Explaining GBS to others
AnonymousJanuary 2, 2013 at 8:56 pm
I’m new to the forum and was diagnosed with GBS in September. 5 days of IVIG therapy then off to rehab for 5 1/2 weeks. I came home in October and have undergone both OT and PT 2x/week since being here. I’m very thankful to have been able to start using a cane recently. However, I still have the burning, tingling pain in my hands, arms, feet, and legs. I tire easily and it takes everything out of me to do the smallest of things.
My sister is a nurse and told my husband this past weekend that, “She should be doing more and she shouldn’t be tired. Would be good for her look for work.” My husband pounced on her and said, “You don’t see how far she has come and how hard she works at everything. What she could do before takes her twice as long. She is in constant pain and can’t feel her lower legs and feet so walking is a challenge. She’s the one who goes to bed at night and can’t have a quilt on her because it hurts her. She’s the one who fights all day to remain optimistic and struggles with the depression side of this horrible disease. Just because you’re a nurse, you have absolutely no idea the hell she has been through!”
How can I explain GBS to others so they understand that just because I’m walking with a cane doesn’t mean that I’m cured? That this is only the beginning for the long road to recovery?
January 3, 2013 at 7:02 am
Actually, your husband did a pretty good job of it.
I wish the forum had its search function again. There was a good illustration involving spoons that helped demonstate what it is like to live with an invisible disease. Ah, I found it. It is specifically regarding lupus, but it applies to GBS and CIDP as well. Here is a link to it: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
I hope this helps,
AnonymousJanuary 13, 2013 at 8:25 pm
now that we have watched enough cooking shows to innately know how to cook…if only i had the energy to walk to car.turn the inition.walk all the way through to the dairy… put groceries up on coveyor belt…drive home..carry groceries inside..put away…get back out….fix some good food..serve..without food slipping off plate…eat ….clean up and then fall onto couch….my spoons are all gone..
April 5, 2013 at 1:56 pm
The Parry Paary and Steinberg book is an excellent overview of the disorder.
September 23, 2013 at 3:32 pm
I think it is impossible for someone who has never had it to understand. I’ve not been able to adequately explain it to people because I can’t think of anything to compare it to that would help truly relay the physical sensations, and never mind the emotional devastation! The closest I’ve come is to let people know that what they see on the outside is different from what is going on inside. It’s the stuff you can’t see that can be far worse, especially after you become mobile again.
Re the nurse’s total lack of understanding…my ICU nurses said that they had only seen one case of GBS in their entire career (12/18/21 years). A few had never seen it before. Sometimes, they lacked patience with me but overall were pretty good. The general ward nurses, on the other hand, were pretty terrible.
I am so happy for you that you have such an understanding and supportive husband. Love that he sticks up for you and provides a shield between you and someone with so little understanding of the disorder.
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