When Support is main STRESSOR?

Discussion in 'Fibromyalgia Main Forum' started by EZBRUZR, Jul 1, 2003.

  1. EZBRUZR

    EZBRUZR New Member

    Any suggestions would be welcome,painful or not. Just over 5 yrs ago I started new wonderful relationship. Just over 4 yrs ago DD stuck. Things have been ok,but they are getting harder as my DD shows more symptoms. I do not want pity,I do not want to be treated like a child,I do not want the times I receive "EXTRA" help to have it thrown back as if I'm Totally Dependant. Education on DD is an obvious opption,if there was any interest! I do not want to feel STUCK because of DD ,I just am tired of being afraid to ask for assitance when needed as it WILL be used against me. I know you can not have everything your way,but I feel I need to be Justified whenever a task is a tad larger than my will.Most of my friends think I over do it as is. How can you teach a 30yr old to respect an illness and avoid contributing to it as much as possible? Ready to Go & No Destination to Arrive at !!! Thanks--EZ
  2. smyle4moi

    smyle4moi New Member

    I know exactly what you are going through....i had fm long before meeting hubby but wasnt dx utnil two years after relationship started...he is supportive on the surface but that is where it ends...as long as it doesnt affect him he is ok...if i need to rest or need extra help he throws a little temper tantrum...boohoo...i always tried treating him the way i wanted him to treat me...subtlety does not always work...i have found that i must directly tell him what i need and i refuse to feel guilty for it...i still dont get the help i need but he knows if he want me to feel well enough to get his laundry done, dinner cooked, kids taken care of, animals taken caree of, and still have some energy for him he had better help....you can only feel guilty if you allow yourself...if he has a problem with your dd, then remember it is his problem! you may want put in a search for "letter to normals", print it out and give it to him....do not expect him to read your mind...always tell him what you need and how you feel and then it is up to him to do whatever with it...then you will have to decide if this is really a loving relationship that you want to pursue...remember that this difficult for him as well and it will be up to both of you if this relationship can withstand the hard times and hard work it takes...it isnt easy, but it never is is it? maybe you could come to an agreement that if you each have problem with the other you must immediately discuss and work to a compromise...give yourselves a time limit to do this and you must both agree after that....thats it....that topic cannot come up again....there will be NO throwing it up later...once its done...its done...and if there is a slip, just gently remind him that that has already been dealt with and you will not discuss it again...you also have to play by these rules though....one thing my hubby and i did that helped to keep the good feelings around during tough times was we got a little mailbox - could be a shoebox even- and we took turns leaving each other "love notes" i started...and then it was his turn, then mine, etc....it only needed be as much as "love ya" thats enough....trust me....you might feel stupid suggesting it...but try it anyway...just get a box, write a note to him, leave it in there and tell him the deal...then see how it goes...ihope some of this helps....and i hope things improve for you...it is much easier with a support at home...Lori
  3. Louisiana

    Louisiana New Member

    Ah, this is a lot more common than you think. My husband, on the surface, is the biggest supporter in the world. However, when I am having tremendous difficulties with my memory - remembering if I said something or not - he repeats everything I say. I've asked so many times for him not to do this as it confuses me more. As long as my symptoms do not effect him, everything is fine. Taking the advice of one of my daughters, I have now decided to "choose my fight". I do NOT let him upset me any longer when it comes to my illness. None of us need extra stress as heaven knows we have enough *G* We are stronger than they believe we are. To say "hang in there" is not simply a cliche. The longer you hang on, the stronger you get. And always remember: You are not alone
  4. suz41

    suz41 New Member

    EZ:

    Do you have a FM or CFS support group available in your area, if so would your "significant other" being willing to attend with you? Maybe if he was in contact with others who have similiar problems as you do he might become more supportive and yes I can certainly understand not wanting pity! Pity only makes any of us feel worse. I think many of us struggle with issues such a guilt and depression. If there is not a support group would he be willing to go with you to your physician and perhaps your doctor could explain how this affects you both physically and psycologically. Last but not least would he be willing to check out this board and see how all of us are trying to cope with DD on a daily basis, that would be education in itself!!! Take care and let us know how you are doing . Hugs. Suzanne
  5. elaine_p

    elaine_p New Member

    I think what I wanted to say has already been said, but I'm too tired to be sure (damn insomnia).

    I was going to suggest him going to a support group meeting with you, if one's available. And if you could agree that he'd help you only when you asked. Tell him you *need* to do some things by yourself. (It's just possible he's trying to keep you from doing too much?) I know it's hard to ask for help, but that's something you/we (I) need to learn to do.

    Another thought is, have you considered counseling? (My last counselor was disabled herself to some extent. She had her work cut out for her trying to make *me* accept some of my limitations.... At her suggestion, I now take the elevator at the library instead of climbing the one set of stairs to the 2nd floor. Okay, I still avoid going up there when I can, but when I have to go I use the elevator. I *did* have a sense of accomplishment when I was able to make it up the stairs--small minds! :) --but now realize the deficits outweighed the benefits. And that's just one example.)

    And it's possible he'd treat you the same way if you were well.... Which would go back to his childhood, etc.

    Hope you hear what you need!
  6. klutzo

    klutzo New Member

    I ran an FMS support group for ten years. Many, many times I saw a complete turnaround when a wife with this problem could get her husband to come to a meeting. It only took one meeting. I would even have husbands come up after the meeting and apologize to me for how they had treated their wives! I used to beg women in the group having trouble getting validation and/or help at home to push, pull or drag the man to just one meeting. When he sees a whole room full of women who just met each other and all have the same strange symptoms, some of them much worse off than his own wife, it will make a huge difference. Unless he is a total a**hole, in which case you'd be better off to kick him to the curb than to let that stress make it impossible for you to get any better. (I do know this is easier said than done).
    Call Fibromyalgia Network at 1-800-853-2929 for a listing of support groups nearest you.
    Best wishes,
    Klutzo
  7. rebecca520

    rebecca520 New Member

    But I think I know how you feel. I don't think I've ever had a remission, and I think it's all due to my husband keeping me in constant flare. Sometimes I honestly wonder if his constant yelling at me isn't going to kill me? (on top of this dd) Sometimes I don't know how much longer I can take it. He keeps threatening to leave me and it used to hurt. Now I think it would almost be a blessing, or atleast a relief. Who knows, I might even get to feeling better? :) I would love to get him to a support group, but there are none around here - I could sure use one too. I have even started going to a shrink just to have someone to talk to so I wouldn't go nuts - ofcourse he won't go to a counsellor. If anyone comes up with any good ideas, I'm all ears.
    Thanks,
    Beck
  8. pam_d

    pam_d New Member

    I'm going to suggest a great book that will definitely help you cope, and if you can get your S.O. to even skim through it occasionally, would help there, too. It's called the "Fibromyalgia Advocate" by Dr. Devin Starlanyl (she's written another well-known fibro manual, but this book---her 2nd---to me, is even more valuable; available at Amazon & bookstores). It's kind of a primer not so much on the disease itself (though there is an excellent section on that) but how to cope day-to-day with the people you interact with on a regular basis, such as spouses, other family members, friends, bosses & co-workers, other doctors who may or may not know about FM. I know there are sections dealing with the issues you are facing.

    My husband bought me this book when I first got fibro. I'm lucky in that he is pretty understanding & supportive because he has diabetes----so he knows what having an illness is like (though I tell him, he doesn't know what it's like to have the "invisible" illness; diabetes is an "acceptable" illness...). I have thumbed thru this book many times during sleepless nights. I think it's only about $20 or so, & well worth it.

    Good luck to you, I think you will get a lot of good feedback from folks here in a similar situation.

    Take care,
    Pam
  9. elaine_p

    elaine_p New Member

    anyone know if there's a book like Pam suggested for CFS?