Reply To: Have you forgotten I have CIDP?

July 5, 2012 at 4:06 pm

My husband is one of those who is very stubborn about not letting anyone know he has CIDP-MADSAM. We went to a CIDP conference once and they gave name tags to the attendees. Mine said my name/family and his said his name/CIDP. He was extremely annoyed with the labeling and refuses to attend another conference again. He has an atrophied hand and forearm and drop foot, and gets IVIG q 3 weeks, but as far as he is concerned that is a non issue–just a reality that keeps him from getting worse. I just let him do his thing. We started ice skating last Fall after 40 years of no skating. He would splat like a beached whale frequently as his gait is impaired, but all I could do was make sure he had knee pads, and elbow pads. But it sure made him happy to be out there on the ice–so we continue to go. Our friends know that he has CIDP, but since hubby never brings it up they have forgotten. About the only way he limits himself is post IVIG when he is tired for a day or two, and then he might mention that he needs to rest–he will avoid people for a couple of days after treatment. We all are so different in how we deal with the illness. He prefers to pretend he doesn’t have it.