For the Love of Biking – It Really Can Be for Everyone

In a conversation with coworkers years ago, one person reflected on his summers spent in their backyard pool in California. I responded with excitement and jealousy that he had his own pool when all I had was a bike!  Another coworker who grew up in Hong Kong, exclaimed with awe, “You had a bike?!?”

Wow.  I laughed at my own ignorance to my privilege.  To think she grew up in a large city and didn’t have a bike at all made me realize just how special it was that I could spend my summers biking and exploring. If I’d had to choose between a backyard pool and a bike, I think in hindsight a bike would have been a better choice for me.  

As a child, my bike was my freedom. It allowed my sister and me to spend summer days at the pool in a neighboring town without limitation of our parents’ schedules. We biked to get ice cream, eat lunch in the town square and even to rent canoes.  We’d practice riding without hands and see how far we could go.  Our bikes were extensions of ourselves throughout the summer.

Once we could drive, bikes temporarily lost their appeal for transportation.  Enter my college years where I didn’t have a car, and my bike allowed me to get to classes and work.  Every time I allowed less time for travel meant my fitness benefited from pedaling faster to get there in time.  

As an adult, I’ve enjoyed mountain biking and group rides immensely.  Participating in sprint and Olympic distance triathlons have been rewarding experiences. This summer is a summer for biking for me.  I signed up for the two-day Seattle to Portland bicycle ride, and I’m excited to do what is a bucket list experience for me.  Being able to train and do the ride with friends is gratifying for the camaraderie beyond the health benefits.  

Bicycling suits me well given the impacts Multiple Sclerosis has created in my spinal cord.  I love jogging and manage extremely well, but bicycling allows me to continue when my feet lose feeling and coordination. Hills create natural intervals where I can put forth effort and rest on the downhill to best leverage my energy. Fatigue lessens and I sleep better when I’m active.  

I have a new bike! 

This summer, I was fortunate to have been gifted a bike from the organization Meat Fight.  I love my new light and zippy road bike.  It allows me to go faster and be more comfortable while riding.  Having an expert watch me ride, ask questions and adjust the bike to me was fantastic for improving my experience cycling. Through their Meat Fight’s Meat Bike program, they give bikes to people with MS.  Becoming a part of this group is fantastic for connecting with people with MS of every level of active from extreme endurance events to beginners wanting to start riding.  Bikers ride all types of bicycles ranging from road bikes to recumbent trikes to hand cycles. 

Bike options for all abilities

The more I pay attention on the trails and online, I see that bicycling can be accessible to anyone these days.  The options available accommodate a lot of health issues that result from aging, chronic conditions and disability.  

Recumbent bikes are great when balance might be an issue. Electric-assist bikes can be useful when wanting flexibility and back up for pedaling.  Tandem bikes come in both side-by-side and in-line, and they can be excellent options if vison is impaired. Handcycle bikes are propelled using a person’s upper body instead of their legs.  

When disability advances beyond being able to pedal solo or at all, there are bikes with wheelchair tandem setups that allow people to sit in front of the cyclist pedaling.  An organization near me, Sequim Wheelers, provides free bike rides to elderly and disabled community members, including children.  When I saw this, it heartened me to know that people who are not able to enjoy trails on bikes under their own power can now do so. The fresh air on the face, the beauty of the landscape, socializing with others in an active, outdoors setting – these can be available to everyone.  

I’m encouraged to know that cycling can be adapted to suit my needs should my abilities change with age and Multiple Sclerosis progression. Being outside, active, and among friends improves my health and maintains my well-being mentally and physically.   It comforts me to know this hobby can change and adapt with whatever the future brings. The only limitations are my ego and perspective. 

The People Who Surround Me: Those I Keep and Seek

As I age, I’m getting more intentional about who I spend time with and how I shape interactions.  We can’t always completely avoid people who drain us, but we can shift how we approach our interactions.  We can’t always spend enough time with the people we love, but we can shape our relationships to maximize our joy and connection.  A lot of our daily lives involve acquaintances who with a small amount of attention can become friends. Our friends and family won’t always have the skills or perspective to meet our needs, but we can find circles of friends who will fill the gaps.

People who drain me: If I can limit time with them, great.  If I can’t, I like to assume they’re doing the best they can, I’m not going to change them, and perhaps they shouldn’t change. I’m not perfect, and I likely have aspects of my personality that some would find irritating.  I’m not going to come up with a comprehensive list of personal flaws, because I think that would be extremely bad for my self-esteem.  I’d rather look at it as we all have our issues that are both good and bad.  Some find our quirks endearing, while others find them unbearable.  The aspects of others that drain me aren’t inherently bad. They just don’t mesh easily with me and my set of character traits and preferences.  For interactions that I find extremely difficult, I’ve spent time listening while repeating a mantra fitting to the challenge.  In the midst of having someone spout off at me at work, I’ll mentally repeat to myself, “They’re teaching me to be better at my job.”  For times when I get frustrated I’ll repeat, “They’re helping me practice being patient and kind.” I might even have to get clear with myself about how I’m contributing to the tension and repeat, “It’s not their fault I’m crabby today - get it together.”  

For the people I would love to spend more time with but am not able due to distance or schedules, I find ways to connect in hopes of enriching the relationship with limited interaction.  Certainly we can call, text and facetime, but simple things like playing online games keeps me feeling in touch with people I don’t talk to often. One friend plays one move of a Scrabble game each morning, and I play one back. When I saw her recently after many months, she verbalized what I felt too – we feel connected with just one play per day.  Random messages about things that make me think of them are easily shared via text, email or social media.They know I was thinking of them, and I feel good letting them know.  

We spend a lot of time with a lot of people in short spurts of time.  They may be our medical care providers, baristas, grocery store checkers, mechanics and neighbors.  These are the relationships that aren’t close, but they can be immensely helpful to living a high-quality life.  When we make them friends and contribute to quality interactions, our lives are richer for it.  Smiles that brighten our day help us be more likely to react with grace when encountering rudeness or frustration. If we expand the circle of people we consider to be part of our life, we recognize how much they contribute to our happiness and how much we may influence theirs.  

Online groups can be instrumental to meeting some of my emotional needs when I don’t personally know people similar to me.  Very few of my friends have a chronic health condition like I have. I know even fewer who are experiencing my health challenges and have an activity level similar to mine.  Social networks like My MSAA Community and closed Facebook groups have been excellent for me to connect with people similar to me in one or more ways. I belong to one group with women who do triathlons.  Another is for women with chronic illnesses who do triathlons.  I belong to a group for people interested in sharing research related to MS. Another is a personal share site for people with MS.  These sites feel like safe places to learn more about things that can be embarrassing from people who know what it’s like to live with chronic conditions.  These sites provide me with inspiration, motivation and helpful tips for my fitness goals. They also provide validation for the frustration I experience when my body holds me back and I’m sad that my life includes Multiple Sclerosis.  I get a lot from them.  And because I get so much, I’m compelled to share and support others in these groups. Receiving support from others helps, and so does giving.  

The people who surround me give me inspiration, motivation, comfort and strength. They validate my struggles and celebrate my accomplishments. Even the challenging relationships teach me where I have opportunities for personal growth.  Whether they are close friends, quick daily interactions or distant online acquaintances, they help me navigate my journey and contribute to a life I love. 

Fresh Starts: Changing Self-Talk to Serve Me Better

Sometimes we want to make changes, and sometimes we need to make changes. We choose some, and some are thrust upon us. It doesn’t always mean we’re ready or able to make them. Making a fresh start can be exciting and intimidating.  

I’m a big fan of trying to make these changes easier. Like the placebo effect can help us feel better when we take sugar pills thinking they’re medication, I’m all for using how our brains work to – for lack of a better word - trick myself into doing things I want to do.  

How we think, our opinions of ourselves, and the language we use can limit us and our personal growth.  I’m considering which of my memories, thoughts and reactions aren’t serving me.  Some of them make me feel like a powerless victim.  I want to lose the ones that are holding me back from doing things I want to do and from being who I want to be. 

With my divorce from a long-term marriage final, I’m making a conscious effort to change the stories I tell.  Things that were funny and garnered laughter when shared previously are now sad given our relationship ended.  With self-reflection and practice, I’m learning to stop myself before telling some of these stories that feel like automatic responses in conversation.  When friends or guests would ask where something is that I don’t have, I initially said, “I used to have some, but I didn’t get them in the split.”  Over time, I changed it to “I haven’t replaced them yet.” Recently I didn’t say anything when it came to mind in conversation.  Soon, I may replace some of these items with things I love in hopes of adding more enjoyment to my new circumstances.  I think once I’ve trained my brain to react with a thought that is pleasant for me, I’ll have completed the transition for the better. 

If I keep telling myself or others about memories that make me sad or feel bad about myself, I’m hampering my ability to move on. I’m actively working on a new life and creating a new outlook in an effort to respond in ways that make me feel good about myself. I don’t need to forget or ignore challenges, but I don’t need to keep giving them power over my future.  I get to be the editor of my life story, and I can be intentional about what serves me well for what’s to come.  

When I think about my body and my health, am I focusing on what I’ve lost or what I’ve gained?  It pains me when I think, “Multiple Sclerosis took this from me.” It’s true, it did. MS has taken a lot from me, and it’s not something I dismiss. It took from me the ability to do some activities I enjoyed.  It took my sense of self as it was.  It revealed my belief about my excellent health to be one of ignorance.  It’s taken years for me to learn how my MS affects me and what helps me live well with it.  If I focus on what MS has taken, it doesn’t feel good.  If I focus on how my life is better today than it was before I was diagnosed, I feel better.  

I’m trying to rewire my brain and my automatic responses to be thoughts and comments that help me feel good about myself. It helps me to notice where my thoughts aren’t serving me in a way that encourage, motivate or inspire me.

Just in everyday living, I aim to be intentional about my word choices.  The word diet feels like punishment to me.  I replace the word diet with nutrition, sustenance, food choices and delicacies. My food choices are somewhat restrictive given food sensitivities. I’d love to lose a few pounds, but I try to think of it as respecting my body by making nutritious food choices.  Some foods are sustenance, and some are indulgences. I’ll avoid foods that don’t sit well with me.  And when I choose to eat them anyway, I’ll refer to it as feeding my soul so that I can stay on track.  Will power, restriction and fear don’t keep me making the food choices I’d prefer long term.  I need to allow for indulgence periodically to maintain overall good health.

When it comes to physical fitness, I avoid saying I need to exercise. Exercise connotes punishment and dread when I hear the word. Instead I write “daily fitness” on my to-do list.  I aim for a mix of stretching, strengthening and improving endurance.  I’ll say I need to be outside and active when I’ve felt I’ve been too sedentary. 

For me, the language I use influences how I feel immensely.  If I can frame things in ways that entice me rather than shame me, I’m more likely to act on them.  

In the last year, I felt like I was getting a lot done, but I also felt like I was coping. I’d really like to shift my thinking to feeling like I’m maintaining and thriving.  Making a fresh start is a perfect time to lose what doesn’t help and build what does. How I talk to myself is a terrific way to start.  

Guest Blog for Northern Lights Life Coaching: Weakness, Wisdom & Finishing Strong

I wrote a guest blog for Northern Lights Life Coaching by Kate Olson, "Weakness, Wisdom & Finishing Strong." I was truly honored when she asked me to submit something on a topic I’m passionate about.  It was posted this month, and I hope you’ll follow the link to read it on her site. I decided to write about how I try to make decisions – first looking at whether I’m coming from a place of fear or strength in assessing my situation and options.  I’ve provided this advice to friends making tough life decisions, and they’ve said it really helped them.  It always helps me gain clarity for the best option for me to pursue.  I’d love to hear your thoughts!

https://www.northernlightscoaching.net/guest-blog/weakness-wisdom-finishing-strong

Life Goals: Checking in When the Seasons Change

When summer turns to fall, a sense of routine and normalcy seems to return to my life. Kids are back in school, my coworkers and I are done with big vacations, and we’re all ready to get back to work.  This year it occurred to me to start reflecting on this year and planning for next year earlier than usual.  I think this might be a terrific time of year to assess what I’ve accomplished, what I want to accomplish before year end, and what I want to accomplish in my life as a whole.

Much like the beginning of the school year with class plans and schedules, this is a natural time of year to approach as a check in point and beginning.  I usually reflect on my life and create New Year’s resolutions in December and January. It works, but with the holidays and so many extra obligations and erratic scheduling, it’s sometimes difficult to find time.  In September, there’s less of a deadline and more of an organic opportunity to check in. 

My method is pretty structured. Okay, I’ll admit it’s probably extremely structured.  Yours doesn’t need to be like mine at all.  Just stopping for a moment and considering our lives periodically is helpful to prevent one year from blending into the next and time seeming to pass us by.

That said, I’ll share mine in hopes it spurs your own imagination for how you do it differently and might want to modify it.  

I listed things I love and bring me purpose, and I’ve created a vision of what I want my life to be.  These lists have stayed really consistent over many years.  I organize my goals by categories of my life that are important to me. The categories are similar each year, but the goals I have within each category change a bit as I change.  I use these goal items to decide what I’ll do each year to achieve these goals.

Things I love/Purpose:

• Be healthy, organized, prepared, and financially well-off. 
• Enjoy life, make things easier where I can, and spend energy and time on things I love or enjoy. 
• Build and enjoy relationships
• Feel useful, contribute to society.

Vision:

• Be as healthy as I can be. Strong, fit, flexible and energetic. 
• Have a home that is relaxing and company ready anytime.
• Explore interests and follow them. 
• Be excellent with my career and enjoy it.
• Be financially responsible, and prepare for retirement and possible disability while enjoying today.
• Do things now that I want to do and that I may not be able to do in the future if I lose mobility.
• Cultivate good relationships with people I care about and care about me.
• Express myself creatively with photography, art and writing.

Life Categories & Goals: 

• Health & Fitness: Improve strength and endurance. Be consistent with daily fitness, nutrition and self-care.
• Relationships: Call, visit, and connect.
• Finances: Be organized. Purge what doesn’t need to be kept. 
• Home: Continue improvements, streamline things to make it easy to care for and keep clean.
• Creativity: Continue blog and cultivate writing skills, take photos and work on projects.
• Travel/Adventure: See family, explore new places and experiences.  
• Career: Drive the office forward, accept new roles, cultivate working relationships and keep learning.

Plan:  This gets pretty personal, so I’m not going to share my list as is. I will share some of the items on the list to give an idea of how I do it.

1. Visit family, attend my high school reunion, and do a 14er hike. 
2. Write a monthly blog post.
3. Take pictures and organize them.
4. Work on kitchen remodel, try to finish before year end.  
5. Go to concerts, plays and museums. 
6. Maintain financial system, filing, purging and paying bills on time.  
7. Complete health insurance online health assessment to make sure my out of pocket is the minimum possible next year.  
8. See my neurologist and get MRIs annually.  Take medications and supplements consistently.  
9. Have a daily stretching routine and stay active.  Do a mix of short and long workouts weekly.   

Reflecting on my life vision and the goals I’ve set for myself was an extremely motivating exercise for me. Doing it in September instead of December or January allowed me to see how much I’ve done and decide what I still want to do with the months remaining in this year.  It showed me what may need to move to next year or come off the list entirely.

I think putting our goals on paper or in a computer document is a terrific way to see how much we change over the years and how much we don’t.  The thought process of putting a task to things we value in life provides clarity for where we have control in our lives.  For me, it shows how consistent my values and preferences have remained. It feels good to look at how far I’ve come and recognize how much my life has become what I envisioned years ago. It feels great to see that I’ve built a base that makes me happy and may allow me to do so much more in the years to come!

Each Person's Experience Is Different: My Highs & Lows and Health Goals

In the People Living with Multiple Sclerosis community, I’ve sensed an unwritten rule that you don’t show how well you’re doing when others are having a hard time. People are encouraging, but it seems that they want to help you when you’re not doing well.  If you’re excelling, they may say good for you, but they’ll add what a hard time they’re having.  They may say that there’s no way they could do it because MS limits the things they can do. I think I get it.  I know it’s hard when I’m having a hard time, and I know sometimes it feels like it’s easier for other people.  I’ll think that if they had my problem – or problems – that then they’d understand how hard it is for me.  

I’m a champion for the truth that just because one person does something, it doesn’t mean everyone can do it.  It doesn’t mean that those not doing more are lacking or failing.  

It’s been a rough year for me stress-wise and physical ability-wise.  I’ve had frustration and fear that ramped up my MS fatigue to a level where at my lowest I slept 24 hours in two days, and most of the rest of the time was still spent lying on the sofa.  Another weekend when I rallied enough to attempt a walk outside, I realized only a half mile away from home that I may not be able to make it home. I seriously considered calling a friend to come pick me up and drive me home.  

I worried that my physical abilities may never get better, and I feared this might be the most I’ll be able to do moving forward. It made me anxious that this might be my life now.  I hoped that it would get better, and I told myself to just focus on each moment and each day. I told myself that maybe I just need to take it easy right now. That maintaining my work and relationships should be my focus, and I could come back to my regular fitness routine another day.  That just because I’m not doing it now, it doesn’t mean I’m being lazy or negligent. That I’ll get back to it when I’m ready.

I firmly believe in explanations, not excuses.  They often look like the same thing, but I think they’re different. For me, excuses are things we say to get out of doing something.  Explanations are things we acknowledge and accommodate when they limit us from doing things we want to do. I want to be fit and active, and I want my body to be capable enough to not limit me from enjoying activities.  Sometimes I’ve had people at the gym act as if me not trying harder is making excuses.  I’m very clear with myself that I’m not making excuses.  I WANT to be able to do everything.  I’ve LEARNED that overdoing it will sabotage my ability to be as comprehensively healthy as I want to be.  My biggest challenge has been learning moderation to know when to push myself and when to rest.  This is an explanation, not an excuse.  

Today my Facebook memories included a triathlon I did two years ago.  I knew I wanted to get outside and do something active this weekend.  As the last day in a three-day holiday weekend, today was the day.  I put on a shirt from the first triathlon I did - to be clear I’ve done a total of two – and I committed to at least walking to the coffee shop.  

I went farther and faster than my body has any right to given I’m coasting on a physical fitness level achieved from efforts made many, many months ago. It felt good to be outside with my blood pumping and legs moving again.  It was tough, but doable.  I paid attention to my body and accommodated it by alternating jogging with some walking breaks. It’s heartening that a few weekend warrior activities interspersed along the way have perhaps been enough to keep me from losing all fitness ability.  

I know that one jog doesn’t mean I’m over this challenge.  It’s one hour of one day pointing in the direction I want to go. What I wasn’t able to do earlier this year, I was able to do today.  I’ll likely hit lows again.  MS is unpredictable and uncontrollable.  I manage my MS, but I’m not arrogant enough to think I’m controlling it.  I’m doing what I think is best in each moment to give my body its’ best chance at achieving my health goals which are:

1. Don’t have an MS relapse. This is a lofty goal, but paying attention to my body, recognizing triggers, and taking my disease-modifying medications helps. Not pushing myself further when I'm vulnerable has helped.  
2. Stay injury free, and do what it takes to recover (as much as possible) when I do get injured.  
3. Try not to get sick. It sounds a little funny saying that since I have a chronic illness, but I’m trying to not add more health conditions that I’ll need to live with either temporarily or permanently.  I try to avoid getting a cold or flu, because it lasts longer than it does for others and it triggers other MS issues I have.  I try to eat well and move enough to reduce the chance more ailments will be added to the list of things I need to cure or manage.
4. Feel good.  To me, this means keeping my weight within a healthy range, being strong enough to do things, and being active.  Sure, I’d love to be more toned or look like I have in the past, but it’s not my primary goal, and it comes after my first three goals.     

Beyond these goals, everything is a bonus.  Over the course of this year so far, the choices I made to try to achieve these goals varied greatly.  My ability level has ranged from extremely low to good enough to literally climb a mountain.  I looked the same at both points. I think the only difference may have been my heart rate and expression.  

This is what I really care about.  This is what I spent many paragraphs describing and wandering among ideas. Someone else with my problems may seem better or worse than I do.  Someone who looks great may be having a very difficult time.  What looks easy usually isn’t.  And what looks hard may not be as hard as it looks.  We just don’t know anything about anybody’s experience unless we ask, they choose to tell us, and we believe them.  

I Need To Up My Game: Prioritizing Needs

When I feel great, there’s no need to change what I’m doing.  Following new and improved advice may actually break the complex formula of nutrition, fitness, and lifestyle that keep me in good health. If I’m not feeling well, figuring out what I need and prioritizing it within the mix of all my other needs becomes an issue. 

We subconsciously prioritize and adjust our behavior to meet our needs all the time.  For me the demand to put effort into prioritizing needs comes when I don’t feel well.  I’m stressed, something hurts, or some part of me isn’t working as well as usual.  It could be one small thing that is snowballing into a big issue, or it could be a big issue that’s easy to identify yet overwhelming to fix.

This past year, my pain level increased to a level that was affecting sleep and causing debilitating discomfort.  I researched possible causes and tried stretching, massage, supplements and rest. It helped a little but not much.  I went to a massage therapist who worked the muscles, and it caused almost unbearable pain for days. Through my neurologist, I tried medication and was told I’d need to take it for a few weeks for the side effects to mellow out.  I gave it a good try, but I could see it wasn’t going to be a good long-term solution for me right now.  I obtained a referral for physical therapy, and there I had someone work with me to specifically design a fitness regimen that will address my nerve pain. She assessed my personal condition and through trial and error pinpointed the cause of the pain.  She helped me devise a mix of exercises that will increase my strength, improve my balance, and hopefully reduce the nerve pain I’m living with.

Each step of the way, I had to make my health a priority while still doing everything else my life requires.  While under her care, I dutifully did all the exercises she prescribed.  It was tough doing it all, and it wasn’t something that I could sustain.

When I think about doing everything the physical therapist advised, I get overwhelmed. I want to do it all, but it’s too much right now.  I anticipated this and specifically asked her what the minimum daily fitness activities would be so that I could start there.  This took being honest with myself and with her.  I had to be open to being judged negatively and accept I’m not going to be the model patient I’d love to be. 

I already have a minimum fitness routine I do every day and have been doing for years.  Seriously, I missed eight days two years ago and none last year.  I thought I was doing great, but it wasn’t enough to protect me from having problems develop.  So now I’m working on modifying my routine to deal with my changing body. I’m incorporating the minimum she gave me, and I have a long list of things to add when I’m ready.

I’m not doing everything she gave me, but I’ll get there.  And I like having the guidance for what to do when I’m ready to up my game. She may or may not approve of my approach, but I’m the one who knows me and lives with the consequences. 

It feels like slow change, but it’s not no change.  I’m in it for the long haul and doing what I can as I can. 

You Look Good, You Must Be Doing Well!

I hear it whenever I see someone I haven’t seen in a while.  “You look good, you must be doing well!”

Thank you. Really. But I’m not really doing well. I’m doing everything I can think of to try to feel better.  Things like eating healthy, being active, getting sleep, socializing, and connecting with loved ones. I’m sitting in the sun for vitamin D, and it gives me a bit of color while sun bleaching my hair a bit.  All of these efforts make me look good. 

I’m researching my symptoms and doing the things suggested to slow my MS progression. I’m stretching, swimming and jogging.  People have assumed that because I’m able to be active that I’m doing well.  I'm active because it feels good, but I’m also active because I’m scared that my muscles will atrophy if I don’t. My muscles already hurt constantly, and all of my efforts aren’t enough to alleviate the pain or stop the jerky movements. My muscles are likely to atrophy over time in spite of my efforts, but I hope to slow the progression as much as I can. I’ve always strived to live a healthy lifestyle, but now it feels nonnegotiable.  It’s mandatory self-maintenance.  Whatever happens, at least I’ll know I did all I could.   

Someone recently told me that my prognosis was better than someone else’s because, “You have a good attitude, and at least you can control your MS somewhat.” I believe she meant well and was trying to assure herself that I’ll be fine. But it’s an uninformed assessment.  MS has no cure.  People with MS aren’t disabled because they didn’t do enough to stay healthy. There are a lot of theories and anecdotes for what helps, but nothing’s been proven to halt or cure the disease yet.  Each person’s disease progression is unknown and unpredictable. It’s really just the luck of the draw for how severely MS affects each person over time.

Thankfully I don’t look as bad as I feel. And it’s nice the things that help me combat my MS symptoms make me look better. So like Bill Murray says in Caddyshack, I got that going for me which is nice.