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Learning to rest without guilt: How has MG changed your relationship with rest?
Many people with MG search for ways to rest without guilt — especially when fatigue and muscle weakness make rest a necessity, not a luxury. Learning to honor rest can be one of the biggest emotional shifts after diagnosis.
For me, rest used to feel like something I had to earn. But MG — and the polyautoimmunity that came along for the ride like uninvited guests at a party — forced me to rethink everything. Rest became part of my treatment, part of my pacing, and part of how I care for myself.
It took time, but I’ve grown more comfortable giving myself permission to pause.
How has MG changed your relationship with rest?
Do you still struggle with guilt, or have you found ways to embrace rest more fully?
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3 Replies
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I have always been one that if the sun is up I’m awake, period. Go, go, go! Not so much now. I still don’t sleep during the day but go to bed a lot earlier than I used to and sleep longer than I used to. So far that has helped me along with black-out curtains lol.
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For me, I too want to be up when the sun is up, but MG has forced me to change my thinking alot. I used to feel guilty and frustrated when I had to lay down, in part because my family made me feel that way. But times have changed. I’ve learned that if I want to have any sort of a social life, or slog from doctor to doctor, I MUST have a good couple of hrs every day to cope, or I’m a basket case. Can’t cope at all. I’ve learned that if anyone else has a problem with it, it’s their problem, not mine. This has really made a difference in my mindset and my happiness. This is the new norm the new me!
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I was sleeping very poorly pre diagnosis, exhausted after minimal exertion. After diagnosis, learned about MG, started listening to my body and understood need for rest. My primary gave me an Rx for Trazadone (preapproved by neurologist),really helpful. Once I understood my pattern, and increased my sleep routine, I was sleeping more and planning my day depending on how I felt in the morning. Now on Mestinon and Prednisone, I don’t need to take many naps each day. Also have cut back on how many activities I do so I don’t get exhausted and pay the price for that! Self care not selfish, it’s essential for my wellbeing!
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