Dealing With Seasonal Pressure

Fall consistently brings increased obligations, stress, and fatigue for me. I notice it’s happening when I feel pressured, stressed, and frustrated. The paradox is that when I realize something needs to give, the solution always requires more work. 

Colder weather, fewer hours of daylight, and cold & flu season consistently increase my multiple sclerosis symptoms. Each year, I find myself creating a new plan to adjust. By writing this, I hope to capture my thought process and make each year's adjustment less painful. 

A five-step plan for when I notice I’m stressed:

1. Get my bearings
2. Decide what matters
3. Build my team
4. Plan for success
5. Reflect

Get my bearings

When I feel extra pressured, it always helps me to take time to get my bearings. I often think of it as getting my head on straight. I assess how I’m doing emotionally and physically, and I try to identify what is causing me to feel stressed. 

Talking about problems can help, but I find I need to get my thoughts out in writing. It can be handwritten on scrap paper or my journal or typed into my phone or computer. The process of taking it from my brain to something written helps me figure out what is mine to own and resolve, what is something I can influence, and what I need to let be. 

I’ll consider context. Is how I’m feeling in line with the importance and urgency I’m giving it? Is it all mine to fix? Or can I right-size how much I need to own?

I want to remember that feeling stressed is not weakness. It’s a natural, human experience, and it is a wonderfully effective motivator for change. Sometimes we need to feel bad enough before we accept something has to change. 

Decide what matters

What do I care about, and which aspects of my life need help? Presumably if something is causing me stress, it matters to me. That said, I need to make sure the rest of my needs are still met. 

When I juggle obligations and hopes with the time and energy I have, there’s never enough of either to do it all. When I’m clear on what matters and the small things I can do to stay on track for my goals, it's doable. If it’s too much to expect improvement, the goal might be to maintain or minimize decline. 

Work, home, relationships, finances, health, exercise, creativity, and adventure all matter to me. They compete for time and often seem incompatible. Knowing they all have value helps me balance how much I do of each. Doing some of each of them can be nurturing, and too much of any can be sabotaging. 

Build my team

I don’t have to do it all. I feel like I do, and I remind myself frequently it’s not true. Who can help carry the mental load and help with physical tasks?

My team includes family, friends, colleagues, medical providers, and paid services. Adding paid services has been a recent shift in perspective. 

Just as I pay someone to harvest my food and cut my hair, it’s okay to pay someone to do other tasks that would make my life better. That’s been an interesting lesson. I thought I should always do things I’m able to do. Can I clean my home? Yes. Can I make my food? You bet. Am I lazy if I don’t do all the cleaning in my home or make all the food in my home? That’s a harder question to answer no. It takes intentional rethinking of old beliefs to give myself permission to pay for cleaning and meal services. They feel indulgent and extravagant, and I’m learning to see them as resources that support my well-being while I’m working full time and managing my health.

Plan for success

Frequently, my go-to solution to alleviating stress is to wish for more energy and more time. That’s likely true for many people, regardless of health status. Living with daily MS fatigue and other symptoms adds even more challenges. It’s frustrating, but it motivates me to be intentional about what I do.

What needs to be done, and does it really need to be done? If it does, who has to do it, how long will it take, and how often does it need to be done? Some things can be done by someone else, some require coordination, and others can’t be outsourced at all. 

Household chores can be shared with others in the home. I have flashcards for routine household tasks. I’ll sort through them and pull out the ones that need to be done that day or week. Putting them in a visible location in the kitchen helps me stay on track when I might forget, and it lets others in the home know they need to be done. 

We use a phone app for our grocery list, so the tasks of keeping stocked and making purchases are shared and coordinated. Both systems reduce my personal responsibility and cultivate a shared team effort. 

I recently expanded my team to include cleaning and meal services. I still have to clean, but now they come every other week to help me stay on top of everything. Meal service has helped with healthy, ready-to-eat options when I’m extra fatigued and need more rest after work. They add variety to my diet and get me to try new things without spending a lot of time deciding, purchasing, and cooking. 

I can’t delegate or outsource personal fitness. For this, I try to combine things I enjoy. Fitness classes are great for the routine and camaraderie. Walks with others are perfect for combining movement and relationship building. 

Reflect

Reflecting on what’s done doesn’t seem necessary, but it’s transformative when I do it. When I focus only on what still needs to be done, my stress level stays high. When I reflect periodically and acknowledge how much is getting done, I feel productive and on track. My body relaxes just writing that last sentence. 

It’s good to have people close to me who will tell me when I’m being hard on myself. I will feel like I'm not doing enough when there’s so much to do, and they’ll remind me how much I do. 

I’ve learned I will always overextend myself and will have periods of stress that signal I need to adjust. Knowing what’s worked in the past and exploring options for the future with an open mind will help me live as well as I can. 

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.

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.