Reply To: frustrated

Jeff,

I hear you but there has to be a desire on the part of the spouse to get to a place of understanding. For me, I believe the difficulty comes from history. I was sent home “healed” for the most part and told that I would be fine in a year or so, to go one with my life and forget about it. The reality is I have never forgotten because I have always had some degree of residuals. What I did not know was that they were residuals (other than the tingling in my hands and feet). No one ever talked to me or my husband about the possibility of that.

I was raising a family and just went about my life. Looking back, there were so many things that I now know were residuals but were seen as something else by the doctors. I have been treated for arthritis in my feet for years, but this Nov. when I saw the neuro and he asked me to describe the pain, he immediately said that it was a neuropathic pain and not arthritis. I had orthotics made this year and the specialist immediately said the same thing…not arthritis. This is just one thing. There have been many. I can see why my family thinks the way they do. We are/were uneducated about the long term prognosis of this illness.

To educate now, means that there has to be a return to the illness. My husbands comment about two weeks ago was that I had no idea how hard it was on him and the kids when I was sick. I do know. I had four kids and one was only a year old. How could a mother not know? But also know I wasn’t here, I was in hospital two hours away. So I think the trauma of the event has affected him in many ways and he won’t talk about it. I think he fears the future as it relates to GBS. I have to find a way to gently ease him into this nightmare. It will come, but in the meantime, it is a lonely road some daysI am so thankful that I can come here.

For the most part, I feel safe here and can vent my frustrations with what I am experiencing and know there will be people who understand. We need to be kind to our spouses. For people like myself, Ali, boomerbabe, Chrissy, we had thought GBS was in the past and now it has reared it’s ugly head. Our spouses had also left GBS in the past. Because they see us on the outside unchanged, it must be hard for them to fathom what is going on on the inside for us. I have not given up. I have a loving family and spouse. As he feels safe, he will get it, I am sure.

Thanks for the kind words Jeff. Be thankful for that loving and supportive wife! I am not giving up…..