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.

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. 

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.”

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. 

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 

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.

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.  

Tracking Symptoms & Treatments with Compassion & Encouragement

With each new year, I think about what’s ahead, what I can control, and what will make the next 12 months fulfilling for me.  Instead of pushing myself to do more or be better, my approach this year for health management is to track what helps me manage my health with methods that are easy to use and visually informative. 

Knowing what my body needs is an ever-changing puzzle, and tracking provides clues for what could be the cause or remedy for things contributing to health challenges. Add aging and menopause to living with Multiple Sclerosis, and knowing how to best manage my changing body is not easy. 

Tracking helps reveal immediate issues and needs, and over time it divulges patterns and trajectories. It can show similarities and differences in my health condition over time, and it can indicate overall improvement or decline. 

Monitoring can be as detailed or general as each person likes, and it can ebb and flow over time. Periodically entering full details for how I’m doing in a moment is terrific for long term health status review.  Simple checklists and charts can provide reminders to do things. Over time, they can give clues to explain changes throughout a week or month. 

I like systems that easily fit into my habits and schedule instead of forcing me to make drastic changes. I will do things that help my health when I remember, and often a note, comment or routine is enough encouragement to make good choices. When my routine changes, it can completely derail good habits that keep me well.

 

I’ve often noticed when spasticity and leg pain increase, I’ll realize I’ve forgotten or neglected to do some or many of the treatments proven to help me manage spasticity. I may have run out of supplements or medication, missed my daily banana or stretching, or have just been dehydrated.  No one thing on a single day causes my MS symptoms, but missing one or more a few days in a row can really throw me off track.  

Without tracking, I don’t notice the correlation as readily. With tracking, I clearly see how frequently my biggest MS symptoms occur AND which good health measures I’ve done or haven’t done.  

I use both digital apps and a hard-bound journal to track my symptoms and treatments, and I like them both for different reasons. I’ll share examples for each method in this blog post.

MSAA has an app My MS Manager that is a terrific comprehensive tracking tool for monitoring MS symptoms, treatments, and well-being. I particularly like that the app is flexible and can be customized with items to track or receive reminders to do them. In the daily journal section under “Treatment Taken?” section, I added prescriptions and treatments that I know help me with the frequency desired and an option to set up reminders.  Items can be added from a standard list and custom items can be created. To track each item on a given day, I can easily click yes, no or not required for the question, “Did you take this treatment today?”

Seeing my individual symptoms and mood charted over long periods of time and being able to compare current and past data is invaluable.  Knowing I’ve experienced similar peaks and valleys helps me weather today’s challenges. Seeing what helped previously offers suggestions for what might help this time.  

I use the app My MS Manager to provide comprehensive tracking, and I use other apps for fitness and activity tracking as well. Syncing my watch and scale to other apps makes it easy to access data without added effort or time on my part. 

  

Technology is incredible these days, and apps are convenient. I always have my phone handy, so it’s a good option for a lot of my tracking.  

Yet I learned long ago there’s never one solution that will meet all my needs. I like pen and paper for its flexibility and visual reminders.  I use it to track and remind myself to do daily or weekly things that help me maintain my health. I use a nicely bound journal with blank dot grid pages.  This approach works great for me for symptoms that are helped by a long list of treatments.

By entering treatments and activities next to the symptoms I’m managing each day, I have a built-in visual to connect how I’m feeling, why I might be experiencing symptoms, and what I can try to feel better. I’m including an image below to show the format I’m using and is working well for me.  

Page from my journal showing tracking example

In this example for spasticity and leg pain in my extremities, I have a number of things that help reduce pain including stretching, movement, supplements, daily banana, a vinegar muscle tonic, staying hydrated and medication.  Tracking on the same page the symptom or challenge along with actions I can take helps me see easily what else might help or if I am already doing everything I know helps and it’s getting worse. It was clear to me that when my leg pain became excessive that I could get back on track with stretching, supplements and the vinegar muscle tonic. It’s getting better every day, and I can see that with my chart. 

 

Please know that MS symptoms can often be unpredictable and uncontrollable. Tracking doesn’t prevent relapses.  This may be obvious but it is important, so I’ll say it again:  

Tracking does not prevent relapses.

If you have a relapse, don’t blame yourself. If you know someone who has a relapse, don’t blame them. It’s easy to judge others and try to assign blame, but it doesn’t do anyone any good. We’re all doing the best we can with what we have and where we are at each point in our lives.  Take any Judgy McJudgy-Pants conclusions elsewhere. Okay, this side rant is over and we’ll get back to tracking health items. 

 

It helps me to look at tracking as a monitoring tool rather than a long list of things to do that can put more pressure on myself. I don’t need more pressure, stress or judgment, even if it’s from me. I need to know I’m trying, and I need to remember I’m doing the best I can. A tracking tool can remind me without requiring me to take action. I still get to choose what I will or won’t do in each moment. I aim to tend to myself with compassion and encouragement rather than judgment and harshness. I wish all this for you too. 

MS Relapses: An Evolution of Perspective

Multiple Sclerosis relapses are scary for the symptoms they bring, and they’re overwhelming for the individual prognosis. Sharing our history and perspectives on relapses can help each of us gauge how we’re similar and different. It can show us how we are at different locations on similar paths or how we’re not on the same path at all. Anticipating how long my path is, what I may encounter along the way and how quickly or slowly I’ll reach each phase helps me put today in perspective and plan for the future.

 

Years 1 through 5 after MS Diagnosis were full of relapses, and my primary goal was to not have a relapse.  Those years were full of stress, confusion and frustration. The amount of information to learn and apply was staggering. The reliance on doctors to provide testing and assessment of whether I was having a relapse or not made me feel helpless. My health journals overflow with information to help me make sense of my body. Each relapse felt like failure. 

 

Year 5: Blog Post - Learning To Pause Helps Me Cope With MS Symptoms

I started blogging, and my lessons learned became more accessible for me to find later.  This one is a go-to resource that reminds me to pay attention to what my body needs while accommodating what life requires.  

 

Year 6: Blog Post - I Feel Like A Rock Star!

I was declared “stable and in remission.”  I reached a point of confidence where I felt like I could finally tell if I was having an exacerbation or not.  I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t.  I’d learned my body enough to know which symptoms were normal for me.  I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity. 

 

Year 8:  Blog Post - When is it An MS Exacerbation?

I documented and shared my mental checklist for relapse self-diagnosis with examples. I still read it whenever I wonder if I’m having an exacerbation.

 

Year 10: Blog Posts - Managing MS Relapses

People with MS do not have complete control over whether or not they have a relapse.  If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible.  Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and try to make the fear manageable when they do happen. This post includes 13 Guidelines to follow that serve me well daily, then and now.

 

Year 13, Present Day: Symptoms without relapses: I look back to achieving the highly sought-after status of stable and in remission at year six with fondness and appreciation for the feeling of success.  I envy my naiveté thinking that without relapses I’d be safe from disease progression.  

 

The truth is nerves with old lesions can function for a while and give out much later.  Some nerve function can repair, but it can also decline causing symptoms to worsen long after the relapse that caused the lesion.  

 

The majority of people with MS start with relapsing-remitting MS. The statistic that about half of people with MS transition to Secondary Progressive MS in ten years is based on a time when disease modifying medications didn’t exist.  Since these medications are intended to reduce the frequency of relapses and delay disease progression, I’m hopeful I’ll stay in the RRMS phase or take much, much longer than ten years to enter the SPMS phase. Differentiating between what is possible, likely or probable is tough.  There are no guarantees, nor are there inevitable outcomes.  

 

With or without relapses, MS is with me and will shape my future.  What I can do is keep doing what I’m doing. Keep learning, monitoring, adapting, and factoring my health into my daily decisions and long-range plans. Appreciate the people on this journey with me, and make sure to have fun along the way.  Take very good care, all. 

 

 

Links to posts mentioned:

• Learning To Pause Helps Me Cope With MS Symptoms https://stacieprada.blogspot.com/2013/12/learning-to-pause.html
• I Feel Like A Rock Star! https://stacieprada.blogspot.com/2014/02/i-feel-like-rock-star.html
• When Is It An MS Exacerbation? https://stacieprada.blogspot.com/2016/01/when-is-it-ms-exacerbation.html
• Relapse Management   https://stacieprada.blogspot.com/2018/03/managing-ms-relapses.html

 

My Letter to Oprah in 2009

On March 17, 2009, I watched an episode of Oprah featuring Montel Williams and his experience with Multiple Sclerosis titled, “After the Diagnosis.” Given I worked full time, I didn’t record shows, and the episode would have aired on daytime television, I’m guessing I was home sick dealing with the flu, MS issues, or most likely both.  

I wrote a letter to Oprah the following day. 

The key points I was trying to make were to show appreciation for that episode and previous health-related episodes, and to encourage her to do more shows featuring regular people with MS. As such, I cringe a little that I shared so much about myself in the letter. That said, I grant myself grace and understand I wanted to explain why I believed my opinion had value.  

This is the letter in full. 

Thank you so much for focusing on Multiple Sclerosis yesterday.  I was very excited to hear Montel Williams share his experience as I have had difficulty finding positive role models with MS with whom I can relate.  I sympathize with his depression and difficulty adapting to the uncertainties of MS.  I also appreciate his openness in describing the disease and the symptoms he suffers.  His discussion surely helped many people to understand the hidden difficulties of MS.

I did finish watching the show yearning for advice from someone who has genuinely accepted the disease and found a positive outlook.  Montel’s depression left me unsure of his advice.  I wish for him joy and peace in this life despite his challenges.

Dr Oz was inspirational with his compassion and sound advice.  I see that without much guidance following diagnosis I naturally proceeded to follow his suggestion and consumed myself with learning about the disease.

My diagnosis of Multiple Sclerosis in June of 2008 completely blindsided me.  Even after my body became numb from the bra-line down for a few weeks, I still thought of myself as an extremely healthy 37 year old woman.  I exercise regularly, monitor my weight, eat organic food and locally grown produce, and try to balance life.

I sincerely thought I must have a pinched nerve.  At the time I actively participated in a gymnastics class each week, and despite fatigue I ran a 12K a few days after half my body numbed.  My diagnosis came quickly following what I have since learned to detect as an exacerbation.

Immediately following my diagnosis, I underwent steroid therapy that left me a wreck emotionally and kept me home from work.  I consider it happenstance that your program aired a week of shows focused on health.  Among them was the incredibly inspirational Kris Carr with liver cancer who affected me deeply with her attitude that we’re all dying, some of us just have more information.  Randy Pausch, with dignity, underscored the fact that it can always be worse.

I now live with on and off symptoms including pain in my hips and neck, fatigue, insomnia, memory difficulties, numbness and lack of coordination.  I take a disease modifying drug – a daily injection – to hopefully slow the progression of my MS.  I’ve given up the weekly gymnastics class, but I have a gym mat at home so I can stretch, do backbends, back walkovers and handstands.  I walk two miles with my husband each day.  On good days, I have to slow down to keep pace with him.  On bad days, he has to slow down to keep pace with me.  

I work full time in a demanding field and actively work at keeping a balanced state of mind.  I’m still in a quest to achieve balance and make sense of my new reality.  As such, I do hope you’ll consider a follow up program with average people coping with MS and specialists in the field.  

I appreciate the information on your website directing people to the National MS Society web page.  Televising the organization and its purpose would have been truly appreciated to support ongoing research for MS prevention and cures.  The organization also provides an amazing amount of support to MS patients, family and caregivers.  

Thank you, Oprah and staff, for your ongoing commitment to be a positive influence in our lives succeeds in making our lives better.

As I reflect on my own life and personal growth over the past twelve years since I was diagnosed with Multiple Sclerosis, I realize that I am part of an entire community creating what I yearned for and couldn’t find years ago. I wanted to learn from regular people with MS. Now there are many bloggers with MS sharing their experiences. See Carnival of MS Bloggers for an amazing single site compiled by Lisa Emrich with an MS Blogging Community indexproviding links to hundreds of them. The site shows how long it’s been since each site posted a new blog, so it’s helpful to see who is currently writing.  

I encourage anyone interested in writing and sharing to do so. Often, we have within ourselves the answers for what we need, and putting our thoughts in print can help us reveal our best path forward. Writing is therapeutic and empowering. Sharing allows us to learn from each other and build upon another person’s insight. It fosters a spirit of kinship that recognizes we experience our MS individually, yet we have a community of people who can relate, provide encouragement, and help keep us going.    

References:

“After the Diagnosis.” The Oprah Winfrey Show. Harpo Productions, Chicago, 17 Mar. 2009.

“Montel Williams Explains How He Deals With His Multiple Sclerosis - Part #2.avi.” YouTube, uploaded by wall6545, 7 December 2009, https://www.youtube.com/watch?v=X3f_SJRjqEo Accessed 31, May 2020.

Emrich, Lisa. MS Blogging Community Index. Carnival of MS Bloggers.

msbloggers.com/p/ms-blogging-community. Accessed 31, May 2020. 

Coronavirus, Multiple Sclerosis, Health Fears & Lessons

With the current coronavirus spreading, wellness is at the forefront of the news.  I live in Washington state where the first confirmed cases and deaths from COVID-19 (the coronavirus) in the United States occurred. My neurologist’s office is in Kirkland, the epicenter of the US outbreak. We have a confirmed case in my community, and others are pending test results.  

I’m writing this on March 8, 2020, and news updates are frequent.  By the time I hit publish on this post, the status of the virus will have changed.  The statistics change often, but the consistent message I hear is this: the virus is spreading; if it hasn’t reached your town yet, it will at some point. 

The dynamics feel a lot like living with Multiple Sclerosis in general.  I can stay as well as I can with nutrition, therapies, activity and good hygiene, but I don’t have complete control over my health. I will do my best by cleaning surfaces often, washing my hands, using hand sanitizer and most difficult of all for me, not touching my mouth and eyes. I’m searching the internet for reliable and MS-specific guidance, and I am happy to see some good resources that answered my specific questions. I need to do everything anyone else should do to avoid having the virus reach any point of entry into my body, and for now keep taking my disease modifying therapy. I will also weigh whether to modify my plans as the virus spreads.  I can do all these preventative measures, and just like I might have a relapse due to MS, I still might get infected with coronavirus. 

It’s interesting to me to see others (who presumably don’t live with a chronic illness) react to the health threat.  I hope they don’t get infected, and I hope they endure and recover well if they do get infected.  Their fear and concern for getting sick make me feel like they’re experiencing what I often experience living with MS. The uncertainty is stressful.  

If they do get infected, I hope they aren’t blamed for not doing enough to avoid getting sick.  I doubt they will, and I think some people would think it’s ridiculous to blame a patient.  But when I liken this outbreak to having MS, I feel compelled to comment on the judgments I hear.  In trying to compliment me on living well with my MS, sometimes people will compare me to someone they know with MS.  They’ll comment that their friend, relative or neighbor isn’t doing very well, but they don’t take care of themselves. These are extremely well-meaning people who care, but I think they’re off-base.  That person who isn’t doing well might not be able to take better care of themselves, BECAUSE they are having too many health challenges.  And if they did have different health habits, there is no guarantee that they would be in better health.  Sure, the odds increase, but there are no guarantees.

The community conversations surrounding preparing for the virus outbreak before it widely affects my community are heartening.  I see offers to shop for and deliver groceries and supplies to our vulnerable friends and neighbors.  I see people creating resources and networks available for anyone who wishes to avoid being exposed or who is sick and needs assistance.  

I hope to use this as a lesson for myself to accept help if needed.  I reluctantly admit I’m a bit independent and prideful, and I don’t often let those outside my close circle know when I could use some help.  I’d rather do without and get through it.  I know this frustrates my friends and prevents them from feeling of use.  As I see my community rising to the occasion with this virus outbreak, I’m choosing to see this as an opportunity of connection.  We’re in this together, and I will work on remembering that when the coronavirus threat is over but my MS is still with me.  

For more information, I found the following to be helpful:

• The Coronavirus and MS: What You Need to Know, MSAA
• COVID-19 coronavirus and MS, MS Association UK
• What You Need To Know About Coronavirus (COVID-19), NMSS

The Changes in Me Since My MS Diagnosis: Kinship & Nurturing My Well-Being

Experiencing life events and trauma can change a person.  We all experience life milestones and challenges, yet they are so personal and timed differently for each of us that how we react or change is never the same.  Losing a loved one or experiencing an illness is different when experienced as a child, a young adult or as an older adult.  Our expectations and life skills are different at each point in our life, and what may be life changing for one may be life affirming for another.  

As I reflect on how being diagnosed with Multiple Sclerosis and living with symptoms has affected me, it's difficult for me to separate it from everything else I’ve experienced in life.  Generally, I think that having MS accelerated my aging and life milestones, but there’s no way to know since it's the only life I live. I think many of my qualities stayed consistent or amplified with age.  There are two things though that rise to the top for changes I’ve noticed in myself since being diagnosed with MS. One is a deeper feeling of kinship, and the other is developing a lifestyle of nurturing my well-being and relationships.  

Feeling Kinship with Others: I feel a kinship with others at a level that I didn’t know I lacked before my own diagnosis.  When I see people with illnesses or medical devices, I see them now as someone I could be someday instead of someone separate from me with disabilities.  I see their mobility devices as signs of strength rather than weakness.  I’m embarrassed to admit it, but my old reaction was one of feeling a sadness and sometimes pity for them. After my MS diagnosis, I realized I was terrified of losing my mobility.  I learned with time how much my identity and self-worth were tied up with my ability to be independent and be active.  I also learned how much I still have to offer if I lose my ability to be mobile and independent.  

I have since met quite a few people who rely on assistive devices and are not able to do all they did when they were younger.  I’ve seen their illnesses lead to a progression from using a cane to walker to wheelchair.  I’ve seen their gradual yet persistent lessening of muscle tone and ability to care for themselves. A few of my friends have passed away, and in their final months I’ve seen their bodies wasted to a level of frailty that seemed inconceivable to still supporting a person with clear cognition. 

My internal reaction has evolved to a feeling of kinship and respect. My external reaction has grown to incorporate always asking before helping. With others, we often only know what we see or hear from them.  Our assumptions of what they want or need are very often mistaken.  When trying to be helpful, we often get it wrong. By moving a chair, we may be sabotaging their plan to use the chair as a means to get where they plan to be. In an effort to solve a problem we see, we aren’t aware of all of the other factors they consider in each decision they make.  A denied offer to help is not rude. I see now how important it is to always respect a person’s independence, allow them to choose whether to accept assistance and honor their wishes.  

Nurturing My Well-being & Relationships:

The other huge change in the me since my diagnosis is what I consider when deciding when to slow down, how I spend money, what I want to do in my life and with whom I want to spend my time.  I still work hard and honor my commitments, but I also consider my health needs daily. If MS symptoms are acting up, I’ll take a hard look at my obligations and see where I can shift, delegate or complete tasks differently than I might prefer.  It’s a very real decision for me to consider if pushing myself to keep working or being somewhere is worth potentially leading to an MS exacerbation and disability.  I used to think work needed to come before my well-being and that if I could keep going, I had to keep going.  This question is a good litmus test to help me make wise decisions for my health.  

With my finances, I balance planning for the future while enjoying the present. I assume there’s not going to always be time or ability later, and knowing I’m embracing living now helps me believe I will look back on my life knowing I made the best decisions for my happiness.  

I consistently give myself permission to try new things and enjoy life in every phase, because tomorrow my health may not allow me to do it. It’s possible I may get fitter or feel better than I do now, but right now I may also be the healthiest and most active I’ll ever be for the remainder of my life. I’ve learned to appreciate my body at both its most slender and curviest.

I now let having fun take priority over my reluctance to appear silly.  I’ll dance or sing when I might not have before.  Singing karaoke would have terrified me in the past, but I pushed myself and had a lot of fun.  Photographs haven’t always been flattering, but I push myself to see them as proof I am enjoying life.  

And then there are the people.  Struggling with accepting my chronic illness motivated me to share more with people and ask more of them.  I have relationships that have grown incredibly richer for my willingness to show vulnerability and accept help.  I feared depending on people or showing weakness would lead to losing relationships and being rejected.  I wasn’t wrong.  I did lose relationships, and it was difficult, but the bonds that developed and remain are solid and fulfilling.  I’ve found that the people who are good for us need to feel needed and trusted.  When we withhold portions of ourselves, we keep ourselves from experiencing how good a relationship can be.  I’m less likely to hide my flaws now, and it enriches my relationships.  It feels good to embrace the aspects of my being that are less than perfect and own all of me.  

It’s possible that with normal aging and without chronic illness I might have changed to tend to my own needs better and feel more connected to other people.  It’s also possible I might have lived a long life without ever needing to change or learn more about others.  Regardless, I’m happy with these changes, and I feel they help me cope with living with MS in a way that feels satisfying and right for me.  

My MS Number: We Became Experts at Adapting to Change Before We Knew We Had MS

I’ve started thinking it should be the standard to have our time with Multiple Sclerosis described with two numbers.  It would be similar to blood pressure readings where two numbers have meaning on their own but give a fuller picture of a person’s health when described together. Our time living with MS could be described as the number of years since we were diagnosed over the number of years we estimate we’ve been living with MS.  

For me, I was diagnosed 11 years ago, and I can estimate my first exacerbation was likely 27 years ago.  This puts my MS number as 11 over 27.  Short hand, it would be written 11/27 MS yrs.

Often when meeting new people, we’re asked how long we’ve had MS.  Those who are more informed tend to ask how long since we were diagnosed.  Given many of us with MS have lived with it a long time before we know it and are diagnosed, those years prior to diagnosis take a lot of words and time to explain. At times it feels like I’m slowing the conversation and forcing someone to listen to a long explanation.  It doesn’t help that the words diagnosis and exacerbation have a lot of syllables and are a mouthful to say in any conversation.

Those 16 years between what I now realize was an exacerbation and the year I was diagnosed were filled with odd sensations, loss of control of hands and feet, bladder and bowel issues, and a ridiculous amount of fatigue that kept me exhausted for years.  All those years, I thought I was healthy and didn’t know they indicated something seriously wrong with my health.  I thought it might just be normal, because symptoms were sporadic or nebulous. I had no way of knowing that my exhaustion wasn’t solely because I was fighting off a cold or stressed out.  

In those 16 years living with MS but not knowing I was, I became an expert on adapting to change without realizing I was adapting to living life with a chronic illness.  

For my fatigue, I put a lot of effort into outsmarting my energy level so that I could get more done with less effort.  I’d organize every aspect of my life.  My schedule, my professional obligations, my home, my finances and holidays all had lists and systems in place to ensure I kept up with everything I wanted done.  

For dropping things or tripping, I could only conclude that I must have been distracted.  I’d vow to pay more attention.  I’d plan to grasp things with intention and lift my feet purposefully.

Bladder and bowel issues were addressed with diet and research.  I’d follow the recommendations available at the library, online and suggested by friends to see if any of them worked.  Sometimes they helped and sometimes they didn’t.  Eventually the exacerbation would subside, and I’d attribute the problems to a disruption in my routine, eating differently or not getting enough fiber.  Looking back, it’s a bit crazy I didn’t realize it wasn’t normal, but it would always improve after a while.  How could I know when I don’t have another body exactly like mine to compare it to?

I, along with many others with MS, unknowingly adapted to MS symptoms just to keep on keeping on.  The relief of having a diagnosis allowed me to add one more crucial factor to consider when making decisions.  The benefit and the burden of this knowledge is an ongoing fact of MS living.  

Pre-diagnosis, I might stay home all weekend to rest and feel like I was deficient.  Post-diagnosis, I not only had a valid reason to rest but a compulsion to rest for fear of causing an exacerbation.  Thankfully, I finally had something that my friends, family and I knew about me that might offset the judgments that I was lazy, didn’t care or was making an excuse to avoid something.  Those closest to me looked out for me and pressured me to do less. The expectations for me and from myself now had a new lense through which my performance was measured.  It is both liberating and confining.  

Post-diagnosis, my challenge has been to find a sweet spot of balance between activity and rest.  Perspective, healthful habits, continual learning and adapting helps. At time I can do my best, and I still won’t be able to adapt enough for the change needed for the circumstances. It doesn’t mean I’m unable to deal with change.  It just means I won’t be perfect in every situation. Notice it, acknowledge it, repair any damage to others I may have caused, learn from it, and move on.  I can’t do better than my best.  That’s enough.

For my suggestions and perspective on organization, see: Getting Organized and Staying Organized: It’s a Lifesaver When Living with a Chronic Illness