Thank you to the many community members who responded when we asked you to share your stories and insights to help others. During Myositis Awareness Month, it is especially important to connect with our community, share meaningful stories, and have a greater impact to support each other. Here is some of the best wellness and self-care advice from fellow TMA members!
“My life improved significantly when I discovered yoga. I’ve been practicing regularly for about 12 years now. Yoga has helped me build and maintain strength, improve flexibility and balance, maintain lung strength, help manage pain, and improve mental health. My practice really changed when I discovered Yin yoga. Yin has helped me the most with pain management and flexibility. I practice Yin once a week regularly. I would encourage other patients to explore yoga. Many are intimidated to try a class at a studio, but I’d say don’t be afraid, it is a great way to have social interactions too. Don’t worry about what you look like or physical limitations. Yoga studios are a safe and welcoming space to all.” —Kristen Edmonds, thriving with DM
“Helpful things through the years: abiding faith in God; loving family and friends; a positive attitude; vegetarian for about 25 years; fresh air, nature, flower and vegetable gardens; daily exercise, including kegels, swallowing, neck, and back exercises (brief, but effective); treating any soreness with moderate heat and rest; eight hours of sleep at night; daytime rest as needed; helpful information and videos from TMA.” —Mary Spence, thriving with IBM at age 91
“Strive to get the best quality of life from each day. Practice YES AND… a theater technique that allows you to accept one reality while adding onto it (for example, Yes, I am sitting in the hospital getting an infusion AND Alice my dog is here licking my arm… or AND the sun is shining through the blinds. Both are happening!) Don’t forget to grieve your illness, transformation, and loss of identity and to recognize grief is not linear. Thriving is part of grieving. Write about your journey, illness, disability to process, share, and connect.” —Lisa Sniderman
“I congratulate myself for every EFFORT that I make, whether or not it results in success. At the end of each day, I can either sadly review a string of the day’s frustrations, or honestly congratulate myself for the good efforts that I made.” —Nancy Fortner, thriving with IBM