This is not a post for sympathy but one to educate and encourage.
I love hugs.
I always have.
Since I was born into a demonstrative family filled with tons of huggers it was pretty unavoidable to not become a hugger.
For over ten years, I have experienced a different kind of “hugging” and it is something unfamiliar to many folks who are not as acquainted with multiple sclerosis (MS).
When I was in my mid-40s I began noticing occasional tightening, constrictive feelings around and throughout my chest. I was always in a series of diabetic studies with Wells Institute of Health and Wellness and had a weekly, bi-monthly, or monthly physical exam which often included EKGs and other cardio-vascular testing. My heart was strong and healthy, and my blood pressure was always excellent, often a surprise considering I was a single dad with adopted and foster sons creating a world of levels of excitement and chaos.
I remember sitting in the new auditorium at Centerville High School during a dance concert when one of my first episodes occurred. I struggled with deciding whether to leave the auditorium to call 911 or wait it out. The tightness around the chest and shoulders eventually subsided and I mentioned it to my doctor the following day. Everything with my tests checked out with a thumbs up from the doctor.
In the past several years, I’ve noticed at least one constriction episode every couple of months. With the string of family deaths, it seemed natural that stress was simply an irritant. With my MS diagnosis, if the “hugs” were discussed, I completely missed that topic.
This summer, as a family friend, whose husband recently passed away with a more severe level of MS, and I were chatting, she casually inquired if I had experienced “hugs.” Ummm… she knows me so she should know I am a hugger. She chuckled and proceeded to educate me about “MS hugs.”
The definition via WebMD (I like the layman’s terminology):
Multiple sclerosis affects the way nerves send messages.
The tightness, pain, or whatever you’re feeling results from spasms in small muscles between your ribs.
The doctor will call these intercostal muscles.
They hold your rib cage together and help it expand when you move, bend, or breathe.
If these muscles have spasms, you feel painful, tightening pressure.
The ‘MS hug’ is a symptom of MS that feels like an uncomfortable, sometimes painful feeling of tightness or pressure, usually around your stomach or chest.
The pain or tightness can stretch all around the chest or stomach, or it can be just on one side.
The MS hug can feel different from one person to another.
MS hugs can be brought about by stress, fatigue, or illness.
These hugs are not nearly as enjoyable as hugs shared with another but it’s now a part of life with which I must contend.
Life goes on and each day often tugs along a few surprises, new or returned, some appreciated and some a bit aggravating when it interferes with life. Writing and research can easily be accomplished from my bedroom; some days, however, it’s just a struggle to sit up to write or read. And that’s okay. I’m encouraged to rest more which gives me plenty of time to love on The Quartet which always gives me so many reasons to laugh and smile.
This MS physical chart is how I typically look at life: realistically and with great humor and lots of hope!
My MS seems to mostly affect everything from the groin to toes. My former years of dance training has been invaluable in helping me find new ways to use my legs and feet.
Family friends are understanding when I cannot go through with plans. It’s not that I don’t want to spend time with them, it’s that my body’s impulsive schedule simply cannot abide by my own, much-wanted and needed social schedule.
“We can do this another time,” they say.
And, we do.
Last night I was to have dinner and attend a musical with Mama Kay, my next door adopted mama. I begged off dinner and with that, she sensed I was not feeling my best and stood firm in addressing me honestly about how I was really feeling. I finally admitted it was too much to attend the show.
And, the world worked its magic this morning.
The show’s director wanted me to see “our stars” that we share and made sure I have a ticket for tonight. Immediately after, a parent of one of my seniors texted to offer rides to and from the school.
When life throws lemons… make lemonade. Yes. That’s one of the components in the recipe for readjusting one’s life as required by nature’s requirements.
Sometimes, it’s okay to prop up Charlie Brown’s type of Christmas tree at the most visible window in your home to be seen by all who pass by. But, there’s nothing l sad or pathetic about that tree when we can still decorate the hell out of it!
Life is brilliant… it’s beautiful!
We ride at Dawn!