Sunday, September 9, 2018

Mood Changes in Multiple Sclerosis

The National MS Society in partnership with The MS Society of Canada have published a short book and accompanying video entitled, “Mood Changes in Multiple Sclerosis.”  In it, the contributors outline the mood changes common in MS and offer strategies for treatment.  The preface states, “We now understand that mood and physical functioning are intricately entwined, and treating one area often brings profound improvement in other aspects of an individual’s life—and the lives of their families.”

Specifically the book speaks about grief, depression, and anxiety, and touches on bipolar disorder and pseudobulbar affect.  There is also a section devoted to fatigue and mood.  Fatigue being one of the most common symptoms of MS it is also not just a physical symptom.  Fatigue can also be a symptom of depression and a change in mood can affect fatigue.

We talked about mood swings at my weekly wellness program recently.  Changes in mood, depression and anxiety are very common for people who live with Multiple Sclerosis.  I struggle with anxiety.  Awaking at night with fear and worries not based in any discernible or otherwise verifiable fact, my fantasies skew in the direction of the catastrophic.

Eventually I signed up for a series of mind-body-medicine-focused anxiety management classes.  In them I learned to recognize anxiety when it arose in me by learning to practice mindfulness.  The later classes in the series added the meditative movement practice of Tai Chi.  And a simple yoga regimen gave me tools to improve my state of mind and gently strengthen my body.  Mindfulness practice has been a game changer for me and I am able to cope much better with stress and anxiety.

There is only one you.  There isn't a spare in the trunk of the car, or stashed in the hall closet, waiting patiently should your current self become too tattered to function.  So, if you've been blessed with a chronic illness and the ups and downs of everyday life become a bit much, which they will, take heart, there is hope.

Life with or without a chronic illness is not easy.  Trying to sugar-coat this stuff in a way that makes it any easier to swallow isn't a very useful way to approach the challenges but neither is pulling the pillow over your head and giving up.  What I would say though, is to try not to add fuel to the fire.  The realities of physical and emotional health can be exacerbated and intensified by a toxic attitude, doomsday perspective or rampant negativity.

Granted, feelings do emerge and can run roughshod across our lives.  Feelings are valid, but they don't have to be in charge.  They can be released.  And just as mysteriously as they pop up, they also fade away.  Holding onto the saga, running the stories of sadness and despair on auto-repeat only deepens the rut they carve out in your thought life.

Sunday, September 2, 2018


Hi.  Yes, I’m still around.  Long story.  Retirement.  Not retirement.  Back to school.  Bought a wheelchair.  It’s all good.

I went to the dentist a few months ago.  The procedure I was getting required lidocaine which naturally rendered the left side of my face and my lips and chin feeling as though someone had stuffed them with foam rubber.  The worst part of the entire visit was that injection of lidocaine, even with the swabbing down of the injection site with numbing gel.

As the drug took effect, I thought of my legs.  I thought of how similar my oral numbness felt to that compression stocking sensation I feel in both of my legs.  That tingling is familiar!  My MS legs must be full of lidocaine!

I had to be careful about my mouth for a couple of hours after my appointment.  My face looked entirely normal, but it felt swollen and inert.  No one would know, no one could tell what I was experiencing.  Silent, invisible and very real.  So goes MS.

I stopped at the grocery store before heading home.  I glanced sideways at the scooters parked next to the front door, but grabbed a shopping cart instead and started pushing.  Lidocaine legs are passably functional but definitely taxed by the effort it takes to use them.  Familiar theme for those of us who live with MS.  My list was short and a walk around the store counts as exercise in my book.

By Ben Mills - Own work, Public Domain,

Sunday, July 23, 2017

Resilience. My best friend.

Resilience has been a rejuvenating concept for me in recent months. When I think of resilience I think of flexibility.  Life with MS has thrown many unexpected situations into my world.  Resilience is that solid framework I build coping mechanisms upon. Being resilient allows rom for the flexibility to modulate response.

Resilience means seeing a way through difficulty, not insisting on having a specific outcome. And while I believe that even the most difficult circumstances have positive elements, I am not encouraging resilience if, emotionally, I depend on all outcomes being positive.

Resilience has kept humankind on the planet.  Despite humanity's proclivity for self-destruction, humans continue to survive.  Need I say that I hope this trend continues given that the ability to self destruct has become so readily available.

But on a more personal level, I know I must be resilient in the simple act of living day-to-day.  I never know how I may start the day when I wake up in the morning. What tools will I need from my survival kit?  And if the bottom starts to fall out, what can I do to redeem the day?  How do I manage to take care of my needs in the moment?

MS is a fickle companion. Some days it ignores me and other days it demands my full attention.  But resilience is like a best friend with no other agenda than to keep me afloat. I try to find victories in the simple things. Playing with the cat. Watching baseball (okay, no guaranteed victories there). Popcorn and a movie. Pausing to watch the sunrise.

Sunday, May 15, 2016

Sunday morning, obviously

Of every other day of the week, Sunday should really smell like bacon and coffee.  Really.  About a year ago, I let go of my frantic grasping of vegetarian eating with the startling realization that even adherence to that noble gastric discipline takes lives.  This morning I stand quietly in my kitchen peeling the wrapping off a package of sulfate free strips of impending deliciousness.  And with my fill of breakfast I sit down to satiate my next appetite at the keyboard. Right now, it is time to write; now, since it has been a while. I will play some piano later on.

Back to Sunday morning and the past 5 years of living alone, this has been my day to accumulate my stuff from the week and attempt to write something that I will like reading afterwards.  The book of short essays that masquerades as a memoir is ready enough for me to make a call to an editor or two.  I almost think it would be easier not to stop writing it than to say it is “ready” because I know it will morph into something else once a more astute eye looks at it. 

So obviously, Sunday mornings will need to become Monday mornings and spill over into Tuesday and Wednesday.  Thursday has always been my favorite day of the week so I don’t want to exclude it.  Fridays I should go shopping and out to lunch or catch up with friends over good Mexican food.  Now that the inevitable has transpired I will potentially have Sunday mornings all week, sans bacon but always with coffee.  You see, my corporate gig is over, at my choosing, with some encouragement pointed towards my bank account.

All the mornings spent getting dressed for work, standing in my closet thinking, wishing, hoping, “If I get a package....” are now history.  Surreal as the day the last of my five kids packed up, took her sweet dog and moved out of the house, the package actually arrived, the eagle landed in an email.  I am ready to fly. 

With all of the joy that I feel in the closure of a fruitful 19 years with the same company, I am burdened with the realization that many other employees were not given a choice to leave.  We knew.  We waited to hear.  Some would be taking their last walk to the exits and we knew the day was coming, but for me, this foreknowledge did not dampen the shock. 

It is not the change that was shocking.  Granted, passing by cubicles with random items left behind by employees that had been let go was a downer.  Change is constant.  Even my dad, by whom one could set a watch, changed over the years and not just by aging.  What I find more disturbing is how far the human response will go to obtain a desired object.  Grasping for a desired outcome, or goal is not a bad thing unless it becomes necessary to trample others in the process. 

To be fair, a certain element of grasping is at the heart of any for-profit business venture.  Grasping in some degree is likely at the heart of just about anything initiated by a living being.  The animal kingdom is a food chain and I inhabit a link somewhere in it.  I can feel bad about that if I care to think about it much but without it would I have been born?  There is something to the whole survival of the fittest, circle of life thing, but road kill is just gross.

This might be a bit too long for a blog post.  I feel a new essay coming on.  I’ll make some more coffee, but that’s enough bacon for today.

Sunday, January 31, 2016

Notes at 2:00 AM (Got Sleep?)

Drug induced sleep means I wake up in 5 hours.  I need to ask my doctor what I am supposed to be getting out of taking a muscle relaxer for spasticity.  I don’t know which is worse, being unable to fall asleep because of spasticity or taking the medication, not sleeping soundly and waking up with spasticity anyway.

Once I am awake and my brain can tell I am paying attention, whatever is really bothering me gets air time.  This particular morning work decisions are moderating the conversation.

I work for a great company that does really well by its employees.  As a single mother of five, my children and I survived their growing up years primarily on my income.  I have had great benefits and career opportunity.  Although I have not “achieved” in ways that bring accolades and notoriety, starting out as an administrative assistant and becoming an IT professional is not such a shabby accomplishment.  This will be my 19th year with the company.

I would like to wind down a bit as I head into the home stretch towards retirement.  I would love to work a shorter week.  The financial impact of doing that would reduce my ability to save aggressively these last couple of years.  The longer I can work full time the better off I will be later but lately it has become more challenging to make it through the week.  By Friday I am wiped out physically and cognitively.  

So anyway, what am I going to do right now about being awake?  Read?  Maybe I should get up and go downstairs.  Or not.  Hungry.  No eating, too early.  No backlit screens.  Book.  Sleep will come.    

two days later....

Why am I awake again at this hour?  I cannot blame it on the muscle relaxer this time.  What was the first thing I became aware of as consciousness returned?  My left foot jumping about under the covers.  Pain.  Muscle twinges in random places.  Why am I hungry?  I ate a late dinner.  At 8:00 PM I finished off two small chicken thighs and some steamed cauliflower.  Maybe I need a drink of water.  

The vertigo has been back the last several days.  It makes me feel queasy and as if I am about to fall over.  A proprioception issue?  I have been quite clumsy this week.  Banging up my hands.  Dropping things at the grocery store twice the same trip.  Luckily the one that fell to the floor was a plastic bottle.

It has been raining all night.  The sound of the water running through the gutters and tapping softly on the roof is like music.  Soothing.  Peaceful.  There are moments of beauty and spaces of gratitude in most everything.

Sunday, January 24, 2016

Just Keep Swimming

How to finish the book.  It seems close to being done sometimes.  My fatigue in the evening drains me of incentive.  Weekends are my only respite since I have a day job to sustain throughout the week.  I must keep trying.  

Annie Dillard claims a book often takes years to complete.  I know there are themes everywhere, enough for more than one good story.

Writing comes from my core being which, with fragments of childhood persona lingering, is constantly changing year after year.  Reading the draft after a lengthy absence reflects evidence of the shifts in perspective that time can bring.  I wonder if painters feel the same way.  Does a painting remain a work that is satisfactory years later?  

Does the writer become the voice that endures, or is it the story that lives?  Would Maya Angelou look back at her early work and wince?  Before her death she had written so many wonderful stories that seemed to simply need telling.  It wasn’t necessary to add any moralizations or philosophical insights.  Each story told itself.

Whatever else I do, being creative satisfies a deep longing to bring a version of truth into being.  Whether or not another living being reads anything I write, although that is desirable, doesn’t really matter.  I will write anyway and trust that if I just keep swimming the next moments will be there.

Sunday, January 3, 2016

What's A Writer To Do?

Happy New Year!  I’ve been writing a book.  A memoir, if you’re asking me what sort of book it is.  Someone once told me that everyone has at least one story to tell but I believe that within the one story there are hundreds or maybe thousands of stories.  That is encouraging to me.  There is no lack of material.  The familiar places you and I visit have seen us clearly.

I don’t know what the vast majority of readers want to read these days.  The initial offering of reading material online is typically short and usually provocative.  When I look through the popular reading lists, it seems there is a vast world of literature and book publishing out there.  I wonder where I might fit in with all that or if I would want to.

When I was still in high school, I had wanted to become a journalist but as I began to look around at the media, I was discouraged.  There seemed to be so much hype necessary for stories to be heard and I was not, I am still not, a hype kind of person.  I do like the short essay or column form and columnists do not need to tow the line of sensationalism.  It helps to have some notoriety in the social-sphere, particularly if you have a cause or a philosophy to promote.  I might have a few of these I can pull out of hiding.

I share my writing in blog form and even submit an essay here or there.  What is important to me is that my voice is authentic.  I am happy to always be finding my voice, because I know the living of years brings change.  I would want a reader to “hear” me as my words are read.

Whether or not I finish the bigger work of a memoir, I have come to be completely in love with the part of me that writes.  I will always create with words.  This has been my outlet since I was a little girl.  It didn’t matter then if anyone read what I wrote.  Now it matters more.