Hi! I'm Wendy, mom of 2, and someone who is feeling lost and confused. I was diagnosed with CMT1A a little over 1 year ago. I am in a constant state of "achy to sharp debilitating" type pain 24/7/365. However, everyone I know who knows I have this disease says "How are you?" to me but I can see by the look on their face they don't really want to know. I don't want to answer them because the truth would sound to them (w/o this disease) as mere "complaining". Instead, I come off looking and being rude in their book.
No one wants to acknowledge I have this painful disease. I have to "force myself" to get up and "get through" my work day. Some will just say "God will provide a away" and "God will heal you, just pray". I truly believe He will help me. The question is How do I show those around me that maybe God wants them to be "my help"; "my healing through time off from some daily activities"? I do ask for help when my day is a "REALLY BAD ONE". But without sounding like a helpless, complaining person, How can I show them how to help me????
Thanks for letting me vent!! I know someone out there understands my frustration, confusion, and my "just want to slap the next "Hope you'll get better soon" person who comes my way" feelings.
1 quick question: What would be a polite way to tell "nosy folk" I'm the one the handicapped plate is for (on days I break dr orders and don't wear the braces)? I have a temp tag and already had someone say "You can't park there."
Charcot-Marie-Tooth1A
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