Tuesday, February 16, 2021

Good Confidants Can Handle the Tough Stuff

Our relationships affect our health, and our health affects our relationships. Our health and our relationships evolve over time as each person ages and life chapters change. These are simple and obvious facts, but I find them to be something I need to remind myself periodically.  

 

Living with a chronic and progressive illness like Multiple Sclerosis complicates the issues to tackle and the dynamics to navigate relationships.  As my body changes, my focus always shifts inward.  Is this symptom new and temporary, or is it a small indication of worse things to come? What do I need to do differently now, and what might it signal for my future?

 

These are important questions to consider.  Identifying symptoms, possible treatments and available resources are crucial for navigating the physical aspects of chronic and progressive diseases like MS.  

 

In these times, I try to stay logical and pragmatic.  I try not to overreact. I try to work through my fears and frustrations in a healthy way that doesn’t impact anyone else.  They don’t ask me to keep it to myself, but it’s my natural preference.  Unfortunately, the agitation and worry usually seep out, and those close to me sense it.


It takes a lot of self-awareness and acceptance to disclose when my body isn’t working well. Usually, I’m still trying to get a handle on what it is and whether it’s significant or not. I’m still trying to analyze and monitor the changes.  I often am not yet ready to share, because I’m hoping things might improve and there might not be anything to share.  This means those close to me experience the consequences of my changing health before I even realize I’m stressed and irritable.


My confidants have excellent skills for showing curiosity and support while not pressuring me.  Sometimes unknowingly, they help me manage my feelings, my fears and my frustrations.  They hear me, believe me, don’t compete with me, and share themselves with me. I see their grace when I deflect or shut down an inquiry.  These are the people to keep close, because they’re willing and able to help me.  When I see them hesitate or gently back off, it’s my signal that I should share what’s bothering me. 

 

Yet, I still hold back.  While it’s silly to think saying things out loud will make them worse, it’s exactly how I feel.  If I share that my legs hurt more and my coordination is worse, it means my fears of becoming disabled are warranted.  It means I’m becoming disabled.  

 

I’m seeing disability with MS can be a slow, gradual and very invisible transition.  It appears to me that I will be greatly affected by my disease before anyone sees me with a mobility aid.

 

I’m going through this life with MS, and the people close to me are going through this life with MS with me. Some made my life harder, and I’m fortunate to no longer rely on them.  Others have proven to be healthy and respectful, and they are my cherished relationships.  They check in, they ask how I’m doing, and they back off when they see I’m not up for saying more.  It’s not until I open up and share the invisible changes I’m experiencing that they can really go through this with me in a way that helps me cope.  

 

Having a body slowly and progressively deteriorate is an isolating feeling.  It takes effort to explain and not complain.  I get sick of living with MS, and I get sick of being tired of it. I want to be low maintenance and easygoing, but this disease is one that requires constant coddling and accommodations for my body’s needs. It takes a lot of time and effort to do the physical tasks that are needed to manage my MS symptoms, and it takes tremendous effort to challenge the negative thoughts that come from having a chronic illness.

 

I haven’t found the secret to skipping the irritable phase.  I’ll notice I’m grouchy, and I try to override the temptation to lash out. Sometimes I do well. I keep my mouth shut and go for a walk or do yoga.  Sometimes I reveal my bad mood in my tone or curt responses. It’s moments like these when I don’t feel like I’m being as nice as I’d like that I hope to avoid or get through quickly.  Often the best I can do is give myself a timeout and tell those around me that it’s not them.  My goal is to be able to feel pain without lashing out and seek connection to help get me through the feelings of uncertainty and frustration. 

 

Once when I was going through an especially difficult time, a friend wrote in the sympathy card, “We’re hurting with you.”  It hit the right nerve, and tears along with a sob came quickly.  I was feeling very alone, and having someone succinctly address it allowed for a cathartic feeling of connection.  I know the antidote to feeling powerless and alone is sharing with those close to me. It doesn’t fix my problems, but it lightens the emotional load I’m carrying. 

 

If I can be truthful and forthcoming with the people who have my back, and if I can be a source of support for their challenges, I think we’ll all fare well.  The best relationships can handle the tough stuff.  



Wednesday, January 20, 2021

Learning About Hope

Learning about hope gives me hope. Hope, faith, endurance, resilience, conviction and belief, they all contribute to my level of hopefulness.  They help me feel like I can make it through hard times.  The conditions I’m enduring will subside, or I’ll figure out a way for it not to hurt as much. 

I’m learning that people with hope do better physically.  I’m realizing that it’s not a feel-good thing or coincidence that at my neurologist appointment, the questionnaire asks me how many times in the last month I’ve felt hopeless. You may be familiar with this question. It reads:

“During the last 30 days, about how often did you feel hopeless?  Choose among the answers: All of the time, Most of the time, Some of the time, A little of the time or None of the time.” 

 

Some internet research has shown me that this question is from the Kessler Psychological Distress Scale.  It is a measure of exactly that, distress.  People who are hopeful live with less distress.  It doesn’t mean their lives are less challenging or easier.  Actually, they’ve learned that life conditions don’t have a correlation to how hopeful a person is.  People with similar challenges can have vastly different levels of hope, and even the same person can have different levels of hope at different times in their life.  I’ve learned it takes effort to be hopeful, but our circumstances don’t dictate our wellbeing.  

 

There are things we can do if we’re feeling hopeless.  Hope and motivation do well with ongoing support and inspiration, and often they involve other people. Tell someone you trust, talk to a counselor, reach out, and lose any guilt or shame for needing help.  Answer the question honestly when the doctor’s questionnaire asks you. 

 

We’re all going to have different things touch our souls and give us hope. Just looking for things that make me hopeful leads me to find reasons to be hopeful.  Being clear about what is possible and what is probable narrows my focus for where to direct my attention productively.  

 

I’m excessively aware that I can’t control most of things in life.  I can‘t control what others do, I can’t control the pace of scientific advancements, and I can’t control my body’s Multiple Sclerosis advancement.  

 

I can’t unilaterally fix the world’s injustices, but I can contribute a little in every interaction I have.  

 

I can’t prevent MS progression and disability in my body, but I can live in a way that gives me the best odds of doing as well as possible.   

 

I can’t speed up medical advancements, but I can stay informed, participate in studies and contribute to causes that are doing that work.  

 

Acknowledging the many areas where I lack control and the few where I can contribute eases my stress level.  It lessens the degree of responsibility to a manageable level where I feel like I can do something that matters. That gives me hope. 

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.