Explores issues related to emotional health and well-being for those with neuromuscular disease.
“It’s Not Fair!” – Coping Spiritually
No, life is not fair: however, the more I focus on what I perceive others have that I do not have , the more unhappy and envious I become. I could easily allow myself to lose my joy. My antidote comes from focusing on prayer and gratitude to God, most often through my journaling.
CMT, Grief, and Healing
Under the right circumstances, when I am not fatigued, when I wear orthortic bracing and when the ground level and firm, I walk well. Perhaps a casual observer would not know that I have any difficulties. It turns out, however, that I no longer walk well on the beach.
Resilience has been defined by psychologists as the ability to adapt well to the difficulties in our lives including all kinds of adversity and stress. Resilience can help those of us who are coping with significant health challenges such as dealing with neuromuscular disease.
Giving an Honest Answer to “How are You?”
I desire close, genuine relationships. Authentic sharing of my truth, even when I experience pain, must be part of that. I cannot foster close relationships while hiding behind empty words such as “fine” when someone asks how I am.
Gratitude and Neuromuscular Disease
Gratitude, an attitude of thankfulness, does more than benefit the receiver. In individuals with neuromuscular disease, keeping a gratitude journal was found to improve energy, positive mood, feelings of connectedness, positive rating of one’s own life, and even sleep duration and quality.
Handling Grief Over Health Losses
When diagnosed with health problems such as neuromuscular disease, people often experience grief. Learn about the five stages of grief and how they apply to grief over health problems.
Journal Writing and Neuromuscular Disease
While the benefits of personal writing have been well documented, some people find it difficult to get started. To help you, I have provided a few journaling prompts about the experience of having a neuromuscular disease to help you begin journaling.
Keeping a Gratitude Journal
As I have dealt with my diagnosis and symptoms of neuromuscular disease over the past few years, sometimes my emotions have given way to worry or despair. When I begin to despair, one of my most useful tools is prayer, often in the form of keeping a gratitude journal.
Learning through Neuromuscular Disease
Recently, I had the opportunity to speak on behalf of the Muscular Dystrophy Association to children walking to raise money. I found that I had much to tell these children, not just about neuromuscular disease and the MDA, but about coping and thriving despite life’s struggles.
Like a Flower Grows Volume 3 Launch
Like a Flower Grows, Volume 3 includes devotions about coping with the neuromuscular disease Charcot Marie Tooth (CMT). I hope to educate readers about this little-know hereditary peripheral neuropathy while sharing my spiritual journey and the connection between scripture and everyday life.
Maintaining Self-esteem Despite Differences
Maintaining self-esteem despite the physical disabilities and differences caused by neuromuscular disease can enable one to make a difference in the world.
Neuromuscular Disease and Spiritual Journaling
Recently, most of my journaling has taken the form of spiritual journaling. I have found this type of journaling to be beneficial to my ability to cope and thrive despite neuromuscular disease. Along with emotional and psychological benefits, journaling also has important health benefits.
Performance Anxiety and Advocacy
Increasingly, I have opportunitites to speak to others about neuromuscular disease. I sometimes experience performance anxiety before or during my speaking, but have been learning to manage my stage fright.
I realized after a couple of days of feeling irritable and snapping at my family that I was having more than just an attitude problem -- I was having a gratitude problem. I had forgotten how much I have to be grateful. Instead, I was focusing on complaints and problems.
Resilience - Bending Not Breaking
I wish to be resilient, like these pine trees. I have faced trials and difficulties in the past, and will continue to further problems in the future. These include (but certainly not limited to) diagnosis with the neuromuscular disease Charcot Marie Tooth. The nature of CMT requires resilience.
Resilience and Optimism
Research has shown that people can learn to be resilient, to face adversity well, as my father did after having a stroke. As I face of my own diagnosis of neuromuscular disease, I claim these qualities for myself.
Respecting My Own Physical Limitations
When I fail to respect my physical limitations and rely on my own strength, I can easily over to it, and even hurt myself. When I respect the limitations that neuromuscular disease causes me, I avoid hurting myself, and, ultimately, can accomplish more.
Social Support and Neuromuscular Disease
This time I have determined to handle my health difficulties differently than I before. Because I opened up to others, I found the strength that I need to handle my diagnosis of Charcot Marie Tooth in an emotionally health way. In turn, I have been able to help others.
Recently, much of my journaling has taken the form of spiritual journaling. I have found this to be a valuable practice to help me cope with the neuromuscular disease, remember my many blessings, and strengthen my walk with G-d. Journaling has also been found to have important health benefits.
Stress Expectation and Change
Broadly defined, there are two types of problems. There are problem that can be changed, fixed, improved, or made better, and problems that cannot. Spending time focusing on unfixable problems can become a major source of stress.
Stress, Humor, and Neuromuscular Disease
While neuromuscular disease is not funny, many of the situations that people find themselves in are funny. Seeing the humor in our struggles provides relief from stress and improve physical and emotional health.
Support Groups and Neuromuscular Disease
If you do not yet belong to a support group, I strongly urge you to find a support group in your area or online. The relationships that you build will help you to live, cope, and even thrive despite neuromuscular disease.
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If you do not yet belong to a support group, I strongly urge you to find a support group in your area. The relationships that you build will help you to live, cope, and maybe even thrive despite neuromuscular disease.
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