Establishing Safety Nets

Back-up plans and safety nets ease my worries. If I know I have options and support, my stresses for the future can be put on the back burner. 

Which safety nets do I have control over? Which are vulnerable and might not be reliable? How strong are my safety nets, and where are the gaps? 

There are safety nets for daily needs and long-term needs. They’re useful for health care, housing, finances, friendship, physical health, and mental well-being. 

Safety nets aren’t just for taking care of my needs; they’re also for taking care of the people and things relying on me. With colleagues, I share what I know and how I navigate issues. The more they know, the better they are for having backup plans if I’m not available temporarily or permanently. Mentoring and sharing help reduce stress for things I do with them and for them, and it helps all of us relax. 

When I was diagnosed with MS at almost 38 years old, I feared MS progression would make me unable to work, compromise my health insurance, and lead to immense difficulty surviving. The statistics said I would likely need mobility aids within ten years. Suggestions were to have a single-level home by the age of 55.

The nature of my MS lesions, the frequency of my MS exacerbations, and fear of the unknown led me to believe it was very likely I’d have difficulty walking as my MS progressed. 

That was 17 years ago. I’m nearing 55 years old, I work full time in a job that is the highest level of my career, and I live in a home with stairs that isn’t easily conducive to needing a mobility aid.  MS symptoms take effort to manage, but I still have full mobility.

I’ve decided in life to plan for the range of possibilities, but I don’t want to skip phases out of fear. That said, I do have vague backup plans. If tomorrow I woke up unable to walk independently, I could have a chair lift installed on the stairs pretty quickly. I have people who would be willing to help. 

When I was younger, I had a car with a manual transmission, and I could navigate the stick shift just fine. Then I hurt my Achilles, and recovery meant I had to keep off that foot.  I navigated work, home, and shopping on foot using crutches and a knee scooter.  I couldn’t drive my car anymore. Fortunately, I had access to a car with an automatic transmission, and I could still get to work. While it was a huge inconvenience, it was doable. It was temporary, but it was a terrific learning lesson for how much of my life relies on my mobility and energy level. Just hopping from the coffee maker to the sink, coffee beans, and mugs in different areas of the kitchen showed me how much walking my morning coffee routine required. 

I think about my routines with this in mind. Can I keep things together and reduce effort? How would I change things today if I knew I couldn’t walk tomorrow?

I’d have options and support for short-term accommodations, and I have options for adapting to long-term needs. Regularly monitoring how I’m doing will help me decide if and when I need to make a change at some point. 

Financial safety nets vary widely and depend on each person’s needs. 

One safety net I wish I’d set up is a long-term care insurance plan. Medicare doesn’t cover long-term care, but Medicaid does. To access Medicaid, a person needs to meet strict financial income and asset requirements. People I’ve known who had long-term care insurance were able to move to places where their needs could be met without a significant financial burden. 

I looked into it a few times, and the cost for me to get long-term care insurance now would be really expensive. Since I’ve already been diagnosed with a chronic illness, it would be tough to afford. If you don’t have a diagnosis yet and you’re able to access a long-term care plan, know that I regret not getting it. It would have been a safety net that hopefully I’ll never need, but it would have reduced the stress of planning for my future.

I’m grateful for the career change I made at age 30. I started a job where the paycheck required me to contribute to a retirement plan in addition to Social Security contributions. That requirement helped me establish a safety net that is still growing. Social security payments at full retirement age don’t come close to what I make working full time. Forced retirement plan contributions have allowed me to have the safety net of an income when I’m older that will cover my living expenses. 

Another safety net I’m working to create is covering expenses if I ever have a gap in health insurance.  If I leave the workforce willingly or unwillingly before I qualify for Medicare, health insurance will be a significant expense. I’ve started putting part of my paycheck into a deferred compensation plan. I don’t pay income taxes on it now, and in a few years, it will be available to help pay for health insurance and health care if I need it. It gives me options and eases my worries for a very expensive part of taking care of me.

These are just a few of the safety nets I work to establish and maintain. They’re not fun, they take time, effort, and money, and it’s really tough when money always seems tight.  When I was younger, I wouldn’t have thought I would be able to ever afford some of these options. It was slow going, and I often felt I started too late. As much as I could have done better planning, I started when I could, and it’s made a difference. They help me feel better prepared for the future, whatever it holds.

Being Cool

More than any other time of year, summer shares my not-so-secret secrets. I’m not as thin, flexible, or strong as I used to be. It’s easier to disguise and ignore in colder weather when clothing is bulkier and outdoor activities are less promising.

This time of year encourages reality checks for how I look, feel, what I’m able to do, and how things that used to be easy now require more effort. While natural aging is challenging, Multiple Sclerosis adds even more difficulty to living well in later years. 

I remember as a kid thinking my 50 to 60-year-old grandparents were really old. They weren’t active, and it wouldn’t have occurred to me that they could be. As I’ve watched baby boomers age, they’ve shown they can still be active. They’ve changed my expectations and hopes for myself for my later years. 

Just as each generation is changing expectations for what’s possible, I think the potential to live well with MS in later years is improving. This isn’t always true for each person, but as a whole, those of us living with MS today are doing better at each age than those with MS fifty, thirty, and even twenty years ago.  

For me, having MS is a burden to endure and a motivator to do what I can to combat its likely effects. At almost 55 years old, I’m hopeful that I’m still in the late summer of my life and still have time to delay decline. Each year I do well, I’m encouraged that I may keep doing well for a while. I know achieving that goal demands even more effort. 

If I let up, spasticity will tighten my limbs, limit mobility, and cause more pain than it already does. Medication helps, but stretching is mandatory for maintaining any flexibility. I’d think the way spasticity fires nerve messages and tightens muscles would lead to stronger limbs, but that hasn’t been my experience. It just tightens them, makes movement more difficult, and causes pain. 

It takes a lot of work to be where I’m at, but I still haven’t given up hope or effort for improvement. 

Thankfully, summer provides more opportunities to do things that improve my health. Produce is fresh and fleeting. Enjoy the flavor and nourishment while it lasts. Days are longer, and more sunlight improves my mood. I love being active outside, and the weather is conducive to outdoor activities. Friends are more likely to want to get together, and they support my well-being. 

Sometimes vanity can get in the way of making things easier or less stressful. Things that accommodate aging and MS-related issues are often bulky, less fashionable, and just don’t look cool. Similar to how opinions and expectations are changing for aging, I’d love it if we redefined what cool looks like.   

If needing accommodations for heat sensitivity, consider it’s cooler to be cool than it is to look cool. Lately I’ve noticed more spectators and athletes wearing cooling devices. They’re helping to change the stereotype that cooling vests and accessories are only for people who are weak or vulnerable. Cooling devices worn by athletes appear high-tech and something that helps high performers excel. Maybe with time, more people will see them as not only normal but desirable.  

With age, I’ve embraced comfortable shoes and safety equipment. I love my hiking poles for the stability they provide and stress they ease when I’m navigating trails. On a paddleboard, I’m fine wearing a bulky personal flotation device. I’d rather focus on balancing and enjoying the water than taking risks. 

I’m eager to let go of self-consciousness when it doesn’t support my goals while recognizing it's not easy to let go of vanity.  I’m hopeful comfort and happiness become the norm for being cool, and I'll advocate wherever I can.

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.”

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.  

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!

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.  

Intentional Motivation

It’s hard to stay motivated to do everything that I think I should do to be healthy and live well with Multiple Sclerosis. It seems like the hope of living with fewer MS symptoms and potentially less disease progression should be enough motivation, but temptation, fatigue and a bit of resentment that I even have to deal with MS demotivate me. 

Demotivation can also come from unlikely sources. A few years ago, I saw a physical therapist for hip pain. I described my fitness routines that I’d done for years. It included a daily minimum stretching and activity quota, and I was proud of myself for always doing it. I was very flexible and fairly strong. My habits supported my fitness level. 

Accurately, the physical therapist told me I had plateaued with my exercises. I needed to do more strength training to address the hip pain and improve my fitness level.  I did the prescribed exercises until the pain subsided, but it was tough doing everything they suggested. I was discouraged that I wasn’t doing it all. Not only did I stop doing the prescribed exercises, I stopped doing my minimum daily fitness regimen.  

I took good information, and I mentally warped it into nonsense.  Because my previous minimum daily routines weren’t enough, I concluded they weren't worth doing. I justified that I was still active and exercising, I just wasn’t doing it every day.  

Put in writing, it’s obviously flawed and unhelpful logic. In my mind, it made sense.  In reality, I squandered good habits that were helping me.  After a few years without daily stretching, my flexibility and strength diminished. Things that used to be easy are painful. I recently reintroduced my daily minimum regimen as mandatory, and I’m seeing improvement. My flexibility and strength are increasing, and movements are less painful.  

Reflecting on this experience inspires me to be more intentional about what motivates me and what discourages me.  

Motivation that comes from excitement works better than fear.  I have more success working toward goals than trying to avoid potential consequences. I want to feel like I’m being rewarded, not punished. 

My resentful and fearful thought process is that I have to exercise so that I maintain my mobility as best as possible, because I have a sucky disease that mostly targets my spine and affects my legs and arms. If I don’t keep moving, I won’t be able to keep moving. 

My enthusiastic thought process is that I get to exercise and live in a body that can do things I enjoy. The better I treat my body, the better I’ll feel, the more I’ll be able to do, and the better odds I’ll have aging with MS. If I keep moving, I’m more likely to be able to keep moving. 

Both approaches are true, and both work. When my resentful mindset kicks in, I hope to notice it and not give up.  I want to remember how much my body has done for me and continues to do for me, and set a goal that excites me.  It doesn’t have to be a big goal, it just needs to be meaningful and encouraging. When motivation comes from an enthusiastic mindset, I’m eager to do what’s good for me, and I'm happier overall. It’s a win-win!

Multiple Sclerosis Generations: From Diagnose & Adios to DMT to Crowdsource

Generations offer connection with those before us, with us and after us.

When age groups are categorized by generations, it’s interesting to see how birth year and world events influence life circumstances and outlooks. In the United States of America, the generally accepted generations include the Lost Generation, the Greatest Generation, the Silent Generation, the Baby Boomer Generation, Generation X, Millennials, Generation Z and Gen Alpha.  It occurred to me that people with Multiple Sclerosis could also be considered as living in other various generations depending on how old we were at first symptoms and diagnosis, the year we were diagnosed, and the understanding of MS and available treatments during early adulthood.  

I look at these differences and similarities not to segregate us, but to assess my own health, see where it can help me with my own journey, and consider how I can pay it forward for others. I see people older and diagnosed before me as farther along the MS path. I might not follow the same path, and I likely have more health care options than they had.  That said, I can see where their path seemingly led and learn from them.

I created the chart below that aligns the standard generations with three pivotal advancements in MS diagnosis, treatment and patient connection. Please don’t tune out yet, I promise to explain what it meant for me. By looking at the orange No or green Yes, it shows whether people in that generation had certain advancements available to them at age 20.  I chose age 20 to reflect when symptoms may have been present. While everyone is unique and experiences MS differently, it was a reasonable age for this purpose. 

There are many interesting MS facts in the Timeline – The History of Multiple Sclerosis. The three years and corresponding advancements I chose to include are:

• 1981, the year MRI scans became a tool to view images of MS lesions, 
• 1993 when the first MS disease-modifying therapy (DMT) was approved for use, and 
• 2010 when Facebook established the option to create groups and online support communities became more commonly accessible.   

The Lost, Greatest and Silent Generations had none of the three advancements available to them when they were 20 years old.  Likely they lived in the “diagnose and adios” days when doctors might have known they had MS and told them, but they didn’t have any treatments to help them manage their MS.   Whether adios referred to goodbye or “to God” (as in you’re in God’s hands and there’s nothing they can do) is semantics. Either way, you’re on your own, and the doctor has done what they can.  Even worse were those not told they had MS, because some doctors believed a patient knowing they had an incurable disease was worse than not knowing. 

The Lost and Greatest Generations could be thought of as the “Diagnose & Adios Generation” or just the “Adios Generation” if not told they had MS. The youngest of these two generations would have been nearing 60 by the time MRIs were available to identify their lesion locations, and perhaps some of them benefited from that technology.  

I have and have had friends in the Silent Generation age group who lived with MS for many years and experienced disability by the time they were in their 50s and DMTs became available. They told me of participating in the lottery for early DMTs.  It wasn’t until I did research that I more fully understood what that meant.  

I’d known about the ABC drugs, and here’s an overview for those who might not. The three ABC drugs (Avonex®, Betaseron®, and Copaxone®) were approved between 1993-1996.  They were the first medications to help reduce the frequency and number of exacerbations a person with MS has, thereby delaying disease progression for those able to access the medication and for whom they helped.  

The first disease modifying medication was approved in 1993, and there wasn’t enough supply for all who wanted it. An article from the New York Times described the situation.  

“A computer lottery will be used to distribute a limited supply of a newly approved drug for multiple sclerosis, angering and saddening patients who might be helped by the therapy.  

“The arrangement may leave four out of five of the eligible sufferers unable to obtain treatment when the drug goes on the market in October. Doctors and ethicists called that a reasonable compromise.”

My friend was one of the lucky ones to be selected in the lottery. She began Betaseron® treatment and had positive results.  Currently 81 years old, she is of the Silent Generation. Timing for the medication’s availability benefited her and many others, and the subsequent approval of Copaxone® in 1995 and Avonex® in 1996 changed the disease course and prognosis for generations of people with MS to come. She and her peers could be thought of as the first of the “DMT Generation.” 

From MSAA’s page “Who Gets Multiple Sclerosis,” “Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50, although individuals of any age may be diagnosed with MS.” It’s possible people in the Baby Boomer Generation may have had DMDs available at diagnosis. Those in Generation X are more likely to have had ABC medications available at time of diagnosis than any generation prior.   Please note that by saying these medications were available, I’m not saying people with MS had insurance, could afford medications, their doctor prescribed them or they chose to take them. Issues surrounding access, affordability and effectiveness are a huge conversation beyond what I’ll mention in this post. 

Millennials are more likely to only know a time when DMDs were available, and Generation Z were born into a world with DMD existence.   

I was diagnosed with MS in 2008, and at that time the prevalence of online patient communities was scarce. Patients Like Me originally started for patients with ALS in 2004, and they added a group for people with Multiple Sclerosis in 2007. I found them in 2010, and it was a terrific venue for learning, interacting and not feeling alone. Facebook groups started in 2010, and since then many groups with a myriad of MS interests have been created. I’ve found them helpful as they increase opportunities for connection, information and mutual support.  

I used to look to my elders for insight.  Then I added peers similar in age to those I sought advice and support. Now I look to the youth as well. It seems to me it can be thought of as a “Crowdsource Generation,” where we share information, learn from each other, support and apply what make sense for us.  

I look forward to ongoing medical advancements to see what the next MS Generation might be. Hopefully someday there will be a “Cured of MS Generation” and ultimately a “Post MS Eradication Generation.” I have hope.

References:

“Multiple Sclerosis Drug to Be Dispensed by Lottery” The New York Times, September 2, 1993, Section A, Page 15, https://www.nytimes.com/1993/09/02/us/multiple-sclerosis-drug-to-be-dispensed-by-lottery.html 

“Who Gets Multiple Sclerosis.” mymsaa.org, May 31, 2022, https://mymsaa.org/ms-information/overview/who-gets-ms/ 

“PatientsLikeMe Update: May 2007.” Blog.patientslikeme.com, May 2007, https://blog.patientslikeme.com/health-conditions/als/patientslikeme-update-may-2007/ 

“Timeline – The History of Multiple Sclerosis.” mymsaa.org, Feb 18, 2016, https://mymsaa.org/publications/motivator/summer-fall12/cover-story/timeline

“A Brief History of Facebook, Its Major Milestones” by Christopher McFadden, Interesting Engineering, July 7, 2020, https://interestingengineering.com/culture/history-of-facebook 

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. 

A Season of Convergence

The holiday season for me is one of convergence. A convergence of work demands, holiday tasks, gatherings, gifts and merriment.  It feels like everything needs to get done, and there’s not enough time in the day or energy in my body to do everything. It affects my routines, eating habits, cash flow and health. Yet I love it and look forward to it every year.  

Decorations brighten the landscape, workplaces and homes. Stress abounds, but so does good cheer. Frenzy and serenity coexist. 

I rush and rest, plan and adjust.  Priorities get met, yet they can change.  Checking in with myself helps ensure I’m clear on what’s reasonable for me to do or needs to be let go. My aspirations exceed my ability, and ruthlessness for what stays on the priority list is essential. 

There’s no possible way to do it all.  Picking and choosing matters. 

Convergence of deadlines and expectations organically occurs each year. Intentionally merging needs with wants can help lessen the amount of precious energy and time needed for them.  It can help make things less stressful and more fulfilling. My goals for the season are:

• Know what I need and want, what’s good for me, and what aligns with my goals.
• Batch things I need to do with things I want to do.
• Look for ways to merge my needs and wants with things that are good for me, align with my goals and bring me happiness.
• Be clear in each moment what’s important and let everything else fade away.
• Have fun!

I often schedule walks with friends and colleagues to connect and be active. These outings are filled with updates, planning, problem solving, advice, encouragement, reminiscing, merriment and belly laughs. With these walks, my goals for movement, connection and fresh air for the day are met: check, check, and check. They do more than that though. They motivate, encourage and recharge me mentally and physically. Afterward, I feel both productive and indulgent – a perfect convergence of seemingly opposing mindsets.

With creativity, competing wants and needs can be fulfilled as complementary aspects of a single activity. For example, I enjoy writing, photography and art, and I want to spend time and energy pursuing them. They add to my quality of life, yet they don’t pay my bills or qualify as absolute needs. Managing my health and addressing my Multiple Sclerosis symptoms are definite needs for me.  In order to live as well as I can with MS, I need to listen to my body and learn what it needs.  I need to rest and manage stress, fatigue and other MS symptoms as best as possible. Monitoring and reflecting on how my body works and researching MS related topics takes time, energy and focus. If I think of my health and writing as separate and competing, I wouldn’t feel like I would have enough time or energy to spend on both. Instead, I unite my need to tend to my health and my want to explore creative endeavors by writing about MS challenges and what helps me live well with MS.   Writing helps me work through what I myself need, be clear about what helps me and create reference materials that are useful to me later. Writing ultimately helps me manage my health AND express myself creatively. 

This year, our office party changed from our usual dinner out to a wreath making event at a cidery and farm. We each learned something new, and we admired each other’s creativity. We shared stories and laughter while enjoying the ambiance of the venue and sipping delicious cider. Each of us left with a beautiful wreath as we marveled at the star-filled night sky and pointed out constellations. The pragmatist in me can say we checked the boxes for holiday gathering, connecting, learning, and creativity. The idealist in me knows it was a magical way to celebrate the season and my colleagues.  

In the midst of the holiday season with extra tasks, deadlines and desires, I seek ways to meet my needs and wants that are fulfilling and feasible.  I make time to reflect, write and tend to my health. I prioritize walks and friendship, and I aim to add merriment wherever possible. 

My wish for each and every one of us this holiday season is that our needs and wants converge for maximum fulfillment and joy. Cheers to you and yours! 

Thoughts Too Big to Share: An Early Fatigue Symptom

When Multiple Sclerosis fatigue rears up, my first noticeable sign is when I stop telling stories that come to mind. I edit myself more, and I contribute to conversations less.  A decision point noticeably inserts itself into the thought process.

Do I have the energy to share this story? Am I able and willing to commit to staying in the conversation? When I’m experiencing fatigue, the answer is no. Things I find funny, interesting or relevant become thoughts too big to share.

I decide I don’t have the energy to do the story, memory or perspective justice. Either I don’t have it in me to fully explain the nuance of my thought, or sharing seems like too much effort to undertake in that moment. Comments I might have otherwise made on social media posts become likes instead. I do enough to show I noticed, but I don’t expend the energy it would take to add a written comment. 

It’s a subtle indicator, but it’s an important one for me to recognize. The two takeaways I want to recognize when this happens are:

1. It’s time to look at my schedule, medications and options for things within my control that help me cope with fatigue; and
2. It’s a good opportunity for me to listen and ask questions about what others have to say about the conversation.

Listening to others reminisce about stories they’ve already told have been great opportunities to learn more about their thoughts and experiences. Stories I’ve heard many times are enriched with added details and perspective. Resisting feeling impatient or waiting for them to finish gets easier. Actively listening with ease and curiosity while they reminisce becomes the focus. Relishing how special it is that they like sharing that memory with me becomes an honor. Seeing if there is something they say that inspires a question to learn more allows me to simmer in the moment and enjoy their happiness. 

It’s a relief when friends and family are willing to carry the conversation instead of pressuring me to engage more or explain why I’m quieter than usual. The task of explaining myself or assuring them I am fine or will be fine takes a lot of energy that I may not have. If they do notice me being quieter or less engaged, not mentioning it can be a tremendous kindness. Weathering MS fatigue and navigating social interactions with grace feels like success. Those stories and thoughts too big to share can save for another day.  

Seasonal Well-Being Checklists

For me, autumn elicits memories of a new school year, football games, raking leaves, carving pumpkins, and pressing apples for cider. Prepare for winter with home tasks and wardrobe shifts. Move sweaters, boots and winter wear from boxes or the back of the closet to the front for easier access. Suggestions for weatherizing homes and belongings are prevalent and specific, but they are less so for personal health and well-being.  

Often, I experience recurring and seasonal symptoms before I realize I have a method that helps me cope.  I’d love to be able to avoid the suffering it causes if at all possible. I decided to create and follow a seasonal list of tasks to proactively address my health needs. It has an emphasis on issues that Multiple Sclerosis challenges or creates for me each year. 

Here’s my first attempt to capture what I’ll want to do each autumn for physical, mental, and financial health. 

1. Review any medical records or personal journals to see what issues I’ve had during that season in the past and what helped. Plan ahead for any recurring issues.
2. Start using a blue light in the morning with hopes to pre-empt any seasonal affective depression caused by reduced daylight hours.
3. Make a plan, and set up space for movement.  When the weather turns, being active outside is less enticing. Have a menu of activities with space and equipment easily accessible or ready for transformation for stretching, strength and fitness. 
4. Schedule a flu shot (Some can’t or prefer not to get one.  You do you.)
5. Restock any allergy, cold or flu medications that work for me.  The last thing I want to do when I feel bad is go to the store to purchase over the counter medications. 
6. Plan and confirm holiday locations and people to see. It’s nice to have things to look forward to and decided. 
7. Review annual health care spending and health insurance coverage.  If out of pocket amounts limits have been met for the year, perhaps schedule some appointments that could be done this year instead of next. 
8. Review income tax withholding amounts and estimated taxes for next year.  Determine if any modifications to withholding or other actions now might reduce the tax bill later.
9. Remember the fall season can be tough with changing weather and routines, increased fatigue, and other MS symptoms. It often subsides with effort and time, and knowing it tends to happen every year can help offset depressing thoughts. 

Are there any things you’d add to the list? Please share if you’re willing!