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. 

DIY Self-Care

Self-care: Anything that nourishes me physically or emotionally, 

reduces stress, or improves my well-being.

Self-care is necessary and often neglected. That said, it only feels neglected when we’re feeling stressed, overloaded, or having a hard time. It’s important to give ourselves credit for all we do to care for ourselves and others every day.  Perspective matters. If we remember how much we’re already doing, it’s easier to show compassion for ourselves. 

Self-care by definition means taking an active role in taking care of ourselves, physically and emotionally. It implies it’s solely a Do It Yourself (DIY) responsibility. When feeling overwhelmed or not well, it’s natural to believe the answer is to just try harder. This is when we need to remember we’re like a DIY home project: we can’t and don’t need to do it all on our own. 

DIY home projects include decorating, renovating, repairing, and maintaining our homes without hiring a professional. We wouldn’t expect our homes to be well-maintained or improve without effort. If we can’t afford to hire professionals, we need to know or learn how to do it ourselves. I’ve done a lot of DIY home projects, and all of them involved using tools, materials, and knowledge created or compiled by others. 

Those of us without great financial wealth serve as our own personal chef, housekeeper, chauffeur, financial advisor, accountant, and fitness trainer. When we recognize how much we do in all of these and other roles, we should consider ourselves daily superheroes! 

I like remembering self-care is DIY, because it reminds me to prioritize it. I have people who care about me and will help, but ultimately, I need to be responsible for identifying and addressing my needs. If I don’t know what I need, and I don’t share what I need, no one can help. If I’m clear on what I need and I need help, I can ask for help. If I ask for help, it’s possible to get help. 

I’m a fan of getting credit for what I’m already doing. Sometimes feeling better isn’t about doing more or being pampered, it’s about how I perceive myself, the life I’m living, and the people in it. Sometimes I interpret a busy day as rushed, challenging, and frustrating, and others I judge it as productive and rewarding. The difference between rewarding days is usually that I tended to my physical and mental needs. I took moments throughout the day to hydrate, stretch, use the restroom, look away from a computer monitor, and connect with people with interest and compassion. 

It’s helpful to reflect each day, and I use the following questions to help assess how I’m doing and consider what will help me with my self-care:  

• What nourished me today physically and emotionally?
• How did I show compassion for myself or others?
• If I’m feeling low, do I need to make a change or get help?
• What did I do today for strength, flexibility, or movement?
• Did I hydrate and eat food with fiber and nutrients?
• What was stressful today, and what would help? 

These aren’t pass-fail questions. They’re helpful as a self-care tool for reflecting and being honest with myself. Knowing I’m going to consider them helps me include healthy habits throughout the day. Answering them helps me decide how best to tend to my needs. 

Some days self-care will mean resting without guilt. Others are pushing myself to achieve something that fulfills my sense of accomplishment and purpose. Self-care sometimes requires striking a task from the list without doing it. All of these situations and decisions are worth celebrating as successful self-care.

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. 

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!

What My MS Diagnosis Taught Me

My Multiple Sclerosis diagnosis was sudden and unexpected. Unlike others who undergo years of testing, monitoring, and uncertainty, my diagnosis occurred within two months after a major MS exacerbation. While it was a turbulent and scary experience, at least it was relatively quick.  

Because my diagnosis was swift and not anticipated, I learned serious illness can be invisible. Being healthy and having a chronic illness can both be true in the same body.  Things are not what they appear. Ultimately, I learned my normal wasn’t normal.  

My diagnosis taught me there would likely be drastic physical, irreversible consequences if I continued to live my life as I had been. Because I had so many lesions in my spinal cord and hadn’t recognized my MS symptoms for what they were, I realized MS had damaged my body for years before my diagnosis. This made it clear to me that regularly working long hours, pushing myself to exhaustion, and putting other people’s needs before my own would lead to further disease progression and disability. I understood there would be things I couldn’t control, and in the best of circumstances I may not be able to change the course of my disease, but I was determined to give it my best shot to change the trajectory of my health.  

It’s been a long, methodical process changing my life to align with my body’s needs, and I’m fortunate it’s made a difference. It’s been scary, and I learned I can gather the courage I need to get through the scariness. It’s been exhausting, and I learned I can and must build rest into my schedule. It’s been heartbreaking, and I learned the right relationships will accept and adapt to change. I learned I can live with people’s disappointment, and I learned people who truly care for me won’t be disappointed when relationships, plans, and expectations need to change for my well-being.

I learned I could still have ambition, but I needed to have realistic and compassionate expectations for myself. I realized I was the one putting a lot of pressure on myself, and I learned I can live with disappointment when I can’t do everything I want. I wanted to be a superwoman, and I learned I needed to rethink my goals. I learned I can still have purpose, fulfillment, and tremendous joy by accommodating my body’s needs. 

In more than 15 years since my surprise MS diagnosis, I’ve changed my partner, my home, and my career path. It’s been a wild ride dealing with challenges, improving my self-awareness, and adapting continuously. I didn’t choose this life, but I’ve chosen how to live it. 

I’ve matured, evolved, and become more myself than I ever would have allowed without this initial diagnosis and subsequent journey. My relationships, career, and experiences have far exceeded those I imagined before my MS diagnosis. 

To anyone experiencing a new MS diagnosis, I wish for you all you need to navigate an extremely challenging life event. I hope you have or find people to support you in your journey, and I hope you find contentment and fulfillment within the limits of things beyond your control. I promise it’s possible.