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. 

Judgment Can Help or Hinder

What do I wish others knew about living with Multiple Sclerosis? I wish they knew their judgment can help or hinder us.

Everyone judges, and it’s not a bad thing. We all have opinions, hopes, fears, disappointments, appreciation, admiration, frustration, and expectations. They come through in our interactions even when trying to hide them. It’s not about the judgment, it’s about how it’s expressed. Whether that judgment comes through as cheerleading or criticizing matters.

Fears, disappointment, frustration, and unmet expectations can be helpful when approached with compassion and interest. They’ll drive a wedge if expressed as disapproval.

Hopes, appreciation, and admiration can be encouraging when allowing for imperfection. The same can be destructive when interpreted as conditioned upon things beyond our control.     

We know we’re being judged. We judge ourselves too. We compare ourselves to others. We wonder if we’re doing enough and if what we’re doing makes a difference. We judge ourselves for our successes, shortcomings, achievements, and failures. We live with grief for what we’ve lost and what we might lose. Living with MS is relentless and exhausting, and we judge ourselves for our ability to manage it.

If you’re feeling frustrated with someone with MS or want to improve your relationship, consider how you feel about our MS. Do you accept it? Do you feel like we’d do better if we’d just do what you advise? Do you resent how it affects us? How you answer those questions is telling, but there’s no perfect answer. Being self-aware and considering how you express your feelings can be a starting point for improving any relationship.  

If these questions feel invasive, consider a person with MS or any chronic illness lives with a societal norm where our health, life choices, and daily decisions are open game for group discussion and unsolicited advice with the best of intentions to help. The conversation isn’t inherently awful, but it is only productive when done with genuine respect.

Your judgment can be a teammate helping us navigate our challenges, or it can be an authority figure to avoid. You get to choose.

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