only check out a couple of places on the itinerary, that’s great too.

Tours I’ve enjoyed in the past locally and in other cities have included haunted history, historical murals, low-tide ocean wildlife, and street art. Each experience teaches me something and helps me see the world around me in a new way.

I see a few tours that can meld well into plans of being outside, eating good food, and spending time together.  None require a lot of planning, and plans can change if we’re not up for something. Whatever we do, I know we’ll be glad to be together.

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.

Intention & Expectations

Lately, I’ve been pausing periodically throughout each day to ask myself, “How do I want to show up today?”

It only takes a moment, just enough time for a brief inhale and exhale. It allows me to shake loose whatever thoughts are running through my mind and start fresh. I like to imagine I’m shaking a marked-up Etch-A-Sketch toy to create a clean surface ready for whatever I want to draw.

It helps me put myself in a frame of mind where I can be more compassionate toward people. I always want to be nice, but sometimes I’m too busy thinking about my own problems to notice how I’m coming across to others. 

Visible and invisible disabilities, trauma, loss, grief, turmoil, and mental health issues are abundant. The majority of people have experienced traumatic events, many people are currently living with difficult life circumstances, and some are just having a bad day. Remembering this puts me in a mindset to grant more grace when someone doesn’t behave well. 

When I ask myself how I want to show up, it helps me remember that I’m not at the mercy of circumstances and other people’s moods. It reminds me that how I act will influence how people respond to me. It helps me prepare for tough interactions and stressful situations. It’s helped me to listen more attentively, be more compassionate, and respond better when I’m not consumed by my thoughts. 

When I know I’m not at my best for whatever reason, it makes a huge difference. It shifts my focus from the thoughts in my head to my behavior, and then I have the option to intentionally influence what happens next. 

In stressful times or when I feel like others aren’t considering my needs, I know I need to work harder to avoid reacting in ways I don’t like. It doesn’t mean I need to be perfect, just responsible for my behavior. 

Aiming for perfection is impossible. I know, because I tried really hard to be perfect for a long time. It was a lesson that I needed to learn to be happier.  Perfection is amorphous and relies on what other people think. Being true to myself and behaving in ways I’m proud of in most moments are possible goals. They also just so happen to be behaviors that tend to be appreciated by others. 

There have been times when I’ve half-jokingly said, “Most days I try to get along with everyone else, and today was their turn to get along with me.” It’s a way for me to grant myself grace when I wish I’d done better, and it’s an opportunity for me to do better next time.

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. 

2025 Year in Review Through Bingo

December is the perfect time to reflect on how the past year measured up to hopes and goals. In January, I created a 2025 Bingo card that reflected various priorities I have.  It proved useful and motivating as I checked in throughout the year. In November, I created a second Bingo card for the holidays that featured more self-care items, and it added a lot of value to my life. I didn’t complete every item on either of the Bingo cards, but I did a lot more of them than I think I would have without them. 

Things I accomplished this year:

1. Dry January – 30 Days no alcohol
2. Read three books - this one I exceeded greatly with the help of my local library
3. Virtual painting party & complete a paint-by-numbers: This was a really fun project. I had a paint-by-numbers created from a photograph of my sisters and me. I gifted it to each of them for Christmas last year, and the plan was to have a virtual painting party, complete with berets and a photo op. It was a lot of fun, and now I have a really cool painting of us!
4. Strength training 12 times in 30 days – this one took until November-December to finish. While I did strength training all year, I usually did it twice a week. Having the Bingo card motivated me to add some extra sessions. 
5. Bake something – I made a lemon meringue pie for a friend and cookies. It was fun to brush up on some old skills and enjoy the results.
6. Visit a new place in my state & celebrate my birthday with a weekend getaway – this combined two Bingo tasks, and I smile just thinking about the incredible scenery and hiking I experienced at Mount Rainier National Park. 
7. Set up a home office – This one was intended to help me have more flexibility and be prepared when things don’t go as planned. I’m glad to have a space and setup that is ready to use.
8. Travel outside my state – I accomplished this one twice this year, and it was fulfilling to visit with friends and family. 
9. Write 10 blog posts – I’ve done 11 so far, and this one will be the 12th of the year. When I started blogging in 2013, my goal was to write ten posts annually. I’ve met or exceeded that number each year, and this post is #173. 
10. Bike ten miles – I thought I’d do this one outside, but it didn’t happen. I did bike inside on my stationary bike for more than ten miles in a workout, and I’m counting it. Just because it didn’t go as originally envisioned doesn’t mean it wasn’t worthy!
11. Make a quilt – I’ve done quite a few over the years, and this one was really special.
12. Reconnect with an old friend – a dear friend invited me to a community event recently, and it was a joy to catch up! I didn’t initiate it, but we made it happen!

There are more squares with tasks that are yet to be done, but I did get three Bingos in each of my cards so far. I also have time and might finish some more before year end. 

My key takeaways from this project are:

• Setting some broad goals without explicit requirements allowed me to be creative. 
• I intentionally chose items that would support overall well-being. They captured physical and mental health, creativity, travel, connection, and professional development. 
• Looking at the Bingo card monthly kept me focused, and it motivated me to put extra effort in certain areas throughout the year. 
• Without this, I don’t think I would have accomplished as much as I did. 
• This project has been one way for me to celebrate wins and see where I have more difficulty. I don’t feel bad about what didn’t get done when I see them next to what I did accomplish. 
• The items that didn’t get done might have been partially done or have some good reasons for not getting completed. If they’re important to me, I can put them on my 2026 Bingo card. 

Whether you create your own Bingo card or just list items that appeal to you, checking in throughout the year can help you decide what really matters to you. Some goals may change or drop off, and some may prove to be tremendous sources of joy. As this year ends and 2026 begins, I hope you have all you need to find joy and fulfillment. Cheers!

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. 

Fortifying Relationships

Some bonds can withstand extreme stress and grumpy behavior. Others falter with the slightest misstep or misunderstanding. 

Sometimes I wonder where I stand with people I haven’t seen in a while. After getting divorced, I worried I was portrayed in a way that led people to judge me in a way I thought was unfair and inaccurate. When encountering people I haven’t seen in a while, I’m not always sure if their opinion of me has changed.  I cherish those who light up when they see me. My fears and insecurities vanish immediately, my entire body relaxes, and I delight in the reunion. 

There are others who I’d never question where I stand. They’ve been consistent confidantes and cheerleaders. Our relationships have been fortified over many years to a level where I can’t imagine anything could break it. 

It’s easier to put effort into relationships when I feel good. Being generous and kind comes naturally when I’m less stressed or fatigued. When I don’t feel well, it’s harder to look beyond my own thoughts and feelings to see what’s going on with others.

Sometimes, the shift from gathering strength to interact to being energized and excited to connect comes quickly. It can be from their energy rubbing off on me, their kindness, or their acceptance of me without demanding anything else.

Sometimes it’s a reality check that causes a shift. Realizing a friend is going through their own hard times and could really use support reminds me to look beyond my own life. 

I’ve benefited and learned so much from many very wise and compassionate people who helped me through challenging times, and I try to pay it forward. Usually, it’s by example, but I’ve attempted to gather and share some highlights here. 

Make bids for connection:

• Offer to listen, invite them to share, and make it clear there’s no expectation or pressure.
• Check in by phone, text, or email, and let them know they don’t have to respond.
• If I’m genuinely there for them at all times, make sure they know it and believe me. 
• Be there for them when they reach out. 
• If you’re able and it feels genuine, light up when you see them.  

Consider conversation approaches:

• Ask open-ended questions that aren't leading. Avoid asking, “So you’re doing well?” Try “How are you doing?” If they’re not doing well, they won’t need to overcome an incorrect assumption before sharing whatever they’re comfortable sharing.
• Acknowledge that my own problems may be silly and aren’t as big as theirs, but they’re what I’m experiencing. Sometimes people are sick of dealing with their own issues and would like to hear what’s going on with you.
• Share without competing. Allude to how my experiences may be similar, but be clear that I understand their situation may be completely different. How I deal with similar issues or life events may or may not help them.
• Validate their experience before providing reassurance.  If the validation step is skipped, it can appear to be dismissing their feelings and reality.  
• If I get emotional, be clear that the topic is hard but I’m glad they’re sharing with me. 
• Be patient, and let the pauses linger.  What feels like an awkward pause can be received as patience.  Quiet moments help allow time to organize thoughts and gather the courage to share. 
• Avoid interrupting, it can disrupt their train of thought. If I do interrupt, I’ll try to bring the conversation back to the point where I interrupted them. 
• Don’t yuck someone else’s yum.  What works for one doesn’t for others. 
• Be okay with not agreeing with them and not understanding everything.  Trust they’re doing their best, and respect their decisions. 

Show appreciation:

• Appreciate the relationship, and tell them why.  Share how our relationship and times together help me and make my life better.  
• When people ask for help, let them know how much they’ve helped me in the past.  Share how being there for them is important to me. 

Follow up:

• Sometimes my reactions can be misconstrued or confusing. If I’m really absorbing something, I might stare and not say anything. It can sometimes lead people to reach conclusions that weren’t my intention.  If I realize later that this might have happened, I want to let them know that my reaction was sincere contemplation and not judgment. 
• If I perceive an interaction as difficult, follow up later.  Ask if it’s okay to bring up what happened and what I think I could have done differently.  See how they feel about it, and see if they agree or have other insight. If they don’t want to talk about it, reinforce the relationship and let the issue go. 

Each of these suggestions has one or many stories behind it. I cherish the friends, family, counselors, acquaintances, writers, bloggers, and leaders who’ve shared their wisdom and have helped me learn and grow. I needed it, and they’ve helped me immensely.

Wishes for Wellness

Bright lights on buildings and cool decorations

Brighten the landscape and cause a sensation

Snail mail and email share tidings and cheer

Wishes for wellness and Happy New Year

Kindness from strangers and heartfelt connection

Show us what matters and trigger reflection

Posts on the social show who they hold dear

Wishes for wellness and Happy New Year

Visit with loved ones and arrive gift bearing

Delight in giving while sharing and caring 

Joy, peace and goodwill for those far and near

Wishes for wellness and Happy New Year

When fatigue hits

When the stress rears

When I’m overwhelmed

Focus on what matters, let go of the rest, 

and deem the season success!

This was written for fun to be sung to the tune of “My Favorite Things,” by Oscar Hammerstein II and Richard Rodgers in their musical, “The Sound of Music.”  Take good care, all!

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. 

Including Stillness as a Fitness Goal

April is National Stress Awareness Month, and it's a perfect reminder for me to
check in with my stress level.  It's an extra busy month for me each year meeting professional and personal commitments while accommodating my health needs.

I recently did a 15-minute High-Intensity Interval Training (HIIT) workout, and I followed it with a guided meditation of the same duration.  When I found myself needing more willpower to stay engaged during the meditation portion than I needed during the high-exertion portion, it occurred to me I really needed to work on calming my mind more.  

Averaging 30 minutes of exercise per day is a common recommendation to maintain good physical health. This is a goal I try to meet, and I usually accomplish it each month. For years I've tracked and categorized exercise as Movement, Stretch, and Strength, and I've aimed to get a mix of them. Those were the types of exercise I valued most. After seeing how much effort it took me to meditate, I knew I needed to add stillness to my daily tracking. It's just as important for physical and mental health as nutrition, exercise, and sleep.  

I'd rather aim for stillness than meditation in my daily goals because it feels less specific. I don't have a minimum time threshold or prescribed body position to meet my stillness goal.  Ways I've included stillness are varied and limitless:

• I've rested reclined on the sofa while wearing a heated eye mask. With a timer set for five minutes, it's a calming and rejuvenating way to help offset screen time impacts. 
• Taking a moment to close my eyes, relax my body, and take a deep breath makes a huge difference in my stress level when I'm wound up. 
• Guided meditations of every sort are available online. Finding one with a tempo, time duration, and pleasing voice can take some time, but there are plenty! They are also wonderful for helping me stay focused and still for a longer time than I would on my own. 
• Years ago, I participated in a meditation circle once a week. I still recall it fondly and cherish that time in my life. It was a delightful combination of stillness, quieting my mind, and connection with dear friends. 
• I've loved yoga classes for movement, strength, and stretching, but I've overlooked the value of breath work and savasana (resting at the end). Quieting the mind after full body movement encourages a peaceful spirit.  

Adding stillness as a fitness goal has emboldened me to practice it more often, and calm moments are more frequent. Thank goodness!

Prioritizing Self-Care

Each year I approach the holiday season with excitedly high hopes and an underlying worry for the demands the season entails. I know I need to be even more attentive to my health than usual to best navigate the next couple months. Yet most years I put commitments and other people ahead of my own needs. It leads to overwhelm and exacerbates my MS fatigue. 

Self-care is an individual decision and responsibility, and it’s within our control.  So, what makes it so hard? Often, it’s the abundant needs of family, friends, profession, and self-imposed expectations competing with limited time, money and energy to meet those needs. The demands of us and by us can be more than humanly possible to meet. So where do we draw the line? 

It feels like the time or effort needed to take care of ourselves means we need to fail something or someone. Deciding to take care of ourselves at the cost to someone else feels selfish.  Yet we don’t live in a vacuum, and our actions or inactions affect others. External support is a reasonable need to grant ourselves permission to do what’s good for us.

Most of the time, I’m the harshest critic of my decisions and the most demanding of what needs to be done. No one else is usually complaining.  I’m comparing myself to a fictional ideal that might not be possible for anyone, even if they’re in perfect health.

I’m reminded of the scene from the 1996 movie Jerry Maguire where sports agent Jerry (Tom Cruise) begs athlete Rod Tidwell (Cuba Gooding Jr) repeatedly to, “Help me help you,” in hopes of helping them both.  

I hadn’t remembered the rest of the scene. Rod laughs at and mocks Jerry until Jerry walks out frustrated.  Rod calls out after Jerry, “You see, that’s the difference between us.  You think we’re fighting, and I think we’re finally talking.”

I like that shift in approach.  When I notice feeling unnerved, unsettled or stressed, what’s going on? Do I identify and heed my needs, or do I push through? Am I fighting myself, or am I finally talking to myself?

Once I stop fighting myself and acknowledge I need to make a change, looking at my situation and needs as if it were a loved one’s experience helps me gain perspective.  I imagine a loved one coming to me for advice. They perfectly describe living with my situation, challenges and needs, and they ask what they should do. What would I suggest? 

If they respond as I would, they resist my logical and obvious recommendations. They explain all the reasons why they can’t do what I think they should do. And the problem remains. 

When I’m honest with myself about why I’m resisting, it’s embarrassing how stubborn and illogical I’m being under the guise of strength and responsibility. I know what I need, and there is a way out of it that doesn’t demand I be a martyr.  The answer for what I should do isn’t complicated or a mystery.

With the holiday season upon us, this year I’m committing to a few specific actions to combat overload:

1. Check in with myself daily, and honestly assess how I’m doing.
2. Do something each day that I’d qualify as self-care. If I’m resisting doing what I know would be best for my needs, it warrants self-examination.  
• Who or what is stopping me? 
• Why is it a problem at all?
• Is the stress worth the reward?
• What is the cost of ignoring my needs? 
3. Share my plan and ask for support from trusted confidantes.  Let them know when I’m feeling conflicted. 
4. Give myself permission to put my needs first, and support others in doing the same.

Whether large or small, stress and burdens carried alone are brutally difficult. They become manageable when shared. If we mutually work toward helping others help us, we’ll all be better off. 

Post Script If you’re interested in watching the scene described and not opposed to nudity, here’s a link: Jerry Maguire: Help Me Help You 🏈 (MOVIE SCENE) | With Captions 

Lifelong Learning

When the kids return to school, traffic patterns change and I may follow the school bus on my morning commute to work.  There are fewer tourists in my town and fewer colleagues away on vacation. Stores and ad campaigns feature school supplies and products useful for students going back to school. “Back to School” season is a terrific annual reminder that learning doesn’t end after finishing school. I consider how much lifelong learning I’ve done and hope to attempt, the possibilities grow, and I’m motivated to plan more. 

A lot of learning comes naturally.  Something breaks, and I search online for a video on how to fix it. A health issue flares up, and I search for information on causes, symptoms, and treatments. Books and documentaries are suggested, and I’m intrigued enough to check them out. A social media feed pops up with something that teaches me something I didn’t know.  This can be a lot of learning, and it can be enough.

Life circumstances often compete with life goals, and they can hold us back from dreaming big. Multiple Sclerosis affects my health and beliefs about what’s possible for me, and so does aging, work, responsibilities, and finances. Mini doses of learning keep things interesting, and they can remind us of the possibilities.   

What excites me? What’s holding me back? How may I learn more about it?  

Options for learning abound. Consider local or virtual workshops, classes, and training. Conversations with friends and internet searches can lead to fantastic opportunities.  Dream big and work backward for what steps can lead there. Small steps today can change the trajectory of life and lead to big achievements later.  

Learning, growing, connecting, and contributing are tremendous activities for fulfillment. Being able to do some things may not be possible as we envision them, yet learning about them can broaden our perspective on how we could incorporate them into our lives. Ultimately, learning is not about the information, it’s about how it changes us. It changes how we perceive, understand, and interact in life. The possibilities alone are exciting! 

Traveling With Health Issues

My definition of travel has changed as my Multiple Sclerosis symptoms have progressed. Travel used to be trips that include overnight travel, and even one night away from home might not have qualified as “real” travel. Now travel includes going places for periods of time that disrupt my daily routines, and that means day trips solidly qualify. Travel includes going anywhere outside of my normal routine. It demands having health issues considered and accommodated to ensure I have fun, meet my body’s needs, and don’t stress too much.

Two adages help me plan for travel:

“If anything can go wrong, it will (and at the worst possible moment).” 

~Murphy’s First Law

and

“Wherever you go, there you are.” 

~Oliver’s Law of Location 

I see Murphy’s law as a comical yet accurate warning, not pessimism. Things rarely go exactly as planned.  It takes foresight, preparation and back up plans to help navigate glitches with less stress. I see Oliver’s Law of Location as a fact with corresponding guidance to bring what I need. If I don’t plan ahead, the routines and things that keep me well in daily life might not be wherever I am.

Historically, I’ve prepared for trips by detailing a fairly straightforward packing list of clothing, toiletries, documents, electronics and medications. I’d consider how many articles of clothing and footwear to bring, match apparel to the weather and planned activities, and bring travel sized grooming products.

What would get missed were the things I use off and on to manage MS symptoms.  Traveling always causes one or more of my MS symptoms to exacerbate, and I wasn’t always prepared with food, products and equipment I have throughout my home that help me keep symptoms in check.  

It’s easier at home to accommodate my needs and preferences. It flows, because I’ve spent a lot of time creating routines that work for me. At home, I have bananas in the kitchen, muscle tonic in the fridge, a yoga mat in the living room, supplements and medication in the medicine cabinet, and magnesium sprays, CBD lotions and body washes in the bathroom. Everything is where I need it. 

Planning trips and leaving a normal routine takes effort, and it takes even more preparation and organization with health issues to address. What really helps me prepare for travel is looking at what makes me anxious or unsettled and addressing them one by one.  

Questions: What do I worry about, and what stresses me out?

Answer: I worry that I won’t have what I need to do impromptu activities. I worry about being able to keep up with others and the itinerary. I worry about not having freedom to deviate from the schedule or get rest when I need it. I worry about symptoms getting out of check and not having the products I have at home to address them.  

My worries stem from my common and persistent MS symptoms of spasticity, constipation, and fatigue. Recognizing this and planning ahead helps reduce my anxiety about managing them away from home. 

Spasticity is the term for when the nervous system misfires signals to limbs causing spasms, tightness, achiness, and cramping. Spasticity causes pain, and I combine a lot of methods in daily life to keep it in check. Spasticity makes flying and driving long distances endurance events.  While these activities are not technically endurance sports, I contend MS makes them qualify. I’m pushing myself to stay in confined spaces and positions that cause pain and muscle spasms. 

It requires diligence with supplements, lotions, stretching, and hydration. I’ll increase my medication dosage for the day and stretch at every opportunity. I’ll do full body stretches at rest stops and in airport terminals. Stretching in a car or airplane seat is more difficult but not impossible. In confined spaces, I can massage my calves and forearms, point and flex my toes to stretch my calves, and do wrist and hand stretches to relieve pain in my forearms. I don’t like drawing attention to myself, and I try to be discreet.  That said, I think it helps remind others to tend to their own bodies.  I’ve noticed others in airport terminals waiting for a flight notice me, get up from their seats and do their own stretches.

Constipation is deemed to be embarrassing and a personal issue.  Let’s remember it’s a human issue, and lots of people with or without health issues experience it at one time or another. The more informed we are, the better able we are to treat it. When MS damages the central nervous system, it can cause bowel and bladder issues.  Stress, dehydration, and changes in diet and routine can all contribute to constipation. Travel often includes all of these things. 

Anticipating, monitoring and treating constipation early can really make a difference. Fruits and vegetables (with high marks for bananas and pears), magnesium supplements, stretching (torso twist is great), and staying hydrated help me a lot.  

Fatigue is a common MS symptom, and it challenges me in the best of circumstances. Travel typically increases exertion, engagement, decisions to make, and overall stress level. Building in rest breaks, hydrating, keeping up on medications and supplements, and including fitness activities help manage it as best as possible.  

I wish I was low maintenance, and I strive to keep vanity in check, but MS has made me high-maintenance. I console myself with saying that at least I’m doing the maintenance and not pushing it on other people. I get exhausted thinking about everything I do to address my MS and general health, and I don’t even do all I feel I should. Periodically, I remember that even if I can do it all, I don’t need to do it all alone. I can ask for things that will make my life easier.  People are highly receptive and willing to help. They’ll stock bananas so they’re ready for me. They’ll go for walks with me or make sure the schedule allows time for movement.  They don’t make me uncomfortable or act judgmental. They’ll ask if I need anything, help me, and provide gentle reminders to tend to my needs. 

I enjoy travel immensely, and I endure what it takes to make it happen. Travel will cause MS symptoms to rear up, and it is hard on my body. I’m able to travel, I enjoy it, and I know it makes my life better. I do what I can to minimize the challenges and accept the hassle, because I still can and it’s still worth it.