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.   

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. 

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.  

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.

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.  

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.  

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 driveinmovie.com 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. 

 

Resources: 

Drive-In Theaters  https://www.driveinmovie.com

Tips for Visiting a Drive-In https://www.driveinmovie.com/tips-for-going-to-drive-ins

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.    

References:

“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, https://www.youtube.com/watch?v=X3f_SJRjqEo Accessed 31, May 2020.

Emrich, Lisa. MS Blogging Community Index. Carnival of MS Bloggers.

msbloggers.com/p/ms-blogging-community. Accessed 31, May 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.