Thursday, September 23, 2021

MS Relapses: An Evolution of Perspective

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

 

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

 

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

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

 

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

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

 

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

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

 

Year 10: Blog Posts - Managing MS Relapses

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

 

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

 

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

 

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

 

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

 

 

Links to posts mentioned:

 

Wednesday, August 18, 2021

Identity, Humor, Intelligence & Chronic Illness

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

 

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

 

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

 

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



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

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

 

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

 

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

 

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


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

 

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

 

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

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



Tuesday, July 20, 2021

Day Trip Outings

Living with MS can lead a person to avoid doing things outside of the routine.  Dealing with unpredictability can make a person avoid additional inconveniences and uncertainty.

 

When my gut reaction is to think something is too much effort, it’s good for me to think about why I’m resisting. There might be a good reason for resistance, but knowing the cause is helpful. If it’s rooted in avoidance or fear, I want to challenge myself to identify what I can do that would offset the what ifs.  

 

What if it’s not worth the effort? What if I go somewhere and my MS symptoms rear up?  What if I need something and I don’t have it or I can’t get it? 

 

Living well with MS requires knowing yourself well, respecting and adapting to health needs, and planning ahead.  All of these life skills are well-suited to successful and enjoyable outings, and doing new things can add excitement and fulfillment to any life. Day trip outings are perfect for experiencing the joy of travel while keeping the comfort of sleeping at home.  

 

You do you. If you don’t want to go somewhere or do something, don’t!  But if you want to do some day trips and are feeling resistant, consider the following:

  1.  Perpetual planning allows spontaneity to thrive.  Many barriers can be accommodated with creativity, preparation and a willingness to explore alternatives. Over prepare and expect things won’t go perfectly as planned.  
  2. Pack a day bag with personalized essentials to ease stress.  The day bag should include anything that will provide comfort and options. I like to include water, snacks, medication, bath tissue, sunscreen, jacket, hat, extra shoes and socks.   Think about everything that could be in the car to make it feel like any circumstance or change of plans could be accommodated.
  3. Set reasonable expectations.  Overestimate travel time, and grant yourself permission to change plans.
  4. Focus the trip around one anchor focus or goal for the day. Create a mental or written list of other things that can be done, if plans change and energy and time allow. Back up plans help diffuse disappointment when things don’t go as intended. Schedule plenty of extra time to do more or less in order to take good care for yourself. Delays and unexpected changes of plans can sometimes lead to wonderful opportunities.
  5. Allow for lots of bathroom breaks, and never pass a restroom assuming another one will be available later. It’s better to go too often than to not have access to one when it’s needed. 
  6. Make the travel experience as fulfilling as the destination. Go with someone you want to spend time with. Have a good playlist, podcasts or book on tape ready to play. Consider why you’re going.  If it’s a trip to a view point, there might be clouds obscuring the view when you get there.  Enjoy the journey, the people and doing something out of the routine.  
  7. Look for surprises, and be open to exploring them. Allow for impromptu diversions.  Rainbows, herds of elk and skydivers landing have all been rewarding unplanned sights I’ve enjoyed because I looked beyond the road and was willing to turn off the planned drive. 
  8. Use technology, but don’t get overwhelmed.  Look online or use apps for recommendations in the area, and consider them. I love using navigation apps for simplifying the directions and letting me know the time and distance to my destination.  
  9. Talk to people.  Locals always know the best places, and they love sharing special tips that you might otherwise miss. Just connecting with people can be fulfilling too! 
  10. Interrupting someone is required when pointing out something nearby or of interest that won’t be visible a few moments later.  
  11. There’s always time for ice cream.  Literally or figuratively, indulge and enjoy the trip!

Roadside rainbow sighting

Unexpected elk herd sighting

Ten skydivers' landings
caught with a quick turn off the highway! 

Monday, June 21, 2021

Summer Heat

Summer’s here, it’s getting hot, and it’s getting really tough to stay cool.

With Multiple Sclerosis, many people have heat sensitivity that triggers MS symptoms.  For me, it brings on fatigue, and my body goes numb.  It usually starts with my feet and legs.  Without intervention, the numbness can spread to my full body from the neck down. It’s not disease progression, but it can be frustrating and depressing.  In my youth I basked in and relished extreme heat. Now it makes me anxious for the possible consequences.

 

Suggestions abound for ways to stay cool in the summer heat.  Stay hydrated, wear cooling aids, stay in the shade, have air conditioning, travel somewhere cooler, be rich.  The last one is said in jest, but there are so many barriers to remaining cool when the weather heats up for more than a day or two.  I suspect the barriers are easier to remove when wealthy.  

 

The preferred options are also very individual.  Environment, health, finances and area of control differ drastically for each person. Cool showers work for me, but they might not be possible when needed. They can also be difficult for those with mobility issues. My go-to method is to use my medication cold packs as cooling aids. Wrapped in a towel, they cool me down quickly when placed on my belly or the back of my neck.  

 

I don’t have air conditioning in my home or at work, so I plan ahead for hot days. My office is located in an historic building of stone and brick construction without air conditioning.  We fondly refer to our office as a pizza oven when the brick warms up and our offices remain excessively warm for days.  In my area, it’s the start of a heat wave. It was 80 degrees at my desk today, and the humidity made it feel hotter.

 

I drink cold water, use the ceiling fans, open the windows for air flow, and direct a small fan above my desk at my torso.  Films coating the windows and blinds adjusted help diffuse the sun’s rays from directly warming the office. None of this keeps the office cool, but it makes it a little more bearable.  

 

It’s a challenge getting work done and looking professional while trying not to overheat.  Sportswear is good for the technical construction and breathable fabric designed to keep athletes comfortable, but it can get expensive and isn’t always appropriate for the office.  Sun dresses, skirts, breezy style tops and other loose clothing that don’t cling to sweating skin help. Often being comfortable can be achieved, yet we resist in an effort to be socially acceptable and presentable. The business world generally encourages discomfort at the expense of good self-care. I want to give myself and others permission to do whatever it takes to stay as cool and comfortable as possible in hot weather.  

 

I try to remember the conditions where I am are not the same everywhere, and they’re sometimes drastically different at a nearby location. It’s interesting to me how different it is for the offices across the hall located on the shady side of the building. They’re often cool even on very hot days.  I need to remember this.  Where might it be cooler? Go there for a moment.  Even a quick break could help.  

 

Note to self:  Sometimes it’s not about being able to do something to relieve the discomfort, it’s about giving myself permission to do what it takes to be comfortable.

 

I live near the beach, and yesterday I walked along the shore barefoot in the water.  It felt so decadent that I couldn’t believe I’d resisted the idea of taking off my shoes and socks to get in. I knew the saltwater would be really cold, and it was.  I hadn’t considered how refreshing it would be after the initial shock. It cooled me off, and the unplanned stroll was heaven.  

 

Lesson noted:  Sometimes the initial discomfort is necessary to get to comfortable conditions. 

 

Please do what you need to do to care for yourself and those around you, especially in heat waves and situations where certain behavior is expected.  You might just inspire someone else to give themselves the permission they need.  


Wednesday, May 19, 2021

New Beginnings

Spring holds top honors 

as the season of new beginnings

for new growth, budding blooms and wildlife births.

Spring marks the end of winter,

although they often overlap 

in their weather shift competition.


January 1st rivals spring for a new beginning point

as the first day of the first month,

and it too may garner significance 

for its relationship to

the last day of the prior year.


Waking marks the beginning of the day 

and end of overnight slumber.

A new friendship, 

a health diagnosis, 

a life without someone

exist in cognition as before and after 

a moment.


All are endings and beginnings.


Moments in time often pass 

without anticipation or awareness 

until later upon reflection and applied significance.

Detecting these turning points in real time

is infrequent 

not for lack of effort

but for the constant stream of beginnings and endings.


Noticing and assigning purpose

elevates common moments.


Foreseen, by happenstance, or noticed in hindsight, 

each ending lays foundation for a new beginning.


Tuesday, April 13, 2021

Stress Management, Resilience Skills, Time to Shine

Stress isn’t inherently bad, but it feels awful when it causes suffering. Stressful
moments are usually only upsetting when my go-to skills aren’t cutting it to skip feelings of tension and anxiety. I’m feeling pushed to do more than I can do, I’m feeling pressured to respond more quickly than I’d like, or I’m interacting with someone who is using bullying tactics.

When something triggers stress in me, it feels more empowering to think of it as a chance to flex my resilience skills than to say I’m managing my stress. It subtly shifts my perspective from feeling like a victim needing to suppress my natural responses to being an active participant and even champion in the outcome. Managing stress may not have the same connotations for everyone, but to me it feels like a compromise.

 

If I think of stress as bad and my body saying I’m failing or bad at dealing with things, it sabotages my ability to get through the moment with self-control and grace. Instead, I’m aiming to notice stress as my body telling me it’s ready to really perform at peak level.  It’s alert, energized and capable.  It’s ready to shine.

 

My mantra this week is, “Breathe, focus and shine.” I say it to myself as I leave home in the morning.  I remind myself to take a moment, consider the situation, and choose the best path forward.  I’ve been working to remember in stressful moments that I can slow down and behave deliberately.  Respond instead of react. Remember I have options, and I am choosing my behavior. I’m not obligated to a specific reaction.  

 

Stress makes everything feel urgent, but that’s exactly when I need to set my own pace.  When it’s a person testing my resilience skills, I need to listen more, ask a question, listen again.  Slow the tempo of my dialogue and know that listening to a person who is mad doesn’t mean I’m disconnecting or agreeing with them.  Let them experience their emotions without feeling obligated to join them on their roller coaster of frustration, anger or abuse. 

 

In everyday behavior, I can proactively live a life that nurtures my body and builds resilience for navigating stressful moments when they arise. Have fun, live with purpose and know I have value in this world. I can nourish my whole self with good nutrition, movement, self-reflection and connection with others.  Network with colleagues, teammates, friends and mentors who can give perspective and suggestions. Connect with people who experience similar life stressors and can share their approach and successes.

 

I want to react to stress by pausing and asking myself this:

If I was the most skilled person in the world to deal with this, what would I do?

 

It doesn’t matter if I am the best person in the world to deal with it or not, because I am the one dealing with this.  It might mean I just need to take a momentary breath to think it through. I might need to take a longer break and come back to it another time with a fresh mind. Maybe I should contact someone I know who could help me with it.  I might literally be the worst person in the world to deal with this, but thinking about what the best person would do will help me figure it out. It can be my time to shine.


Tuesday, March 16, 2021

Feelings & Flash Mobs: Mental Wellness Looks Messy

Life is not a straight line. Grief, coping, adjusting and recovery don’t follow straight lines from feeling bad to better.  They’re more of a spaghetti diagram of past merged with present, conflicting emotions colliding without logic, and highs and lows mixed together as conditions change, time progresses and we adjust.


I can feel sadness, loss, fear, anxiety, love, connection, hope, strength and contentment in a single day. Usually I do. Often, I feel a combination of them all at once, and I think it’s normal for me. 


I’ve learned flash mobs make me cry.  Every time.  They can be upbeat, fun and joyful, and still tears stream. I love the combination of surprise, music, choreography, people coming together and people dispersing as quickly as they started. They make me happy.  They also trigger overwhelm for the connection, surprise and happiness they elicit. 


I can analyze flash mobs for why I can’t keep my emotions level while watching them, and I can accept I don’t need to fix it.  For me it’s a great example of how combinations of feelings can simultaneously occur when they aren’t usually related.


Remembering that feelings can be randomly triggered and illogical helps ease the desire to find the cause, the solution and validation. If I assume every feeling is valid yet temporary, I’m less likely to obsess over them.  They can surprise me, consume me and evaporate as powerfully and fleetingly as a flash mob.

 

Certainly, if I’m suffering, I want to shorten the timeframe of feeling bad. If suffering persists, I want to have help.   I know I’m susceptible to depression given my Multiple Sclerosis, and I watch for it.  If I know not every feeling has a logical reason or need for fixing, fleeting emotions are less worrisome. 

 

When feelings persist, having a well-rounded support team is crucial for my mental health and living well with MS.  This team includes:

  • Primary care provider who tends to my overall health
  • Neurologist who monitors my MS progression, symptoms and mental health
  • Counselor to call if things seem too much for me to conquer solo
  • Friends and family who will listen and help me assess my condition
  • MS Self-Help Group where I can share and learn from people who have MS

Not everyone has access to health care, and I encourage anyone who needs help to contact MSAA or NMSS to see if there are services and support that might help.  If you have a different condition and don’t have a care provider, search “mental health services near me”.  Local health departments often have a web page with a list of resources.

 

Multiple Sclerosis Association of America, My MS Resource Locator: call their helpline at (800) 532-7667 to speak with one of their trained staff members, or email them at msquestions@mymsaa.org.                                                                                                        

National Multiple Sclerosis Society, MS Navigator: call 1-800-344-4867, or complete the form to contact MS Navigators at https://www.nationalmssociety.org/Helpful-Links/Contact-Us