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.  

Pandemic Puzzle

I just want to say that the pandemic isn't fun anymore.  At first, like maybe two weeks in, it was kind of surreal and edgy.  Annoyingly interesting.  "What is covid-19?"  we wondered.  "A bad flu bug that's fatal to the elderly?"  No one knew what to think really.  Now we know it's no joke.

But we're all on Zoom and Webex happily chatting, thrilled with new-found techie stuff.  You can talk and laugh with your friends and it's kind of a cool thing to do.  (We're so close to being teleported ... I can feel it.)  

I'd guess that parents probably lost the fun factor before everyone else did.  Suddenly you are teaching your kids at home, trying to entertain children that one normally would not see during work hours.  An eternal weekend forced upon us.

And now, these many months later, it is probably safe to say most of the population is fed up with being told they should stay home all the time.  And so, we wait.  

I am working on my third monster puzzle in four months; 1000 pieces of blissful absorption that has the ability to keep me up way past my bedtime.  I have converted to grocery delivery.  What took me so long to embrace this I couldn't tell you.  May I never cross the threshold of my neighborhood grocery store again, unless absolutely necessary.  The money I save not having to wander through the bakery section on my way to get milk.

I have cleaned and oiled the sewing machine and made a bunch of face masks.  Started a quilt with all those running event t-shirts that have lived on a shelf in my closet for a long, long time.  Lots of little projects that were always in the to-do pile have bubbled up to the surface and keep my mind off of my aforementioned numb appendages.

And I should also mention, I have done what I can to keep GrubHub, Door Dash, Uber Eats and InstaCart solvent.  Eating out at home isn't so bad.  In fact it's awesome; you don't have to put on presentable clothing, shoes, saves gas.  I mean, I do miss eating out, but I can indulge behind closed doors and succumb to a blissful food coma afterwords.  No one need ever know that I ate dessert first or half a medium pizza.  Ah yes, the momentary pleasure of a good craving.  

Windows

The cat loves the window.  Kitty TV.  She never seems to tire of looking out at the birds and squirrels.  The green space behind the house is often visited by deer, a tiny micro meadow adjacent to a fairly busy road.

There isn't a lot going on for me right now.  Actually, there isn't a lot going on for a lot of people as we collectively try and stay healthy during the coronavirus pandemic.  The trips I had planned, the restaurants I enjoy, the movie theaters I visit -- everything is on hold. 

There have been some good things that have sprung up out of staying at home.  I've discovered the joys of grocery delivery.  I marvel at how much less money I spend when I don't go into the store.  Now that the panic buying has subsided and paper products are beginning to reappear, getting everything on my shopping list has become more dependable.  

I've been retired for four years now, so I've had a little practice keeping myself entertained at home.  But while we wait out the virus I am challenged to find new ways of being with myself and others.  Does the cat miss going outside? The window she and I enjoy looks out over my green space, but another window looks inward where there is also ample space to explore. 

 

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.

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

Transitions

The little girl never knew how small and vulnerable she was.  She lived in a world that seemed to her both vast and uncomplicated, immense in scale and minute in detail.  And all this within herself, coexisting in perfect balance.  For a long time she never saw a problem with this arrangement.  The boldness of innocence swept her along past the mirrors of social  acceptability.  

Small things were just as weighty as those considered large.  A grain of sand was a mountain waiting throughout eternity to meet her on a sunny summer day.  A small smooth stone had patiently existed through countless sunsets for a moment of marvel in the palm of her hand.

And so, without being a partner in the scheme, she seemed to be okay.  No need for raucous hilarity, pious solemnity or cataclysmic despair.  There was air to breathe and poetry to write and birds that sang every morning.  And then one unremarkable day the whispers came.

The gut level inkling that the previous rhythm had lost its place became a constant companion.  Was it when the mean girl pulled her hair and followed her after school to taunt and tease?  This mirror was, she thought, a fearful nuisance and if ignored it would surely go away.  Which it did.  The content of its incidence was so beside the point that it was hastily forgotten and never mentioned to anyone at home, shifting naturally out of the moment while in the same instant quietly present with her tormentors.  

The mystery of transition is that it is always happening.  At times rapidly, always an eternal event and sometimes difficult to perceive.

Tormentors abound obvious.  Woe to those who pause to acknowledge and collapse exhausted and sad from the din of those who pester and annoy.  Woe to those who ignore their attackers, waiting out the onslaught, all the while expecting to be jumped and beaten to the ground.  The only question really, is, “Will I, should I fight back?”  The answer will arrive when it is needed.  Meanwhile, transition happens, continues unceasing and needing no help from anyone.

Little girls transition to bigger, older little girls.  The world is still vast and minuscule, simple and complex, simultaneously filling up each living being.  Continuance requires change.  The transitory is always with us.  Ignore it and it will not go away.