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.

The View From Here

The summer of 2025 is beginning to gently wane and with the return of kids to school, fall will arrive before we know it.  It has been, and continues for now, to be fully sunshine filled, long days just beginning to edge into earlier sunsets.  Cool morning walks, outdoor activities, making memories, another year slips past. 

I moved this summer.  I have found a little bit of shangrila in a small apartment in northern California.  The view from here is panoramic, literally.  Sunset is something to look forward to.  And such is this season of life, when after 20 years with multiple sclerosis I can count my blessings.  While so many in the world are facing dire circumstances, it is the luck of the draw perhaps, that has me sitting in front of an oscillating fan, enjoying a quiet Sunday evening.

Whatever the world looks like for you, I wish you ease and well being.  The famed yoga teacher, BKS Iyengar is credited with this statement about the benefits of yoga:  "Yoga teaches us to cure what need not be endured and endure what cannot be cured."  More broadly, a balanced life that leans into wellness and good health might embrace a similar philosophy.  We are simple, fragile creatures really - giving ourselves the best chance for a good life is a goal worth pursuing.

So, do all the things your mom told you to do.  Wash your hands.  Eat your vegetables and don't skip breakfast.  Take a walk or exercise in some way and don't eat too many sweets.  Avoid doing anything that leaves you impaired.  Your brain needs to be able to tell you things.  And most of all, care for those who you share this time on earth with.  Hug the willing recipient and smile more often.  

Super Heroes

I am at home, sitting on the couch.  I've been snuggled up with my dog watching a favorite TV show and haven't gotten up for a while.  Gradually I become aware of stiffness creeping into my lower legs.  And as I flex my feet my toes spasm painfully.

When this happens it's usually because I've put pressure on a nerve in my foot that causes my toes to respond by splaying apart.  Counter pressure usually makes the muscles relax.  When that doesn't work, I grab my toes and force them back into a normal position.  It took a good 20 minutes to get things to settle down.  I wonder if I'm dehydrated but I know I need to move more.  

Functional exercise is a simple way to help keep neural pathways talking to muscles and enabling movement.  Replicating the motions needed to sit, stand or climb stairs, functional exercise can help keep and maintain mobility.  Perhaps it's better not to even call it exercise, since that word seems to be a real turn-off for a lot of people.  

Movement is what our bodies are built for.  Look at all the joints, tendons, bones and muscles that we're made of.  Something so articulated is designed to move.  

In the MS world there are people who seem to have overcome the challenges that decreased mobility brings.  Wholistically managing their self-care; the physical, emotional, social and psychological.  Often these folks credit exercise, movement and being active as helping them live their best life with MS.  And that's really what it's all about; staying engaged with life.

There's no one solution to living with a chronic neurological condition.  It's not just the medication your doctor prescribes.  We are more than just a container for pills or infusions.  How the day to day living is managed is a big part of having a good quality of life.

  

Bananas

I have been feeling kind of puny for the past several weeks. If I didn’t know better I’d swear I was having a relapse, but one that is combined with a cold or allergies.  Symptoms have included everything from new neuropathy in my toes to a runny nose, sneezing, fever and sore throat.  

I stocked up on cough drops, allergy medicine, cough medicine and even used my nasal rinse.  The humidifier was even taken down from the closet shelf.  Is it llergies?  A nasty cold?  The flu?  The battle continued until:

[BREAKING NEWS:  A trip to the ED in late February to be evaluated for pneumonia reveals ... COVID.]  

All this aside, now that I’ve graduated to SPMS, relapses are supposed to be a thing of the past. If a bona fide relapse does occur, SPMS is considered “active.”  However, with a SPMS relapse, full recovery isn’t likely. Only an MRI can confirm if new lesions are the cause behind new symptoms.  I think in general, once your neurologist has given you your SPMS badge, progression is assumed to be in your future.

So for this post, I am turning my attention to bananas. Because sometimes MS is just bananas and sometimes makes me feel so. 

Let’s be honest. You either have no bananas or too many. Once you buy a bunch they demand to be eaten or they ripen quickly and insist on being made into muffins.  Not just that, they inevitably ripen all at once and attract fruit flies. (Does anyone know where fruit flies come from?  Do they stowaway on unripened fruit and bide their time waiting for things to decay?).

I bought bananas just before Christmas Eve. I thought I was ordering a bunch of six.  But I misread the shopping app and ended up with six .....

So muffins were made. And they were so delicious I continued making them even after my accidental abundance was gone. I continued making banana muffins until the end of January when I ate a dozen in three days (I had added chocolate chips). Even my dog woofed in disgust as he watched me stuffing my mouth over the kitchen sink.

The moral of the story is, don’t let MS drive you bananas. Make some muffins; add some chocolate chips.

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.