Showing posts with label Perspective. Show all posts
Showing posts with label Perspective. Show all posts

Sunday, November 5, 2017

Being Grateful: Validate the Hardship and Strive for the Bronze

I used to think being positive meant focusing only on the good things in life.  I was really good at it too. A friend would say she’d had something bad happen, and I wouldn’t miss a beat to respond with how great it is that a worse outcome didn’t result.

I did it with myself too.  It seemed like if I let myself think about the difficult things, that it was being negative. That it could lead falling into a dark place of feeling bad and never climbing out.  I once had a counselor tell me after 9/11 that thinking about what happened doesn’t make you sad. What happened makes you sad. 

In that way, thinking about having Multiple Sclerosis doesn’t make me sad. My chronic illness and progressing MS symptoms make me sad.  Ignoring them doesn’t change the fact that I have both. We’re not limited to feeling one emotion at a time, and feeling sadness or frustration with one aspect of life doesn’t preclude feeling optimistic.  I’d argue that we need to feel one to appreciate the other. 

To feel genuine gratitude, I need to know it’s not mandatory to stuff my feelings and be happy every moment. I can’t ignore the tough parts of my life and only acknowledge the things that make me grateful. I can’t just write a list of unrelated things to be thankful for and stay sane. If I’m feeling sad or resentful, I need validation that it’s understandable to have those feelings. If I skip this step, I’m minimizing my frustration or implying I don’t have a reason to feel bad.   Once I sit with it, grieve for it, and assure myself I’m not weak or overreacting, I can then choose to focus on things that make me grateful. Sometimes it’s a quick shift, other times it’s a rough climb out of funk. Either way, it helps me come to a place of genuine appreciation in my life.

I think about it as winning a bronze medal. There’s an article in Scientific American, Why Bronze Medalists Are Happier Than Silver Winners, that I think we can use in our own lives to be happier.  People who compete and miss winning first place exhibit less happiness than people who don’t perform as well but still make it to the podium. Silver winners focus on the one person who did better.  Bronze winners compare their performance to all the people that tried and didn’t win anything. 

When I’m grateful, I’m recognizing my efforts and satisfaction. I’m not seeking perfection.  I’m looking at how amazing things already are.  I may acknowledge what could be better, but I’m recognizing all the ways it could be worse. Some people seem to have a point of pride of noticing the error or the flaw in things. They can make you feel like you’re never good enough. Try not to judge yourself harshly and add to feeling miserable. 

How we perceive our situation makes all the difference. When living with a progressively disabling chronic illness, things will stink and be sad and frustrating and feel too big to deal with at times. Sometimes the best I can do is know that how I feel right now won’t last forever.

The measure of success changes depending on my health.  If I can participate in a race and come in last, I’m grateful that given my circumstances I can do it at all. If I feel bad, I know that’s a part of the condition and grateful for the abilities I still have.  If I’m experiencing a permanent loss, I acknowledge that it’s sad to experience the loss and grateful for the time before the loss.

Strive to have a mindset of someone who’s coming in third.  Or someone who’s in last place and may or may not finish. You’re still doing it.

Tuesday, October 10, 2017

Some of the Highlights of My MS Library

The library and book store helped me immensely in my journey to adjust to living well with Multiple Sclerosis. Prior to purging my library, I took stock and reminisced how each book provided a portal to another way of seeing things.

I've read a lot of books about Multiple Sclerosis. I literally read every book I could find at the local library – no exaggeration - and then every book I could find and afford at the bookstore.  There were memoirs by people with MS, how to books written by people living well with MS, and other how to books by doctors suggesting they have the answer to MS. I've soaked up novels with fictional characters with MS, and I've devoured books about people with other health issues to see how they deal with issues often found in MS.  

Take this unpredictable disease that is completely different for each person, and find a book that will describe to me what I should expect. Explain why I feel the way I do, and tell me what my future holds. Tell me what I need to do live my best.  Easy.


I gleaned something from everything I read even if it showed me things that wouldn’t work for me. There were single phrases, lessons, and relatable events in books that made the time spent reading them worthwhile. Other books provided perspective and suggestions throughout that helped me find strength and motivation to take on my own challenges. 

Just a few of the books that touched me follow:

29 Gifts by Cami Walker – I LOVED this book and gave it to everyone in my family for Christmas one year.  It was after reading this book that my perspective really shifted about my value in the world. Through practicing daily giving, I learned the wide range of gifts I’m able to provide that don’t depend on money, my job, or my mobility. It convinced me that even if MS takes all it can from me; I’ll still have value and an ability to contribute to society. See the rest of my post, Fear, Gratitude & Hope Through Giving.

Michael J. Fox’s books, “Lucky Man,” “Always Looking Up: The Adventures of an Incurable Optimist,” and “A Funny Thing Happened on the Way to the Future…” inspired me greatly.  I felt a kinship to Michael’s attitude and approach to life living with Parkinson's Disease.  They were easy reading, relatable and not intimidating, and they lightened the mood on really hard life situations.

“Crazy Sexy Cancer”documentary by Kris Carr was one of my early favorites and led me to read three of the books she wrote soon after the documentary came out.  It was early after my diagnosis I saw an interview with her while I was home recovering from an exacerbation and steroid treatment. I tried her dietary suggestions, and I incorporated juicing and drinking smoothies into my diet.  While eating vegan didn’t make me feel better, it was a good experience and worth trying. I still follow some of her recommendations, I admire her positive attitude and drive, and I respect her immensely.

“MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis,” by Allison Shadday was given to me by my diagnosing neurologist. She said that a grant had been provided to gift the book to all newly diagnosed MS patients.  I poured through that book and the National MS Society website in my first month.  While the website was informative, it was overwhelming.  The book was terrific at keeping things at a level I could follow. 

Dr Terry Wahls' TedTalk turned me into a full-on Wahl’s Protocol following advocate. I don’t like that people suggest she reversed her MS, but I’ve heard she didn’t make that claim. Her health suggestions have improved her health tremendously – from declining health and in a wheelchair to being fairly active again – but my opinion is such is the nature of MS. That said, I think she has a lot to offer.  I follow a lot of her dietary advice, but I’m still not including organ meat into my diet.  I tried for a while, but it didn’t stick as a habit.  I toy with the idea of adding it again, but it’s on my list and will be a priority when I’m able to take it on again.  Check out her books, “Minding My Mitochondria 2nd Edition: How I overcame secondary progressive multiple sclerosis (MS) and got out of my wheelchair. 2nd Edition,” and “The Wahl’s Protocol.”

I could go on and on, but this post would never end and likely get overwhelming.  These and many other books were a lifeline for me when the internet wasn’t the abundant resource for these issues like it is today.  I found over time that I was searching for people who knew what I was going through and could give advice.  While following their suggestions strictly hasn’t been the permanent path for me, I tried them and determined for myself if they worked for me.  Certain suggestions and moments they described thrilled me with their insight and compassion. These books kept me more evenly keeled than I would have been otherwise.  They gave me hope and motivation to keep going when things were rough.

Sunday, July 30, 2017

Wearing the Pretty Shoes: Part II

With only one exception, I’ve converted all of my shoes to accommodate my unsteady feet. Every time I opened my closet, I’d see shoes I loved but would be risky to wear.  I realized their presence in my wardrobe brought out feelings of sadness, and I decided it was time to let them go.  

Over a period of months, I’ve noticed when my feet buckle and would critique my shoes to see what it is about them that gives less support.  Shoes that I would have thought would be fine since they were low heeled and comfortable still weren’t working for me.  I’ve browsed shoes online analyzing what attributes I need to stay steady on my feet.

For now, I’m able to wear heels so long as they have a block heel.  They have more surface area connecting with the ground. Those that don’t taper support my feet side-to-side.

Given I still want to wear shoes I like and express my style, I took my time choosing replacements for my existing shoe wardrobe.  I wear a lot of skirts and dresses for work, so my shoes are often visible.  While some block heel shoes can look frumpy, others are stylish and chic.  The photos below show shoes I’ve purged on the left and shoes I’ve purchased on the right. 
 

I think it’s important as I adjust to MS symptoms to reduce the feelings of loss and punishment as much as possible.  While shoes may seem like a frivolous area to put time and attention, it’s an expression of our individual style.  Encountering new limitations on how we dress can be the “one more thing” that MS takes from us and wears us down.  It can be a constant reminder of how we have to make do with disease progression.  Adapting and feeling like I’ve retained my ability to express myself through fashion is empowering. A bonus is that I still get compliments on my shoes, and when that happens I don’t feel like I’m having to just make do. Instead I feel stylish and confident, and that feels good.


Sunday, July 23, 2017

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.

Saturday, May 6, 2017

We All Have Hardships And Inspiration Is Everywhere

This father lived a little over a year beyond his daughter’s death. He was in the middle of his 75th year when he died, and his daughter perished in the midst of her 47th year in her antique airplane. His passion for flight had become a joy for her to share with him. To learn to fly and live adventurously – these were in a hobby they could share that would help her connect with her father and feel loved.

Sometimes we don’t get what we need. This father, my grandfather, became fatherless at the age of nine at the beginning of the Great Depression.  This boy was thrust into the role of man of the house and helped support his mother couriering laundry for people. He’d pick up clothes for washing and return them clean. The price was a nickel as I recall.

The daughter, my mother, became motherless at the age of two. She learned her mother had left the family and wasn’t coming back. This toddler didn’t speak for hours, and ever after she spoke with a stutter she hadn’t had before. And when the daughter died, she left four daughters grieving.  They were three young adults and one child ten days shy of ten years old. All of them – the father, the daughter and the granddaughters - all lost someone they needed. The fact that they all lived with the absence doesn’t mean their loved ones weren’t needed. The void gets filled in some way – with heartache, distraction, and sometimes purpose, but that person never gets replaced.

There’s a new monument near the father and daughter’s graves. Three children all gone on the same day, much too young and with senseless cause. The Tower children were taken in an instant. I looked it up later and saw they’d perished in a house fire. The mother had escaped, and the father lived elsewhere. The fire was ruled an accident. It was the worst kind of accident – one that can’t be fixed.

In each of our grief we can feel isolated and lose sight of the grief others have had or will experience in their lives. There’s always a story that is more tragic. To feel the worst pain we’ve ever felt gets some perspective when we compare ourselves to people enduring pain we imagine to be exponentially greater than our own.

This doesn’t mean we should minimize our own pain. It only means we have an ounce of knowledge of the pain, loss and grief someone else might be enduring that helps us see what there is to appreciate in our own experience.

When in poor health it’s natural to compare ourselves to when we were in better health or to others that we presume are in good health. It’s helpful though to compare ourselves with those with greater challenges. Noticing perseverance is inspiring. It’s a helpful reality check for me to see people who can’t walk at all when I’m only tripping and in pain or to see people with permanently clawed hands when mine are aching and not cooperating as much as they usually do.

I could fear their reality as my fate, and when I allow that it depresses me. But when I look beyond the conditions and consider their lives as a whole, I’m inspired by their resilience, perseverance, and matter of fact acceptance of their conditions.

I may be chronicling my declining health, or I may be sharing a life worth living with challenges. You’ll form your own judgments, but I see it as sharing our invisible conditions to connect us and to remind ourselves that we aren’t alone in our fears, grief or hardships. We all have them in one way or another at different times in our lives.

There’s comfort in compassion without pity. While it may just be my pride showing, I prefer it that way. I try to convey my compassion with respect for the differences in our experiences that doesn’t come across as competing for the Who Had It Worse award. And I like it when people are able to do the same for me.

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.

Among my sisters, it was a given that our youngest sister had it the hardest. She’d had so little time with our mother and she still needed so much. At least we’d had our mother’s love and support through young adulthood.

I think of the Tower children and their family. I can only imagine the grief their parents live with. My mother died twenty-three years ago this month. It was a decade before I was able to talk about my mom without showing visible grief. The family of these children has been living with their absence just over a year. In their invisible condition, I hope people show them kindness, patience and compassion even when they know nothing about their lives.

And I hope people give this.  Not because the Towers deserve it, but because people can be amazingly kind.

Each of us has challenges. Sometimes we’re lucky and the things we’re dwelling on or frustrated with aren’t monumental. I think everyone always has a set number of challenges that they’re dealing with that are frustrating. It’s just at times that huge life events or conditions move in and make the rest seem inconsequential. When my problems are small I can appreciate them for their trivial nature, and when they’re big I can look for inspiration to keep going.  There’s always someone out there that is living well with more difficult circumstances. And that's heartening for me. 

Saturday, April 22, 2017

Black Swan MS

I learned about Black Swan events recently as they relate to investing. Multiple Sclerosis symptoms and progression seem to me to be personal Black Swan events. Nassim Nicholas Taleb developed the theory based on the history of black swans being thought of as an impossibility.  It was a known fact that they didn’t exist. So when black swans were discovered it was a surprise and significant, and in hindsight black swans seemed like something that people could have predicted or should have expected. 

Being diagnosed with MS was an enormous Black Swan event in my life. Suddenly the extreme fatigue, numbness and bowel issues that held no explanation for many years were obviously indications that something was wrong with my body. The signs were there, but I didn’t recognize them as related to each other or of any significance. Given how much these symptoms impacted my life, hindsight makes me seem foolish for not connecting them to a major health issue.

Most recently, my feet started buckling more frequently with a frustrating experience of losing the ability to walk temporarily. It surprised me.  It made me realize that MS is affecting my legs much more than I’d thought.  And in hindsight I remember all of the dismissible moments when my feet would buckle.  There were times when one foot would stop supporting me while standing among friends. Other times while walking, one foot would shift so that I lost my footing on flat ground and needed to catch myself. I just thought they were odd, one-off unexplainable experiences.  Now I recognize them as a very common MS symptom that I already knew about - spasticity. What is obvious to me now seems like it should have been obvious to me then. In my defense, the frequency and impact previously had been low.  Since they’ve increased, I see a pattern and progression.

Now that I know what’s happening, I can work with my doctor to try to offset how my body is behaving. I’m continuing to do stretching, strengthening and movement activities, and I’m adding medication, massage and physical therapy. My shoe choices are also changing to reduce embarrassment and possible injury.  It’ll take time and effort to see if I can change the course of how MS affects me.

It’s like reading a book or watching a movie where all will be revealed at the end.  I’m living in the middle of my story, and by the end the mysteries of my body will be pieced together, explained and understood.

Saturday, February 4, 2017

Invisible MS Symptoms and How They Affect Relationships Even When They’re Subtle.

Being diagnosed with and living with a chronic incurable condition can test and change every relationship a person holds dear. Invisible symptoms are especially tricky. I know after my Multiple Sclerosis diagnosis I didn’t want to burden others with my problems. Just because I had a life altering condition, I didn’t think it should affect everyone else.

One of the adult life lessons I’ve learned is that people who care about us WANT to help. Withholding our struggles increases stress on our part and creates a feeling of being pushed away on theirs. They hate feeling helpless. We do too, but we have more information at any point than they do.  Think about when you’re driving a car in inclement weather compared to when someone else is driving and you’re in the passenger seat.  When you’re driving, you know whether you have control of the vehicle or not. You know how well the brakes work, how alert you are, and how long it will take you to stop if something happens. A passenger has little information other than what they see and feel, and they have to rely on their trust in you. Having MS is like being the driver, and our friends are the passengers when it involves our health.

While their intentions to try to fix our problems, make us feel better, or help in any way they can may sometimes feel pushy and cause conflict, working through the unknown and developing a new relationship dynamic is well worth the effort. All of the relationships I still have today are intensely richer for the awkward conversations we’ve stuck with and the commitment we’ve made to interacting differently than we did before I was diagnosed.

Invisible symptoms like fatigue, pain, numbness, balance problems, bladder and bowel problems, cognitive issues and heat sensitivity can affect how we feel even when we think we’ve got it all under control. There are times when I think I’m doing fine or faking it well, and dear friends will say they notice I’m not feeling well. It’s especially impressive how well people know us when symptoms are subtle and we may not even realize we don’t feel as well as usual. For me I notice that my patience lessens and I have a tendency to feel more pressure from people by what they say.

I asked two dear friends what they had to say on this topic, and one said that what hurts her feelings is when I hold back and distance myself. I can justify it by saying I don’t want to worry her or bother her, but it’s more likely that I don’t feel like admitting I’m having an issue or that I’m not up for hearing advice in that moment. One skill I’ve tried to beef up is to recognize when I’m feeling pressure or don’t want to talk about something anymore and say so. I’ve noticed it’s harder to do this the longer I wait to say something, And while saying I’m not up for discussing something in that moment may hurt their feelings, I think it’s better than continuing to suffer silently. The other skill I’m working on is to tell them that while I’m not up for it in that moment that I do appreciate their concern and perspective. I also want to start saying that I think I can continue the conversation another time.

Being self-aware, communicating consciously and not reactively, and considering other people’s perspectives has made living and loving well with MS possible for me. It’s definitely improved my relationships, reduced my stress level and contributed to a life I love.

Monday, January 30, 2017

Aiming For A Bittersweet Life: The Liberation of Expecting To Become Disabled

Most health advice and guidance teach us what to do to avoid illness. I spent many years following all the advice and making my health a priority with diet and exercise. Once I was diagnosed with Multiple Sclerosis, my view of wellness expanded beyond just my physique, vitals and medical test results.  It now includes adventure, purpose, giving, gratitude, finances, outlook and relationships as well as physical fitness.

My outlook on my future has evolved to believing disability is inevitable for me if I don’t die young. There’s liberation in knowing disability awaits. While I continue to do things that improve my health, I’m embracing illness and aging. Assuming my body will decline someday has been freeing. I don’t live in fear. It’s like my leash has come off and I’m eager to do everything that requires physical mobility. I want to prioritize experiences and activities that depend on my body’s abilities and do them sooner than later.

I think of it as aiming for a bittersweet life to be positive. Living a positive life includes experiencing grief and anger and frustration. It's finding the beauty in all of those experiences that makes for a positive life. Sometimes when I'm feeling low the best thing to do is to watch a sad movie or listen to a song that breaks my heart because then I know I’m living all of life and not just the pleasant parts.

It’s not a negative perspective. It’s embracing the future as it could be given MS has no cure and the medications available today merely slow disease progression. Thinking positively doesn’t mean only hoping for the best outcome. It means assuming things will fall apart periodically and it’ll be okay. I’ll adapt. I’ll continue to find purpose and experience joy. All lives will end. A bittersweet life satisfies the wonderful and the heart wrenching, and I want to experience it all.

Part of embracing a future with an eroding body and disability is cultivating the skill of living well with loss. Get really good at it. I try not to sidestep it or just get through it but to genuinely embrace loss. My goal is to have had such a satisfying life with fulfilling relationships that there will be grief, but there will also be a sense of satisfaction that I didn’t hold back or miss out.

Positivity is not being happy; it's finding grace in that ugly terrible.  When I feel fear, I analyze it to figure out what it is I'm afraid of. My perspective is not just looking at the bright side of things. It's accepting the hard, challenging, frustrating and miserable as having their own form of beauty. 

Somewhat similar to physical agility where people are able to move and fall so that they don’t injure themselves and can get back up, I aim for emotional agility where I’m able to feel heartbreak and fear without it injuring or paralyzing me. The skill I spend the most time cultivating is experiencing pain, fear and discomfort without lashing out.

Since the day I was diagnosed with MS in 2008, I’ve become liberated and made myself and my goals priorities. Cultivating the skills to live through and embrace loss, find beauty in everything, and aim for the bittersweet has given me a positive perspective that works for me.

Friday, January 13, 2017

Wearing the Pretty Shoes While I Can and Experiencing MS Milestones

I saw a t-shirt once that said, “There will come a day when I cannot do this. Today is not that day.”

It holds true for everyone, but it’s especially poignant when living with a chronic debilitating disease. Disability may be inevitable for me. But it may not.  I can stave off these MS milestones as much as possible, but knowing that I may not be able to do things in the future motivates me to do what I can now.

I hit a frustrating MS milestone this week. I wore the absolutely most beautiful high-heeled shoes I’ve ever owned to a formal event. In hindsight I can see that after three hours of socializing and dancing that my feet cramped, my nerves quit firing correctly, and my MS symptoms took over. Usually the impacts are subtler. This time there was no mistake that MS had caused my ankles to buckle repeatedly. I could tell that my feet weren’t staying put or moving on command any longer. While standing still, one foot started to turn under against my will. I paused, tried to regroup, and took a step.  My right ankle buckled. I took the arm of a friend who supported me. I paused again to regroup and thought I could will my feet to cooperate. I took another step, and my left ankle buckled under me. Again grabbing my friend’s arm, I steadied myself and tried to regain composure. After a moment, I moved forward and both of my feet buckled. Then I realized this was MS. This was my MS, and no amount of will would override my feet not functioning.

Holding my friend’s arm and with her other arm around me, I steadied enough and realized I needed to remove my shoes. My ability to wear them that night was done.  I removed my shoes and walked barefoot to keep up with my friends. It took walking a distance of ten feet or so before I felt my feet would be able to cooperate again. Fortunately, my ankles weren’t giving way anymore. It was another hundred feet before my feet stopped spasming.

Practically speaking I think this tells me that I can wear high heels for walking and standing, but dancing in them may no longer be a good idea for me.

I was slightly embarrassed that people seeing me stumble may think I was drunk. I wasn’t drunk, but it’s a reasonable conclusion given the venue and the party atmosphere. Once I’d moved on to another area of the party, I figured people just assumed my shoes were uncomfortable and I was carrying them because I didn’t want to walk in them anymore.

I realize people may think that it’s not a loss to not be able to wear high heels. It’s true that I can have a wonderful life wearing flats. It’s also true that some people have no interest in wearing unconventional, impractical shoes. But to me there’s a difference between not choosing to wear them and not being able to wear them anymore. Yes, people may judge me as self-sabotaging with this, but I think with all life lessons we do what we can until we can’t anymore.  How we find out we can’t do something anymore varies, and sometimes we require numerous opportunities to learn the lesson before we change our ways.

I will keep wearing the impractical shoes when and where I can. I will also start looking for beautiful lower heeled shoes that still make me feel special. I’m glad I made a conscious effort after I was diagnosed with MS to start wearing shoes that were fancier and less practical. I want to take the opportunity to do things and be who I want for at least portions of my life. I think it’s better to have done it and remember having done it than to regret never trying.

This is bigger for me than the shoes. It’s an indicator of the many things I may lose as I age with MS. I know the risks, and I’m taking the chance even when it triggers symptoms. It’s walking a fine line of doing what’s good for me and doing some things that may be physically difficult but emotionally nurturing. I already feel older than my years given I deal with daily inconveniences that people I know 10-20 years older than I experience. I don’t want to give up things until it’s clear that it’s best for me or the consequences become too great. For me the consequence of triggering a pseudo exacerbation, where symptoms act up but no new disease activity occurs, are acceptable. Reflecting on this experience leads me to believe this was a pseudo exacerbation. I know this because the symptoms were temporary. While my fatigue and stress levels have been elevated for some time, I've been able to keep them manageable with lots of self-care.

Pushing myself to the point of triggering an exacerbation with new lesions is not worth it to me. Knowing when my actions are one or the other is tough to discern, but it gets easier each year.  I pay close attention to my body and how it responds to what I do, eat or think, and I think I’m able to tell the difference now. And throughout this life journey, I’m going to enjoy each step of the way, recognize limits as they emerge, and adjust as I can. But I’m going to make a special effort to do a lot of things now that I may not be able to do someday. So far, today is not that day.

Read Wearing the Pretty Shoes: Part II for more on shoes.