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Throughout my experience with MG, I wish I had talked more with my mom and sister about their experiences as caregivers. Most of the time, I feel like I just look at my illness from my perspective only and don’t take into account how it has also changed my family’s life.
For those who are caregivers (family, friends, significant others, etc.), how has myasthenia gravis changed your life? What are some lessons you have learned from your own unique experience?
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I am new to this forum and fairly new as a caregiver to a daughter with MG. Anna was diagnosed about 16 months ago, takes Mestinon and Mycophenolate and has had a thymectomy. She is 18 years old and getting ready to graduate from high school and go to college. Quite an emotional time for both of us! Sometimes I find it hard to know if her emotional times are due to her MG, her age, her busy life, or anxiety over leaving home and attending college…or a little bit of all of those things. I have struggled with my own emotions regarding her MG and feelings of frustration and sadness that she would be dealt this hand. I have really had to learn to keep my own emotions in check so I can be as supportive as possible to her. I have also had to learn how to hear what is behind her words when she seems angry or out of control, what we see isn’t always exactly what she feels. Helping someone you love go through something as complicated and misunderstood as this has been quite a journey, but I have learned a lot about both of us. At 56 years old, I feel a bit like I’m starting all over, adjusting my expectations for her and for me, focusing on the here and now a little more than on the distant future, and hoping and praying that Anna will continue to be the strong, confident, positive person she has been up until now. My prayers go out for everyone dealing with Myasthenia Gravis, that we can find comfort and support in knowing we’re not alone. Thank you for this opportunity to share!
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