Dear Diary

 Finding joy in the day and developing resilience are skills that take practice.  It is very easy to become distracted by the weeds and sticks that can litter our path in life and totally miss the things that make us happy.

On a walk recently with my dog, it occurred to me that I am so much a part of the natural world around me that I "belong" simply because I exist.  I don't know what brought on this thought but as soon as I acknowledged it, I felt lighter and actually smiled a little.

Life with a chronic illness is a daily adventure into the unknown and the challenges that go hand in hand with daily living.  I handle the ups and downs a lot better when I remember to look for the things that I am grateful for and that bring me joy.

This past weekend was the annual Great Backyard Bird Count.  I have loved birds since I was in elementary school and I enjoy participating in this event.  Essentially you record birds that you observe and log them with one of two apps available or online.  It's a little citizen science to help track bird populations.

So, on my morning walk with my dog, I pulled out my app to record the bird sounds that I heard. Let me just say that birding by ear is a real thing and, thankfully so.  Binoculars are definitely standard equipment for birdwatching, but learning birdsongs is a great asset.

Returning home I reviewed my list and once I was certain of what I had heard I logged my sightings.  There are a lot of birds in my immediate area and living in the Pacific Flyway more or less ensures there are lots of species to observe.

This morning when I woke up, two mourning doves were greeting each other outside my apartment.  Mourning doves are a favorite of mine from when I was similarly greeted in the mornings in my childhood bedroom.

I took this picture in 2015.  I was lucky that year to get an up close look at nest building, hatching and fledging of the robin chicks.  I don't know if birds find joy in their songs but like this mama robin protecting her chicks from the rain, they are resilient.

Love Letter - February 2025

Dear Diary:

Winter where I live in Northern California includes spells of rainy days that change the way you approach daily life.  An umbrella and rain coat become regular companions.  A pair of boots may be a part of the mix.  Here on the western slope and into the valley, it can get cold, but rarely do we see snow.

As a former east coast native where winter brought not just cold, but snow and frigid temperatures, the weather here isn't that bad.  I've known a few gentlemen who go through the entire year here in cargo shorts!  

I think all my east coast winter resilience has probably been worn away by the (relatively) balmy California winters and baked off by the dry heat of our long summers.  After getting through all the holiday festivities and gatherings and back to my life as a single dog-parent, I do have what appears to be a cold.

I haven't been one to get sick much in my adulthood.  I have wondered if my overactive immune system had fortified me against most contagious illnesses.  A doctor once told me it is common to have more than one autoimmune disease.  In my case I have three that I know of, including MS. 

Or maybe, I've speculated, after having five kids, I have been exposed to enough child-borne bugs to make me invincible.  I've been sick so infrequently I can remember clearly when I was last sick enough to go through a box of tissues in a day (when I had COVID, a souvenir I brought home from vacation).

All this to say, having a cold or the flu adds another layer of self-care to my daily palliative approach to managing MS.  Becoming a pro at taking care of yourself is very important, whether or not you have MS.  My first neurologist responded to my request for guidance in disease management by saying, "... understand your needs and limitations."  That advice has guided me often, right as rain.

 

 

Sonic Salvation

 Dear Diary:

I moved a couple of months ago.  After multiple rounds of decluttering, I sold my home of 24 years to move into something smaller, without stairs to navigate.  I found a nice ground floor apartment with a generous patio and just the right amount of space for me and my small dog.

Unfortunately, the building is not well insulated between upstairs floor and lower level ceiling and any structural noise is at times very, very loud.  I don't hear conversations thankfully, just foot traffic and furniture.  This isn't a problem with the neighbors on either side of me.  I rarely hear anything from them.  But the upstairs apartment has no carpeting and I know exactly where everyone is at any given time.  When it gets to be bedtime for me, I think my upstairs neighbors are just starting their after work activities.

Chairs are moved in the dining room and dragged across the living room floor.  Their little one runs back and forth across the apartment, the bathroom door squeaks, a flushing toilet cascades through the wall at the head of my bed and laundry is started.  I'm in bed.  It's 9:30.... PM.

I've pulled out the heavy artillery over the past few weeks.  At the forefront is a device I received as a Christmas gift that produces calming lights and sounds that can be set up on an app.  I was already using an Alexa routine at bedtime but this new device is a bit of an upgrade.  The light feature functions as an alarm, gradually brightening in the morning.

Then comes my Spotify account, where I have diligently added the albums of artists who perform quiet, soothing music.  When things get raucous upstairs I create an oasis of favorites I can listen to.  

Sleep.  Is.  Imperative.  I cannot function without a good night's sleep.  End of story.

Speaking of stories, I have also found wonderful sleep stories on the Calm app.  My favorites are called "Extreme Sleeps," written by a woman adventurer named Phoebe Smith.  Each story is about her travels to an extreme location where she has camped, hence the name "Extreme Sleeps."    

My MS burdened CNS is totally dependent on getting enough sleep and if it becomes deficient it can take days to recover.  Most human beings are this way.  For me, clumsiness increases, spasticity is worse, cognitive deficits run amok and fatigue is persistent. I don't have the luxury of having someone else around to pick up the slack, so I have to manage my daily routine and be mindful of how I spend my energy.

Sound therapy is becoming my new weapon of choice to address the needs of my central nervous system.  I confess to having been a skeptic.  I'm already balancing delicately on the edges of adopting all the new technologies I need just to pay for a visit to my dogs' vet and you're asking me to take a leap of faith into what now ... a sound bath?  

Am I just showing my age?

Kidding aside, I am becoming a believer in the power of sound to realign my mood into a more positive direction.  Yes, that's me you see with mop in hand "dancing" through the task of cleaning my compact living space while my Spotify account rolls through my "Liked" song list.  

But it's not just music that can settle my nerves.  There are other sounds that I find soothing and when used at the right moment, really help me to slow down and relax.  

So there you have it.

  

Dear Diary - December 2024

Dear Diary:

I've been dealing with a recurring comorbidity much of the last month.  Interesting word, comorbidity.  The Oxford dictionary defines it as:  "the simultaneous presence of two or more diseases or medical conditions in a patient."  When I look at the word, I see "co-" and "morbid" which translates in my mind as, "with" and "gross-ness."  I'm no linguist, but I think someone could have come up with a term that doesn't sound as gruesome.

Two new prescriptions later, x-rays and a referral to physical therapy, I am hopeful that this persistent issue can once again be coaxed into submission. 

When I was first diagnosed, I was very unclear about what was MS and what wasn't MS.  I didn't know what to expect and I don't think my medical team did either, long-term.  And rightly so.  MS is such an unpredictable disease.  Although my first neurologist did not think I would become gravely disabled, I didn't believe her (and truthfully, I still don't).  She also said during those early years of RRMS, that I could have a "relapse from hell" so things could change dramatically.  I also didn't know what symptoms might be considered "red flags" that should be quickly addressed.  So consequently I sounded the alarm pretty frequently.  

Comorbidities can and will occur with MS.  Our bodies succumb to lots of medical issues and can accommodate multiples.  Lucky us.  Don't discount the "normal aging" stuff because it's a reality that everyone has to come to terms with.  Lifestyle choices can cause lots of other irritating issues over time.  With the population at large spending hours on devices, staring into their hands, slouched at a desk, you can rest assured neck pain and low back problems will increase.  Now, let's add MS or any other chronic disease and, voila!  Co-morbid yuck is upon you!

I think the important thing for me has been how to recognize what symptoms are not MS but be aware of their impact on MS issues I have like balance, gait or cognition.

The first advocate and care-taker is me.  My neurologist's advice in 2005 when I asked her how I should approach managing my life with MS was, "... understand your needs and limitations."

Love Letter - November 2024

Dear MS Friends:

Now that we are headed into winter and the early darkness of the season, it’s a good time to be more aware of your mood.  Seasonal affective disorder is a type of depression that occurs during specific seasons; usually fall and winter.

Depression is very common in people who live with MS.  Living with MS often means not knowing how or if your body will function when you need it to.  That uncertainty gets reinforced by all the annoying symptoms and sensations that the human nervous system can produce.  The MS body can be unpredictable, unreliable and uncooperative.  Not what you signed up for, right?   There are no replacement parts and the service department can't guarantee repairs.

The good news is, depression is treatable.  What might be more difficult to overcome is the stigma associated with anything perceived as even vaguely mental health related.  So here's a cliche for you:  It's okay to not be okay.  Don't let shame or pride keep you from enjoying life.

There are plenty of tried and true remedies to help boost low mood that don't require a prescription or a stiff drink!  Think about the things you enjoy and seek them out.  Music?  Nature?  A good movie?  Books?  That hobby you keep stashed in the closet?  Make a mess.  Smile.  Be good to yourself.

Here's a flagrant plug for exercise - get some endorphins on board.  I know, I know .....  but hear me out.  Moving, in whatever way possible for you, is helpful in combating depression.  Physical therapists can facilitate an exercise program for you.  With some consistency and time there can be great benefit.  No need to join a gym or become a weekend warrior.  The most mundane activities of daily living can be effective too. 

 
Endorphins can also: 

• "Reduce symptoms of stress, anxiety, and depression
• Improve moods
• Boost self-esteem
• Support cognitive function
• Promote immune system health
• Reduce inflammation
• Regulate appetite
• Improve sleep"

Depressed mood, anxious ruminating and worry will aggravate symptoms that you would otherwise be able to ignore.  If you find yourself gravitating to worse-case-scenarios and catastrophizing it's a habit you'll want to reign in.  Are you spending your downtimes of the day searching the web for the health condition that's going to kill you?  C'mon now...... cut it out.

Smiling Can Trick Your Mind Into Being More Positive

MS and Vets

Mood Changes in Multiple Sclerosis  

MS and Depression

Exercise and Stress

If all your best self-care strategies fail you, it might be time to talk to your health care provider and take steps to help pull you out of the dumps.

Winter

Much of what you hear about seasonal impacts in MS will talk about heat intolerance and how to stay cool during the summer months.  But cold weather can also exacerbate MS related issues.

I experience episodes of increased muscle tone which some neurologists call spasticity.  Another school of thought excludes this symptom based on findings during a standard neurological exam.  A neurologist will attempt to invoke a response from large muscles with rapid movement of a limb (usually the legs).  When a muscle response is noted, spasticity is diagnosed.  But a few notable physicians do include increased muscle tone and stiffness as indicative of spasticity.

When the weather turns cold, it's normal to tense up a bit in an effort to brace against the cooler temperatures and stay warm.  It is during the winter months that I find myself really needing to keep up with my stretching routine and sometimes add an extra session into my day.  Stiffness can become uncomfortable and painful at times.  

A warm shower, resting with a heating pad and gentle movement also help relieve the discomfort I experience.

Cold doesn't help matters.  The body's response to cold, withdrawal of blood from the extremities, shivering; all contribute to tightening of muscles.  When muscles are tight and stiff it takes a lot more energy to do simple tasks which results in fatigue.  

Understanding how all these elements play out in my body has been very helpful.  With any chronic condition, it's important to learn as much as you can about what triggers your symptoms.  Having a toolkit of strategies to work with is empowering and effective self-care can make a huge difference in your day-to-day.

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.