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.