Dear Diary: July 2026

This edition of "Summer Living with MS" is brought to you by proprioception (where are my feet?) and fatigue (yes, I'm awake - I just can't keep my eyes open right now).  

How are you?  The standard casual question.  The litany of symptoms is almost comical and it really doesn't do much for your credibility as a functioning human being to list them all.  Better to just smile and nod and say, "I'm fine thanks" than to suck all the air out of the room ranting about the tingling, numbness, cognitive slip ups (really can't tell anyone about those), fatigue and mysterious weakness that is gone as rapidly as it appears.  None of these are life threatening.  Might be worth talking about if they were.  And truth is, in spite of it all, you are .... just fine.

Definitions help. Glitchy functioning: like a light bulb that keeps flickering.  Circuit breakers thrown.  A scratched record that skips until someone lifts the needle.  The bumpy ride of a flat tire.  Misfired rocket.  I wouldn't try chopping veggies right now.
 

Summer really exacerbates things for some people with MS.  Those mildly annoying issues that pop up periodically during the cooler months of the year can be daily occurrences once the temperatures are consistently warm.

I confess to feeling really bummed out once it becomes clear that the sweet cool days of spring are over.  Determined to acclimate, I try to spend time outside when it's hot as long as I can retreat quickly and cool down.  Never leave the house without the insulated water bottle. The upgraded cooling vest has been languishing in the freezer for months waiting for its literal moment in the sun.

So, let the good times roll!  Fire up the TV and settle in for a baseball game.  Pro tennis match anyone?  There's a good 2-3 hours of your day enjoying this esteemed racquet sport.  If you're lucky enough to have access to a swimming pool, the water can be your best friend these days.  And early mornings can be an oasis of cooler temps and soft summer breezes.  There's light at the end of the proverbial tunnel!

Connections

 Human beings are social creatures.  To exist in isolation is almost a guarantee of failure to thrive.  In life's big open spaces filled with busy days of working, establishing a home, and earning a living, there are opportunities to connect everywhere.  From daily commutes to shared lunch breaks, to a child's classroom, study groups, movie nights and coffee shops, people and places to connect with are abundant.

Having a progressive health issue like Multiple Sclerosis can negatively impact opportunities for connection.  When fatigue and vertigo became my new best friends I found myself cancelling plans at the last minute more often than I would have liked.  When pain from spasticity became a regular visitor, my daily routine excluded events after 3:00 pm.  And with summer heat came cognitive deficits and brain fog.

What has been even more frustrating is that these symptoms are not visible and hence, not credible somehow.  I eventually gave up trying to explain them to anyone.  Any other excuse worked better than trying to describe what I was experiencing.  

Unreliable.  That's how I came to see myself.  Declining invitations, repeatedly having to say, "I can't make it this time...," led to not wanting to commit to being anywhere.  Luckily for me, I was introduced to Acceptance, Commitment Therapy (ACT).

 "ACT is an action-oriented psychotherapy that teaches you to stop struggling with difficult inner emotions.  Instead of trying to eliminate or suppress distress, you learn to accept these feelings as natural and commit to positive, values-driven behaviors that improve your quality of life."  (Psychology Today)

While many people with MS are without debilitating limitations, the presence of other symptoms; pain, numbness, or poor stamina can be a daily challenge.  There's no guarantee that the MS afflicted body will function properly on any given day.  Just flipping the switch doesn't mean the light will turn on.

There's no one-size-fits-all solution to this scenario.  If there are supportive and available family members willing to scoop you up and tote you around, that's a wonderful thing.  If you have friends who care enough to try and understand what you are going through, that's priceless.  

Fortunately we live in a time where connections are also available virtually.  (Covid opened our eyes to the realities of no-contact as a lifestyle.)  Not the same as the sights and sounds of that coffee shop you like, but a way to stay plugged in nonetheless.

When Summer Really Arrives

 When the warm temperatures of (spring) Summer arrive, living with MS can become more challenging.  For some, extreme temperatures in either direction can make moving around harder. 

This year we had an early turn of the seasons which, briefly, made everyone wonder where their shorts and sandals were.  I was disappointed that spring seemed to have made its exit a day or two before the calendar said it was officially here.  It had finally warmed up just enough that it was possible to be out during the day without a hat and gloves.  And then our afternoon temperatures were well over 80 degrees and I just wasn't ready for that. (It cooled off and rained a week later.)

Summer finds me spending more time with indoor hobbies.  Reading, crafting, writing and painting are perfect indoor activities.  And, summer brings pro tennis and major league baseball, both of which can consume hours of your day.

It is valuable to have a strategy for coping with hard days.  Whether due to heat sensitivity or just because it's MS, having a way to keep your mind in a good place is important.  Puzzles and crosswords, maybe preparing a favorite recipe, knitting or sewing, woodworking or gardening.  Whatever works.

And if all else fails ... take a nap.

  

A Quiet Life

Recently I was contacted by a blogger for Web MD asking if I would be willing to participate in an interview and share my MS journey.  The central theme of the interview revolved around living with relapsing, remitting MS (RRMS) and how life unfolded around my diagnosis.

As I reviewed the sample stories I was provided, it looked as if a younger perspective was intended.  I responded to the blogger, letting them know I was well into my retirement years, and was deemed to be in the secondary progressive stage of MS.  The blogger confirmed that yes, a RRMS focus was their desired target and thanked me for my time.

It is such that those of us who are older people with MS (PWMS), do not have much of a forum from what I can see online.  Eventually, the struggles and issues related to MS blur into "normal aging" and the very real challenges become less interesting to the social media doom scroll community.   I don't have a story full of dramatic symptoms that turn life upside down.  Quite the opposite actually.  

I am no longer raising kids, negotiating homework, laundry and after-school activities while running on fumes.  I am no longer coping with the stresses and worries of maintaining my viability in the job market.  I am simply adapting to my changing physical needs while striving to be a good neighbor, friend and generous member of my community.

So, while my day-to-day life may not be as exciting as it used to be, there are opportunities that come my way that are fulfilling even with the challenges.  The love of family, the beauty of a winter sunset, good books and the occasional movie make for a quiet life full of simple pleasures.