Sunday, September 13, 2020

Slow Change and Sudden Shifts: Zooming Out to Gain Perspective

Slow change can be really tough to handle. Its gradual and persistent nature can disguise itself as normal and stable. Only when it reaches a threshold or shifts might we feel the results.   


I’ve been living with Multiple Sclerosis unknowingly and knowingly for almost thirty years, and in the last 12 years I’ve known lesions in my spinal cord are the root cause of pain and my body malfunctioning. I know my body is damaged from MS, I sense where it’s going, and yet it still surprises and frustrates me each time it worsens. It’s decades in the making, but changes feel like they hit me suddenly.  


What was previously manageable might now be more intense and upsetting.  I might still be able to cope, but there’s a looming fear that it might worsen and become unbearable. The unknowns of whether it is temporary or permanent and whether it will subside or progress add to the distress. I wonder whether my MS is just acting up or if this the beginning of my physical decline.


I think in this moment it’s good for me to figuratively zoom out while looking at my health over the years. I look beyond today, this week, this month and this year and review my collection of medical records, journals and lessons learned since my MS diagnosis.  In doing so, I remember how the pain in my legs is not new at all.  Medical questionnaires reveal I’ve been circling my lower legs and forearms for where it hurts for over a decade. I have volumes of notes documenting symptom management efforts. They include physical therapy, medication, yoga, stretches, physical activity, topical treatments, supplements and prescriptions all intended to mitigate MS spasticity.  


I have a menu of remedies and good health habits I try to incorporate every day to combat pain caused by spasticity and slow any decline.  Sometimes it’s enough, and sometimes I need more. All of it takes setting goals, tracking, built in routines and visual reminders to ensure I do them.


Being active is a treatment that helps me feel better not only physically but emotionally about the pain. Stretching, strengthening and movement do all of the things that physically help manage spasticity, and they help maximize future mobility. When I haven’t moved much at all, the pain feels like damage and degradation. When I’m active and my legs hurt, emotionally the pain feels more like recovery.  Some may question whether physical endeavors make my legs hurt more, but my experiences have proven my overall pain is less when I’m active. 


Zooming out helps me gain perspective and remember what I already know.  It helps me create a plan for determining what I can do differently, what patterns might exist, and what helps or harms me. It helps reduce my fear and anxiety for what’s happening and what may come.

Tuesday, August 11, 2020

The Rx for Stress? It Depends.

Stress is one of the many symptoms that come with living.  It isn’t a root problem, although it can feel like one.  Stress is the indication that there is something else going on, and it isn’t always bad.  The excitement of an upcoming event causes stress, and I wouldn’t want to skip over the feelings of anticipation and accomplishment that come with looking forward to or working hard for something.


That said, it would be great if stress could actually be an independent health issue to fix.  We could avoid, distract, or breathe our way to eliminating stress, and we could perfect our mind-body health. Um, nope. I’ll admit these coping methods can help, but I can’t think of a time in my life when they resolved my stress long-term.  


I’ve read articles suggesting stress is the root of illness.  I agree that living a life of chronic stress can hamper a person’s health, but I’d argue that chronic stress is the result of something else. For example, living a life with chronic illness can reasonably cause chronic stress. 


Welcome and Respect Stress 

The same way Multiple Sclerosis affects a central nervous system and causes a multitude of related health issues, something else in our lives is usually causing stress. For me it’s helpful to remember to welcome and respect stress.  If I view feeling stressed as my body letting me know something and an opportunity to learn and grow, I feel better.  It helps me to know there are things I can do to feel better, and it helps me to remember it isn’t a character flaw to feel stressed. 


I recall a yoga class I loved where the instructor would ask at the beginning, “what would you like to work on, and what do you want to avoid?”  Over time I learned that whatever we said we wanted to avoid invariably became what we focused on during the session.  It can be frustrating, but I’ve learned that often the thing I'm trying to avoid and is causing me stress is exactly where I need to focus and spend more time.  


When I feel rushed, often slowing down helps me feel better. Taking the time to have a conversation with someone or not rushing interactions helps me be less stressed. It reminds me that whatever is stressing me is not as important as the relationships I have with people. If I’m too focused on something and getting anxious, sometimes taking a 15-minute break can help me gain perspective or approach what I’m doing with fresh eyes. Being five minutes late is worth the price when it enriches my life and helps ease my feelings of stress. 


Recognizing stress and seeing it as a marker for something else helps empower me to dig deeper and determine what will help. I can always just tough it out and keep going, but it’s a hard and isolating condition to live that way. It feels noble to be strong, but ignoring stress can be self-sabotaging.  It compromises my health and delays any progress toward feeling better.  I have MS, but I’m not required to constantly suffer.  Being aware and open with frustrations and challenges enriches my relationships and improves my well-being. Being tough and dismissing stress can feel like the only option in the moment, but I believe that approach contributed to many of my early MS exacerbations. In hindsight, it wasn’t worth the price to my health.


Not Fixable Doesn’t Mean Hopeless

This doesn’t mean everything causing stress can be fixed.  Rather, I think noticing what stresses us and evaluating it is important.  Dissecting what causes anxiety is useful if we can determine what portions can be helped and what needs to be accepted and accommodated. Sometimes when everything is lumped together, the cause of stress gets so big it’s overwhelming to even try to make our lives better. 


Maybe the best we can do for some problems is to distract ourselves, but it’s helpful for my sanity to make the distinction. I’m sure it’s different for other people, but it’s how I’m wired.  If I let something stay mysterious and unexamined, I’ll always wonder if I could have done something to make it better.  

Sunday, July 12, 2020

Knowledge of MS Progression Is Its Own Invisible Symptom

Many health conditions and symptoms are never seen by others and remain unknown to the people in our lives until we talk about them.  Even then, what our friends and family members see and what we tell them don’t match.  The disparity between how we look and how we feel makes it hard for others to believe it’s as much of an issue as we say. 

Some of my invisible symptoms are widely shared by many people with multiple sclerosis.  There’s fatigue, pain, bladder and bowel issues, spasticity (cramping & stiffness) and dysphasia (trouble swallowing).  While all of these are not technically invisible symptoms, they behave as such for me given they’re not visible to others.

I see people in vehicles impatient when I’m in a crosswalk at the end of a walk or jog and moving slower than they’d like.  They don’t know my legs are less reliable at the end of a workout.  They don't see how it takes me a while in the morning for my legs to move as I intend.  It’s not obvious I’m taking greater care to make sure my feet land firmly and I don’t trip.  Some people behave impatiently as if I’m intentionally slowing them down.

When I’m pushing myself to participate in something and struggling with fatigue, people question how I can be too tired to stay one day yet do something very active the next.  Trust me, I get it.  It has taken me years to understand my body and my limitations as well as I do now.  It’s taken a lot of trial and error with frustrating consequences from overdoing it to teach me it doesn’t need a reason, nor does it need to make sense.  I need to respect and accommodate how MS affects me in order to live as well as I do. 

I think being diagnosed with MS and living with disease progression is an invisible symptom in its own right.  It affects the significance we give to MS symptoms and how they may affect our future.  

I recently visited a beach where portions of the access trail were steep with fairly treacherous steps to access the shoreline.  On the beach, large driftwood logs created an obstacle course to navigate before reaching sand and water.  While there, I savored feeling the wind and misty rain on my face, the sound and view of breaking waves, the landscape shaped by water, wind and geological shifts over millions of years, and the song of shorebirds calling to each other.  It was beautiful, invigorating and also poignant.  I reflected upon how many people I know would not have been able to access this area due to mobility issues.  Yes, beach walkers and wheelchairs exist, but this portion of the coast would have required someone to carry them. I took in how fortunate I am that I am able to access these remote areas.  I acknowledged to myself that there will likely be a day when I cannot.  

I’m guessing other people on the beach experienced being there differently than I did.  They likely have their own challenges and hardships that may have made their time there bittersweet too, but for me it reminded me how much I can do and what I may lose.  


This shows how very real symptoms that are invisible and currently manageable contribute to feelings of fear, stress and sadness.  The fact that my legs still work doesn’t eliminate the sadness I feel for how they’ve declined over the years.  It makes me nostalgic for how they used to be and a little depressed for what may come.  

I cope with this by looking at it from outside myself and from within, and I use this knowledge to shape my choices.

  • I try to remember everyone has their own invisible circumstances, and I’m just acutely aware of my own. 
  • I aim to refrain from responding in any situation unless I can do so with kindness and compassion.
  • I try to share my condition so that my friends and colleagues can understand why I need to make accommodations for myself.  
  • I make an effort to do things and go places that I may not be able to access someday. 

Invisible symptoms contribute to invisible experiences.  How we feel in a situation can be vastly different than someone else's while doing the exact same thing at the same time. Knowing this as a fact of life helps me cope and live the best I can.  

Thursday, June 18, 2020

Summer Fun at the Drive-In

As summer hits and pandemic-closed businesses open up in my area, it’s exciting to have my local drive-in theater open again.  I hadn’t been to a drive-in movie in decades, because staying up late and watching from my car didn’t hold a lot of appeal for me. I’m now a convert. The ability to get out of the house and do something social and special boosted my mood immensely.  


Everyone has different preferences and needs, but seeing a movie in a field from my own vehicle where I could create a comfortable environment for myself felt decadent. With blankets, pillows, and a borrowed exercise mat, the back of my car was perfect for a makeshift bed.  If my car wasn’t conducive and the weather was nice, I could have set up lawn chairs or the makeshift bed on the ground behind my car. I still would have been able to view and enjoy the movies.  


I’ve been to the drive-in twice this year so far, and the first time I sat in the front seat of my car.  I won’t do that again, since I barely lasted through the first film.  My MS makes my limbs cramp, and I need to be able to shift, stretch and sprawl to find comfort.  Being able to lie down for the films was relaxing and helped conserve my energy for a late night. Watching from inside my car was cozy even with the light rain outside.   It was such a fun outing that only seeing the early feature would be worth going. Staying for the late, late show (and staying awake) felt like a major accomplishment!

The website lists drive in theaters in the US, Canada and Australia. They also provide many tips for visiting a drive-in. I highly encourage seeing if any are near you or in a location conducive for a weekend trip.   


My biggest tips are to make your area comfortable for you, bring a battery-operated radio since they tend to use a radio frequency for the film’s audio rather than use speakers in the field, know where the bathroom is when you park, and bring a flashlight.  There’s not a bad spot in the lot for viewing the screen where I went, so reducing distance to amenities and lighting my path after dark are helpful.  And if mosquitos like you, make sure to bring some bug repellant.


If you have other issues that make going out difficult, do some research beforehand.  Look at their website, and contact the facility in advance to see if they can accommodate your needs. You can also ask around to see if anyone you know has been there who can give a first-hand description of what it was like.  If the unknowns really cause anxiety, ask a friend to go on a scouting mission and report back before you decide whether it’s something you’re up for doing.  People are really happy to share their experiences, especially if they know it will help someone else. 


If it works out for you to go to a drive-in, I hope you enjoy the experience as much as I did! It definitely merited inclusion in my #50at50yrs experiences. 



Drive-In Theaters

Tips for Visiting a Drive-In

Sunday, May 31, 2020

My Letter to Oprah in 2009

On March 17, 2009, I watched an episode of Oprah featuring Montel Williams and his experience with Multiple Sclerosis titled, “After the Diagnosis.” Given I worked full time, I didn’t record shows, and the episode would have aired on daytime television, I’m guessing I was home sick dealing with the flu, MS issues, or most likely both.  

I wrote a letter to Oprah the following day. 

The key points I was trying to make were to show appreciation for that episode and previous health-related episodes, and to encourage her to do more shows featuring regular people with MS. As such, I cringe a little that I shared so much about myself in the letter. That said, I grant myself grace and understand I wanted to explain why I believed my opinion had value.  

This is the letter in full. 
Thank you so much for focusing on Multiple Sclerosis yesterday.  I was very excited to hear Montel Williams share his experience as I have had difficulty finding positive role models with MS with whom I can relate.  I sympathize with his depression and difficulty adapting to the uncertainties of MS.  I also appreciate his openness in describing the disease and the symptoms he suffers.  His discussion surely helped many people to understand the hidden difficulties of MS.
I did finish watching the show yearning for advice from someone who has genuinely accepted the disease and found a positive outlook.  Montel’s depression left me unsure of his advice.  I wish for him joy and peace in this life despite his challenges.
Dr Oz was inspirational with his compassion and sound advice.  I see that without much guidance following diagnosis I naturally proceeded to follow his suggestion and consumed myself with learning about the disease.
My diagnosis of Multiple Sclerosis in June of 2008 completely blindsided me.  Even after my body became numb from the bra-line down for a few weeks, I still thought of myself as an extremely healthy 37 year old woman.  I exercise regularly, monitor my weight, eat organic food and locally grown produce, and try to balance life.
I sincerely thought I must have a pinched nerve.  At the time I actively participated in a gymnastics class each week, and despite fatigue I ran a 12K a few days after half my body numbed.  My diagnosis came quickly following what I have since learned to detect as an exacerbation.
Immediately following my diagnosis, I underwent steroid therapy that left me a wreck emotionally and kept me home from work.  I consider it happenstance that your program aired a week of shows focused on health.  Among them was the incredibly inspirational Kris Carr with liver cancer who affected me deeply with her attitude that we’re all dying, some of us just have more information.  Randy Pausch, with dignity, underscored the fact that it can always be worse.
I now live with on and off symptoms including pain in my hips and neck, fatigue, insomnia, memory difficulties, numbness and lack of coordination.  I take a disease modifying drug – a daily injection – to hopefully slow the progression of my MS.  I’ve given up the weekly gymnastics class, but I have a gym mat at home so I can stretch, do backbends, back walkovers and handstands.  I walk two miles with my husband each day.  On good days, I have to slow down to keep pace with him.  On bad days, he has to slow down to keep pace with me.  
I work full time in a demanding field and actively work at keeping a balanced state of mind.  I’m still in a quest to achieve balance and make sense of my new reality.  As such, I do hope you’ll consider a follow up program with average people coping with MS and specialists in the field.  
I appreciate the information on your website directing people to the National MS Society web page.  Televising the organization and its purpose would have been truly appreciated to support ongoing research for MS prevention and cures.  The organization also provides an amazing amount of support to MS patients, family and caregivers.  
Thank you, Oprah and staff, for your ongoing commitment to be a positive influence in our lives succeeds in making our lives better.
As I reflect on my own life and personal growth over the past twelve years since I was diagnosed with Multiple Sclerosis, I realize that I am part of an entire community creating what I yearned for and couldn’t find years ago. I wanted to learn from regular people with MS. Now there are many bloggers with MS sharing their experiences. See Carnival of MS Bloggers for an amazing single site compiled by Lisa Emrich with an MS Blogging Community indexproviding links to hundreds of them. The site shows how long it’s been since each site posted a new blog, so it’s helpful to see who is currently writing.  

I encourage anyone interested in writing and sharing to do so. Often, we have within ourselves the answers for what we need, and putting our thoughts in print can help us reveal our best path forward. Writing is therapeutic and empowering. Sharing allows us to learn from each other and build upon another person’s insight. It fosters a spirit of kinship that recognizes we experience our MS individually, yet we have a community of people who can relate, provide encouragement, and help keep us going.    

“After the Diagnosis.” The Oprah Winfrey Show. Harpo Productions, Chicago, 17 Mar. 2009.

“Montel Williams Explains How He Deals With His Multiple Sclerosis - Part #2.avi.” YouTube, uploaded by wall6545, 7 December 2009, Accessed 31, May 2020.

Emrich, Lisa. MS Blogging Community Index. Carnival of MS Bloggers. Accessed 31, May 2020. 

Sunday, May 10, 2020

Living the Best I Can in a Changed World

My goal is to not just make it through this pandemic, but to enjoy this time. I don’t want to wait for things beyond my control to change to be able to be happy, have fun, and be fulfilled. 

If I wait for someday, I’ll miss now, and now may last a while.  It’s unsettling to live with uncertainty and be required to change my normal routines.  A lot of my routines have evolved over a long period of time to help keep me living as well as I do with Multiple Sclerosis. Uncertainty is a fact of life when living with MS, and adapting is a skill developed and constantly tested. Sometimes I’m faster at adjusting, and other times I’m a bit stubborn to see how I can adapt and lessen my suffering.   

It serves me well to acknowledge the change, accommodate the limitations, and adapt.  If I can figure out what I truly need in life to be happy and recognize why it matters to me, I can usually find a way to have it. It may not closely resemble the past, but a kernel of it can grow into something new that brings me joy.  

When adjusting to new limitations in my life, I succeed when I focus on what I can do instead of what I can’t.  When I learned I had food sensitivities, I had a list of foods to avoid.  Referring to that list while grocery shopping was frustrating.  It felt like punishment, and often I left the store very unsatisfied with my purchases.  When I created a list of foods that I could eat, shopping became a joy again, and I was much more successful keeping my food choices consistent with my dietary needs.  

I could focus on all of the closed stores and restricted activities, but it puts me in a mindset that doesn’t feel good.  I’m trying to focus on the things I can do. It brings me joy to live in a mindset of abundance and possibilities instead of scarcity and limitations.  

When I design my perfect day, it includes doing things that are productive, mentally stimulating and physically active. I want time to relax and recharge, and I want to spend time connecting with others. I want to eat nutritiously and indulge in something decadent. All of these things can be done in countless different ways spanning an infinite range of exertion. No matter what I’m doing specifically, I would feel love, I would laugh hard, and I would feel useful during my ideal day. These feelings are crucial to my happiness. I’ve learned that when I feel lacking in these emotions, putting a little effort into being kind to others usually leads to having all of these emotions fulfilled for me. The pandemic may require me to reach out virtually rather than in person, but I can do that.  

When I look at my plans through this lens, I’m better able to include things that will help me feel fulfilled.  If I can’t fit it all into one day, I’ll extend the time frame.  Often, I think of what the minimum is that I need to do in a day, weekend, week or month to be fulfilled.  When I have a ton of things to do, I’ll get most or all of them done.  When I have nothing that absolutely needs to be done and very few things on my radar, I might get almost nothing done in a day. Seriously, the length of time I can spend not moving is impressive. I could beat myself up for that, or I can think that I really needed the rest, the break or the escape.  

As I navigate a new reality where I can’t go everywhere I want to go, I can’t see people I want to see in person, and I still need to maintain my health, I need to create a long list of what I can do.  It’s necessary for my sanity and physical health to have options at the ready and be kind to myself. This pandemic is taking a lot from a lot of people, but I will do my best to live well in this changed world. 

Saturday, April 4, 2020

Keep the Piles Small & Reach Out in This Challenging Time

It’s tough right now living through a pandemic. I assume I’ll live through it, but many will not.  I appreciate hearing from people who are having a hard time, because I’m glad they’re expressing themselves.  I think the silent ones are sometimes the ones to worry about most.

When I think of everything I need to figure out, solve and do, it’s overwhelming: work while adapting to a state of emergency, isolate physically, help others in need, maintain my health, don’t catch COVID-19 and don’t have an MS relapse. A mantra I started using years ago comes to mind, “keep the piles small.”

I started saying it to myself after hearing a quote by Regina Brett:

“If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.”

A takeaway is that we’re more comfortable with the problems we know and more confident in our ability to live with them.

From that idea, I liked the visual of piles of problems.  When a pile of something is small, it’s easier to deal with it.  When it gets really large, it’s overwhelming. It can seem pointless to even try dealing with it, because it feels like any effort won’t accomplish enough to make a difference. 

When I’m thinking about everything that needs to be done and all of the barriers to doing them, it feels like I’m throwing every task, challenge and problem into one pile. I’m creating a mountain of a pile that feels insurmountable.  If I can split things up into small piles, then I can focus on what would help each one. 

It helps me to schedule time to deal with each issue and task. While everything may be constantly close to mind, it helps me to set things aside for moments at a time.  When I focus on what I can contribute instead of what I need, I’m improving my mental health and building connection. When the challenges come to the forefront of my thoughts, I’ll notice what I can do about it in that moment and note it to include later when I work on it again.   When it’s time to pick up that pile, I dive in and make progress where I can.  

One of the steps I use in each project I undertake is to take inventory of my resources.  What do I know and what do I need to research?  What equipment do I have and what do I need? Who has done this before, understands what needs to be done, or could share some wisdom?

This week, I realized that I have a full team of colleagues and friends who provide technical advice, friendship and moral support, but I felt like I needed one more voice.  I combed my mind for who could provide some wisdom and guidance.  I realized there was one more person available to me.  I contacted a former mentor who I haven’t connected with in a while.  This person was perfect for helping me think bigger, organize my thoughts and reinforce my core values.  While I started that conversation feeling very stressed, I ended it feeling inspired and energized to move forward.

Nothing had changed, yet I had changed, and progress was made. May you all have who and what you need as we move through this very stressful time.  Keep the piles small, reach out, and take good care. Remember you’re needed and you matter.