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!

Goal Management Instead of Time Management

Time is fixed and passes at its own pace.  Goals can grow, contract, adjust and evolve. 

Often advice for time management includes instructions to make lists, dedicate time for tasks, be organized, get up early, multitask, do more, and just generally be different than you’ve been.  While some are good suggestions, the attempt to fit an individual’s unique experience into a fixed and uncontrollable passage of time can miss the mark. It can be overwhelming and unrealistic when not considering a person’s specific life circumstances, obligations and health.  When already feeling like there isn’t enough time, the advice to do more can feel offensive.  

 

Time management seems to inherently approach the future from a perspective of scarcity.  It is true there is only so much time in the day, the week, the year, and a lifetime.  Each moment passes whether we’ve spent it intentionally or not.  Even so, I’d rather approach the future with a feeling of abundance.  There is limited time, I have limited energy and abilities, and I also have the opportunity to fill that time in ways that fulfill my needs and goals. I can do this by being clear about my immediate and long-term needs as well as my goals in each moment and for my life.

 

Time management advice recognizes that it can be a project to fit everything in, but it often forgets it can be effort to fill the time.  I’ve had both in my life, and at times they’ve paradoxically co-existed. There were fast-paced workdays where dedicated, productive accomplishments never seemed to put a dent in the backlog, and there were evenings with long stretches of solitude where loneliness was at the ready to dominate my head space. The daily schedule of surge and stagnation with such severe contrast was exhausting. That experience is telling for how different needs and goals dictate different choices and solutions.

 

If I approach each of these challenges as time management exercises, it seems like two very different undertakings.  If I consistently approach them as need fulfillment and goal management, the questions to ask myself and decisions to make can follow a single thought process.  

 

My goals for most weekends are to get outside, be active, spend time with loved ones, and rest. Asking myself what I need helps me determine how I want to accomplish my goals. If I’m experiencing symptoms due to Multiple Sclerosis, I can shorten the time spent visiting friends or modify connection to something requiring less exertion like a phone call or text.  Activity intensity can be lessened, and I can include more passive rest. Sometimes a goal is to go for a jog, but my body isn’t up for it.  The time is there, but no amount of time management will address my needs. Managing my goals based on my health needs helps maintain my sense of well-being.  

 

Another example of the difference between task scheduling and goal achievement involves paying bills. I need to pay my bills. I also need to make the best use of my energy and minimize stress where I can. I vividly remember the days when I dreaded paying bills and couldn’t be certain the money would be there when bills were due.  It wasn’t a matter of making time to pay bills, it was a matter of designing a path toward financial stability.

 

I don’t pay bills because I love the task or because it’s penciled in the schedule; I do it to keep my belongings and services and to avoid paying late fees, interest or overdraft charges. Among my goals is to not waste money when I can avoid it. Because I want to minimize the effort that bill payment requires, I open my mail when it arrives and file paperwork soon after.  I set up automatic deposits and payments where I can and balance my checkbook in increments of a couple minutes at a time. Doing this in small portions means I don’t need to schedule time or put a lot of thought and energy into it. 

 

I have a list of questions I ask myself to help me manage my goals while meeting my needs: 

1. What do I need in this moment, this week and longer term? 

2. What are my goals and what needs to be done to accomplish them?

3. What would help my body meet its needs? Would I benefit more from pushing myself or resting?

4. What needs to be done by me? Could it be done differently with less effort or by someone else?

5. How can I adjust my goals to meet my needs?

Your list may be different, and mine will likely evolve with time.  Whether I’m making time or filling time, I hope to make sure my needs are met, my goals support them and in the end my life has been fulfilling.

52 Years: Receiving the Gift of a Full Deck

For my 52^nd birthday, I have officially received what has to be the most collaborative, creative and heartwarming gift I’ve ever received.  

With two jokers and a couple extra cards expressing
my appreciation, there are 56 cards total. 

My sister thought of the gift after reading my blog post, "Playing the Hand I’m Dealt."

One-quarter of my life lived is post MS diagnosis, and I’ve likely been living more than half of my life with MS. I will turn 52 this year, and it tickles me to compare my age to matching the number of cards in a full deck. I’ll consider myself as playing with a full deck and working on adding another deck. I’m wary of the wild cards, but I will play what I’m dealt.

She started the project two months before my birthday by contacting my friends and family to invite participation. She coordinated sending them individual playing cards from a single deck of cards to sign and return. Some cards traveled across town, and others flew thousands of miles to arrive where they originally departed. Each card physically started their journey as common cards; exact copies existed in every other mass-produced deck of cards packaged and sold. Each card returned with unique messages and travels. She gathered them together, returned the full deck of cards to their original packaging as if they hadn’t been disturbed, gift-wrapped the package, and sent them 1,400 miles to my doorstep. 

 

The gift I opened appeared innocuous. I chuckled and expressed appreciation for the 52 reference, yet I only opened the packaging when prompted. As I emptied the box and studied individual cards, I slowly digested what the gift was and what it took to create. To have so many people from each life chapter of my 52 years share their love and wish me well was overwhelming. Each was a personal message in their handwriting. There were memories of times shared, happy birthday messages, compliments, inspirational quotes, wordplay and artwork incorporating the card number and the number 52. I share so much with each of the people who helped create this gift, yet we experience this world uniquely. The similarity between these altered cards and people is fitting. Separately each person holds unique identities and value; together we embody a collective fabric of kinship and entwined existence.

 

We converge and emerge from each interaction altered.  We meet as the person we’ve become, influence each other, create new memories, and continually evolve.  This gift symbolizes and commemorates an abundance of relationships, moments and lasting impressions. A combination of giddiness and brimming tears sits with me days after receiving this gift, and I anticipate I’ll treasure this gift and the emotions it stirs the rest of my days.

I Wish My Body Had a Dimmer Switch to Relax…

It’s too bad our neurological wiring doesn’t include on/off dimmer switches like some of the electrical lights in my home. The central nervous system and myelin degradation caused by Multiple Sclerosis are often compared to electrical wires with the outer coating frayed or damaged. It seems only fitting that we should be able to extend the metaphor and enjoy the ability to increase or decrease the current through our nerves. The fantasy of being able to turn off or dim misfiring electrical signals to my arms and legs when spasticity is acting up is enticing. 

It’s challenging to relax when my limbs ache and the compulsion to move them won’t subside. Being uncomfortable has become the norm. It’s occurred to me that I can’t remember the last time I felt completely relaxed, and the goal of complete physical relaxation hasn’t been on my radar for a long time. 

 

I’ve felt happy, fulfilled, accomplished, and satisfied, but I have not felt fully relaxed in years. If I’m mentally calm and at peace, my body is still sending erratic and unnecessary signals. I see that my goals for relaxation focus extensively on maximizing my mental well-being while only hoping to manage and minimize the tension and agitation my limbs experience. 

 

Both physical and mental health contribute to my experience in any moment, yet I notice I expect my mental health skills to compensate for the stress my physical body endures. Medication, stretching, hydration, supplements, nutrition and movement help, but they don’t eradicate the physical pain. I’ve given up on believing they can eliminate symptoms, and I am satisfied that they reduce them.  

 

Perspective and mental wellness efforts shoulder the bulk of my expectations for coping with what can’t be eliminated.  It may not be reasonable or even possible to outthink or override the physical consequences of MS, yet I keep trying.   

 

Through yoga, meditation and mental body scans, I have had instances of noticing misfires in my nerves and been able to think of them as curious and interesting instead of frustrating and scary. These momentary experiences show me how mental relaxation doesn’t override physical tension, but it does help me cope with it. 

 

I learned how to do body scans from a yoga teacher, but there are lots of websites, videos and audio recordings that can walk a person through a body scan.  Search online with the term, “3-minute body scan” to find lots of options to try.  There are longer ones that may be better for relaxing, but I’m a bit impatient. 

 

Perhaps a relaxed mind is the figurative dimmer switch after all.

 

Summoning Summer

Well into July this year, summer weather hasn’t arrived where I live yet.  Days are cool and pleasant, but intermittent rain and cloudy days persist. 

A few days ago, I ordered an iced coffee for the first time this year. With my first sip, I had a strong sense of summer.  It was an involuntary and automatic response where my exhale was one of complete satisfaction.  It made it clear to me how much seasons are about more than the weather. I’d been waiting for summer to start, and I realized I can enjoy summer without waiting for the weather to change.

 

As a kid, summertime meant a different schedule for me.  It was a break from school for a few months, plenty of time swimming, riding bikes, playing with my siblings and friends, and leisurely reading novels.  Summertime meant fun and felt like an escape.  

I reminisce and ask myself sensory questions.  

Which summer memories are cherished. What did I love about them?

Which foods and flavors connect me to those memories?  

Are there sounds that evoke fondness within me? 

What is within my ability to enjoy that doesn’t depend on things outside my control?

I think of the music I loved and played on repeat.  Eating popsicles and attending outdoor parties with friends. Focusing less on television and more on time outside. Inspired by that sip of iced coffee, I’m eager to start enjoying summer.  

Balancing Whimsy and Invisible Forces

Art that resonates with me changes depending on where I am in my life, how I’m feeling, and what I’m facing. Some things I loved at certain points in my life I love because they spoke to me at that time. I think if I were to first see some of them today, I would not connect in the same way as I did back then. I have some pieces that spoke to me during dark times that I chose to let go when times changed and they no longer brought me solace.  Others have endured through life changes and still resonate.

One piece that spoke to me nearly ten years ago and does still is a balancing metal sculpture I purchased in a small gallery on an outing with friends. It was an impromptu purchase during an extremely challenging year that completely overhauled my career, relationship and living arrangement.  Simple and elegant, it spins, leans and wobbles while always coming to rest in perfect balance.

First struck by the elegant whimsy of the figure whirling and balancing on a wheel on a narrow single point, it symbolized how I felt about my own experience. Balancing my health with dreams for a better future, I felt like the figure navigating invisible forces that required constant attention while maintaining control.

My Multiple Sclerosis symptoms continue to be mostly invisible to others.  Fatigue, numbness, spasms and pain accompany and factor into all I do.  When knocked physically or emotionally, I try to find my center, flow with the momentum and aim for the next goal. Movements and mood slide along a continuum of unstable and vulnerable to daring and resilient. The fluidity of disparate experiences and apparent grace is encouraging not for deceptive intent but for the possibilities and hopefulness they inspire. 

PS The piece is unfortunately unsigned, and I’ve been unsuccessful finding the artist. If anyone knows the artist and can provide me their name or connect me with them, I’ve be very grateful to assign credit to them.  

The Liberation & Necessity of Hobby Accommodations

Often the statement is said, “MS took from me...(fill in the blank)…”  Multiple Sclerosis takes a lot physically and emotionally, and it is frustrating and depressing. There’s no getting around the ongoing loss and grieving process of living with a chronic and progressive illness.  It deserves acknowledgement and shouldn’t be minimized or dismissed. 

Being optimistic and living well with MS demands immense resilience and coping skills.  It also benefits from accommodations and adaptive technology. While often described and prescribed for work and personal grooming, accommodations that support ongoing participation in hobbies are especially joy inducing.  They help reduce or perhaps delay some things on the long list of things that MS took from a person.

 

Accommodations are crucial for how they can make an activity rewarding and fulfilling instead of a reminder of how much we can’t do anymore. Thinking about what makes an activity difficult will help determine which accommodations would be useful for an individual. 

 

Sometimes looking at potential solutions will help zero in on the barrier.  Seeing what’s possible can bring an “aha moment” for why something feels too burdensome to undertake anymore.  This can help with the task of designing accommodations around you and your unique issues and preferences.  

 

Helpful online search terms include disability accommodations, assistive technology and adaptive tools coupled with your hobby. 

 

There are many tools that will help reduce dexterity demands, potential for injury and cognitive exertion. If they are easier to use, safer to use and easier to understand, they may accommodate a difficulty caused by MS Symptoms. The goal is to make the activity enjoyable and doable again.

 

For issues with Energy Exertion, consider time of day, duration, body position, and movements required of the task. For Dexterity Limitations, think about tools designed to use leverage, improve stability, and enhance safety. For Cognitive Overload, explore organization of the space, visibility of tools and supplies, and reducing the number of decisions needed throughout the activity.  Each of these issues may benefit from different accommodations, and you are ultimately the best judge of what might help you.

 

Accommodations can be liberating for supporting continued ability to do things we love in some capacity.  While assistive technology is geared toward people with disabilities, some items come in the form of an indulgence or specialty item for those most enthusiastic about a hobby.

 

Learning about MS and accommodating MS symptoms can be a full-time job.  If thought of as a portion of a wellness interest or effort to help me continue doing things I love, it’s less emotionally triggering for the damage MS has done to my body or may do in the future. While not a traditionally thought of hobby, my focus on wellness and living well with MS definitely qualifies as a hobby. Researching, applying wellness information to my own health, journaling and writing a blog are all things I’m compelled to do in my free time that help me feel a sense of fulfillment.   

 

My laptop and smart phone are helpful devices for learning and writing. I can make myself physically comfortable while using them better than I can using a desktop computer.  I can sit or lie down on the sofa while writing and learning. These accommodations help me be able to do this hobby.  

 

Drawing and painting used to be a favorite hobby of mine. With MS, my ability to control my hands and brush strokes has diminished. If I take it up again someday, I know I would benefit from a leaning bridge.  Designed for drawing on horizontal surfaces, a leaning bridge spans artwork and allows the artist to rest their hand above the artwork.  For easel use, there are products that use a rail affixed to the top of the easel and a Mahl stick hangs and slides to allow use over the full canvas. 

 

Another hobby I enjoy and greatly benefits from accommodations is cooking.  Over the years, the time I spend creating in the kitchen has fluctuated based on my MS symptoms and life demands.  Fatigue discourages expending extra effort for nonessential tasks.  The effort required can often be more than I’m up for undertaking when MS fatigue and spasticity pain overtake me. When feeling poorly due to MS, it’s exactly when joy from a hobby would serve my mental health all the more. 

 

There is an abundance of accommodation options for cooking, and it’s a terrific example to use for a deep dive on accommodation methods and equipment. Counter seating and a comfortable stool are good for stationary tasks and rest breaks.  Kitchen appliances useful for gourmet fare are kind to a person budgeting their energy.  Some are reasonably affordable and others are crazy pricy.  Combination crock pot/pressure cooker/air fryer appliances reduce the amount of time needed to monitor the stove. Sous vide cooking in a water bath allows for long unmonitored cooking time as well. Automated mixers exist that will stir a pot while cooking. Food processors help with safely cutting vegetables and mixing.  

 

Utensils designed for comfortable gripping are worth researching to maximize ease of use and meet personal preference. Silicone mats, trivets and coated bowls keep cutting boards and bowls from sliding and offer close options for moving hot dishes.  

 

Things that don’t require unscrewing a lid or using both hands to use are helpful.  Olive oil bottles can be decorative and don’t require removing a cap.  Gravity activated electric pepper and salt mills allow for fresh ground seasonings with a single-handed movement without buttons to press or extra effort. 

 

Anything that helps with clean up can minimize barriers to cooking. Touchless soap dispensers are good for handwashing. An electric dishwasher or human in the house willing to clean up helps reduce energy needed.  They also make it less of an impediment to using equipment that is difficult to clean by hand.  

 

Think about foods you like and want to make repeatedly, and store everything needed to make and serve them together.  Dedicating a single location for coffee, filters, hot water kettle and tea allows for making them without accessing multiple areas of the kitchen.  The same goes for popcorn in my home. A shelf in the cupboard next to the microwave holds the popcorn maker, popcorn, the bowl for serving. Olive oil and salt are within reach as well, and no extra steps or cupboard access are needed.

 

To someone without any health issues, the suggestions mentioned here could seem absurd. All of these tasks don’t take a lot of effort for them. Given my MS fatigue and pain, combining all of these suggestions creates an environment that shifts my attitude toward cooking from a burden to a joy. These accommodations allow me to keep enjoying my hobbies, and my hobbies help me combat stress and enjoy life. 

 

Hobbies are not just for those who can do them easily, and doing things differently than we used to do them is not failure.  Accommodations are liberating and necessary when they keep us doing what we love. 

 

MS Springs: Spasticity & Spasms

Spring is a time of fresh starts and emerging from winter. Spring is a season, a mindset, and a promise of better days ahead.  Lately spring for me is the overreaction my arms and legs give for a slight touch. Reflexes that have always overreacted to the tap on the shin or elbow are now exaggerated to a point that seems almost comical for the physical threat they pose to anyone within reach.  

 

Spring now correlates with spasticity and spasms for me. The energy and movements my limbs release are disproportionate to the touch that triggers them.  A limb’s quick return to original position and residual spasms mimic the vibration and cartoonish boing of a spring as it comes to rest. 

 

My spasticity isn’t what I anticipated from the descriptions I’d researched over the years.  

 

I remember wanting to know if my vague symptoms were spasticity. I look back to medical forms I filled out asking where the pain was, and I consistently circled my calf muscles and the underside of my forearms. To my neurologist, I described my arms as cramping and my legs as being “clompy” in the morning. The first few feet of walking were jerky and unreliable. I’d go slow and touch the bed or walls to help with balance. My movements resembled a less than graceful horse trotting since my legs jerked forward in a way that isn’t ideal for humans.

 

With hopes of knowing what to expect as my Multiple Sclerosis symptoms progress, I soaked up any information I could find on spasticity. Online information described it as a stiffening of the muscles, and that is part of my experience. Muscles are tightening and take more effort to stretch. Getting my legs and arms moving fluidly in the morning is a process.  

 

I’d understood spasticity could disrupt sleep for the restlessness legs experience.  The inability to relax and fall asleep made sense. I didn’t realize that a deep slumber could be violently terminated for an innocent and slight movement of the blankets or a light touch on my arm or leg from my partner on the other side of the bed. Suddenly wide awake in the dark of the night, my physical condition is impossible to ignore. Spasms are painful, frustrating and depressing. Practicing mindfulness and relaxation helps put perspective to the situation. 

 

I can still do so much. Hiking, biking, and jogging are still possible for me. During the day, the neurological misfires from my brain through my spinal cord to my arms and legs are usually invisible. Yet sometimes they emerge unpredictably and embarrassingly.

 

I’m getting better at explaining how my body works to people close to me. I need to. The swift reaction of limbs can feel violent and rejecting. Whether my arm or leg jerks away from them or pushes them away from me, it comes across as a disproportionate and angry reaction. As with many MS issues, the physical aspect of a body not working ideally is only one part of the process of dealing with MS. How I feel about it, how it can affect my future, and deciding whether to share my experience in my relationships is a whole other thing.  

 

I’m learning stretching throughout the day every day is necessary and nonnegotiable. Flexible movements that were once easy are now difficult and painful. I still have hope that working on this from every angle available will improve flexibility, reduce pain and reverse some of the impacts from the many lesions in my spinal cord.  

 

MSAA has a terrific reference page on Spasticity (stiffness), and passively stretching specific muscles at least a minute is an important recommendation to know and use. Aqua therapy and medications can help a lot. 

 

I’m a big fan of complementary therapy, and most of the treatments listed below are things I do daily or regularly.  When I start noticing increased symptoms, often I realize I’ve lapsed doing something on the list. Make sure to discuss any treatments with your doctor first!

1. Hydrate throughout the day. Stop or slow down drinking fluids a couple hours before bed time to minimize nightly bathroom breaks. 
2. Stretch throughout the day
3. Physical therapy exercises tailored to individual needs
4. Relaxed minute-long passive stretches or yoga for mind-body connection and muscle care
5. Walk, swim, move in an environment you enjoy
6. Eat a banana a day for the potassium, magnesium and nutrition (supplements haven’t been as effective for me)
7. Topical lotions, body wash and sprays with magnesium, CBD oil or sport relief purposes  
8. Support limbs with pillows or blankets when resting or sleeping 
9. Magnesium supplements 
10. Vinegar based treatments such as pickle juice, apple cider vinegar or homeopathy formulas for stopping leg and foot cramps 
11. Medications such as Baclofen or Botox

I recognize that so many people with MS have it a lot harder than I do, and what I’m doing won’t be enough for them to find relief. I appreciate learning from them for how they manage their physical health and mental well-being. My heart goes out to them for living with MS in times when medical advancements and treatments were fewer than they are today. My aim is to manage my own health as best as possible, and my hope is to live long enough to see better days for all of us.  

Playing the Cards I'm Dealt

I love the emotional and intellectual sides of aging.  With each decade, I grow more certain about who I am, what matters to me, and where my strengths lie. I worry less about pleasing others and more about doing what’s right for my physical and mental health.  Without Multiple Sclerosis, I likely would have enjoyed this aspect of aging, but I believe having MS accelerated my drive to live a life I love and feel good about myself. 

 

I thought some things were non-negotiable while I was pre-diagnosis and in peak physical health.  Post MS diagnosis, those same things were reconsidered and proved to be negotiable. With diagnosis, my body’s confusing aspects had an explanation, and I could no longer dismiss them when they appeared.  Work and the expectations people placed on me were no longer the highest priorities. Rest, sleep and personal fulfillment earned positions of power that would affect choices and influence decisions.  For me, this was helpful and necessary.    

 

There’s a wisdom that developed slowly and was hard earned with each revelation. It continues to constantly evolve and contribute to a healthier perspective and sense of well-being.

 

One-quarter of my life lived is post MS diagnosis, and I’ve likely been living more than half of my life with MS.  I will turn 52 this year, and it tickles me to compare my age to matching the number of cards in a full deck. I’ll consider myself as playing with a full deck and working on adding another deck. I’m wary of the wild cards, but I will play what I’m dealt.

 

My MS experience has been painful, challenging and full of loss as I played the hands I was dealt. Changing the game helped me lessen my pain and increase fulfillment.  As I reflect on the last 14 years since my MS diagnosis, I appreciate the personal and professional growth I’ve experienced, the changes I’ve made, and the people who supported me along the way.  

Short Days, Dark Nights and Big Hopes

Each winter, darkness pervades my free time.  Living in the Pacific Northwest, daylight hours seem to only exist on weekends and during lunch on weekdays. Dry, sunny days are less frequent, and spending time outside requires dressing for wind, rain and cold.  While invigorating to experience, inclement weather provides encouragement to stay inside and find comfort from the elements. 

It takes more creativity and effort to be active when the environment encourages spending time indoors. The draw of the sofa and screen time is compelling and comforting. I can justify that time and accurately describe it as productive by using it to rest, connect with others, learn, create, reflect and amuse myself. All are valid uses of time, and they only lack fulfillment if they sabotage my needs or goals. Usually the challenge is not the use of time but the amount of time spent on them. 

 

The weather and amount of daylight influence activities as much as energy level and work schedule constrain activity options. Multiple Sclerosis symptoms like fatigue and spasticity make movement more difficult.  Medication helps, but the time dedicated for resting and need for intentional movement tend to be greater in the winter. The days feel short, and the good weather daylight hours are brief and sporadic.  

 

Scarcity heightens the desire to grab those moments when the elements align with my schedule and disposition. I appreciate them more and will change plans to enjoy them.  Bundled up for warmth, even a short excursion in the fresh air rejuvenates. Chores can pause without guilt.  Feeding my soul is a priority.

 

In the darkness of winter, I seek options to nurture my physical health. Blue light therapy helps with the lack of daylight.  Yoga, cooking, projects, hobbies, audiobooks and podcasts reduce screen and sitting time while relaxing my eyes.  Activities that keep me moving and engaged while respecting the need for relaxation help make days more fulfilling.

There’s a big difference between not being able to do something and not wanting to do something.  Knowing work is something I get to do makes me appreciate that I can still work.  Knowing certain levels of activity are something I still can do and cultivate makes me appreciate that they’re still possible.  There will come a day when I will not be able to work or perform activities at the level I do today.  The fact that I can still work and exercise makes me appreciate today all the more, because someday I likely won’t be able to do either.  

 

Enjoying work and fitness now is bittersweet. They’re reminders that how I’m doing today is fleeting.  Health ebbs and flows with age and disease progression, and the path is not predetermined for a steady decline.  Ups and downs are sure to come, and uncertainty is certain. The big hope is to relish the moments of sunshine and jubilance and find fulfillment in the darkness.