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.  

An ABC Mantra: Always Be Curious

Multiple Sclerosis affects brains and spinal cords, and damage affects sensations, movement and cognition. Each person experiences MS uniquely, and what helps one person might not help the next.  The right treatments, medications, diet, coping skills, life changes, fitness regimens and lifestyles are different for each person. They also change throughout a person’s life.  What works well for one person at diagnosis might not work for the same person years later. 

 

The same is true for every person with or without a chronic illness.  One size doesn’t fit all.  Yet, I feel strongly that everyone can benefit from approaching ourselves, each other and the world with curiosity.

Always be curious.  

 

Try it as a mantra when anticipating hard things. When I’m curious, I’m more likely to listen and learn and less likely to judge and react. Considering there may be more to know helps me have a mindset of compassion for myself and others. Noticing changes in my body with curiosity helps me notice what helps, what hinders and how I may be able to adapt. Awareness breeds a compulsion to act.

 

It’s natural to feel sad, afraid and alone when living with an illness.  People try to understand, but they aren’t living in our bodies and can’t ever really know our experience.  When feeling judged, dismissed, pitied, or faced with unreasonable expectations, it’s tempting and reasonable to defend ourselves. When I’m able to stay in a place of curiosity, interactions and my feelings always fare better.  Whether someone else is out of line or not affects how I behave less and reveals more about them than about me.  

 

Feeling joy and fulfillment are another opportunity to approach with curiosity. What about it felt good, and how can life choices breed more joy? Noticing and knowing the source can help shape a satisfying life.  

 

Always Be Curious.

Intentional & Collaborative Planning

It’s typical to ask “What do you want to do today?”  I’ve had richer conversations and better success asking, “What are your goals for the day? What would make today successful for you?”

It helps shift the conversation from specific decisions to a discussion about attributes that matter to each person. It might feel a little goofy or too structured, but I promise it contributes to relationships of respect and understanding with people who mean well and care.

During the holiday season, it’s even more worthwhile to be clear about what matters to each of us.  Holidays bring out heightened emotions and expectations for how to celebrate. Keeping traditions and doing what we’ve always done isn’t always possible or wise anymore. Whatever the reason, it’s worth introspection and discussion to adapt.

What are your goals for the day, the weekend, the month or the holiday season?  

 

I try to ask these questions of myself and those I’ll spend time with.  When I know what I need to get done, what I want to do and what the minimum is that I hope to do, I can be realistic about what will meet my needs. 

 

When I share my answer with others, they help me make it happen.  When they share with me what they’d like, I factor their needs and preferences into plans.  Usually our desires are compatible, and meeting everyone’s needs is doable.  When we’re on the same team and plan collaboratively, we often come up with better and more fulfilling plans than if we’d left decision-making to one person.

 

Everyone has different desires, and each decision has different implications.  A solution to one barrier might create other problems or eliminate something important to someone else.  

 

What’s important?  What’s the essence of what would make it successful?

 

Knowing this helps shape decision making.  We can collaborate on plans and understand what we’re trying to accomplish for each person involved.

 

If you don’t know what you want, you’re unlikely to get it or know you got it.  If you don’t share what you want, you’re leaving everyone guessing and unlikely to make decisions that will meet your needs.

 

I have a friend who shared they get frustrated when they plan holidays and vacations with everyone in mind, but no one asks what they want. They understandably feel unappreciated. It’s not easy advocating for our needs, and often friends and family forget to ask. Proactively asking everyone what they want or need allows everyone to share in the conversation and decision-making. It also helps make decisions when things don’t go as planned. Everyone can contribute to problem-solving, because they know in advance what attributes are important to each person.

 

There are some who might not cooperate.  Anyone sabotaging plans or dismissing another’s needs must be dealt with or avoided. If that’s an issue, find an ally who can reinforce or champion your wishes along with those of the rest of the people in the group. If that’s not possible, one-on-one counseling may be needed to navigate the specific situation or relationship.

 

In good relationships, sharing needs and limitations leads partners, family and friends to advocate for each other.  Being self-aware, forthcoming and curious cultivates healthy bonds and boundaries. Being intentional with planning and collaborating with everyone involved is an opportunity to learn about each other, accommodate needs and appreciate our uniqueness.

Blame the Disease, Not the Person

Question: What was most and least helpful when you were first diagnosed?

Answer:  The people.  Collectively, they were the most helpful.  Individually, some were the most and some were the least helpful. 

The people who listened, asked questions and validated my feelings helped me the most with my Multiple Sclerosis diagnosis.  Answering sincere questions helped me analyze what was true at that time and what was fear for the future. Thinking through the issues and explaining my experience helped separate what I could influence from what I couldn’t. They offered suggestions while respecting my opinions and decisions. The paid support people who helped me immensely included my medical support team:  primary care provider, counselor, neurologist, and physical therapist. The unpaid support team included family, friends, coworkers, online connections, and the local MS self-help group.

Those who told me what I needed to do or why I shouldn’t worry were naïve and ill-informed.  They would prescribe treatments without knowing what caused my symptoms or what my symptoms even were. They’d tell me I’d be fine since someone they know who has MS is fine. They assured me I’d stay healthy to appease their own fears, not mine. They included people in all of the categories listed above who helped me immensely.  A person’s profession or relation doesn’t automatically place them in the category of helping or hindering. How they behave and interact does.

The people who judged me harshly for how my health was impacting them caused the most stress, guilt and pain.  I was criticized for being less attentive in my relationships and for letting MS be my focus.  I believed it was a personal fault that I was burdening others.  

I genuinely thought I should be able to deal with my health privately and keep doing everything I’d been doing for others.  I wanted to be strong and prevent the people in my life from being affected by my diagnosis and documented chronic illness.  

MS symptoms and exacerbations made me unable to meet the expectations I had for myself and others had for me. It helped me realize the expectations had always been unreasonable. I learned I’d never be able to be healthy physically and emotionally if I kept trying to meet unreasonable expectations.

I realized I can’t do this alone, and I shouldn’t.  

The people who validated that I needed to address my health and accepted things would change – they helped me the most. 

The people who were angry, hurt, blamed and resented me for their unhappiness – they helped force me to realize I didn’t need to keep working toward the life I’d been building, and I probably couldn’t if I kept trying. In a painful way, they helped me open my future to more possibilities.  Changing things wasn’t failure, it was survival.

Survival requires self-care. To people who are used to benefiting from an unhealthy relationship dynamic, other people practicing self-care feels like neglect. It’s good that terms are available now to describe manipulative behaviors. Consider (and look them up if unfamiliar) gaslighting, shaming, isolating, catastrophizing, guilt-tripping, silent treatment, insults disguised as jokes, and jealousy are just some of them.  Hopefully discussions and education on unhealthy relationship tactics help people recognize them instead of feeling responsible for other people’s feelings and accusations. 

It helped the most when I and the people in my life accepted my health as a fact of my life and worked together to make the most of my abilities and limitations.  They watch out for me, help me reflect, know my health may inconvenience them at times and always make it clear they are on my team.  

We are united in our approach: Blame the disease, not the person. 

 

Grief to Comfort Through the Years

Twenty years ago today, I wrote my first letter to my three sisters commemorating
my mom on her birthday.  My mother died suddenly at the age of 47 years 8 months with four daughters ages 20, 23 and 26 and one just shy of ten years old. Seven and a half years later, I still felt stuck in grief.  I wrote this letter while sitting at my mother’s gravesite on what would have been her 55^th birthday. 

I worried how it would be received, but I wrote it and sent it anyway.  I’m so thankful I took that step.  It helped me with my grief, and I feel closer to each of my sisters than I did at that point in my life.  Today I feel able to fully experience sadness and joy for all my mom did and all she missed in a way that brings me comfort. 

It blows me away that this first letter was written 15 days after 9-11.  It was such a pivotal moment in history for our country and individuals personally, and it brought my grief to the surface for all who had suddenly lost their own loved one to a tragedy. When people die in an accident or incident, the news report how many people died.  The news doesn’t even begin to capture the pain, loss or recovery that lies ahead for many who are injured and left behind.

 

An excerpt from that first letter:

I thought coping meant behaving as if everything is fine.

 

Yet, the holidays always posed a distinct sadness. How could I enjoy Mother’s Day when I missed my own Mother so desperately?  How could I sufficiently remember and honor Mom’s birthday when it seems my chance is passed?  How can I make myself feel better when I don’t think I should be so incredibly upset anymore?  We’re always told that time heals all wounds.  So what’s wrong with me that after seven years, I’m still having trouble?  All my friends who are my age still have their parents.  And the friends that don’t, they still had their parents until they were a ripe old age.

 

It’s been 7½ years since her death, and I’m just now starting to feel like I’m allowed to ask for help in sorting through my feelings.  Just before Mother’s Day this year, a friend suggested I create a new tradition to celebrate holidays and special occasions.  I came up with writing letters to my sisters that remember and honor Mom for the incredible person she was.

 

I think this approach has made me feel a lot better.  I looked forward to today even though I knew the tears would flow freely.  I feel satisfied that I have appropriately honored Mom.  I hope we can learn from each other and provide support. 

…

After the September 11^th tragedy, a counselor told me, “Talking about it doesn’t make you sad, what happened made you sad.”  That made me feel a lot better, because not talking about it hasn’t made me feel better either.  Maybe if we keep talking, someday we’ll feel a lot better about this than we do now.

 

I need my friends and family to know that Mom had a profound impact on my life.  Her death was not only a loss to us, it was a loss for the world.  She was an amazing woman who shouldn’t be forgotten.    

 

I did this at the suggestion of a friend to create a new tradition to celebrate holidays and special occasions.  I came up with writing letters to my sisters that remember and honor our Mom for the incredible person she was.

 

On what would be my mom’s 75^th birthday, I reflect on that first letter and feel immense satisfaction that I’ve reached a point where I can celebrate all my mother did and all she missed in a way that’s comforting to me. In twenty years, I've written forty messages, one on our mom's birthday and one on Mother's Day. Some focus on loss and how much our mom missed in hers and our lives, and some focus on how much she accomplished in her short life.  They all share memories, celebrate our connection to each other, and reflect on how much our mom is a part of each of us. 

I think my letters or social media posts could be misconstrued as still having not dealt with my mom’s death, but I believe my posts reflect how hard it is and how far I’ve come. Losing a parent or anyone we love is a universal experience that almost everyone will have at some point in their lives. 

 

I share this in hopes that anyone struggling with grief will find a way to connect with others to navigate their journey to a place that brings comfort to them.  If this resonates with you, please, please know that you’re not alone.  It’s natural to retreat and close ourselves off from others when we hurt. In those moments, it is the act of reaching out, showing vulnerability, and asking for help that creates a path out of the darkness.  Not everyone is equipped to help, but many are willing.  Patience and persistence with others help. Professional help may be necessary.  It’s an act of strength to recognize things aren’t good and reach out for help. 

 

When I was hurting and felt alone, I was seeing a counselor. That was helpful, but taking the step to reach out to my family and friends was necessary to move beyond the pain to a new phase of healthy expression and connection.  I encourage all who are in the midst of loss and grief to reach out if you haven't already.  You may have it easier or harder than I did. It’s not a competition, and it’s not judgment to encourage self-care.  Do what’s good for you, and do whatever it takes to get where you’ll feel comfort. Know that even if nothing changes, perspective and love can change everything. 

People care, and while it's lonely, you’re not alone in your experience. You may be first among your peer group to deal with loss, and your role is to help them when they need help.  It's tough being first, it's not fair, and life doesn't care. People do care though.  They're the only way to find comfort and fulfillment and enjoy life. 

Post Script:

I’ve written a few posts over the years that focus on my mother’s influence with certain lessons that bring me comfort and guide me.  Check them out:

My Mother’s Lasting Influence:

https://stacieprada.blogspot.com/2019/05/my-mothers-lasting-influence.html\

The act of supporting and comforting others is truly a thing to nurture and cherish. It lives beyond the moments we share and shapes our ability to persevere. My mother’s influence many years after her passing is proof for me.  She continues to guide my actions, she inspires me to be someone who gives love and support, and she encourages me to live a life of contribution where I’m able.  Her love endures as a fact of my existence and influences all I do.  

 

We All Have Hardships And Inspiration Is Everywhere

https://stacieprada.blogspot.com/2017/05/we-all-have-hardships-and-inspiration.html

It’s beautiful to know we each have a unique experience and still we all share feelings about them that bind us together. To feel a kinship laced with understanding, respect and love for our fellow grievers, survivors, sufferers and thrivers is heartening and motivating to keep going when it’s tougher than usual. It can give us the strength we need to continue with our own hardships when others are in the midst of greater suffering.

 

The Lasting Love of a Long Gone Mother

https://stacieprada.blogspot.com/2015/05/the-lasting-love-of-long-gone-mother.html

A lesson I learned when my mother died is one I try to live by still – make sure each of my relationships is in a place I’m okay with if one of us is gone suddenly. It doesn’t mean all of them are happy, but at least there isn’t something I would regret if I never see them again.

MS Relapses: An Evolution of Perspective

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

 

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

 

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

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

 

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

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

 

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

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

 

Year 10: Blog Posts - Managing MS Relapses

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

 

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

 

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

 

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

 

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

 

 

Links to posts mentioned:

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

 

Identity, Humor, Intelligence & Chronic Illness

Living with a chronic illness that progresses and has no cure has made me hyperaware of how I view myself and others. Faced with potential physical disability and cognitive decline, I realized how much of my identity was based on what I can do, say and accomplish.

 

I remember my early years navigating acknowledging I had Multiple Sclerosis.  The long list of symptoms and conditions that can result from MS lesions is frightening. Cognitive changes scared me.  They can affect a person professionally, compromise analytical and problem-solving skills, and end a career.  They often change personal relationships, and I wondered if they would change how I interact with people.  

 

These scared me, and in that swirling jumble of symptoms, possibilities and impacts, I worried what it might mean for my personality.  I worried it would change how people see me and how I see myself.  

 

Would I lose my sense of humor and intelligence?  Would my personality become something different?  Would I like who I become?

It turns out I am becoming more serious and intentional, and I’m also keeping my quick-thoughts and silliness. MS integrated into my identity.  It didn’t displace it.  MS is a big part of my life, but so are all of the other aspects of my being.

I haven’t lost my sense of humor, but I have become clearer about why things make me laugh.  Something I experience or observe may make me chuckle to myself, and whether I share it with the people around me depends on the situation and relationship. Anecdotes and observations on living with a chronic illness can ring true and boost connection with some, and they can make others uncomfortable.  Sometimes a modification to how it’s told can make it relatable, and other times it’s worth waiting to share with a person who already understands.

 

Being silly can sometimes be seen as immature or flippant.  Growing older, gaining confidence and learning every day helps me share my thoughts more and worry less about what people will think. If someone interprets me differently than I’d like, I’ve gotten better about not owning their opinion. 

 

I’ve watched friends experience physical and cognitive impacts due to illness and aging. Searching for the right word to express their thoughts can take longer, but it’s also because the right word matters to them.

 

Intelligence is not the ability to retrieve a word or speak quickly. It’s understandable yet misguided to presume communication equals comprehension and intelligence. I’ve learned through the years and many friends that the ability to communicate or retrieve words have no relationship to a person’s intelligence or understanding of things. 

When a person takes their time to find the word that accurately captures what they want to convey, I’m often rewarded with a perspective and insight I hadn’t anticipated.  It encourages me to honor the person and the conversation by staying quiet, interested and unhurried.

 

Curiosity and not rushing a conversation are crucial.  Not finishing a sentence when they’re searching for the word reaps rewards.  I may think I know what they’re going to say, but often they surprise me with more depth, cleverness and humor than I’d anticipated. 

 

If I could talk to the newly diagnosed me from 13 years ago, I would tell her this:

Living with chronic illness affects everything, but MS will integrate into your identity in a way that matches your personality.  Your intelligence, humor and identity will evolve, but they will be what you make them.  You’ll gain insight into a world that teaches you about others and yourself.  The experience will make clear who you are and who you want to be in this life. Through all of it, you’ll still be you.