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.  

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.

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.