Tuesday, April 16, 2024

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!

Wednesday, March 20, 2024

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. 

Wednesday, February 21, 2024

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.
Purple background with the word "judgment" in black handwriting

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.

Sunday, November 19, 2023

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 

Sunday, September 10, 2023

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! 

Sunday, July 23, 2023

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
“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.

Monday, June 12, 2023

Summer Heat and Changing Goals

Each day, week, weekend, season, and year, I like to think about what my goals are. What will I want to accomplish?  When it’s over, will I have a sense of fulfillment for the choices I made and how I spent time?

Each season or time of year has a different set of inherent challenges that aging and Multiple Sclerosis make more challenging. Spring and autumn consistently trigger fatigue and body malfunctioning for me. I blame the weather changes and obligation surges. 

Summer brings nice weather that I look forward to and also dread. Summers spent chasing the sun and building a dark tan no longer appeal to me. Basking in the sun feels good for moments and not hours. Staying cool and protecting myself from the sun and heat have become the objective. I look back at photographs from gatherings in 90-degree weather, and I can clearly see how I’m fatigued and not thriving. My smile tries to mask the internal suffering I’m experiencing. When overheating wasn’t an issue for me, I didn’t understand why it was so troublesome for others. Now I get it.

With time and more experience with how MS affects my body, I can anticipate how heat will trigger symptoms that are pseudo exacerbations. It helps to recognize them as temporary, because anxiety and stress can raise body temperature and worsen the experience. Thankfully,  am now less fearful of the loss of feeling in my limbs and the debilitating fatigue that comes on. I am more interested in being proactive about planning for comfort and enjoyment. While pseudo exacerbation symptoms are temporary and not disease progression, they still aren’t fun and are worth trying to avoid. Symptoms are uncomfortable, physically and emotionally painful, and frustrating.

Solutions are highly individual. It’s all about setting myself up for success before it gets to be a problem. Because it’s not a gradual process of my internal body temperature getting warmer, planning ahead is crucial. It increases exponentially and is often too much before I can gracefully exit social interactions. I can go from feeling slightly uncomfortable to not okay and needing immediate change in a moment. It’s similar to hot flashes associated with menopause, but for me it differs for the duration and lingering symptoms. Fatigue hits hard and lasts. If I wait until I’m overheating to come up with a plan, it’s often too late. I’m not in my best decision-making mind at that point. Having options and pre-planned back up plans make it less stressful considering options, accommodating my needs and maintaining polite demeanor. 

Planned events require me to adjust to the environment and navigate social norms. How can I dress, use cooling accessories, influence the location to be in the shade, or limit time where I’ll be in direct sun? Can I do anything to reduce the potential that I’ll be at the mercy of temperatures that trigger my MS symptoms? Can I anticipate challenges and make sure people know I may need to move locations or leave early? Advance notice can help reduce the potential for surprising or offending people. 

Unscheduled days allow me to adjust my plans to my body’s needs and limitations. Do I have the flexibility to design my day to best accommodate my wishes and environmental circumstances? Can I reschedule some activities to another day? Will the weather be different tomorrow, later this week or next? Can I do things early morning or late evening when it’s naturally cooler? The bonus of choosing non-peak times for activities is there aren’t as many crowds. It can be more peaceful and less chaotic. The potential for sunburn is minimized, and I can rest mid-day without feeling lazy. Knowing I already went outside or will go out later in the day allows me let go of the feeling that I’m missing out.

I look forward to sunny, warm days, but I’ve come to relish overcast weather, light rain and breezes. They allow me to enjoy being outside without conscious planning to avoid triggering my MS symptoms. Ideal weather depends on my goals and how my body feels, and it changes moment to moment, day to day, and year to year. Trying to force my body to behave like it did when I didn’t have MS is a futile and frustrating endeavor. Aligning my plans and outdoor activities with my body’s needs leads to less stress and more fulfillment. While I have resistance to being a bother, usually someone else will express gratitude when I speak up. My issue may be medical, but the desire for comfort is universal.  

This summer, my goals are to design my schedule to align activities I want to do with the weather and my body’s preferences, be kind to myself, advocate for my needs, and enjoy all I can still do.