Trying NOT to be hurt and confused

Discussion in 'Fibromyalgia Main Forum' started by Malcolm82, Oct 12, 2009.

  1. Malcolm82

    Malcolm82 New Member

    Since I got diagnosed with CFIDS going on 2 years ago, I have tried to keep everything that happens in perspective and not to get too upset or stressed about anything. I have been handling things pretty well, considering, even though my condition hasn't changed much.

    I've basically gotten used to dealing with it, and my wife is generally very supportive.

    She is disabled as well with two failed back surgeries and we are each others support system. But there is one thing I can't understand. She never seems to be very interested in any article I show her about CFS, even though I rarely show many to her, because most of the time there isn't much encouraging news about it.

    A friend of ours a few days ago emailed us an article about the recent study that is in the news about XMRV. It was right after the news broke, and the article seemed to be more focused on the fact that XMRV is found in prostate cancer tissues than anything to do with CFIDS.

    I did more searching on the internet and found a much better article on the study, which focused on its true significance to CFIDS. Naturally, I was excited about it, and I thought my wife would be too, so I sent her an email link to it, since we have separate computers, and told her I had sent it to her, and that it was much more clear about the significance to CFIDS, and that XMRV may end up being the cause, which could lead to a cure.

    This was last Friday night, and even though she has been on her computer several times since then and read her email, she hasn't read the article yet.

    I've casually asked her a few times if she has read it, and I just asked her about an hour ago before she left to go shopping, and she nearly blew up at me and said she is going to read it, and to quit asking!

    I'm not sure if this is a big deal or not, but it is starting to bother me a little. Whenever something comes out that has to do with a possible solution to her back problem, I'm all over it. I would think, as my wife, if there was news on any possible progress on CFIDS, she would at least be interested.

    She has said to me in the past that no matter what my doctor or I say, that she doesn't think I'll ever get over it. Maybe she isn't reading the stuff because she doesn't think it will make any difference anyway. I just thought I would run this by you guys and see what you thought.

    Sitting here typing this, I'm having all I can do to hold back the tears, and it has been a very long time since that has happened. Thanks for your help.
    [This Message was Edited on 10/12/2009]
  2. jasminetee

    jasminetee Member

    I understand how you feel. I'd be very hurt too. Your wife sounds like she is in a lot of pain herself and we know that can make us feel easily overwhelmed and crabby. How about waiting until a time when the 2 of you can read about it together on one computer? You might even read it aloud to her if you have the energy.

    My guess is that she's figuring this is going to fall through like all the other findings have for us. The difference this time is that the WPI seems determined to not let that happen. :)

    I also suggest being honest about your feelings with your wife when she's not busy. I hope she comes around and supports you.


    [This Message was Edited on 10/12/2009]
  3. MsE

    MsE New Member

    Is it possible that she has accepted the status quo and is simply protecting herself from a major letdown? Also I think someone else suggested that possibly her own back pain is making it difficult for her to be sympathetic.

    Am I excusing your wife's refusal to read the material you have suggested? No, of course not. But I have tried to get members of my family to read mateial I've forwarded to them to no avail. On the whole, my kids are understanding of my situation, but most of them have not been willing to read about CFS. Or, if they have, they haven't let me know. So I quit sending them articles.

    Then, one day not too long ago, one of them told ME about something she had read on the subject! Go figure!
  4. onset1990

    onset1990 Member

    This is the first item I have sent him he has actually read. I don't send my grown girls articles because they know what CFS is from seeing it first hand. I did send them this article but it inspired fear in them I had to talk to them about.

    I know how hard it is not to have your spouse as your first responder in this illness. I know how much you'd like them to know as much as you do and be in control of your care at times when you are not able to think.

    Here is my theory after all these years. I think they are frightened. That's why they don't read it. They don't want to know all the scary implications and they certainly don't want to see their wife, husband, mother or father as weakened and vulnerable. (If I were talking about my ex-husband though, I'd have to say he was too narcissistic to care about anyone but himself but I'm talking about normal people).

    I think if you look at it that way it may help. That doesn't mean you shouldn't chat with your wife about your need to have her be knowledgeable enough to let you have a rest. It is hard to be patient, doctor and nurse to yourself all at the same time. And that's what many of us are forced to do since our doctors are often flying blind on this one.

    Good luck and know you aren't alone in this situation with your family.

    p.s. to Malcolm and others on the board, could you would please add some line breaks in your large paragraphs? It would be much easier for my scrambled brain to read. A large, solid paragraph of text is harder for me to follow along. :)
  5. Malcolm82

    Malcolm82 New Member

    I've read what you all have said, and I think you are right in that she thinks it probably won't amount to anything so what's the point of all the fuss and getting her hopes up, even a little bit. God knows she has had quite a bit of disappointment in her life. I think she's just trying to protect herself.

    Since most of what you hear and read in the news is only so much crap anyway, why should this be any different? I think that is probably her mind set, and trying to look at it from that point of view, I guess I understand.

    The only place where the rubber meets the road anyway is in my doctor's office (luckily I have an excellent doctor who completely understands what is understandable about CFIDS), and if I actually get better. I think I should leave it at that, unless she brings it up.

    My wife is a very results oriented person, "if it isn't going to fix it, I don't really care", where I am a more of a research minded trouble shooter, "if there is a possibility here that it will work, I want to know the details". I think I knew this all along, but my emotions were getting in the way. Thanks for putting it in perspective for me.

    I have to admit, since about 6 months after I got diagnosed, I haven't been on this board much. I thought I had everything figured out about living with this, but I need a little kick in the right direction every now and then.

    [This Message was Edited on 10/12/2009]
  6. onset1990

    onset1990 Member

    and I love those new line breaks... Thank you so much!

    (you are lucky to have a good Dr. I do too, but I don't see him often enough. It'll drive me crazy waiting to talk to him about XMRV.)
  7. Malcolm82

    Malcolm82 New Member

    My next appointment with my doctor is in December. She is generally up on the latest info on CFIDS, so I am also anxious to see what she has to say.

    Sorry about the lack of page breaks from before, I wasn't thinking too clearly. I'm sure you can identify.
  8. FibroFay

    FibroFay New Member

    I hurt so much for you. My ex never showed any interest in anything I showed him to read about my illness. That was excrutiatingly painful!

    I don't know how to help you. It sounds like your wife reacts more like a victim, just accepting that you and she are defeated. And you are more the survivor type, always seeking information and hope for a better future. It could be just that you see things differently.

    Please know that you can come here for the support you crave. We are all in your shoes, getting excited over the possibility that there is hope for us to get better. We are together in our desire to get well. "Talk" to us all you want. We are here for you.

    I hope the Mrs. will come to see the possibility for improvement and will catch the excitement. She has a lot on her. Maybe she feels burned out.

    My very best to you both!

  9. onset1990

    onset1990 Member

    It takes me several tries to correct all the typos and punctuation mistakes on my comments. I am the worst typist in the world. But I do thank you for going to the trouble of breaking things down into smaller bites.