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Everyone was smiling and cheerful, but it was definitely difficult not to notice the woman in the wheelchair whose husband fed her because she couldn't control the shaking of her hands. And the guy who walked with a cane had a pretty hard time of making his mouth form correctly around the words he said. My heart really ached for the young mother who couldn't hold up her arms. Her best friend came with her and took care of the little girl and I{coud see the fear in her eyes for her friend. MS is such an UN-FAIR disease! - attending a first MS support meeting, Abby,


Multiple Sclerosis is everywhere. It doesn't just affect the Warrior. MS attacks every aspect of life.

When I write my first young adult novel, I was still reeling from my 2001 diagnosis but had no way of conveying my feelings without appearing to illicit self-pity. If I have learned anything over the years since MS Warriors do no need to advertise their situation. Public opinion is always at the ready, wanted, or not.

We all need an outlet. Writing is mine. After attending my own first support group meeting, my emotions were still far too raw to accept what I was seeing. Abby's experience reflects my own, written carefully while silent tears wetted the keyboard.

I couldn't verbalize and didn't want to burden others with that frightening time in my life: a new mother, anxious teacher, alone on this foreign planet of an alphabet disease. Merging this fresh situation with my passion for writing, I announced to the world the realities of living with multiple sclerosis in my classroom. My students and I worked endlessly on the editing of Abby. A novel was born; A love for writing distilled in the hearts and minds of went plus middle school students; My frightened spirit eased. 

It is so easy to regurgitate over-used recitations of encouragement about making lemonade. Unfortunately, this light-hearted banter serves only to add weight to an already heavy heart.

Don't get me wrong. I find comfort in knowing that things could be worse and that my positive attitude hasn't been doused.  

If, like me, you find it difficult to actually speak the words of your mind, find an outlet: read, write, knit, paint, design, volunteer, join the church choir, start your own support group. There are so many avenues to follow.

HAVING RESILIENCE, OR the ability to bounce back or recover from difficulties is important for anyone.

But being resilient can be tough when you have multiple sclerosis, the incurable autoimmune condition that damages nerves and can lead to physical, cognitive, and emotional disability. “The unpredictable nature of this disease and varying levels of disability cause a lot of emotional upheavals,” says psychologist Amy Sullivan, director of behavioral medicine, research, and training at the Mellen Center for Multiple Sclerosis at Cleveland Clinic.

An Unpredictable Journey

MS affects each person differently, but the underlying cause of problems is the spontaneous attack on nerves carried out by T cells, which are part of the body's immune system. For reasons that aren't quite understood, these cells mistakenly see the coating of nerves in the spinal cord, brain, and optic nerves as a threat. Most commonly, T cell attacks come in waves that go into remission (called relapsing-remitting MS).

But MS patients have no way to tell when relapses will occur and what kind of damage they’ll cause. This can include problems with vision, cognition, muscles, and coordination, walking, using arms and legs, bladder or bowel dysfunction, and sexual dysfunction.

Besides, almost all MS patients experience fatigue so extreme that it limits their ability to function each day. And many MS patients develop depression or anxiety.

MS Barriers to Resilience

Coping with MS-related physical issues might seem like enough to keep anyone down. But a 2017 study of focus groups conducted by researchers at the University of Washington School of Medicine suggests there may be more that makes resilience difficult for MS patients, including:

  • Social limitations. “People mentioned losing friends who didn’t understand their MS, or feeling left out by friends and having fewer social interactions because they were in wheelchairs,” says psychologist Kevin Alschuler, a co-author of the study and an associate professor in the Department of Rehabilitation Medicine at the UW School of Medicine.
  • Negative thoughts and feelings. Study participants noted a low sense of self-worth, depressed mood, and a focus on things they could no longer do.
  • The stigma of MS. Some study participants said they hid their MS from others.
  • Alschuler says these barriers to resilience can accumulate and further challenge an MS patient’s ability to cope with adversity.

Can You Become Resilient?

The encouraging news is that experts say resilience is a skill that can be honed. “It’s not a trait you either have or don’t have,” Sullivan says. “It involves the way you overcome a situation with thoughts and behaviors, and the way you learn to become resilient over time.”

Sullivan recommends recognizing the need for help to become more resilient, and reaching out to a mental health professional who’s trained to work with people who have a chronic disease, like MS.

You can also take a class designed to help develop your resilience. These are often offered at large hospitals. A class might include stress reductionexercise, and lectures that provide strategies to look at life more positively.

Alschuler and his colleagues recently studied the effects of a positive psychology course called Everyday Matters from the National Multiple Sclerosis Society that includes a resilience component. They just presented the findings last week during a large international conference for multiple sclerosis experts in Paris. Researchers found that MS patients who took part in the positive psychology curriculum – which included weekly telephone-based group meetings and assigned videos and readings over a course of six weeks – experienced about a 20 percent improvement in resilience. By comparison, people who didn’t take part in the program experienced no change in resilience.

How to Become More Resilient

Alschuler and his colleagues observed from the MS focus groups that several factors can contribute to resilience and quality of life, and Sullivan echoed similar ideas when asked how she helps her patients become more resilient. Here are some tips they recommend:

  • Be flexible. “Be open to thinking about solutions to a problem or ways to cope with a challenge that might be new or different,” Alschuler suggests.
  • Maintain social connections with family and friends. “People with stronger support networks develop stronger resilience,” Sullivan points out. “You have to work on having stronger relationships and being able to accept help from others.”
  • Understand the ideals that make your life meaningful. “It’s more than bouncing back from adversity. It’s bouncing back to doing the things that are meaningful to you, whether it’s being a supportive spouse or a good sister – those types of things,” Alschuler explains. “When you have those targets and you bounce back, you can get refocused and regain your drive.”
  • Have a game plan. Be prepared for a situation so that you’re ready to face a challenge when it arises.
  • Take good care of yourself. Focus on well-being, energy conservation, and stress reduction. “Our minds and bodies need to be strong to tackle different situations. Then we have a better and easier time becoming resilient,” Sullivan says.
  • https://health.usnews.com/health-care/patient-advice/articles/2017-11-03/how-resilience-training-can-help-people-with-ms

My advice on this crisp autumn morning; Get involved in your MS. Fight back using the tools most comfortable to you. Above all, though, do not allow the opinions of those who do not know dictate who you are. If you sometimes feel a sense of superiority, so be it. You are strong. You are an arrogant MS Warrior. You fight a dragon ev-er-y day. You hum the jack-hammer song of the MRI. You've earned the right to be a bit haughty now and then. 

Have a great week,
Lisa, Lady with the Cane



    Oh, and this is what happened when I decided to talk about my disease. Feel free to check it out, ask me questions, or review my experience.
                                                                                    




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