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Frustrated...caution whine ahead
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<blockquote data-quote="dreamer" data-source="post: 171327" data-attributes="member: 1697"><p>Linda, my heart breaks for you, and yes, I can totally relate. The condition of my house disgusts me, depresses me, and makes me angry beyond belief. It has been a fewyears since I permitted anyone except my kids friends to see it. Where I once worked in very physically demanding jobs up to 20 hours a day 7 days a week, I then slept 22 hours many many days and my awake time was often spent in a fog, or simply moaning in pain. Yes, I have the pred induced Cushings and the pred induced diabetes. It was a trade off, I accepted those in exchange for more awake time, more ability to function. I still have moments when I want to run thru the house screaming at my husband and kids becuz they do nothing, not one dish, not one article of laundry, do not feed our pets, nothing. </p><p></p><p>HOnestly, for me, I think the mtx increased my sleepiness and fogginess. I reduced that a little, added more pred, and added my HUmira. Just like it can take somany constant medication changes for our difficult children, these illnesses also can require constant adjustments, sometimes becuz something does not work, sometimes due to adverse reactions, sometimes our body changes, sometimes we get cumulative effects, or we become immune. </p><p>Bottom line is without these adverse effects I probably would already be gone from Earth. If I were not gone from Earth, I would absolutely be far far moer ill and miserable and less functional than I am now, even on my worst day. My family can take me or leave me how I am right now. They can accept my level of functioning or they can head out the door. If they are not part of the solution, they are part of the problem. I still do what I can for them, still work to help them reach their life goals, and I still do it all without any help from family, friends, neighbors, agencies, becuz our help agencies have slowly disintegrated due to lack of funds over the years. </p><p>The miracle is in that my difficult child is still alive at all.....she has not suicided....my husband has not yet succumbed to his long list of diagnosis'es......my son is appearing quite normal and far more functional than some of his peers these days....</p><p>Jon and Kate plus 8 has a thing in their intro- this is OUR life. thats how I feel. This is our life. this is the cards we were dealt. I cannot make my illness go away. I cannot make my husband illness magically go away. I cannot wave a wand and make my difficult child be a non difficult child. What I can do is simply what I can do. SO I simply do do what I can do. And I do my best to honor the gifts we do have. SOme days I simply honor the fact that we ARE alive. If someone else does not like what did not get made for supper, fine. let them do something about it. I did not choose to have this illness. I did not choose my husband to have his diagnosis'es. I did not choose my childrens health issues. This is just simply, the luck of the draw. This is how it is, this is how it turned out. I still consider myself lucky to have my children, I feel blessed, it was not an easy road for me to have any kids. I am grateful for my home, I worked my fingers to the bone, quite literally, to get it and keep it. But at the end of the day, I always think of my best friend, died so young, in a very gruesome long drawn out and excrustiating painful way, leaving her husband and children behind here...... and I am grateful I am here. Irregardless of what I can still do and less mindful of those things I can no longer do. </p><p>LOL, hardest for me was that I had been SO hypomanic, SO physical, and ironically a care provider myself, doing all these things for other people, not just at work for pay but also becuz I had no money, so my way to show peope I cared was to provide care for them whenever they needed it. My entire life changed so dramatically. </p><p>I began useing my mobility scooter before I totally lost ability to walk- becuz it helped me pace myself better, enabled me to continue to keep up with being more involved in my kids activities than I would have been able to otherwise. I had to reset priorities and think them over very carefully to make sure to be able to do those things that I found MOST vital. I know many people look at our life here, and my ideas and wonder how I came to choose the priorities the way I did.....but it was my experiences in Life, my relationships with others, my on job experience in Hospice, my goals for what I wanted for my children that helped me come to my decisions. If someone is not pleased with the condition of my housekeeping, too bad. Usually I use my energy to spend quality HAPPY time with my children. If I choose to cook with my kids, I am not necessarily thinking of the goal of teaching them to cook, becuz they can always learn that from foodnetwork or a cookbook, what my goal is is to spend time makeing memories with my kids. when we do cook, often it is something we decide to make to take and share with someone else, like maybe for a neighbor who we think could use a happy thought coming in form of some special cookies, and I want my kids to think about how they can be kind to others. </p><p></p><p>Don't get me wrong, I do now again do laundry every day, and I do the dishes as I go thruout the day......but for a long time, I could not do so and I would have my good days and use them up catching up- unburying us from mountains of laundry and every dish in the entire house dirty. </p><p>And sadly, our home is still buried under from my many years of serious illness. and yes I HATE it. BUT I cannot do everything. I am after all, merely a simple ordniary human being. </p><p>Be gentle to yourself, be kind to yourself, you are also merely an ordinary humanbeing. You can only do what you can do. But, also keep in mind, everyone else also has their personal limits. They too can only do what they can do. and their priorities might be different than yours, and they might be focusing on what they consider important to them. </p><p>Chronic illness is very very hard on familys, couples, relationships and a chronic illness impacts EVERYONE. Just as our difficult children illness affects us, our illness also affects others. Learning to cope with my difficult children diagnosis'es really hit home for me once I realized and faced just how my husband and kids havd to learn to cope with MY chronic illness. My difficult children diagnosis'es caused a lot of hardship for us as a family, and yes, some call some of it abuse.......but my own illness has also now caused grave hardship in our family, and some could call some of it neglect. It has helped me learn better how we pull together, how we learn to accept the differences. I can only do what I can do. And my family accepts it, even if they do not make up for what I cannot do. </p><p>It takes time to get to this place....it is not easy, it is not fun. It takes a thick skin. THat grows slowly with time. I simply no longer have the energy to care somuch what others think, and I am learning to simply adjust myself to accept how things are. BUT I have been living this way now with this illness for a number of years......and yes the emotional and psychological impact was prolly much harder to deal with than the actual physical difficulties. I truly felt my body let me down huge. I am grateful it permitted me to enjoy good health and strength for the years that it did let me.</p></blockquote><p></p>
[QUOTE="dreamer, post: 171327, member: 1697"] Linda, my heart breaks for you, and yes, I can totally relate. The condition of my house disgusts me, depresses me, and makes me angry beyond belief. It has been a fewyears since I permitted anyone except my kids friends to see it. Where I once worked in very physically demanding jobs up to 20 hours a day 7 days a week, I then slept 22 hours many many days and my awake time was often spent in a fog, or simply moaning in pain. Yes, I have the pred induced Cushings and the pred induced diabetes. It was a trade off, I accepted those in exchange for more awake time, more ability to function. I still have moments when I want to run thru the house screaming at my husband and kids becuz they do nothing, not one dish, not one article of laundry, do not feed our pets, nothing. HOnestly, for me, I think the mtx increased my sleepiness and fogginess. I reduced that a little, added more pred, and added my HUmira. Just like it can take somany constant medication changes for our difficult children, these illnesses also can require constant adjustments, sometimes becuz something does not work, sometimes due to adverse reactions, sometimes our body changes, sometimes we get cumulative effects, or we become immune. Bottom line is without these adverse effects I probably would already be gone from Earth. If I were not gone from Earth, I would absolutely be far far moer ill and miserable and less functional than I am now, even on my worst day. My family can take me or leave me how I am right now. They can accept my level of functioning or they can head out the door. If they are not part of the solution, they are part of the problem. I still do what I can for them, still work to help them reach their life goals, and I still do it all without any help from family, friends, neighbors, agencies, becuz our help agencies have slowly disintegrated due to lack of funds over the years. The miracle is in that my difficult child is still alive at all.....she has not suicided....my husband has not yet succumbed to his long list of diagnosis'es......my son is appearing quite normal and far more functional than some of his peers these days.... Jon and Kate plus 8 has a thing in their intro- this is OUR life. thats how I feel. This is our life. this is the cards we were dealt. I cannot make my illness go away. I cannot make my husband illness magically go away. I cannot wave a wand and make my difficult child be a non difficult child. What I can do is simply what I can do. SO I simply do do what I can do. And I do my best to honor the gifts we do have. SOme days I simply honor the fact that we ARE alive. If someone else does not like what did not get made for supper, fine. let them do something about it. I did not choose to have this illness. I did not choose my husband to have his diagnosis'es. I did not choose my childrens health issues. This is just simply, the luck of the draw. This is how it is, this is how it turned out. I still consider myself lucky to have my children, I feel blessed, it was not an easy road for me to have any kids. I am grateful for my home, I worked my fingers to the bone, quite literally, to get it and keep it. But at the end of the day, I always think of my best friend, died so young, in a very gruesome long drawn out and excrustiating painful way, leaving her husband and children behind here...... and I am grateful I am here. Irregardless of what I can still do and less mindful of those things I can no longer do. LOL, hardest for me was that I had been SO hypomanic, SO physical, and ironically a care provider myself, doing all these things for other people, not just at work for pay but also becuz I had no money, so my way to show peope I cared was to provide care for them whenever they needed it. My entire life changed so dramatically. I began useing my mobility scooter before I totally lost ability to walk- becuz it helped me pace myself better, enabled me to continue to keep up with being more involved in my kids activities than I would have been able to otherwise. I had to reset priorities and think them over very carefully to make sure to be able to do those things that I found MOST vital. I know many people look at our life here, and my ideas and wonder how I came to choose the priorities the way I did.....but it was my experiences in Life, my relationships with others, my on job experience in Hospice, my goals for what I wanted for my children that helped me come to my decisions. If someone is not pleased with the condition of my housekeeping, too bad. Usually I use my energy to spend quality HAPPY time with my children. If I choose to cook with my kids, I am not necessarily thinking of the goal of teaching them to cook, becuz they can always learn that from foodnetwork or a cookbook, what my goal is is to spend time makeing memories with my kids. when we do cook, often it is something we decide to make to take and share with someone else, like maybe for a neighbor who we think could use a happy thought coming in form of some special cookies, and I want my kids to think about how they can be kind to others. Don't get me wrong, I do now again do laundry every day, and I do the dishes as I go thruout the day......but for a long time, I could not do so and I would have my good days and use them up catching up- unburying us from mountains of laundry and every dish in the entire house dirty. And sadly, our home is still buried under from my many years of serious illness. and yes I HATE it. BUT I cannot do everything. I am after all, merely a simple ordniary human being. Be gentle to yourself, be kind to yourself, you are also merely an ordinary humanbeing. You can only do what you can do. But, also keep in mind, everyone else also has their personal limits. They too can only do what they can do. and their priorities might be different than yours, and they might be focusing on what they consider important to them. Chronic illness is very very hard on familys, couples, relationships and a chronic illness impacts EVERYONE. Just as our difficult children illness affects us, our illness also affects others. Learning to cope with my difficult children diagnosis'es really hit home for me once I realized and faced just how my husband and kids havd to learn to cope with MY chronic illness. My difficult children diagnosis'es caused a lot of hardship for us as a family, and yes, some call some of it abuse.......but my own illness has also now caused grave hardship in our family, and some could call some of it neglect. It has helped me learn better how we pull together, how we learn to accept the differences. I can only do what I can do. And my family accepts it, even if they do not make up for what I cannot do. It takes time to get to this place....it is not easy, it is not fun. It takes a thick skin. THat grows slowly with time. I simply no longer have the energy to care somuch what others think, and I am learning to simply adjust myself to accept how things are. BUT I have been living this way now with this illness for a number of years......and yes the emotional and psychological impact was prolly much harder to deal with than the actual physical difficulties. I truly felt my body let me down huge. I am grateful it permitted me to enjoy good health and strength for the years that it did let me. [/QUOTE]
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