Mindfulness & Myasthenia Gravis: A Forum for Stress Management
Mindfulness & Myasthenia Gravis is an online forum crafted for individuals living with myasthenia gravis, offering a platform to discuss and share insights on how mindfulness can help in managing stress and potentially reducing the occurrence of MG flares. This forum serves as a knowledge exchange where members can converse about personal experiences, strategies, and the benefits of mindfulness as a tool for stress relief.
Our discussions focus on understanding the role stress plays in MG and how mindfulness techniques can be adapted to fit our unique needs. We delve into topics such as mindful breathing, meditation, and the science of stress in relation to MG, all within a supportive and educational online environment.
We welcome everyone, from those curious about mindfulness to seasoned practitioners, to join our conversations. Our goal is to empower each other with knowledge and shared experiences, providing support and insights into living more peacefully with myasthenia gravis.
I truly understand. Though I wasn’t diagnosed with MG until 7 years ago,it definitely turned my 🌏 upside down. Missing out on big plans, like a scouting event with my family (4 yrs into the planning), really hit hard 💔. But, you know what? I discovered something amazing in the midst of it all ✨.
I found joy in giving back, in little things that make a big difference 🌟. Shifting my focus to these acts of kindness became my secret superpower against MG's challenges 🦸♂️. Sure, MG has put some limits on what I can do, but I'm not the one to back down. I made a 'can-do' list, packed with things like cozy TV nights 📺 and cool science experiments with my kids 🔬. Every check on that list is a victory 🏆.
And oh, my crafting! It’s not just a hobby; it’s my creative sanctuary 🎨. It's where I turn struggles into art, one craft at a time. So, here I am, riding the waves of life with MG, finding light in unexpected places, and crafting not just things, but hope and resilience too 🌈💪. I'm embracing every moment, because these moments? They're what make my story shine 🌟. ❄️ team member Deborah ❄️
Call me old fashion, but whenever I'm feeling stressed or overwhelmed, I make a nice cup of coffee. I like to pull out the photo albums because they hold such precious memories. My son likes to look at them with me which always brings a smile to my face. I buy adult coloring books (The ones that take about a week to color 1 page). All in all I really enjoy quiet activities. - Jazmin (MG team member)
I love this! I do a lot of coloring and painting on my iPad - which is great for hand limitations and mobility- though I also do so with my mixed media cards. I find the coloring in any medium a great meditative practice. ❄️Team member Deborah ❄️
Suppose you ever feel overwhelmed, stressed, or uncomfortable with your emotions and do not know what to do next or how to process them. In that case, I suggest going to YouTube and searching "guided meditation for _______(the emotion you are currently feeling or the problem you are experiencing)."
Jodi, Team Member
so very true! I’ve actually rescind posted a few myself. In fact, I used one of them very often when I was in the hospital last. I’ve also do one weekly in my friend’s autoimmune room on clubhouse and we record them. That being said there are many amazing apps that I use and love for binaural beats - I also have “singing bowls” which really help me recenter and relax a bit. - funny thing is one day when I was struggle my younger son started playing my bowl and tried to guide me into a meditation - on a separate occasion my older son gave me his oculus goggles to do a submersive meditation and during my last sepsis infection while barely able to breathe my husband was encouraging me to meditate- (at first I could not but with his touch grounding me I was able to recenter for a moment - and eventually get to a meditative state ) - years ago my family would never have made such suggestions. However, they have seen first hand, the changes I have had bc of meditation. ❄️ team member Deborah❄️
I'm grateful to have lived a full life before contracting this disease. My daughter was not so lucky as she had a stroke from Lupus just weeks before graduating from college. After months of physical therapy, I helped her sign up with the Oklahama Vocational Rehabilitation Service, a service provided by the state to help injured workers get back into the workforce. She received cognitive therapy and occupational therapy that turned her life around. About 10 years later she received a new medication that put her Lupus in remission for the last 20 years. Now she's a very successful business woman in a technical field with far fewer limitations. So, don't give up. You could go into remission. New medications may come along.
Congratulations to your daughter for reaching remission. What journey that must have been. I too reside in Oklahoma. Do you yourself have MG or lupus like your daughter? - Jazmin (MG team member)
