Keeping My Eyes Open

 Every now and then I struggle to keep my eyes open.  MS fatigue (lassitude) is unlike normal fatigue.  It's a weariness that makes it challenging to manage daily self-care.  All that matters is that you're able to lie down, somewhere.  When I have days like this, it starts first thing in the morning, even after a decent night's sleep.  I eat breakfast, and despite having a couple of cups of coffee, my body says, "Take a nap, why don't you?"

Full disclosure:  I recently got a new puppy.  Leo.  A yellow coated, chihuahua-terrier mix.  Energy personified, but packaged in a size that accommodates rapid sprints up and down the hallway.  Whoever invented the tennis ball has another tiny canine devotee who deeply appreciates his ball.  

So, needless to say, I am getting more exercise lately.  Fortunately, Leo isn't one to cry through the night.  He tucks in at about my same bedtime and we meet up again in the morning.  He also has taken quite well to a Porch Potty.  I don't have a proper backyard, so it's awesome that he uses this.  He's already signaling his need to go out by running to the back door.  I don't sit down for long these days, but the puppy phase will eventually end. But here are my stats for our first week together:

2386 calories

27,653 steps

12.62 miles

69 flights climbed

To be fair I should also mention the cat.  She's a senior with health issues that have to be tended to.  My master bedroom has become a feline hospice, and the bathroom now houses a litter box, water fountain and food.  

So.... when I found myself with a bit of quiet time to put my feet up and read a little this morning, my eyelids would not cooperate.

I've had to learn to give myself permission to rest and give up the to-do list.  

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.

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.

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.

Dear Terrorist

I woke up this morning thinking of you, so I thought I would drop you a line.  I write to you not knowing who you are or where you are so how to reach you is unclear.

I imagine you are young.  I am a grandmother.  I hope this is not a deterrent to you hearing me out.  I will try to keep it brief.  Maybe you are busy, or hiding.

I know you were small once and that you have parents.  Maybe you have siblings and a grandmother like me.  It is not easy growing up and I know this because I had to grow up like you.  In a lot of ways I am still growing up.

If you are thinking that we have nothing in common, I would have to disagree.  We have everything in common that really matters.  We both have hearts that beat, we breath in and out, we seek joy, feel love, live life, desire much, experience pain, endure loneliness, and cling to hope to name just a few.  We are only human, you and I.

Which is why I am writing to you, wherever you are.  Before you take the next step into whatever terrorist thing you are planning, could you think, really think, about our common humanity?

If we sat down together in my house with whoever your youngest family member might be, my grandkids, your mom and maybe some family photos, a pot of tea or some good coffee, we could talk, about everything.  We could take turns listening.  We might be surprised to find we have a few things we could laugh about together.  Maybe you would change your mind about the suicide vest. 

We are all only human you know.  And really, what is left behind after so many die?  If you die we will be forced to go on without you.  Your dreams and hopes and ability to become great here on earth will be forgotten.  I wonder if that is what you really want?

Sincerely,
The Common Denominator

Guarantees

Startling and unconscionable.  When I think about all that has occurred in the past two days, the uncertainty of day-to-day existence is flagrantly empty of any hint of guarantees.  Which is why my dear friends, the moments we live are so very, very precious.

Wherever I am at this moment, is what unfolds for me to live.  What I want, above all else, more than long life, fame or wealth is to arrive at the end of my life with the certainty that I had in fact lived it.  And how not to come to think that years have been wasted, that I should have done better, that I was a failure, is to begin at this very instant to live with an open heart.  

There are no guarantees of anything except the inevitabilities of the human life span.  Entitlement is perhaps just a myth.  What is certain is the way I chose to live out the moments at hand.  That’s it.  That is enough.  All of the suffering in the world can be quenched.  If it is possible for one of us, I believe it is possible for all.  

Always I am looking forward

Where is my hope?

What choice do I have?

Asking questions about the past

Why was I so blind?

Where was my protector?

Anxiously waking to the sunrise

How will I survive another day?

What if all is lost?

Guarantees are written regardless of the pain

Can I rejoice amongst the deep and silent?

Is there a place free of suffering?

Love must flourish 

Here is our hope

Here is our vision

Here is our joy

Here we must be

Hokusai Says

Hokusai says look carefully.

He says pay attention, notice.

He says keep looking, stay curious. 

Hokusai says says there is no end to seeing

He says look forward to getting old. 

He says keep changing,

you just get more who you really are. 

He says get stuck, accept it, repeat 

yourself as long as it is interesting.

He says keep doing what you love.

He says keep praying.

He says every one of us is a child, 

every one of us is ancient

every one of us has a body.

He says every one of us is frightened. 

He says every one of us has to find

a way to live with fear.

He says everything is alive -- 

shells, buildings, people, fish, 

mountains, trees, wood is alive.
Water is alive.

Everything has its own life.

Everything lives inside us.

He says live with the world inside you.

He says it doesn't matter if you draw,
or write books. It doesn't matter
if you saw wood, or catch fish.
It doesn't matter if you sit at home
and stare at the ants on your veranda
or the shadows of the trees
and grasses in your garden.
It matters that you care.

It matters that you feel.

It matters that you notice.

It matters that life lives through you.

Contentment is life living through you.
Joy is life living through you.
Satisfaction and strength
is life living through you.

He says don't be afraid.
Don't be afraid.

Love, feel, let life take you by the hand.

Let life live through you.

- Roger Keyes

Shadows

Living like a shadow shifting, eyes closed in the passing of another's light.

Pushing off the notion before it breathes, that what you are is excellent.

Caving to a swagger you think is better.

Heading towards the exit before the show begins is somehow better than an aisle seat.

Convincing to the world underneath.

When is the light that you are enough my friend?

Waking up, instead of tossing restlessly amid all that sacrificial spin.

Bowing in humble gusty servitude or absorbed in maniacal gesticulation.

Shadows waver and then slowly vanish.

Where are they once night falls?

Let your heart open, afraid as it is.

Rush in, beneath the windy spacious sky.

Are you waving at me?  Are we shadows of each other?

  

Doorways and Anchors

Another experience of separation came to teach me this week disguised in the sudden death of a beloved pet.  What I took for granted, expected to exist and cared for every day, was gone in a matter of seconds.  How do we, how do I bring the truth of life's frailty into a shared space with the pain of separation?  Acceptance and helplessness seem joined at the hip in some circumstances.

The Buddha taught that impermanence will cause separation from everything and everyone I care for.  Pain will occur in some shape or form, in every living being.  Suffering, however, arises from grasping for what cannot be, and also for what can be.  We do not have to suffer.

These teachings are beautiful, simple truths.  As I live out my days in these latter years of my existence my feelings seem more intense than ever.  And as I make a space for my experiences to dwell, I am learning to hold them and regard them with loving compassion.

Without judgement, I look at them all; the anxious thought, worry, sadness, peacefulness, joy and acceptance as they appear.  No longer do I entertain negative self-talk as I did for so many years.  Shaming, chastising internal dialogue has been exposed and abandoned.

Where there is love, kindness and self-acceptance alive in me, all these can then be available to others, genuinely.  Life in this moment is our agent for joy, peace and hope.

Another loved one passes through the door of earthly time, and what I feel is what it takes to anchor them within my heart forever.