Thursday, January 5, 2023

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.  



Saturday, August 15, 2020

CELEBRATE!

How do you celebrate the good times in your life; the smile-inducing memories?  All the years I spent doing fun-run events, marathons and triathlons, mark some of my favorite personal achievements.  Not that I ever came in first or even finished in the top ten; I certainly did not!  But I saw improvement in my abilities for a time and learned a lot about myself.  

In order to do triathlon I learned how to swim properly and ride a bike with clipless pedals.  I gained personal bests in 5K and 10K events.  And, without realizing it, I was keeping MS in check.  MS was there, lurking, during those years, showing up as a persistent lack of stamina that I could never overcome.  An MRI for a stubborn headache revealed evidence of “demyelinating disease” while I was training for my next triathlon.

I have a couple of notorious closets here at home that contain things untouched for a while; okay, years.  Maybe even a decade ... or more.  

In one of these deserted chambers dwell my treasured running memorabilia.  T-shirts, finishers' medals and swag, camel-backs and clip-on food pouches.  There’s even a foil thermal blanket handed out at a marathon finishing line.  All of them, hard won emblems of my years of fun runs and weekend warrior-ship!  I’ve even kept every bib number I’ve ever worn in a large photo album.  Priceless stuff.  

What to do with my trinkets and sentimental keepsakes?  The t-shirts in particular, are dear to me as evidenced by the pile of them that have lived in a far corner of my bedroom walk-in closet.  I decided to make them into a quilt, so that I could enjoy their colorful graphics and the achievement, fun and fitness they represent. 

The things learned during those years have remained with me long after my last event.  I may not have the same abilities I had once but I am grateful for the time spent running, swimming, biking.  No regrets, just appreciation for having taken an opportunity when it came.  Now as then, I celebrate the good stuff.  More smiles to come.

Sunday, July 19, 2020

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.  



Thursday, July 2, 2020

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. 
 

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

Lidocaine

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, https://commons.wikimedia.org/w/index.php?curid=5750147

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.