Repeatedly Accepting My Health Condition: It’s Not One and Done

Living with Multiple Sclerosis, I find I repeatedly need to accept my diagnosis and reality.  I have moments where I feel great and totally at ease with my health, life and possible future decline.  Other times I have symptoms ramp up, and frustration and fear can leave me rattled.  

I’ve been living with my diagnosis ten years, have likely had MS at least another 15, and have accepted my MS diagnosis. Unfortunately, it’s not a one-time event or accomplishment. Friends who were diagnosed 20 and 30 years ago also periodically need to adapt to changes in health and abilities and accept things are different than they’ve ever been. I find the process of encountering challenges, adapting, and coming to a place of acceptance is a life skill that we use repeatedly.  Sometimes it’s easier and feels seamless, while other times the challenge is harder and the process takes longer.   

If I compare myself to people with terminal illnesses or living with disabilities far more limiting than my own current condition, I’m grateful that I am still active and quite capable. When I’m not feeling great and I compare myself to people that appear to be healthy, active and without any illness, I sometimes feel sorry for myself.  

A book I once read described how a person with MS went to a rehabilitation center for people with all types of issues. The people who were para or quadriplegics due to injuries were deemed better off than people with MS, because their trauma and damage was done. The people with MS would continue to experience disease progression and decline in health and mobility at an unknown rate.   I appreciated hearing that perspective, since the fear of the unknown and inability to prevent probable decline is an added mental burden to conquer.  I’m thankful medications to slow MS progression exist, but I’m not arrogant enough to think it will prevent my decline.  I am hopeful that myelin repairing medications will be developed and will someday be available to us.  I hope this is in my lifetime, but I anticipate it is more likely to benefit those that come after me.  

I’ll compare how I’m doing with others, and I’ll appreciate that my health is still highly manageable. I’ll be thankful that I’m able to do so much still given MS has done a lot of damage.  To me, the result is that I have an appreciation for their struggles. I make it clear to others that I don’t know their hardships.  I merely feel a kinship to them and wish them well.  

I do feel like I’m experiencing bodily issues that may come with normal aging, but I have them 10-20 years younger and for a different reason.  Often people will respond to an issue I’m having with, “You’re too young for that!”  They’re right. Yes, I would be too young for that if I were a healthy person without a chronic illness.  But I have MS, and that means I’m lucky my problems aren’t worse.  I may actually have been staving off these issues longer than other people with MS have.

I think it's normal and even pretty difficult to avoid comparing ourselves to others. I think it's what we do with that mentally that matters. If I can build kinship and compassion with others instead of feeling resentment or self-pity, it builds a sense of gratitude and provides a reality check that helps me cope with my own condition.  Feeling compassion for others can help us build compassion for ourselves, cope with MS, and accept our condition.

When I see others living seemingly without any health limitations, I try to remember that I too used to think I was as healthy as a person for my age could be. I was very active with early morning workouts, running competitive races, and doing gymnastics through my late thirties. In hindsight, I can see that I was living with MS for at least 15 years while experiencing relapses that I chalked up to normal aging, stress and health issues. This reminds me that people we know may be living with as yet undiagnosed conditions like heart disease, cancer and/or autoimmune diseases. 

Whenever I think during a race or fitness class that doing this is harder for me than others and no one else knows what I’m going through, I try to remember that they may be living with and overcoming unseen challenges too. It reminds me to just do my own thing and push myself at a level right for me. 

I think whether we think someone else’s condition would be better or worse than ours really depends on each of our levels of resiliency, biology, approach to life and sense of self. One person can feel depression and not make it through, while another can experience similar circumstances or diagnosis and find a greater sense of purpose. Boosting our coping strategies is necessary to live with and possibly thrive with chronic illness.  Strong personal relationships and sense of place in social, community or religious organizations help us live beyond our own thoughts. A network of medical care providers with a counseling component can address our physical and mental health needs as they change. Finding a sense of purpose that extends beyond our physical or cognitive abilities can help us accept declining health as best as possible.   

I think it’s great to look to others for suggestions, inspiration, motivation and connection, but I think it’s necessary to value our individual strengths, weaknesses and preferences in order to find our own path toward acceptance and purpose. It helps to look around, and it’s crucial to look within ourselves.  Often our best path forward isn’t following someone else’s, it’s the one we create for ourselves. 

Childhood Memories By Chris Ann Smith

This post is an essay my mother wrote while attending Evergreen College in the 1990's. Her wish for her daughters shared at the end of the essay is poignant and has come to fruition. That she is a part of so many of our precious memories makes this essay all the more touching to me.

My Mother, Chris Ann

Childhood Memories

By

Chris Ann Smith

September 26, 1946 – May 21, 1994

At times, each of us thirst for the warm pleasant remembering of things past that take us back to a time of innocence and security, a time of new family traditions, and an era of eager learning of all that surrounds our world. These keepsakes remembrances tucked in a corner of our souls are forever a part of us – memories that will never be duplicated, only rerun as a memorial to former times.  For me, each of my recollections is accompanied by different feelings and sensations.  As I reflect, it’s as if I’m reliving the experience through the emotional responses that escort each memory.

At two years old, blond, blue-eyed, thin and scrawny, I never walked when I could run; and, I was seldom speechless even if I didn’t have anything to say. My curiosity and inquisitiveness kept me busy exploring while my parents invariable chased me.  One of my earliest memories is of food – blackberry pie to be specific.  My taste buds react to the sugary sweetness of a freshly baked blackberry pie as I remember eating the whole pie without using silverware.  I can still feel the enthusiasm and eagerness as I put my face in the middle of the juicy berries and proceeded to eat the entire pie and finish by licking the pie pan to a shine.

Last year, I asked my Dad to help me put this memory into a setting.  He said, “That’s easy.  I took you on the construction site with me and there was a pie shop around the corner.  I’d buy you a pie for lunch.”  “But why don’t I remember silverware?”  He smiled and replied, “I never gave you a spoon.  You’d eat too fast.  Giving you just the pie always kept you busy so I could work.”  To this day, I love any kind of berry pie, but I would never have the abandon to eat the pie the way I did when I was two years old.

The "Boat"

At three years of age, independence, eager anticipation of an adventure, and power were experienced when I received my first “boat.”  There was a lighthouse, lots of water, a salty taste in my mouth and a multitude of boats when I begged my father for my very own boat.  I felt so grown-up as I climbed into my little square boat.  My knees pulled up tight to my chest, I waved to everyone on the shore as my Dad pushed me out into the bay in my new special boat – a cardboard box.  For a few minutes, I was the captain of my ship feeling special and very grown-up. It didn’t take long for my adventure to end as the cardboard absorbed the water and my great ship started filling with water.  I don’t remember the rescue, but I’m sure someone brought me back to the sandy shore just before my “boat” went under.

Every child looks forward to the circus – I was no exception.  My unforgettable adventure was a quest to see, hear and smell all the sights and sounds of this traveling menagerie.  My seat in the Big Top was at the end of an aisle only a few rows up from the stage.  My Dad sat next to me and next to him the other eight people in our group, but my seat was the best. The bench was hard as I shifted and fidgeted waiting for the beginning of the most exciting adventure in my entire life. Then, my eyes opened wide as the biggest and most colorful clown I’d ever seen started walking toward me.  My smile was ear to ear as I held my breath hoping and wishing the clown would see me.  He saw me.  Fireworks went off as this childhood idol gave me a can of peanuts.  These weren’t ordinary peanuts – these were CLOWN peanuts. I knew that nothing in my life would compare with this moment.  My Dad took the special one-of-a-kind can and opened it for me.  Of course, he took some peanuts first.  Then, he passed this unique container of clown peanuts to the other people in our group.  I protested saying that these were mine.  The clown gave them to me. But, I was reprimanded and reminded to share, so I nervously and eagerly waited for my special peanuts to get back to me.  A few moments later, my special world came to an end as I looked into the vacant, uninhabited can – not one clown peanut was left.  I can still feel the emptiness inside.  I’ve reminded my Dad about the special clown peanuts several times in the past few years.

Last year, I invited my Dad to the circus.  I hadn’t been back since the clown peanut incident.  My dad surprised and embarrassed me by asking a clown to come up to me and give me some peanuts.  It was a cellophane package, not a can.  But, this small package was “sent” to me with a lot of love and a plea never to mention the “clown peanuts” again.

Many of my special memories are of the times spent with my father.  He loved exciting hobbies, and whenever possible, I became his shadow.  Thoughts of boating, skiing, driving three-quarter midget race cars, go-carts, and flying antique airplanes awaken memories of a special childhood.  Nothing was ordinary; the unusual was normal.

At ten years old, my first airplane ride with my father was unique.  The butterflies in my stomach were working overtime as I anticipated my long-awaited flight.  As I looked at the huge yellow biplane, I tried to act as if I knew what to do while I waited for the other pilots to prepare me for the flight. As my Dad pre-flighted and prepared the plane, I was given a parachute.  Two pilots helped me put the cumbersome parachute over my shoulders and fasten the buckles.  As they let go and stood back, I unceremoniously plopped down on the ground. The parachute must have weighed twice as much as me and standing was a challenge.  As they laughed at me, they pulled me to my feet by the shoulder straps. A helmet and goggles were added next. Now, it was time to climb into the plane.  One problem – I couldn’t move.

It took three men to pick me up and put me in the front cockpit of the plane. After shoulder straps and a seat belt were fastened, I was ready to start my adventure.  I did have one question for my Dad though.  I yelled back to him, “How do I use the parachute?” His reply, “Don’t worry about it. If anything happens, you’ll fall out of the chute.”  He then started the engine.  My confidence was a little shaky at this point, but the aerobatic flight filled with loops, hammerheads, rolls and stalls was the beginning of a lifelong love of flying.

Memories are a precious gift – a heritage from our family and friends. All my adventures are unique and priceless to me – some create special feelings and a smile, others bring tears and sadness.  I hope my children have special remembrances that they can think about and share with others, whenever they need to feel good about themselves or just remember family and friends.

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.  

Remembering I’m the Boss for My Health Care Professional Team

When I think of all the health care professionals I’ve seen in the last thirty years, it overwhelms me.  When I look at how I interact with them and how it’s changed with time, I think changes in my confidence level and perspective have contributed to much better interactions and level of care.  

Thinking of the number of health care providers I’ve seen since reaching adulthood overwhelms me.  It seems so excessive and high maintenance. The standard list of providers for a healthy adult can be a lot of people.  The annual or semiannual appointments can get overwhelming for just my primary doctor, dentist, dermatologist, and gynecologist.  Add aging, and an ophthalmologist was added.  Add injuries and trauma to my health care needs, and my team expanded to include counselor, podiatrist, physical therapist, orthodontist, and oral surgeon. Once I was diagnosed with Multiple Sclerosis and had symptoms to address, I started seeing a neurologist, a urologist, and a naturopath while seeing new physical therapists and counselors. 

What blows me away is that my list is for a person with a chronic illness who is relatively healthy!  I can imagine the team of people needed to support a person with severe health issues is exponentially larger.  

I like to think of all of these professionals as consultants for the business of my health.  I’m hiring them to help me be in the best health possible.  I want them to assess what I tell them and guide me.  They’re the ones with education and expertise in how bodies typically work and can relay how it applies to me.  For them to do that, I try to inform them as fully and accurately as I can. It can feel like confessional, but getting over the discomfort of talking about embarrassing symptoms is the only way I’ll get what I need from our interactions.  They are on my health care team, and I’m the boss.  Given I manage people as much as possible as a team, it’s a very egalitarian conversation.  That said, if there’s disagreement, I make the call.  I’m the one who will need to put the effort in, and I’m the one who will live with the consequences.

At this point in my life, my neurologist is the provider that I see regularly – once or twice a year – while I may let my annual checkup with my primary doctor slide a year.  The rest are as needed and may periodically involve a series of appointments or just a one-off.  I’ve noticed that when I take care of things without consulting my neurologist, he thinks I’m doing fine and I have no problems.  I’m learning that I should check in with him more often.  

The MS Clinic I go to provides an online portal where I can email my neurologist. In the past they always told me to call and they would always call back, but the process wasn’t efficient.  I’d leave a message, the nurse would call back when she could which usually required me to drop work to chat, and we’d talk while she took notes. Then my neurologist would call back after hours when he could.  

Now with the portal, I can email my neurologist questions at my convenience, and he can get back to me when he can.  There’s less of a hurdle for me to check in with him, and I think I would benefit greatly by interacting with him more frequently during the year.  

As I’ve monitored my own health and become more confident in my ability to notice changes in my body, the conversations I have with health care professionals are just that: conversations. We both talk, we both listen, my concerns are received as valid, and decisions are discussed not directed. 

As some of my providers have gotten older and are retiring, I’ll need to find replacements.  It can be tempting to stick with someone who I don’t really like because it’s easier than shopping around.  If that happens, I want to tell myself that it’s worth the effort to find the right person to treat me that I can work with. I want to tackle any self-doubt that may creep in by reminding myself that I know my body and any concerns I have are valid. I’m the expert on my body. While my assessment can be challenged and I can be proven wrong, it’s not okay for it to be discounted or dismissed.  Any health care professional will need to factor that in for me to keep seeing them. 

If I can find providers who know their stuff and are open to learning, and if I can stay confident and remember I’m the ultimate decision-maker, I’m positive I’ll have the best care and prognosis possible.

Laughter Is Essential When Living with a Chronic Illness

Sometimes feeling crummy and being overwhelmed makes a person forget to do things that didn’t take any thought when they felt well.  It’s natural to focus on what’s wrong and stop thinking things are funny. It’s easy to let the hard things override any impulse to be lighthearted. 

I haven’t really found a way to laugh at my MS symptoms. They’re inconvenient and sometimes debilitating, they’re an indicator of how much damage my MS has done, and they’re scary for the damage that may be yet to come.  

I can be angry, resentful and sad; I can also laugh. And I laugh a lot.  I mean a lot.  It helps me to approach adversity with resilience, rebellion and humor.  Seeing the ridiculous in everyday life helps build compassion for our natural human reactions and build a kinship to others. We’re all complex in our feelings, reactions and beliefs, and when we laugh together we’re bound together in that moment.  

It’s interesting how something said by someone who loves and admires us can be seen as hilarious, and the same words said by someone who doesn’t respect us or isn’t rooting for us is a slam.  It all depends on the context and person behind it.  

What’s my self-talk?  That’s as important or maybe even more important than what our friends and family say to us.  

Am I doing the equivalent of humble bragging when I poke fun at myself?  Am I genuinely finding my condition or behavior funny from a place of compassion and love, or am I putting myself down and hoping someone will reassure me?  If I resent my body or condition, it ends up being sad and not funny.

I think jokes about our physical appearances, limitations and things we really have no control over usually fall flat.  Jokes about our behaviors that we have control over can be hilarious, but they need to come from someone who is clearly a fan.  Otherwise it’s a dig and uncomfortable.

It’s occurred to me that if I have too long a span between belly laughs, I better find a way to do it.  Not because it changes my situation, but because it feels like it changes things.  A belly laugh is an immense boost. Letting loose, guffawing and snorting with laughter makes everything seem better.  Laughter has been shown to relieve stress and help us tolerate pain better.  

Gratitude is a wonderful action for feeling better, and it gets a lot of air time. But sometimes sincere gratitude doesn’t make me feel better.  Laughter can be hard to drum up, but it’s usually easier to trigger.  

We don’t need to laugh at ourselves or our illnesses to feel better.  Give me babies giggling, clever wordplay and ridiculous situations that show how goofy we can be.  Being silly, dancing or singing karaoke can make my stomach sore from laughing so hard.  

It doesn’t remove my fears or change my future, but it distracts me, bonds me to others, reminds me how fun life can be, and just makes me feel good. Laughter is among the things that make life worth living, and when living with a chronic illness we can use all the help we can get.

Making Travel Possible and a Priority When MS Symptoms Make it Hard

In 2014, I visited France for the first time.  I went to Sainte-Chapelle at the recommendation of a neighbor who raved I needed to go when I visited Paris.  It was incredible. The gothic architecture of the building relies on a web of supporting arcs that creates a pattern like no other I’d seen before in real life.  It was awe-inspiring. I’d been told the main floor was beautiful and the upper floor exponentially more incredible. 

Upper Floor Sainte-Chappell, Paris

At the time I recall there was construction and signage indicating only one way to access the upper floor.  As I climbed the tightly curved, narrow and steep stairway, I experienced a visceral moment that had me choking back a sudden sob. My thoughts flashed to friends with mobility issues that would not be able to navigate this route. I realized that this is something that someday I will not be able to experience. In that moment I felt profound grief for what I haven’t yet lost - the ability and freedom to go anywhere without my body limiting me.  

In that moment, I told myself to pull it together and let my sorrow sit for another time.  My neighbor was right.  The upstairs chapel was breathtaking. I was there, and I was fortunate to be there.  

It hit me hard that I should think realistically about the things I want to do in my life that I may not be able to do someday as my Multiple Sclerosis is likely to progress. It motivates me to figure out what discourages me from doing things now and what I can do to accommodate my desire to travel and spend time with faraway friends.  

If it’s money, I look at if there’s a way to do it that would cost less.  If it’s time, I look at ways to adjust my schedule and streamline my commitments.  

For my MS symptoms, I look for ways to make travel easier and less disruptive to my good health habits.  I pay attention to what takes effort.  I anticipate what would be difficult as my limbs lose strength, agility and endurance. I notice what causes me stress, because being anxious takes a lot of energy that I don’t have to spare. Trying to remember what needs to be done or if I did something can get exhausting.  MS Fatigue sometimes discourages me from even attempting things that are a change of routine.  

I tackle the challenges of my invisible MS symptoms from a lot of different angles.  Lists help me immensely to eliminate wasted effort on tasks I need to do every time I go somewhere or do a specific activity. I streamline my self-care routines so that I’m able to do them when away from home.  Simplifying what it takes to pack and leave my home vacant lessens the stress and effort it takes to get away. I pay attention to air travel restrictions, schedule travel to minimize disruption of healthy habits, and bring snacks that don’t sabotage my dietary preferences.  

Create Reusable Lists: Minimize the decisions needed to pack and get out the door.  Make sure the lists are easily accessible and add to them each time they’re used:

• Packing lists for clothing, medications, toiletries, and makeup so that I won’t forget important things that would be difficult or time intensive to replace away from home.  Look at the list when I come home, add what I needed and didn’t have, and subtract what I brought and didn’t need.  
• Leaving home list: What needs to be done to close up my house and be gone?  Mine includes fill up the car’s gas tank, take out garbage/recycling, change sheets, do laundry, close windows, tell neighbors, confirm toilet isn’t running, turn down thermostat, turn off Wi-Fi, water plants, and have food in the pantry and freezer ready to cook quickly and eat.  
• Coming Home list: My list includes turn on router/Wi-Fi, pull food from freezer, tell neighbors I’m home, check the thermostat and unpack.
• Activity lists for hiking, swimming, biking, jogs/walks: I have some dedicated bags with everything I use for a specific activity. For swimming, I have a bag with a towel, goggles, swim cap, ear plugs.  For quick hikes I have a backpack with pepper spray, multitool pocket knife, wet wipes, and a ready to fill water bag.  I have a hiking list to help me pack my backpack quickly and not worry about forgetting anything when I decide on an impromptu hike.  

Streamline my home life and self-care routines so that how I live at home easily adapts to being away. 

• Keep makeup and toiletries minimal and store them in cases that I grab and go. 
• Use online banking and stay current with bills so that I don’t have a huge amount of work to do before I can leave.  
• Organize medications and supplements in single serve packaging that’s ready to take with me. 
• Create a daily fitness practice that includes stretching and strength movements that can be done anywhere and don’t rely on equipment, location or good weather. 
• Have snacks on hand that meet my dietary preferences and I can bring with me. 

Medications and Supplements - one week's worth

Know the rules for flying and getting through TSA.  For a long trip, my injectable medications can take up the entire allotment for carryon liquids.  When I took a 3.5-week trip to France, my daily injections took up the entire quart bag a person can carry on a flight.  It can’t be put in checked luggage, because it needs to be kept between 59 to 86 degrees Fahrenheit.  I also can’t risk having my luggage lost and doing without my medication.  I planned ahead and put all of the rest of my toiletries in my checked baggage. Guess what?  My luggage was lost and traveled to two extra cities. I had to make do without my luggage for three days.  During that time in the middle of summer, I’m sure my luggage endured temperatures outside the acceptable range.  I also had no guarantee that my luggage would meet up with me again.  Because my medication was in my carry-on bag, I at least didn’t need to worry about doing without and thousands of dollars’ worth of medication going to waste. Luckily, I was with my sister who loaned me clothes and toiletries until my luggage was delivered to me.  

My supplements and pills are put in small baggies labeled AM and PM.  I really don’t like pill boxes since they’re bulky, and they usually only hold enough for one week. With single serve baggies, I can easily take one to breakfast and take them with food. It’s much more convenient and discreet than bringing a large pill container in my purse.  Because I worry about TSA not liking that my medications aren’t labeled, I pull the labels from my prescriptions and put them on an index card to include with them.  

Scheduling: To make sure I don’t skimp on sleep, I’ll schedule full travel days instead of taking the red eye.  No longer will I get up super early in order to avoid “wasting” a vacation day. It works best for me if I schedule a day off at home to prepare for the trip before I leave and another the day after I get home to recover and readjust to home life before going back to work.  It feels indulgent, but it makes for a trip that won’t overtax my energy and is less likely to trigger an exacerbation. It’s also allowed for breathing room when my flight was delayed a day due to weather.  The cushion day allowed me the luxury of not disrupting or missing work obligations. Even more importantly, it eased what could have been an extremely stressful experience that makes my MS symptoms act up.

Being responsible for my health takes a lot of effort. When I’m experiencing MS symptoms and feeling like things could take too much effort, a streamlined and organized life will help me be less likely to say no. I need to be strategic about what I do, how I do it, when I do it and how fast I do it.  I won’t have the energy to muscle through things and recover afterward without consequences.  

I’d love to be low maintenance, but I’ve found my health does better when I pay attention, plan ahead, budget my energy, and build in rest and recovery.  All of that requires an embarrassing amount of attention and planning. I get irritated with myself that I’m so high maintenance, but I didn’t cause my disease.  It takes what it takes to stay healthy and participate in life.  All of this effort eases my stress level and makes it possible for me to change my plans when opportunities present themselves.   

P.S. I’ve since learned that since the renovation efforts, the upper floor of the Sainte-Chappelle is accessible for people with disabilities via an adjacent building with an elevator and ramp. I’m glad for the efforts of many to make historical places accessible to and enjoyable by all people, whether it’s accommodating mobility, hearing or visual impairments. 

   

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