Burdens Shared

March is MS awareness month, and it’s a good time to reflect on the lessons I’ve learned while navigating life with Multiple Sclerosis for 16 years. Of all of the lessons I’ve had to learn, the hardest has been accepting my MS is not just my problem. 

When I was diagnosed with MS, I firmly wanted to be able to deal with it myself. I saw it as my problem, and I didn’t want it to affect those around me. I saw it as solely my responsibility, and I thought it would be unfair for me to let it burden anyone else. 

I didn’t sign up for having MS, and neither did my friends, family, and colleagues. I thought I could shelter them from my hardships, and I thought that was the noble way to approach it. I strived to be independent and strong, and I thought being needy was a weakness. 

When it got to be too much, I sought help. Some rose to the occasion, and some resented my pleas for help. I was embarrassed to ask, and it was crushing being rejected. Those willing and able to provide healthy support were grateful I was finally asking for and accepting help. They have been essential to my well-being, and I’m grateful for them.

I’ve learned that sharing my experience and counting on people to help me is not a burden. They are components of healthy relationships. It takes strength and courage to let people in, and I’ve come a long way. I’m grateful when people ask and accept help with their challenges. 

I’ve learned to let people know how my MS may affect them, and most people are incredibly supportive and kind. I hope to lead by example for how we can be compassionate and understanding when life doesn’t go as planned. We all have challenges throughout our lives, and hardship grows when we try to go it alone. 

While this lesson has been hard earned, it’s also been the most rewarding. 

Fortifying Relationships

Some bonds can withstand extreme stress and grumpy behavior. Others falter with the slightest misstep or misunderstanding. 

Sometimes I wonder where I stand with people I haven’t seen in a while. After getting divorced, I worried I was portrayed in a way that led people to judge me in a way I thought was unfair and inaccurate. When encountering people I haven’t seen in a while, I’m not always sure if their opinion of me has changed.  I cherish those who light up when they see me. My fears and insecurities vanish immediately, my entire body relaxes, and I delight in the reunion. 

There are others who I’d never question where I stand. They’ve been consistent confidantes and cheerleaders. Our relationships have been fortified over many years to a level where I can’t imagine anything could break it. 

It’s easier to put effort into relationships when I feel good. Being generous and kind comes naturally when I’m less stressed or fatigued. When I don’t feel well, it’s harder to look beyond my own thoughts and feelings to see what’s going on with others.

Sometimes, the shift from gathering strength to interact to being energized and excited to connect comes quickly. It can be from their energy rubbing off on me, their kindness, or their acceptance of me without demanding anything else.

Sometimes it’s a reality check that causes a shift. Realizing a friend is going through their own hard times and could really use support reminds me to look beyond my own life. 

I’ve benefited and learned so much from many very wise and compassionate people who helped me through challenging times, and I try to pay it forward. Usually, it’s by example, but I’ve attempted to gather and share some highlights here. 

Make bids for connection:

• Offer to listen, invite them to share, and make it clear there’s no expectation or pressure.
• Check in by phone, text, or email, and let them know they don’t have to respond.
• If I’m genuinely there for them at all times, make sure they know it and believe me. 
• Be there for them when they reach out. 
• If you’re able and it feels genuine, light up when you see them.  

Consider conversation approaches:

• Ask open-ended questions that aren't leading. Avoid asking, “So you’re doing well?” Try “How are you doing?” If they’re not doing well, they won’t need to overcome an incorrect assumption before sharing whatever they’re comfortable sharing.
• Acknowledge that my own problems may be silly and aren’t as big as theirs, but they’re what I’m experiencing. Sometimes people are sick of dealing with their own issues and would like to hear what’s going on with you.
• Share without competing. Allude to how my experiences may be similar, but be clear that I understand their situation may be completely different. How I deal with similar issues or life events may or may not help them.
• Validate their experience before providing reassurance.  If the validation step is skipped, it can appear to be dismissing their feelings and reality.  
• If I get emotional, be clear that the topic is hard but I’m glad they’re sharing with me. 
• Be patient, and let the pauses linger.  What feels like an awkward pause can be received as patience.  Quiet moments help allow time to organize thoughts and gather the courage to share. 
• Avoid interrupting, it can disrupt their train of thought. If I do interrupt, I’ll try to bring the conversation back to the point where I interrupted them. 
• Don’t yuck someone else’s yum.  What works for one doesn’t for others. 
• Be okay with not agreeing with them and not understanding everything.  Trust they’re doing their best, and respect their decisions. 

Show appreciation:

• Appreciate the relationship, and tell them why.  Share how our relationship and times together help me and make my life better.  
• When people ask for help, let them know how much they’ve helped me in the past.  Share how being there for them is important to me. 

Follow up:

• Sometimes my reactions can be misconstrued or confusing. If I’m really absorbing something, I might stare and not say anything. It can sometimes lead people to reach conclusions that weren’t my intention.  If I realize later that this might have happened, I want to let them know that my reaction was sincere contemplation and not judgment. 
• If I perceive an interaction as difficult, follow up later.  Ask if it’s okay to bring up what happened and what I think I could have done differently.  See how they feel about it, and see if they agree or have other insight. If they don’t want to talk about it, reinforce the relationship and let the issue go. 

Each of these suggestions has one or many stories behind it. I cherish the friends, family, counselors, acquaintances, writers, bloggers, and leaders who’ve shared their wisdom and have helped me learn and grow. I needed it, and they’ve helped me immensely.

New Year’s Reflection

One thing to remember about New Year’s resolutions: They are not required.  If you don’t want to make any, don’t.  I like them for the feeling of a fresh start and hope for a better future, but I also know that I need to be ready before I make a change. If I try before I’m ready, it will end with feelings of failure and guilt. 

Coming out of the holiday season, I recognize I did a lot, and I don’t feel like I took enough time to rest and recharge. Now it’s January, there are many things to do, and I’m not feeling completely ready. I’ve been too busy getting things done each day to take a step back and look longer term. 

My first step for the year is to grant myself grace. I’ve scheduled time to reflect, and I aim to decide what I want to do this coming year. 

Instead of jumping to the step of deciding what to change, I want to take time to consider last year and how I’m doing. These questions help me evaluate my life as it is now:

1. What did I love about last year? Why?
2. What was challenging or annoying? Why was it hard?
3. What did I learn? How can that lesson help me in the future?
4. Where in my life did I improve or lapse? Why do I think it changed?
5. Was there anything I needed or wanted that I didn’t have? Is it possible to have them?  If so, how would it be possible?  If not, do I need them?
6. How does answering these questions make me feel?

When distinguishing between what I need to do and what I want to do, I often think of the 1999 movie, “Office Space,” where the main character hates his job and decides not to go to work anymore. He doesn’t much care for paying bills either. He’s just not going to do them anymore. When asked if he’ll quit his job, he says no, he’s just not going to go anymore. It works out for him, hilariously and brilliantly.  

It wouldn’t for us, but the ridiculousness of it is a good lesson.  There are things we categorize as mandatory, but really, we just don’t want the consequences not doing them might bring. We still get to choose, although they seem like no-brainer decisions. I’m very aware that health issues severely limit options, so please know this distinction between need and want applies differently for each person. Take it or leave it as it helps you in your own life. 

For me, it helps to remember I’m not required to live the life I’m living. The things I love about my life are worth cultivating, and the challenging things deserve attention. I have choices. Knowing that, I look at how I answered the questions above, and it opens up the range of options available. 

There have been years when I needed to make really big changes, and some took a long time before I was ready to make them. All of them have led to me living a life I love more than the one I was living. I like the me I’ve become, and I’m excited to keep learning, growing, and evolving. As far as any resolutions go for this this year, I’ll make them when I’m ready. 

Wishes for Wellness

Bright lights on buildings and cool decorations

Brighten the landscape and cause a sensation

Snail mail and email share tidings and cheer

Wishes for wellness and Happy New Year

Kindness from strangers and heartfelt connection

Show us what matters and trigger reflection

Posts on the social show who they hold dear

Wishes for wellness and Happy New Year

Visit with loved ones and arrive gift bearing

Delight in giving while sharing and caring 

Joy, peace and goodwill for those far and near

Wishes for wellness and Happy New Year

When fatigue hits

When the stress rears

When I’m overwhelmed

Focus on what matters, let go of the rest, 

and deem the season success!

This was written for fun to be sung to the tune of “My Favorite Things,” by Oscar Hammerstein II and Richard Rodgers in their musical, “The Sound of Music.”  Take good care, all!

Moments Matter

Have you ever been in a mood and had something happen that changed it in a moment? It happens a lot, and some moments stick through the years. 

I recall being at work years ago, and cheerfully saying, “Good morning!” They responded quickly and sharply, “What’s good about it?” 

I don’t remember how I responded then, but I still think about how it startled me. I felt like I’d done something wrong, and I wasn’t sure what. My mood swiftly dropped from happy to resentful.  This memory helped me learn the life lesson that we’re all living different experiences, and lots of interactions have nothing to do with us. 

The same holds true for the ability of strangers to lift my spirits.  I regularly recall the child who years ago mistook me for their mom.  While I perused the shelves at eye level, I felt a tight hug around my legs paired with, “I love you.”  The child looked up at me and realized I wasn’t their mom. They quickly released me and ran to their mom in embarrassment.  Their mom and I exchanged a quick smile and assurance all was fine. I was left surprised by how good it felt to receive love that wasn’t even meant for me. I was grappling with immensely difficult life circumstances, and that moment lifted me up in a way I really needed at the time. 

My mood shifts between highs and lows throughout the year, but it can feel even more intense during the holiday season. I’m physically managing intensified Multiple Sclerosis symptoms, and I’m emotionally managing some sadness that the holidays often bring. I’m often interacting with more people than usual and pushing myself to do more than my usual routine.  The stakes seem higher, and I anticipate I won’t always be at my best. Similarly, every other person out there has their own world of stress, hardship, and expectations. 

This isn’t earth-shattering, surprising insight, but reminders to think beyond my thoughts help me when I’m having a hard time. Considering how hard life is for many helps me be more patient and compassionate. When I aim to spread kindness, I feel better about myself. When I feel better about myself, I’m more likely to spread kindness. That feels good.

Look Forward to Something

Fall where I live means shorter days, less sunlight, more rain, and colder weather. I realized after my Multiple Sclerosis diagnosis, that seasonal shifts to spring and fall are times when I’m more susceptible to MS exacerbations. I used to worry about it, and it’s taken a lot of effort to feel more confident approaching seasonal changes.

My usual approach is:

1. When things are tough, take inventory of what’s tough, what will help, and what’s helped before; and

2. Look forward to something.

For the first item in my approach, check out my post, Seasonal Well-Being Checklists, for some practical tips for coping with season changes. With this post, I’ll focus on the second one: Looking forward to something.  

It’s easy to focus on the season's challenges, but it’s helpful to acknowledge and take advantage of the benefits.

Shorter days mean sunrises are later in the morning, and I’m more likely to be awake to enjoy them. Many of my favorite sunrise photographs and moments of enjoying them were in the fall. Earlier sunsets and darkness also make it less difficult to get to bed and fall asleep. 

Shorter days also mean earlier sunset and darkness. I chased the Aurora Borealis in May this year and managed to see them spectacularly.  That evening I saw them lightly at 10:00 pm and stayed up until 1:30 am to capture the show.  It took a toll on me staying up so late, and it was worth it to me to see them for the first time. Tonight, I saw them at 8:00 pm and am still able to go to bed at a decent hour. They might not be as incredible this time, but I loved it and won’t need a couple days to recover from staying up late. 

Colder weather means I’m more comfortable outside and don’t need to worry about heat-induced MS symptoms. When the weather isn’t as warm and sunny, I feel less pressure to be outside. Spending time indoors feels more cozy, comforting, and relaxing. 

October brings Halloween and autumn foliage. Seeing photos from friends and family of kids enjoying the fall season is delightful. I love seeing their pumpkin patch outings, apple orchard picking, and Halloween costumes. I enjoy giving candy to trick-or-treaters and admiring their costumes. 

Early autumn brings low-pressure Thanksgiving and Christmas planning. Planning early for decorations, cards, gifts, and get-togethers can be done with excited anticipation rather than last-minute anxiety and stress. 

When I focus on what I enjoy with the season, it brightens my outlook and makes coping with challenges a bit easier. 

DIY Self-Care

Self-care: Anything that nourishes me physically or emotionally, 

reduces stress, or improves my well-being.

Self-care is necessary and often neglected. That said, it only feels neglected when we’re feeling stressed, overloaded, or having a hard time. It’s important to give ourselves credit for all we do to care for ourselves and others every day.  Perspective matters. If we remember how much we’re already doing, it’s easier to show compassion for ourselves. 

Self-care by definition means taking an active role in taking care of ourselves, physically and emotionally. It implies it’s solely a Do It Yourself (DIY) responsibility. When feeling overwhelmed or not well, it’s natural to believe the answer is to just try harder. This is when we need to remember we’re like a DIY home project: we can’t and don’t need to do it all on our own. 

DIY home projects include decorating, renovating, repairing, and maintaining our homes without hiring a professional. We wouldn’t expect our homes to be well-maintained or improve without effort. If we can’t afford to hire professionals, we need to know or learn how to do it ourselves. I’ve done a lot of DIY home projects, and all of them involved using tools, materials, and knowledge created or compiled by others. 

Those of us without great financial wealth serve as our own personal chef, housekeeper, chauffeur, financial advisor, accountant, and fitness trainer. When we recognize how much we do in all of these and other roles, we should consider ourselves daily superheroes! 

I like remembering self-care is DIY, because it reminds me to prioritize it. I have people who care about me and will help, but ultimately, I need to be responsible for identifying and addressing my needs. If I don’t know what I need, and I don’t share what I need, no one can help. If I’m clear on what I need and I need help, I can ask for help. If I ask for help, it’s possible to get help. 

I’m a fan of getting credit for what I’m already doing. Sometimes feeling better isn’t about doing more or being pampered, it’s about how I perceive myself, the life I’m living, and the people in it. Sometimes I interpret a busy day as rushed, challenging, and frustrating, and others I judge it as productive and rewarding. The difference between rewarding days is usually that I tended to my physical and mental needs. I took moments throughout the day to hydrate, stretch, use the restroom, look away from a computer monitor, and connect with people with interest and compassion. 

It’s helpful to reflect each day, and I use the following questions to help assess how I’m doing and consider what will help me with my self-care:  

• What nourished me today physically and emotionally?
• How did I show compassion for myself or others?
• If I’m feeling low, do I need to make a change or get help?
• What did I do today for strength, flexibility, or movement?
• Did I hydrate and eat food with fiber and nutrients?
• What was stressful today, and what would help? 

These aren’t pass-fail questions. They’re helpful as a self-care tool for reflecting and being honest with myself. Knowing I’m going to consider them helps me include healthy habits throughout the day. Answering them helps me decide how best to tend to my needs. 

Some days self-care will mean resting without guilt. Others are pushing myself to achieve something that fulfills my sense of accomplishment and purpose. Self-care sometimes requires striking a task from the list without doing it. All of these situations and decisions are worth celebrating as successful self-care.