Friday, January 1, 2021

Working and Living with Multiple Sclerosis

For me, living and working well with Multiple Sclerosis is better when I know my value, have a healthy definition for working hard, build relationships, am reliable, and work toward shaping my life to nurture my wellbeing and accommodate MS.

MS can shake a person’s confidence, and it did mine.  Now 50 years old and 12 years post-MS diagnosis, I feel very confident in my abilities and aware of my limitations.  It’s been nice learning that MS won’t take away my sense of humor or my intelligence.  I can say the wrong word sometimes or not retrieve a word I want, but it doesn’t make me less intelligent or unable to contribute in the work force.  I try to give MS the right amount of credit.  I’ve closely watched people in meetings, and I’ve noticed people grab the wrong word or say the opposite of what they meant all the time. If I misspeak, owning it and rolling with it makes it less clumsy and awkward for everyone.  I have MS, I’m not perfect, and I still have value.  

 

I had to redefine working hard from working as much as possible to working as effectively and efficiently as possible while supporting my health needs. The possibility that pushing myself too much could lead to disease progression and disability is scary and stressful, and also very real.  MS fatigue will not allow me to power through. I do what I can, build breaks and rest into daily life, plan ahead and anticipate time will be needed for the unexpected every day. Doing these things helps reduce anxiety and keep me going. 

 

Where possible, I’ve built relationships at work with people who have my back and will honestly provide feedback on how I’m doing. I try to listen to them when they show concern and see their feedback as a gift rather than a criticism.  They may not always be right, but they can provide good feedback and I know they’re looking out for me. 

 

The unpredictable nature of MS can mean my plans need to change without notice.  Being reliable to me means I know the minimum I need to get done and have backup plans in place so that I don’t leave a trail of chaos when I need to focus on my health.  

 

Wherever possible, I take measures to build a life that will accommodate the challenges of MS and nurture my wellbeing. Your MS issues will be unique, and your accommodations and life preferences will be unique.  For me, downsizing and minimizing my home care obligations helps me use more of my limited energy on work, hobbies and relationships.  

 

There may come a day before typical retirement age when I need to end my career chapter. Recently a friend of mine with MS who has had to leave the workforce told me to work as long as I can.  I intend to, and I also plan to monitor my health to recognize it if the time comes that I need to stop working.  Until then, I’m really grateful that I still get to work and feel successful for my efforts. 


Sunday, December 13, 2020

Joy: It’s the Little Things

It’s a season of wishing glad tidings of comfort and joy.  I’ve never really thought about what that means, so I looked it up.  Tidings means delivering news or making an announcement.  I don’t think I’ve ever used the phrase, but I probably used it wrong if I did. I thought it was wishing someone else comfort and joy, but technically it means to deliver good news.  It’s sharing our own good news, because we think they’ll be glad to hear it.  

 

I think celebrating and sharing our joyful moments brightens the day for many. I experience joy when I read or learn about someone else’s joy.  I’m happy something made them happy.  I get ideas for things that could improve my life that I might not have thought of on my own. It’s heartening and motivating.  

 

I’ve seen dear friends and family relieved when they hear from me and I say I’m doing well.  I know they worry about me and are relieved and comforted when they hear from me. I’m glad to connect with them and know how they’re doing too.  I think it’s common for any relationship, but I think it’s more pronounced when a person has a chronic illness like Multiple Sclerosis. I’ve definitely noticed their concern more since I’ve been diagnosed.  

 

In the spirit of sharing glad tidings, I’ll share three little things that brought me joy this week:


I found a tiny yellow and black feather while on a walk with a friend on a waterfront trail. I stopped to pick it up and took it home. I researched the feather on an online feather atlas to find what kind of bird it might have belonged to, and then I learned more about the bird on the Audubon site. I deduced it’s from a Northern Flicker, more commonly called a woodpecker.  The whole experience delighted me. 


My cousin sent me a text this week with a photo of her spices.  She based the order on something I’d written years ago. I’d shared in that blog post that I remember seasoning poultry based on Simon and Garfunkel’s song, “Scarborough Fair/Canticle.” Every time I season poultry, I mentally sing the chorus to this song that includes, “Parsley, sage, rosemary and thyme.”

My cousin organized those spices in that order, and she added two nutcrackers that she named. One is Simon, and the other is Garfunkel.  That she remembered something I’d written, made it her own in a clever way and then let me know about it tickled me to no end.

I created an art supply filled craft organizer for my granddaughter, so that she can paint rocks.  Painting one for each member of the family to include in the gift made me happy.  I enjoyed being creative, and I’m excited for her to have her own supplies. I sought out advice from a friend who paints rocks with her own granddaughter, and the ideas she gave made the gift even more special than I
would have done on my own.  Another person contributed a custom printed and cut vinyl sticker with my granddaughter’s name to personalize the tool box.  All told, the project of creating this gift connected me with at least six different people in different ways.

When I’m analytical about what brings me joy, I see that they usually involve some element of connecting with others, learning, giving, creating, humor, cleverness, nature, progress or achievement. Knowing this helps me be aware and consider ways to intentionally infuse joy in my life. 

 

When we share, it can raise our collective mood even if it’s just for a moment. It doesn’t offset the challenges and hardships.  Rather, it adds a positive element to the whole of life. It can offer respite, redirect focus, spur inspiration and sometimes change the trajectory of a tough day, week, month, year or even life.  The little things can make a big impact. And sharing good tidings is not selfish, it’s a gift to ourselves and others.   


Thursday, November 12, 2020

Feeling Connected

Feeling connected is different than connecting. I can go long periods of time without seeing or talking to some people, and when we see each other we continue as if there’s been no gap in time. Others I worry when it’s been a while.  Usually it’s not because of how we are interacting, but because I feel guilty for not reaching out more or doing more.

When Multiple Sclerosis is giving me a hard time, I’m often drawn to solitude. I want to weather it alone, avoid answering questions that feel like they’ll take too much of my precious energy to answer sufficiently.  Hang on to hope that soon I’ll feel better. I’d just rather not.  

Not answer questions that take energy.  

Not feel responsible for anyone else’s feelings. 

Not feel obligated to be nice and considerate when I’m grouchy and sharp retorts come easily. 

Just not.


Frustratingly, what I feel like doing is isolating myself, and it’s the opposite of what helps me feel better.  

 

When my energy is low and I’m not feeling well, feeling connected helps pull me out of it. That doesn’t mean I’m up for doing a lot, it just means I could benefit from connection that involves minimal effort. 

 

Random texts just saying hi. Like or comment on a social media post. Share something by email with someone because it made me think of them. 

 

I love to think of it as invitation without expectation. I want less pressure and more mutual support. Just knowing someone is there for me is enough a lot of the time.  I hope they’ll feel the same.  

 

I read a novel once where the main character described a friend by saying she would call and talk as if it was the middle of a conversation.  I loved that, and I’ve thought often about how our interactions are often thought of as individual when they’re really a sentence or paragraph in the story of our relationship.  

 

That image makes me strive to be accessible and continuing the narrative rather than starting and stopping communication. 

 

Whenever I don’t feel settled or in a good place, I try to remember not to test people on a quiz they don’t know they’re taking. If I’m worried about our relationship, it’s up to me to say something.  Very few people have let me down, and the rest are happy to engage and nurture our relationship.

 

When I think people are taking me for granted, I sometimes think about how close we are that they feel okay taking me for granted. That said, often I’m just feeling sorry for myself and all it would take to change is me reaching out to them. 

 

When I see a friend text and think they might need support, I’ll ask if they want to chat by phone. I think being ready to change plans is important.  People and relationships come first.  

 

Living hours or states away from people I love is tough. I recently had a conversation with my son and his wife about how I worry sometimes about our relationship. It’s nothing they’ve done or not done, but I can get insecure.  I told them I think the world of them and feel guilty that I don’t see them or talk to them more.  We agreed that we love the relationships where we can set them and know they’re in a good place.  We all agreed we’re in a good place, and it truly set my mind at ease.  I haven’t worried since, and it’s a bit silly I ever did. 

 

With tough times globally, there’s something about not being able to do things that make us crave them more.  Spending less time with people in person is making me get more creative with how I connect and be more intentional about satisfying what I miss. 


I don’t really miss the travel time, but I do miss the casual conversations. The hugs.  The ease and casualness of hanging out. The things we’d learn by happenstance or serendipity. The way a conversation builds on each sentence and you don’t know where it will lead. The surprises and the bonding that results. 

 

I want to dissect what I miss and figure out how to make that happen in new ways. Sharing an experience and then comparing what we thought. Allow for quiet or time on the line but not talking. Learning and growing together. Having fun.

 

Instead of going to concerts, I’ve attended online events by musical artists I love.  One treat has been watching from the comfort of my sofa. Another is getting on lists for private shows or calls. One was a 40 person zoom call with a band who just chatted with us and asked questions.  A great conversation topic was having people say what the peak and the valley were for them this year.  The answers were poignant and heartwarming.  We shared together, and my sister in another state attended too. I can’t imagine I would have had an opportunity to have a real conversation and be heard by a band I love before the pandemic.  

  

For my birthday, I held a virtual party that was also a fundraiser. The mix of people was incredible, and it was a joy to have people who live far away and from so many different chapters of my life together virtually. One game that kept the gathering fun and interactive was “Older or Younger.”  I pulled together a list of things with how old they are, and I asked the group if I was older or younger than the thing.  I’m older than roller blades, The Eagles and Trivial Pursuit.  I’m younger than the moon landing, Scooby Doo and the snowboard.  We had fun guessing and sharing stories about how we knew the answers or our memories of them.  It helps make an awkward venue more comfortable.

 

Years ago, I did a couple of book clubs that made some things I wanted to do personally into social experiences.  One was a hybrid in-person/virtual book club since one person lived in another state, and both would easily lend themselves well to fully virtual gatherings.  

 

“Old Friend from Far Away” by Natalie Goldberg was perfect for an interactive book club.  We read a chapter and did a couple of the writing assignments.  Then on Friday evenings, we would enjoy happy hour reading to each other what we’d written and talking about our impressions. The sharing of memories and perspectives was fascinating given we all knew each other well but learned so much that we might not have learned otherwise. 

 

In another book club we worked through the book, “SHED Your Stuff, Change Your Life” by Julie Morgenstern.  We systematically read a chapter and did an exercise each week, and we shared our work and progress.  It was terrific for helping each of us accomplish goals on a project that was overwhelming individually but fun and motivating together.  

 

Connecting can be casual or structured. It can be quick and one-sided, and it can be scheduled and last hours. All means of connecting can be fulfilling, and the quantity or duration of interactions doesn’t necessarily correlate to how connected I feel. I think the odds I’ll feel connected increase, but ultimately it comes down to how genuine I am in each interaction, how willing I am to connect, and how meaningful I make it. For me that means being silly and serious, kind and caring, interested and engaged, genuine and thoughtful, and approachable and responsive. When or how that occurs is limitless. 


Sunday, October 18, 2020

Learning About Anxiety

I get anxious, but I never considered I might have anxiety.  I’ve heard people talk about how it feels to have panic attacks, and I know I haven’t experienced one.  I thought of anxiety as something constant and debilitating. I do yoga, I laugh, I’m active, and I’m productive.  Having a diagnosis of anxiety doesn’t fit in with how I view myself.


But when I research anxiety, I realize that what may not be paralyzing for me could still fall perfectly under the anxiety umbrella.  

 

Grinding teeth, nausea, headaches, problems sleeping – they’re all symptoms of anxiety.  Coping and functioning well doesn’t erase the fact that I experience anxiety. I don’t need a formal diagnosis to know that I will benefit from learning about anxiety and what helps combat it.  I also need to reinforce in my own mind that being anxious doesn’t negate my intellect or competency.  

 

There are times when I feel wound up and consumed with thinking about a problem or fear.  I’ll notice that my thoughts start looping in a way where the problem-solving analysis repeatedly brings me back to where I began.  If I notice my thought process cycling through like this, I know I need to do something different to feel better.  For me, it helps to journal, get outside in nature, connect with others and see beyond my own thoughts.  

 

I’ve long realized that my neurologist chats with me to assess my mental health and look for signs of depression.  Wanting to be strong and capable, I’m not wonderfully open about how hard it can be sometimes.  I want to be thought of as logical, optimistic and fine.  Things can be tough, but I’ve got skills and am doing really well, thank you very much. Yet once I told my doctor that I feel extremely vulnerable.  He latched onto the word vulnerable to find out what I meant.  I wasn’t sure how to describe it accurately, and it worried me to have him misconstrue my description as though I might be suicidal and at risk.  I’m still not sure I can fully describe it, but I’ll try.  There are times when my body feels like every cell is energized but not in a productive way.  I’m in a precarious spot where I might remain fine or I could lose control of my emotions without provocation. I’ve hit a point where the way my body is reacting becomes my focus. Couple that outlook with Multiple Sclerosis symptoms, and it can grow overwhelming quickly.  

 

It was easier to hide and self-treat when I lived alone. While it’s nice to present well and not interact with people when I’m worried or agitated, it’s likely better for my health to acknowledge this aspect of myself. It’s also very likely that I’m not hiding it as well as I would try to believe. 

 

It’s in those times when the headaches and agitation rear up where I think I’m most helped if I embrace the fear and uncertainty. Acknowledging I’m not feeling at peace and in control of my emotions is a start. Admitting it to people in my life helps me spend less time hiding it and suffering, and it moves me forward to a phase of working through it with support of those who care about me. That shift from dealing with it alone to connecting with others can make it a lot easier, but it’s crucial that it’s with someone who is supportive. When I’m on my own, anything that helps me to see outside of myself helps me gain perspective and move through the anxious feelings.  

 

MSAA has a terrific resource page Anxiety in MS: Frequently Overlooked and Undetected

with a wealth of information on assessing and treating anxiety. They mention three anxiety assessment tools, and two of them can be done easily online: 

·   Hamilton Anxiety Rating Scale (HAM-A)  Reference: Hamilton M.The assessment of anxiety states by rating. Br J Med Psychol 1959; 32:50–55. University of Florida Health, accessed October 2020, <https://dcf.psychiatry.ufl.edu/files/2011/05/HAMILTON-ANXIETY.pdf>

·   Hospital Anxiety and Depression Scale (HADS) Reference SVRI.org, accessed October 2020 <https://www.svri.org/sites/default/files/attachments/2016-01-13/HADS.pdf>

It’s useful information to read if you or someone you know has anxiety, even if Multiple Sclerosis isn’t involved. Making it a part of a health care plan is important, and medical care providers can help. Take very good care, all.  


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.