Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 > Every single time she leaves, my house no longer accommodates me. > It works for her. And she whines about how my house is just not > organized " right. " Well, it's right for me! So stop undoing > everything! And my husband won't say a word... This is exactly what I tell friends about my aide. And, no, your husband won't say a word. That's his mother. Very personal relationship. He's doing the best he can. I could tell stories - husband, MIL stories. But I really loved my mother in law. That wasn't the problem. I left 36 years ago. You can refuse the help. There are other approaches. I have to beg my aide sometimes to just sit with me. I tell her, you know, it makes me very anxious for you to be up and doing around me. I cannot handle the stress of the activity around me. Please, please, please, just sit with me. Let's chat quietly. If you need her help, you're gonna have to wrangle the bleach from her somehow. You're gonna have to tell her, as I tell my aide, please, please, please let me show you where things go. She objects, illogically, you always have to have it your way! I said, yes, my way, so I CAN FIND IT AGAIN! When my aide handles my stuff, often, I never see it again. Like you, things are not organized but they are where I can easily use them with little effort. They ARE organized. For ME. This is where I live. It's not my aide's house. I can't live the way my aide does. If I could, I wouldn't need an aide. Organization is secondary to my being able to get what I need to do done in the simplest way possible. Not that pleasant for visitors. Well, that's their decision, not mine. I soooo understand, sagefox. toni nr annapolis and the bay md http://www.cfsnova.com/egg.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 I hope you have since kicked him to the curb? -----Original Message----- I downloaded?info from the internet for my husband once. I handed it to him, he looked it over and threw it in the garbage right in front of me. ? " Nobody move! I dropped me brain! " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 I've gotten steroid injections since the 90s off and on for asthma because I had no choice and it was a life or death situation each time. They do make you shaky and you have to lie down afterwards for a long period of time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 No, I can't go along with that. > " if you're in pain, feel it, embrace it, God is using it to show you > something. " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 What would it do for pain? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 I have found that this non caring attitude is true with relatives. Yes. I have also found it to be the case with many doctors. Doctors don't like their patients to have chronic pain. There is nothing much they can do. They may know the pain the patient feels but they don't dare show it. I've grown immune to people not caring or not believing that I'm in pain. I don't need their caring or their belief. I'm in year eight of chronic pain. In the beginning of the journey, I was hurt ALL the time by the lack of caring. Pamela Neckpain Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Some people just don't show their love that way. I love my husband. I do not show it as much as I should. God, no one could love any one more than I love that man. I was soooo rude to him tonight. I could just kick myselfl\\ Did anyone see that 20/20 show where the ugly duckling girl killed her two beautiful girl friends and their boy friends? If so, let me know ... I don't know how it ended. My husband forgot to push Pause. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 would that mean that fibromyalgia is psychosomatic? Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 > laxatives don't work on me. > > Laxatives don't work for me either. I spoke to my doctor and she had a solution but it's too embarassing to say. (I'm not sure how many people receive these responses.) Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 > I give them the website to look at. > That's always a good idea. Sometimes I like to hear about different health problems in little bites ... maybe a paragraph a week ... or just a few sentences. If I tried to tell you my problems, I'd be at my computer for hours. Pamela It takes a long time to understand stuff. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 > Will reply longer later. But what is NMH and POTS? Everything is an > acronymn and when you dont know what it means its a bit confusing. > ... My problem exactly. : ) Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 > it can sometimes seem that the least sympathetic people are those who > should really have the most sympathy. > > > Are you speaking of our doctors and medical people, . Or do you mean our close relatives? Or both? Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Marijuana doesn't work for me. It makes me very aware of every little ache and pain. It's legal in California where I live but it's against the federal law so it makes me nervous. What do you use or take that helps you? Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I write my husband love notes. : - D Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 I didn't write it but I can tell you that it most certainly is NOT mean spirited. The Bible says that God makes all things work to our good. That doesn't mean that only good things happen to us, only that God uses the bad things that happen to make us better people or to help others around us. It is the same kind of positive thinking as " there is a silver lining in every cloud " or " it's not how hard you fall, it's how high you bounce. " I know that it has been incredibly helpful for me to look for the ways in which my health problems have taught me things, made me a better person, helped me to understand others better, and more. Our minds don't cause our pain and fatigue, but they can be used to reduce it. I never say, even to myself, " I can't take it anymore " because the fact is that I can take it some more and probably will have to do so. Saying " I can't take it... " just makes me feel worse and more of a victim. I am far from a perky cheer-leader type of person but I do all that I can to see my life in a positive way, to laugh and be cheerful with those around me while not hiding or invalidating my situation. Very few of us would deny that stress adds to our pain and sickness but the fact is that much, if not most, of the stress we feel is a matter of how we perceive the world. Controlling stress starts with managing that perspective. You don't have to agree with me but I strongly believe all of this because it has made a big difference in my life. BTW, I have had chronic pain and illness for over 20 years and have been on disability since 2005. I think I have earned the right to see my health problems my own way without someone else dissing those views. Margie > > > > > > " if you're in pain, feel it, embrace it, God is using it to show you > > > > something. " > > > > > > > > Who would write that and why???? It's mean spirited. We who have pain > need all the support and > caring we can give each other. That was not a nice thing to say and it's > not true. > Pamela > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 The divorce will be financially devastating for me and my girls, but I'm hopeful. I even registered for on line dating. My neighbor met her current husband there. nan  " Nobody move! I dropped me brain! " ________________________________ Just wanted to say, I love your posts and I too am separated from my demanding husband. He still cares, but I think he cares more about having a new life for himself. Hang in there, we deserve better! :-) - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 That was not written by me pamela but by Simon Dean maybe he should comment?? ----- Original Message ----- From: pamelaneckpain@... > it can sometimes seem that the least sympathetic people are those who > should really have the most sympathy. > > > Are you speaking of our doctors and medical people, . Or do you mean our close relatives? Or both? Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 > Do some research because they do have medical mj, the veggie kind and > the > kind that peps u up. > sounds good. it does. aand it's safe. this methadone i take is so unsafe. dea needs some lessons. it would happen if they had pain or someone they love had chronic pain. PaMELa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 Thank you so much. I couldn't say it better myself. This illness has taught me so much about myself; mainly that I haven't been taking good care of myself trying to do too much for others. I love that God has turned this into a positive for me, as I am finally writing about my experience and it is so freeing! Thank you. > > > > I didn't write it but I can tell you that it most certainly is NOT mean spirited. The Bible says that God makes all things work to our good. That doesn't mean that only good things happen to us, only that God uses the bad things that happen to make us better people or to help others around us. It is the same kind of positive thinking as " there is a silver lining in every cloud " or " it's not how hard you fall, it's how high you bounce. " I know that it has been incredibly helpful for me to look for the ways in which my health problems have taught me things, made me a better person, helped me to understand others better, and more. Our minds don't cause our pain and fatigue, but they can be used to reduce it. I never say, even to myself, " I can't take it anymore " because the fact is that I can take it some more and probably will have to do so. Saying " I can't take it... " just makes me feel worse and more of a victim. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 > would that mean that fibromyalgia is psychosomatic? > Â Pamela > It's a confusing diagnosis. It's one of my diagnoses but I don't think I have it. I don't have those pain areas. I have a lot of things wrong with my back and I think in the beginning the doctors just said " fibromyalgia " because that would mean they didn't have to prescribe opiods. It was hell. I do want to say that from what I know about Fibromyalgia that opiods are the only thing to help it. Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2009 Report Share Posted October 9, 2009 Pamela, You take it one day at a time. I have been ill since the 1980's and on disability since June 30, 1995. You do what you have to do and stay away from those that are negative. Hopefully, you will see a cause and treatment soon, at least in your lifetime. Hugs, Michele - Nana to Twins is and , 3 yrs., Zachary, 5 yrs., Ethan, 9 yrs., and Tony, 13 yrs. > -----Original Message----- > From: pamelaneckpain > Sent: Thursday, September 17, 2009 12:07 AM > > I don't believe anybody can understand chronic pain (unless > the person is > in a wheel chair or has > to stay in bed all the time) If you look ok, it's not pain > as far as they > can understand. After 7 years of pain, I understood this. > I'm now going > into year 8. I don't know if I can take much more. > Pamela Quote Link to comment Share on other sites More sharing options...
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