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Denial.......? Fear?
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<blockquote data-quote="dreamer" data-source="post: 125641" data-attributes="member: 1697"><p>Star, I like how you worded what you said. </p><p></p><p>While driving to court, I was thinking more about this. Like I tried to say, the whole thing is hard on everyone. </p><p>ANyway, I was thinking, I reached a turning point here- for how I felt at my husband and HIS illness and how I looked at my girlfriend and my son--- and even how I looked at myself? AT first with my illness, I was pretty much laid out cold, and laying here, when I COULD think at all, I was quite angry, volatile, ugly. I ws frustrated and kept screaming that when I got better I was gonna do this or that. I also kept putting everything off till I "got better" (well, truth is- I had no choice, I could not move anything except my mouth, so everything did just sit here undone) Then I would say well, I can deal with that after I get betetr. When I was no longer completely unable to move, at first I still had difficulty doing things....so I moped around and climbed around the messes. Shrugged my shoulders at things a lot. </p><p>Time kept moving forward and I began to realize Life was going on, and me being sick did not change that. </p><p>I also realized I might not get "better" exactly. There was every possibility this WAS my Life now. </p><p>Very slowly I had to learn HOW to live Life WITH these limitations. At the same time, I had to teach my loved ones how to live Life with me how I now am. We are STILL learning, we continue to learn, and I am now seeing this is kind of "normal" Maybe not to the degree to which we must adjust, BUT----- people DO change over time. Their abilities change over time. </p><p>I had to stop phraseing things in a way that implied things would not stay this way forever. I had to stop saying- I will do THAT when I am better. </p><p>I know sometimes when I input to threads about dealing with a difficult child, some people wonder what in the world I am doing or thinking. BUT living with my illness and watching my husband illness and my difficult child and now my young son-----watching the various mental, psychological and very physical difficulties? It slowly dawned on me, we are slowly adapting to what we can do, what we cannot do, what we might be able to do-----and more and more I find myself thinking of the words to the Serenity Prayer. Courage to do the things I can, etc etc.....Accept the things I cannot change etc etc........yada yada......</p><p></p><p>Right now, today, THIS is how things are TODAY right now. I will never have today back, we do not get make up days.....TODAY this is what I am able to do------THIS is what my husband caan do today. Today. This is what difficult child can do TODAY. This is simply HOW IT IS. (I am saying - for me, for my family) And I will accept THIS ......</p><p></p><p>I have NO idea WHAT tomorrow will bring. I have learned today IS a gift. None of us know if we even have tomorrow, and that is true whether we HAVE a serious illness or not. ANYTHING can happen. To ANYONE. At any time. </p><p></p><p>Our day to day priorities have changed dramatically here over the last several years. Yes, I do still work toward long term goals, I do not mean we don't. But our goals have........evolved. If we have cold cereal for dinner, <shrug> If laundry cannot get done or is not folded perfect <shrug> We have decided to use our energy very cautiously- for the things WE find MOST important to US. Teaching my son to read has been one thing the whole family began to focus on, with awesome results. Teaching oldest difficult child to be able to go out of the house at all, we ALL worked on. Meanwhile the laundry sat mostly undone. One Christmas instead of decorateing our home and makeing a holiday dinner, we worked together and gathered with our community group to gather gifts and the 5 of us worked together to deliver some. Yes, it took all 5 of us to do so, and it took all my energy- which is why we did not have a huge celebration at home- becuz I could do one or the other, but not both.....and I could drive the car but not carry the things to the recipient. So- we decided as a family what we were going to do. </p><p></p><p>Our life is NOT "Leave it to Beaver" Our once immaculate home is a mess......BUT we are learning still------and we are still kind gentle compassionate careing people. We do not have a rigid set routine and schedule-----but we do manage to attend to needs. We have just redefined what "need" means.</p><p></p><p>The stresses of the illnesses that 4 of the 5 of us have, and the impact on the rest of us related to the particular problems any 1 of us has......it has changed us dramatically. </p><p>We had to find ways to reduce other stresses. We had to adapt. ALL of us had to- to accomodate ourself and to accomodate each other. BUT it is NOT easy. ANd yes, I agree with Star- there are stages to grief, and grief is what you experience when you face your own health crisis and it is also what your loved ones have to go thru while THEY face your health crisis. when your mom died, you had things you had to do to cope and deal with that loss. Soundds like you husband is struggling and trying to get to the acceptance stage of his grief for the changes that have occured due to your health problems. No 2 people will follow the same timeline for the stages of grief, and people can and will go back and forth and up and down in those stages. All of us here on earth are human......mere flesh and blood. None of us are perfect none of us are saints. we all have things we have to learn to cope with. YOU have needs, he has needs.....your needs differ from your partners. I am guessing that for years you both were able to FILL each others needs. You were partners, a couple- one had a need and the other filled that need. BUT right now this is long term....and both of you are without the other being able to fill each others needs. You need his help with the things you cannot do---and he needs help too. You are both victims of this illness. It has brought changes that are not fair to either of you. My husband always reminds me---he is not mad at ME for my limits- (HA! LOL- I always scream back, hey wait- YOU were ill and unavailable to ME first!) He is not mad at ME, he is mad at CIRCUMSTANCES. Bummer is circumstances do not hear his anger, I do. </p><p></p><p>I used to scream I HATE BIPOLAR when frustrated with myself or my difficult child......now my husband will remind me- dear, you hate the bipolar, but be sure to make it clear you do not hate the person with the bipolar. </p><p></p><p>Now I scream UG! I HATE Rheumatic illness and Lupus-------and he quietly says, yeah I do too, but I do not hate YOU. </p><p></p><p>All of us in my home have learned to try to remember, none of us went out and actively chose our disabilities, we did not go out and shop for some illness or limitation just so we could back out of doing things. We did not go buy a poked out eye or panic attacks just to be nasty to our partner or our parents or our children. </p><p>ALl of them simply HAPPENED. They happened to each of us...but when they happened to each of us, they also affected those who love us. </p><p>It is not fair to us, but it is also not fair to those around us. </p><p></p><p>Now we try to work together to learn new ways of living our life in spite of our disabilities and limits. We help each other learn to live around our limits. We work hard to help each other live THRU these crisises and difficulties. It is not always easy. </p><p></p><p>when I had to be alone, on my scooter and pretty frail, and my son had just injured his eye-I resented my husband most dureing that time. AT that time, he was quite physically ill- sepsis, pneumonia, respiratory distress, psychosis. I had to deal with sons eye issue alone----worse- 5 hours away at univ hospital. I also had to figure out how to take care of difficult child and easy child.......</p><p>navigating pre surg etc with my son, while I was alone on a scooter was not easy and I hated husband for his being unable to pitch in with one single thing. </p><p>AT that moment I did not CARE he was literally fighting for his life. I needed him with me whispering into my ear that our son would be OK. I needed him there holding our sons other hand. </p><p>BUT do I REALLY hate husband? no. But I was maxed out. stressed beyond my limits. and then some. I was caught in the heat of the moment. I am only human. And the man I married and chose to be my life partner was not where I thought he was supposed to be, nevermind it was not his fault. </p><p>I have wondered since then, did my husband feel the same way inside himself? Maybe he did- laying there in ICU all alone, did he wonder where HIS Life partner was? Was he hurt and angry I was not there with HIM? He needed me.......they thought he was dying. He had been told of son, but, he was so ill, he most likely did not understand. </p><p>OK so thats an extreme example-----BUT.....please try to be patient with your husband. This is all something that he most likely was never expecting- and is going on far longer than he um.can handle- just like it is for you. </p><p></p><p>It is not easy. Not for you, not for him. and long term? it just grows. NOONE ever expects to have to deal with such things in Life. Long term stress is SO awful. Long term illness is SO hard- on EVERYONE. And possible he may feel guilt- becuz gosh, he is your husband, why can't he "fix it" and watching you have to go thru this---watching anyone you love be in pain (or in health crisis) is excrutiating. and he must be scared. and his usual life partner is the ill person, so he prolly feels he cannot come to you for comfort. So he might fel abandoned.</p></blockquote><p></p>
[QUOTE="dreamer, post: 125641, member: 1697"] Star, I like how you worded what you said. While driving to court, I was thinking more about this. Like I tried to say, the whole thing is hard on everyone. ANyway, I was thinking, I reached a turning point here- for how I felt at my husband and HIS illness and how I looked at my girlfriend and my son--- and even how I looked at myself? AT first with my illness, I was pretty much laid out cold, and laying here, when I COULD think at all, I was quite angry, volatile, ugly. I ws frustrated and kept screaming that when I got better I was gonna do this or that. I also kept putting everything off till I "got better" (well, truth is- I had no choice, I could not move anything except my mouth, so everything did just sit here undone) Then I would say well, I can deal with that after I get betetr. When I was no longer completely unable to move, at first I still had difficulty doing things....so I moped around and climbed around the messes. Shrugged my shoulders at things a lot. Time kept moving forward and I began to realize Life was going on, and me being sick did not change that. I also realized I might not get "better" exactly. There was every possibility this WAS my Life now. Very slowly I had to learn HOW to live Life WITH these limitations. At the same time, I had to teach my loved ones how to live Life with me how I now am. We are STILL learning, we continue to learn, and I am now seeing this is kind of "normal" Maybe not to the degree to which we must adjust, BUT----- people DO change over time. Their abilities change over time. I had to stop phraseing things in a way that implied things would not stay this way forever. I had to stop saying- I will do THAT when I am better. I know sometimes when I input to threads about dealing with a difficult child, some people wonder what in the world I am doing or thinking. BUT living with my illness and watching my husband illness and my difficult child and now my young son-----watching the various mental, psychological and very physical difficulties? It slowly dawned on me, we are slowly adapting to what we can do, what we cannot do, what we might be able to do-----and more and more I find myself thinking of the words to the Serenity Prayer. Courage to do the things I can, etc etc.....Accept the things I cannot change etc etc........yada yada...... Right now, today, THIS is how things are TODAY right now. I will never have today back, we do not get make up days.....TODAY this is what I am able to do------THIS is what my husband caan do today. Today. This is what difficult child can do TODAY. This is simply HOW IT IS. (I am saying - for me, for my family) And I will accept THIS ...... I have NO idea WHAT tomorrow will bring. I have learned today IS a gift. None of us know if we even have tomorrow, and that is true whether we HAVE a serious illness or not. ANYTHING can happen. To ANYONE. At any time. Our day to day priorities have changed dramatically here over the last several years. Yes, I do still work toward long term goals, I do not mean we don't. But our goals have........evolved. If we have cold cereal for dinner, <shrug> If laundry cannot get done or is not folded perfect <shrug> We have decided to use our energy very cautiously- for the things WE find MOST important to US. Teaching my son to read has been one thing the whole family began to focus on, with awesome results. Teaching oldest difficult child to be able to go out of the house at all, we ALL worked on. Meanwhile the laundry sat mostly undone. One Christmas instead of decorateing our home and makeing a holiday dinner, we worked together and gathered with our community group to gather gifts and the 5 of us worked together to deliver some. Yes, it took all 5 of us to do so, and it took all my energy- which is why we did not have a huge celebration at home- becuz I could do one or the other, but not both.....and I could drive the car but not carry the things to the recipient. So- we decided as a family what we were going to do. Our life is NOT "Leave it to Beaver" Our once immaculate home is a mess......BUT we are learning still------and we are still kind gentle compassionate careing people. We do not have a rigid set routine and schedule-----but we do manage to attend to needs. We have just redefined what "need" means. The stresses of the illnesses that 4 of the 5 of us have, and the impact on the rest of us related to the particular problems any 1 of us has......it has changed us dramatically. We had to find ways to reduce other stresses. We had to adapt. ALL of us had to- to accomodate ourself and to accomodate each other. BUT it is NOT easy. ANd yes, I agree with Star- there are stages to grief, and grief is what you experience when you face your own health crisis and it is also what your loved ones have to go thru while THEY face your health crisis. when your mom died, you had things you had to do to cope and deal with that loss. Soundds like you husband is struggling and trying to get to the acceptance stage of his grief for the changes that have occured due to your health problems. No 2 people will follow the same timeline for the stages of grief, and people can and will go back and forth and up and down in those stages. All of us here on earth are human......mere flesh and blood. None of us are perfect none of us are saints. we all have things we have to learn to cope with. YOU have needs, he has needs.....your needs differ from your partners. I am guessing that for years you both were able to FILL each others needs. You were partners, a couple- one had a need and the other filled that need. BUT right now this is long term....and both of you are without the other being able to fill each others needs. You need his help with the things you cannot do---and he needs help too. You are both victims of this illness. It has brought changes that are not fair to either of you. My husband always reminds me---he is not mad at ME for my limits- (HA! LOL- I always scream back, hey wait- YOU were ill and unavailable to ME first!) He is not mad at ME, he is mad at CIRCUMSTANCES. Bummer is circumstances do not hear his anger, I do. I used to scream I HATE BIPOLAR when frustrated with myself or my difficult child......now my husband will remind me- dear, you hate the bipolar, but be sure to make it clear you do not hate the person with the bipolar. Now I scream UG! I HATE Rheumatic illness and Lupus-------and he quietly says, yeah I do too, but I do not hate YOU. All of us in my home have learned to try to remember, none of us went out and actively chose our disabilities, we did not go out and shop for some illness or limitation just so we could back out of doing things. We did not go buy a poked out eye or panic attacks just to be nasty to our partner or our parents or our children. ALl of them simply HAPPENED. They happened to each of us...but when they happened to each of us, they also affected those who love us. It is not fair to us, but it is also not fair to those around us. Now we try to work together to learn new ways of living our life in spite of our disabilities and limits. We help each other learn to live around our limits. We work hard to help each other live THRU these crisises and difficulties. It is not always easy. when I had to be alone, on my scooter and pretty frail, and my son had just injured his eye-I resented my husband most dureing that time. AT that time, he was quite physically ill- sepsis, pneumonia, respiratory distress, psychosis. I had to deal with sons eye issue alone----worse- 5 hours away at univ hospital. I also had to figure out how to take care of difficult child and easy child....... navigating pre surg etc with my son, while I was alone on a scooter was not easy and I hated husband for his being unable to pitch in with one single thing. AT that moment I did not CARE he was literally fighting for his life. I needed him with me whispering into my ear that our son would be OK. I needed him there holding our sons other hand. BUT do I REALLY hate husband? no. But I was maxed out. stressed beyond my limits. and then some. I was caught in the heat of the moment. I am only human. And the man I married and chose to be my life partner was not where I thought he was supposed to be, nevermind it was not his fault. I have wondered since then, did my husband feel the same way inside himself? Maybe he did- laying there in ICU all alone, did he wonder where HIS Life partner was? Was he hurt and angry I was not there with HIM? He needed me.......they thought he was dying. He had been told of son, but, he was so ill, he most likely did not understand. OK so thats an extreme example-----BUT.....please try to be patient with your husband. This is all something that he most likely was never expecting- and is going on far longer than he um.can handle- just like it is for you. It is not easy. Not for you, not for him. and long term? it just grows. NOONE ever expects to have to deal with such things in Life. Long term stress is SO awful. Long term illness is SO hard- on EVERYONE. And possible he may feel guilt- becuz gosh, he is your husband, why can't he "fix it" and watching you have to go thru this---watching anyone you love be in pain (or in health crisis) is excrutiating. and he must be scared. and his usual life partner is the ill person, so he prolly feels he cannot come to you for comfort. So he might fel abandoned. [/QUOTE]
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