12/23/11
You are all wonderful. I have thought a lot about all you have said and this is what I can say:
ITS LONG…….
To star with my self.
Yes, I grew up with a very emotionally detached mother. She had me at 17 and was single and was a previous drug user and came from an abusive background. According to her she “got her act together” when she realized she was pregnant i.e. got off drugs, moved out of her family’s home, got an apartment and got a job. I think she leaves out a lot. I think it was much harder for her than she simplifies it to be, and she will not, under any circumstances, discuss it with me(In fact it and other points of my childhood have become such an issue that in the autumn of the first year of my condition she wrote me a farewell letter because we were not close enough). I have the feeling that my infant years were very hard on my mother based on many of my feelings now and experiences I have with my adopted children and what I have learned through raising them so far. Also I had a broken leg at age one which she attests to someone bouncing me on the couch to hard that has never sat right with me. My earliest memories are of being scared of her. And I have no memories of her ever reaching out to say “I love you” or hugging me. So yes I spent my childhood wondering what was wrong with me. But by the time I was 12 a significant event occurred that made me realized she was the problem, and while it did not heal me it lead me to the path to follow that I would not have to be at fault and that I could fix my life and follow a different route; be a different person. I was molested by father in the middle of the night and when I woke her up to her about it she said “Well what do you want me to do about it”. I knew from that moment on that I wasn’t defective - she was. From that day on I worked towards my goal to be better. And so we diverged. Over the years I have many times tried to reach out to here to bridge that gap, but to bridge I need to address these early childhood issue. NOT to blame at all. Actually to understand and even in someway to support her and understand her errors. I understand mistakes and even if she could talk about them we could get there. Many many many times I have written, or brought up a subject and she will not address it. She will not even admit she receives the letters, or if I talk to her about it, she looks at me like I am defective and asks me if I need to be on medication or get help; as if I am mentally unbalanced. She has this belief that she is a miracle worker having mostly raised two children on her own and put herself through school over a period of 30 years. That so far from reality I can’t even begin to start to explain it. Finally 5-6 years ago my husband and I decided it was time to stop putting such an effort out because nothing was coming back. The kids never got any b-day cards, my adopted children were ignored or got substandard attention. Then it was 2 years ago when she wrote the farewell letter. I ignored it to some degree and continue to behave as usual. She and her husband live on a sailboat in Mexico and are not reachable so I only e-mail happy mothers day to her and Merry Christmas., but do not receive anything from her in return. In fact her father died about 5 months ago, and I have not heard a word from her since I told her we would not be able to afford to go to the funeral. Raising me, she never maintained family ties with her family so I did not know him, very much like she behaves now.
But as I said as a teen I took a different route and when I met Joe (husband) we became best friends first and always had been. He was very much (in some ways) a family person, very very warm and affectionate, funny and generous, many of the traits that I was looking for to enrich my life with. We met in 1995 and married in 2000. Things didn’t go bad until my condition appeared. I really, really feel that our problems are primarily based around the fact that he is a forced care giver and feels over worked and under appreciated. I cannot do ANY of the work of a stay at home mom (which is what I was supposed to be) and I know he resents it. He also prides himself on the fact that he does not talks about his problems with ANYONE. He also has an Aunt who lives next to us who adds a considerable amount of help and stress financially and emotionally. She is a difficult person to get along with at times but she is also an incredibly helpful person. We pay her mortgage as our house is to small for her. We have been looking for two years to find accommodations for all of us - but everyone knows how the economy is. We are so far underwater in our mortgage in our house we could currently buy 6 houses for what we owe on this one. Walk away some would say and I would like to agree but that would mean giving up the one and only thing that this family does do together and has fun at. We ride horses. I can actually ride because the kids and Joe are able to get my horse ready for me and a friend will warm him up for me if he needs it. Then I can ride him using just leg commands he such a good horse - He’s the real man in my life! So we each have a horse. We a part of a club and we do activities, meetings and events with this club. That is our one outlet. So to give up this particular home would mean to give up that activity. We don’t vacation. We don’t have TV. We don’t have cell phones. We really, really watch our budget, and are trying to get into another home that would fit all of us and better our situation -but we live rurally and there is not a lot around here available. But all this puts a lot of stress on Joe and when I became ill it all fell to him.
So now when things get bad he uses me as a verbal punching bag. Its much like many of the traits off of the narcissist page, only this was never a problem before. And I don’t really know that it is a personality didorder ar a reflection of him being resentful of his role now. I just know that he gets really stressed. Blows up at me and the next day he is noticeably calmer. This is a sickness and he WILL NOT recognize it. When I try to show him he gets furious again. He starts to attack me and finds me at fault. He has the marriage cousler we were going to that this (his fury) is all in my mind. He really, really does not see his rage. I want to record him, but he monitors our money and I don’t have any to buy one and he won‘t let me get one. I know it is because he would then have to admit what he is doing. He really, really doesn’t and won’t see. Even right now after the other day he is all calm and relaxed and he can’t even see that difference - or won’t acknowledge it.
But he was not like this before he became my care giver. And he has to do so much, pretty much everything. I cannot drive, cook, do laundry, and we have 4 kids ages now 5,8,10 and 13. I can dress myself pretty much every day but in the height of spring there many days I cannot undress.
I have Autoimmune Ganglioneuritis which is untreatable in itself, but for which my neuro and pain dr’s have given me loads of meds to treat the pain. It is very activity and immune system dependent. I have spring/summer allergies and am useless physically to the family during higher pain times. My pain also increases through out the day - getting worse as activity increases ,and is also better if I am lying down (it originates out of the nerves C5/6 area). So with that said I am a couch potato mom. Joe has called me the worthless blob laying around on the couch all day many times. Though he has stopped using that term in particular, but when he is very, very , angry he refers to the fact that I just lay around on the couch. Which just about me drives to ……… Well I know you know how that hurts. But he doesn’t admit that it hurts me, he just says ”Well you made me angry” very snidely.
Feb - July I am 98 % incapacitate. I live with daily pain levels that are from 5-12. I can participate in activeys if the pain stays below an 8 (and I am plenty medicated) if I do not have to move my arms much.
The rest of the year my pain level varies unpredictably. If I get a ‘bug’ then of course I get high pain level
I like to add that I probably help evolve this problem, in that until earlier this year I would participate in these insult matches most eloquently. I would be just as mean and insulting as he. I don’t know who would start them, but I do know I was at fault for participating in them. So I stopped, pretty much cold turkey. I just realized one day that I was causing so much harm to him and our relationship and to our family. That was back in March of this year and he still hasn’t recognized that he is still doing it or that he needs to stop.
We also do not get a lot of outside support as my condition is “invisible. Thank you Zorro for pointing this out. I wish we had pain meters on our foreheads because people just do not understand. When I get out of the house it is not very often. So I take the time to make my appearance nice when I do go out. As I used to be a very active and involved mom and citizen people know me, and when they see me they exclaim at how great I look and how I must be doing great and am I ready to be involved again. It is so hard to get them to understand that I am not able to involve myself because my condition is not predictable, I am not a reliable person anymore unfortunate. I do not want to be volunteering for classrooms, activities, events, etc and not be able to follow through. But so many people just look at me and squint like I am coming up with excuses. I have had to learn to live with it. They can’t understand that I only come out of the house when I feel ok, then they won’t see me on my bad days - their really not interested in hearing about that - they just have these preconceived notions I think. Its because I have a condition no one has ever heard of so they question it a bit.

I know this is very, very long, but thanks for the time to read it. I actually feel really good having people to talk to and discuss this with. I really feel alienated with Joe denying that he is responsible for talking to me the way he does.
thanks