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That when I say "I'm fine" I am almost never fine. I've just run out of ways to explain how I actually feel. And that "I'm fine" usually means "I don't have the energy to have this conversation right now."
That I'm not choosing this. Not choosing to cancel. Not choosing to lie in bed. Not choosing to be unreliable. If I could choose, I'd choose my old life in a heartbeat. The fact that I can't is the part that hurts the most.
that my good days are not proof that im better. they are good days. they will be followed by bad days. please dont use my good days against me on my bad days
Reading all of these as a caregiver husband. Taking notes. This is exactly why I joined — to understand things she might not know how to say to me directly. Thank you all for being so honest.
That I need them to stop trying to fix me and just sit with me in it. I don't need solutions. I need presence. Sometimes the most helpful thing is someone saying "that sucks, I'm sorry" instead of "have you tried..."
Another caregiver here actively listening. The "don't use good days against me on bad days" one — I've done that without realizing it. "But you were fine yesterday!" I can see how that feels dismissive. I'll do better.