NeuroTalk Support Groups - Hydrocephalus n' Loneliness

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I know how you fell

Quote:

Originally Posted by lcms0516 (Post 769725)

I have congenital hydrocephalus. I was married for 8.5yrs. My (ex)wife left me at 4.75yrs. into the marriage. A year after my (ex)wife left, I found out that my (ex)wife had wanted my health problems to 'just go away'. That ignorant attitude is why my (ex)wife freaked when I had a seizure. So I divorced her after 8.5yrs.. Four years after that, my long held suspicion about her health was confirmed, so I was vindicated. I could no longer be looked at as the sole problem in the marriage.

I was engaged to another woman after my marriage. But when I held her accountable for her behavior(Bi-Polar II), she was quick to 'diagnose' me.

elAm I due to die alone because people can't cope with my health?:(

I also have hydrocephalus my husband things i should control my moods and the hydro is no big thing and will just go away not much I can do with his out support im alone with it.

You are so lucky to have a wonderful man married 24 years hes thinks this no big thing I get scared when have a promblem HUGS To YOU BOTH

Quote:

Originally Posted by lcms0516 (Post 916543)

What is the name of the support group on Facebook.

I have been engaged since 2007, but the reason for my original post has to do with, feet.

It is actually women with hydrocephalus and life with hydrocephalus. There is this guy named ron who will give you friend suggestions from people in your area as well. It is fascinating and everyone is so nice and understanding.

Quote:

Originally Posted by kl2568 (Post 923574)

The 'Women With Hydrocephalus' group is restricted. But I do know who Ron Patrick Kelleher is.

I did go to a hydrocephalus support group over the summer, with my father. He had largely left knowledge of my health up to my mother for my entire life. To the point that, if I did start to have a seizure, or start vomiting, he would probably call my mother. He stayed away from it. The group meeting we went to, was mostly parents with, kids no older than 15, that had hydrocephalus. There weren't any adults with hydrocephalus in attendance, other than me.

Quote:

Originally Posted by lcms0516 (Post 916621)

I do ride my bike a lot. But recently, I have been so down, that I couldn't do much of anything.

This thread looks like it hasn't been posted on in a while but I just joined, so I've been poking around the forums, and reading stuff I've wanted to comment on. A lot of stuff that has been posted really resonates with me. I posted in my intro post about not knowing any people of "average" intelligence because most of the other people I know also have physical or mental challenges to go along with their hydro.
I have some mild physical challenges which have precluded me from doing things like sports, so I can't really relate to that group of people. I also never really feel like I have much in common with people my own age, so I don't really hang out with many of them, either.

I have acquaintances from work, but don't really hang out outside of work much. I think my main issue seems to be that I can't feel like I can open up to people to let them know about the struggles I've been through, particularly all the challenges I faced as a child. I never like to feel like I'm being judged, but I know everyone does it whether they are aware of it or not.

Katie, I saw a post directing me to this board for pseudotumor cerebri, but I think hydro is different actually than what I have.

I wanted to reply to you though because I spent a lot of time single with few friends for other reasons. I too felt that I couldn't tell people what my youth had been like. I met somebody new who I confided in eventually who told me he didn't understand why I was so afraid because anyone who really got to know me would like me. The friendship ultimately didn't work out, but I carried that with me and found it to be true. Not everyone you open up to will be a good person or good friend, but you create closeness with people by sharing bad times as well as good.

I've found that if I stick with fun and funny things at first, I can gauge who might be interested in learning more by sharing just a minor frustration or difficulty. If the person seems genuinely interested in the conversation, you can slowly over time share more and more to see where the comfort level is at. I have gone from being somebody with few friends, to having quite a few friends of varying degrees of closeness. Not everyone will be somebody who wants to hear all about your struggles with hydro, but some will. And some who don't can still be friends that meet other needs in your life.

Quote:

Originally Posted by Katie79 (Post 1026957)