This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.
"When you get a diagnosis of a debilitating incurable disease, it affects not only the patient but the patient's entire family. The role of caregiver takes on new meaning and everyone has to shift their schedules, plans and priorities to meet the needs of the patient.
I could not do this without my wife and her support. I love her dearly and it frustrates me that not only am I fighting MG, but so is she, even though she is not sick. She has now realized that it all depends on what I have the capacity to do and not what she would like me to do.
Many caregivers care to excess and they do get frustrated with MG and the highs and lows associated with the disease. You can be fine one moment and in crisis the next. They want us to do more. Their thinking is it will help when in reality it may do more harm. With MG only the patient can assess their current condition and what they can or cannot do.
When you support MG, be an advocate, not a counselor. You cannot know what it is like, but you can be aware and empathetic. We do not need sympathy or feelings of guilt. These expressions only serve to heighten a battle of depression that we are already fighting because of MG. On my part I want to remain positive and express my appreciation for all the service I get from family and friends.
We are not lazy. We fight MG with everything we have. It just happens that we have excessive fatigue, pain, medical side effects, and weakness.
So I want to salute all those people who render assistance and support to their family or friend who is fighting an illness where there is no cure but there is hope. You are God's angels on earth and we love you for it."
Thank you to the person who contributed this story. This story in particular touched me so deeply. It's because of the situation I was placed within and those who chose to leave me and those who chose to remain with me. I am so very thankful for the ones that walk through this with me and don't run away, for the ones who help me especially those who help me every single day. We with MG can never run away, and we need your help, your support and your prayers. Thank you.
"When you get a diagnosis of a debilitating incurable disease, it affects not only the patient but the patient's entire family. The role of caregiver takes on new meaning and everyone has to shift their schedules, plans and priorities to meet the needs of the patient.
I could not do this without my wife and her support. I love her dearly and it frustrates me that not only am I fighting MG, but so is she, even though she is not sick. She has now realized that it all depends on what I have the capacity to do and not what she would like me to do.
Many caregivers care to excess and they do get frustrated with MG and the highs and lows associated with the disease. You can be fine one moment and in crisis the next. They want us to do more. Their thinking is it will help when in reality it may do more harm. With MG only the patient can assess their current condition and what they can or cannot do.
When you support MG, be an advocate, not a counselor. You cannot know what it is like, but you can be aware and empathetic. We do not need sympathy or feelings of guilt. These expressions only serve to heighten a battle of depression that we are already fighting because of MG. On my part I want to remain positive and express my appreciation for all the service I get from family and friends.
We are not lazy. We fight MG with everything we have. It just happens that we have excessive fatigue, pain, medical side effects, and weakness.
So I want to salute all those people who render assistance and support to their family or friend who is fighting an illness where there is no cure but there is hope. You are God's angels on earth and we love you for it."
From one MG person to another, well said!
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