Sarah Le Huray is a mom, wife, occasional researcher, blogger, and an MS Society Ambassador. Her lovely blog and other postings can be found at http://www.sarahlehuray.com.
Reeling in the expectations
I have a very guilt-filled relationship with my MS.
Mostly to do with my kids.
Life was always go-go-go for me. Career, kids, balancing the two. Add in the incredible MS fatigue, and it’s so hard to stay above water.
We’ve talked about fatigue before, but I’ll mention it again now. It is one of the most common symptoms associated with all forms and stages of MS. And can be severely debilitating.
It’s hard to accept that.
Being so stubborn, I attempt to continue on with life – determined to make everything just like before.
As if my life is now defined into two stages – before MS and after.
I struggle to keep up with my former self. Activities, trips with the kids, producing the energy parenthood requires.
And after the start of a very busy spring break with my energy-filled kids, it catches up. And I feel horrible. Sick and tingly. Foggy.
I know the process well. It’s been happening for at least a year now. But I just don’t catch on. Perhaps I’m clinging to the hope that maybe, just maybe, today it’ll be different?
I probably haven’t fully mourned the old me yet. The woman who was healthy and had only positive life plans.
And letting go of that order and control.
I can’t change what I have been dealt. And I do my best to be accepting and gentle with myself.
But man, adaptation is hard. Even years in process.
Today’s going to be a restful, quiet day. And I am grateful.
ABOUT MARY ~
Mary is a patient advocate for MS, chronic illness & disabilities. She is a freelance writer from Texas who enjoys exploring a variety of different styles & genres, however her deep passion for creative writing (poetry, essay, narrative interview & non-fiction) remains unwavering & purposeful. Mary's personal & professional background is an eclectic compilation consisting of the fine arts, civil rights advocacy, fundraising with 15 years in sales/marketing & event planning in the private club industry. Mary is a 1990 graduate from The University of North Texas with a B.S. in Hotel/Restaurant Management. In 2001, Mary was diagnosed with Multiple Sclerosis. Within a few years, health issues forced her to resign from the career she loved. As her marriage began to crumble, Mary was keenly aware of the emotional & mental crisis firmly taking hold. Eventually, she sought the help of a professional therapist which helped her learn the important coping skills needed to tame/calm mood disorders & to encourage healthy ways in which to purge the noisy chaos inside the brain. This loss of reality, normalcy, & PURPOSE needed to be reinvented, renewed & rewritten...NOW! The divorce & all related proceedings lasted an unfathomable six years, yet it was the therapy, communities & her writing which kept her most grounded. Each poem a cathartic purge, each word a therapeutic tool meant for healing & to inspire resilience. Blindsided by this newfound purpose & passion, Mary continues writing & exploring a plethora of multimedia outlets to this day. Her writing, networking & advocacy projects target the MS, chronic illness & disability communities. Her interactive presence can be seen throughout social media. Although MS is the primary community in which she advocates, Mary enjoys playing an active role in other patient communities (bloggers, writers, music, live chats, special events, & many more. One of the key messages Mary continues to emphasize is how chronic illness can affect everyone differently. MS is a prime example in that we are not a "one size fits all." This disease called MS is a conundrum in every which way. To this day, research continues, yet we still don't know the root cause for MS, yet current findings now show "risk factors" for the disease. MS can morph as it sees fit to do so. Unpredictably, silently, sometimes relentlessly this MS becomes an uninvited, unwanted "internal room-mate." Mary's overall background & her desire to discover herself & new creative outlets was a plus. A renewed student for life, Mary continues to explore the unknown - Once you switch off your "auto pilot" it's amazing what you can see & do. Place focus on learning, consume new information & participate in activities uncharted or foreign (The science of Neuroplasticity). All of this is most DEFINITELY a work in progress, but remember to focus most on the important things in life. Laugh out loud & live selflessly with compassion, purpose & unbridled passion.
Connect with Mary at:
🔸Twitter: @pettigrew66, @MSpals
Acknowledgments and Press ~ UPDATES TO COME
* Creator & Co-founder of MSpals: A Global Organization (2014 - present)
* Administrator & contributing author of content, posts, & interviews: MSpals blog:
~ The Summer of Sport: Forward Poetry 2012
~ Poetry Rivals Collection 2013
~ Something On Our Minds Vol.III
~ Something On Our Minds Vol IV.
Interviews: National Multiple Sclerosis Society's "Momentum Magazine"
~ 2013 = Art Therapy & MS
~ 2015 = Connecting Via Social Media
Other works also featured on a variety of blogs, websites, videos, as well as other multimedia platforms including:
iConquerMS/The Accelerated Cure Project
WEGO Health - Patient Leader
HealtheVoices - Patient Leader
MS Focus - Monthly contributor
View all posts by Mary