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Denial.......? Fear?
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<blockquote data-quote="dreamer" data-source="post: 125570" data-attributes="member: 1697"><p>I am sorry you are feeling like this, and sorry you have a health issue. </p><p>I know my illness and my husband illness helped me handle my difficult child illness differently, and my illness helped me cope with husband illness differently. </p><p>ALways I was the go getter and the helper and the one who did what needed to be done, for everyone around me. It was not very hard, cuz I have always been hypomanic, and I had the energy to put in very long days, and accomplish huge amounts. I was caretaker of all my sibs, (all significantly younger, one brother is almost 30 yrs younger, a set of twins almost 15 years younger and another bro 3 yrs younger) </p><p>Mom sent me out of the house to the streets very young, but still called me back daily for free babysitting. I did it. And finished school, and worked to support myself....</p><p>I worked physical jobs- mostly waiting tables, then as cpsmetologist, then selling real estate and then as a nurses aide and finally as a nurse. And I always worked LONG hours. </p><p>My husband became ill, vague undefined symptoms at first, and he could no longer hold a job. I was confused, and scared. Ouur kids were quite young, son not even born yet. I felt abandoned. No docs were finding the cause of his illness. Becuz no docs could label his problem, we could not get disability and we depended on his very extreme good pay.....I had to double my work hours once again (had reduced them to care for our kids) and even then our income was one tenth of what it had been. But he was also so sick, he could do NOTHING at home. Becuz he had no diagnosis, my family and friends decided he was faking. SO they wanted me to leave him. I wouldn't becuz I believed he was ill. </p><p>BUT I am sure I was not always pleasant around him or towards him. I was tired, lonesome, stressed. I know there were times I was downright hateful. I was angry a lot, becuz I kept feeling so overwhelmed. I did not feel like it was fair to ME that he could do nothing, and he could not even hold a conversation. </p><p>Didn't "I" deserve more out of life? Our house went into foreclosure, couldn't he see our difficulties? Wasn't he SUPPOSED to be my partner, standing beside me? </p><p>SOme people believe in mind over matter. Some feel anyone can do anything, if they set their mind to it. I believed that, and it had always worked for me. </p><p>So- why wasn't it working with my husband? </p><p>By then we knew we had a difficult child.and all her care providers were handleing her with a heavy hand and pushing her. She got surley, husband was still no help- and life went on miserably. </p><p>eventually we got diagnosis'es for him, but it took YEARS. and he had a lot of wrong ones along the way. Adult ADD, depression, then they realized he had physical problems....brain tumors------lung damage, spine problems----and then came schizoaffective, he fell catatonic. By this time he had been non functional for 10 years. The physical stuff helped (for me) to explain some of it, the heavier psychiatric diagnosis'es explained more. </p><p>Still people around us pushed on me to "dump him" </p><p>I was seriously considering it. Life was so hard. By then he could not be responsible for hismself, much less the kids. I could not leave him home alone any more than I could leave my young son home alone. My friends and family were long since gone, angry I "permitted" my husband to be so non functional. They could not stand to watch me be so overwhelmed. (I suppose it never occured to them to HELP ME- becuz I was The One who always helped everyone else with everything- and I think they were angry that I could no longer keep up with doing things for them) </p><p></p><p>Then I got sick. gradual at first, and I could push myself thru it. But when my Lupus and rheumatic illness finally hit hard, I was down for the count. </p><p>For almost 3 years I was a quadriplegic, no insurance, no family, no friends, a very ill husband, a very symptomatic difficult child, and 2 other kids. One of those 2 also with health issues. </p><p>Most of that time I spent in mind blowing extreme pain. BUT in between the pain, I was also slowly loseing my mind. I actually wished to die, wanted to die and could do nothing to make it happen. </p><p>Gradually, I began to sort of understand some of how my husband might feel. My body had betrayed me severely. My mind was now also betraying me. You cannot SEE Lupus, you cannot always see rheumatic illness. People began to hint that it was all in MY head. </p><p>While I was down, my much younger best friend began to have weird symptoms, docs kept saying nothing was wrong with her. Eventually they diagnosis'ed MS, and worse, then they kept saying new symptoms were medication reactions, but turned out to be melanoma. HER husband was frustrated, becuz docs were not figureing out what was wrong and kept saying she was ok....but she began to get worse and worse. He was frustrated. What he told us constantly was he could handle the workload, but he could not handle not haveing her companionship. But she was so ill, she was mostly incohereant. </p><p>THen my mom also began to act different. My sibs all decided mom was looking for attention. They arranged an intervention. I had been estranged for over 5 years entirely, but I heard and by then I was useing a walker, and I went over there. I "visited her" and used my nurseing school knowledge and I decided 1. her medications needed evaluation, and 2. chances were her cancer was back. My brother in law is a pharmacist and he blew me off. Pulled professional rank, so to speak. everyone else was sure mom was simply trying to be a spoiled brat. SO they tried to handle the situation by playing hardball.</p><p></p><p>Then mom passed away. </p><p>Yes, she had cancer in her brain spread from previous other cancer. </p><p></p><p>ALl these things pushed it home for me. It is hard to be ill, yes, for sure. But sometimes it is even harder to be a non ill spouse. It is hard to be ill, but it can be much harder to watch a loved one be ill. Hard becuz we are usually powerless to "fix" our loved one, hard becuz we do not have what we used to with our loved one, hard becuz others around us tend to walk away, becuz noone wants mortality right under our nose. WHen I was at my most ill, I did try to reach out to my sister once. SHe said- no- I keep unpleasantness away from me and my kids, we deserve better. YIKES. </p><p>I first got very ill in 1999. I now have been up and mobile for almost 2 years. Dealing with my son and his eye surgeries- I have looked at my difficult child and my husband differently. </p><p>ALl 5 of us have changed--- due to the chronic long term issues in our life. </p><p>SOme days my husband CAN respond to me- some days he CAN hold a conversation. I treasure those times enormously. FINALLY I understtand there are simply some things difficult child cannot do no matter how much I want her to be able to do them-----</p><p>LOL our sons school had the idea that to ackowledge his difficulties would help to meake him be disabled. Yeesh- when he lost his sight, they demanded he still continue to behave as if he were fully sighted. I now homeschool him. That mind over matter stuff does have a place in Life, but-----sometimes ya gotta be realistic. </p><p>But when you love someone, that is very very very hard to do. </p><p></p><p>I am not sure I worded thi s quite right, but I hafta get over to courthouse, LOL- I am running a tad late. </p><p></p><p>Try to be patient. husband prolly is overwhelmed and scared to peices and might be getting pushed on by people around him. Same as yu need him to be patient with your illness, you will have to be patient with his coming to terms with it, too. And neither is at all easy. He probably misses you and things you used to do. It is hard to accept such changes.</p></blockquote><p></p>
[QUOTE="dreamer, post: 125570, member: 1697"] I am sorry you are feeling like this, and sorry you have a health issue. I know my illness and my husband illness helped me handle my difficult child illness differently, and my illness helped me cope with husband illness differently. ALways I was the go getter and the helper and the one who did what needed to be done, for everyone around me. It was not very hard, cuz I have always been hypomanic, and I had the energy to put in very long days, and accomplish huge amounts. I was caretaker of all my sibs, (all significantly younger, one brother is almost 30 yrs younger, a set of twins almost 15 years younger and another bro 3 yrs younger) Mom sent me out of the house to the streets very young, but still called me back daily for free babysitting. I did it. And finished school, and worked to support myself.... I worked physical jobs- mostly waiting tables, then as cpsmetologist, then selling real estate and then as a nurses aide and finally as a nurse. And I always worked LONG hours. My husband became ill, vague undefined symptoms at first, and he could no longer hold a job. I was confused, and scared. Ouur kids were quite young, son not even born yet. I felt abandoned. No docs were finding the cause of his illness. Becuz no docs could label his problem, we could not get disability and we depended on his very extreme good pay.....I had to double my work hours once again (had reduced them to care for our kids) and even then our income was one tenth of what it had been. But he was also so sick, he could do NOTHING at home. Becuz he had no diagnosis, my family and friends decided he was faking. SO they wanted me to leave him. I wouldn't becuz I believed he was ill. BUT I am sure I was not always pleasant around him or towards him. I was tired, lonesome, stressed. I know there were times I was downright hateful. I was angry a lot, becuz I kept feeling so overwhelmed. I did not feel like it was fair to ME that he could do nothing, and he could not even hold a conversation. Didn't "I" deserve more out of life? Our house went into foreclosure, couldn't he see our difficulties? Wasn't he SUPPOSED to be my partner, standing beside me? SOme people believe in mind over matter. Some feel anyone can do anything, if they set their mind to it. I believed that, and it had always worked for me. So- why wasn't it working with my husband? By then we knew we had a difficult child.and all her care providers were handleing her with a heavy hand and pushing her. She got surley, husband was still no help- and life went on miserably. eventually we got diagnosis'es for him, but it took YEARS. and he had a lot of wrong ones along the way. Adult ADD, depression, then they realized he had physical problems....brain tumors------lung damage, spine problems----and then came schizoaffective, he fell catatonic. By this time he had been non functional for 10 years. The physical stuff helped (for me) to explain some of it, the heavier psychiatric diagnosis'es explained more. Still people around us pushed on me to "dump him" I was seriously considering it. Life was so hard. By then he could not be responsible for hismself, much less the kids. I could not leave him home alone any more than I could leave my young son home alone. My friends and family were long since gone, angry I "permitted" my husband to be so non functional. They could not stand to watch me be so overwhelmed. (I suppose it never occured to them to HELP ME- becuz I was The One who always helped everyone else with everything- and I think they were angry that I could no longer keep up with doing things for them) Then I got sick. gradual at first, and I could push myself thru it. But when my Lupus and rheumatic illness finally hit hard, I was down for the count. For almost 3 years I was a quadriplegic, no insurance, no family, no friends, a very ill husband, a very symptomatic difficult child, and 2 other kids. One of those 2 also with health issues. Most of that time I spent in mind blowing extreme pain. BUT in between the pain, I was also slowly loseing my mind. I actually wished to die, wanted to die and could do nothing to make it happen. Gradually, I began to sort of understand some of how my husband might feel. My body had betrayed me severely. My mind was now also betraying me. You cannot SEE Lupus, you cannot always see rheumatic illness. People began to hint that it was all in MY head. While I was down, my much younger best friend began to have weird symptoms, docs kept saying nothing was wrong with her. Eventually they diagnosis'ed MS, and worse, then they kept saying new symptoms were medication reactions, but turned out to be melanoma. HER husband was frustrated, becuz docs were not figureing out what was wrong and kept saying she was ok....but she began to get worse and worse. He was frustrated. What he told us constantly was he could handle the workload, but he could not handle not haveing her companionship. But she was so ill, she was mostly incohereant. THen my mom also began to act different. My sibs all decided mom was looking for attention. They arranged an intervention. I had been estranged for over 5 years entirely, but I heard and by then I was useing a walker, and I went over there. I "visited her" and used my nurseing school knowledge and I decided 1. her medications needed evaluation, and 2. chances were her cancer was back. My brother in law is a pharmacist and he blew me off. Pulled professional rank, so to speak. everyone else was sure mom was simply trying to be a spoiled brat. SO they tried to handle the situation by playing hardball. Then mom passed away. Yes, she had cancer in her brain spread from previous other cancer. ALl these things pushed it home for me. It is hard to be ill, yes, for sure. But sometimes it is even harder to be a non ill spouse. It is hard to be ill, but it can be much harder to watch a loved one be ill. Hard becuz we are usually powerless to "fix" our loved one, hard becuz we do not have what we used to with our loved one, hard becuz others around us tend to walk away, becuz noone wants mortality right under our nose. WHen I was at my most ill, I did try to reach out to my sister once. SHe said- no- I keep unpleasantness away from me and my kids, we deserve better. YIKES. I first got very ill in 1999. I now have been up and mobile for almost 2 years. Dealing with my son and his eye surgeries- I have looked at my difficult child and my husband differently. ALl 5 of us have changed--- due to the chronic long term issues in our life. SOme days my husband CAN respond to me- some days he CAN hold a conversation. I treasure those times enormously. FINALLY I understtand there are simply some things difficult child cannot do no matter how much I want her to be able to do them----- LOL our sons school had the idea that to ackowledge his difficulties would help to meake him be disabled. Yeesh- when he lost his sight, they demanded he still continue to behave as if he were fully sighted. I now homeschool him. That mind over matter stuff does have a place in Life, but-----sometimes ya gotta be realistic. But when you love someone, that is very very very hard to do. I am not sure I worded thi s quite right, but I hafta get over to courthouse, LOL- I am running a tad late. Try to be patient. husband prolly is overwhelmed and scared to peices and might be getting pushed on by people around him. Same as yu need him to be patient with your illness, you will have to be patient with his coming to terms with it, too. And neither is at all easy. He probably misses you and things you used to do. It is hard to accept such changes. [/QUOTE]
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