familiy just doesnt get it

Discussion in 'Fibromyalgia Main Forum' started by saffie02, Sep 21, 2002.

  1. saffie02

    saffie02 New Member

    i dont even know where to start.this morning. my husband gives me one of those mind over matter speeches. he really believes that i can think my way out of this disease.i also am totally numb from the hip down in my left leg from hypothyroidism that was not diagnosed.i still work because we really do need the money and because i dont want our children to go without.i acnt get them to understand that life is difdficult but i am hanging in there the best i can.my house keeping is not what it used to be .that upsets my husband.sometimes i am so tired i just dont get things done.does THESE THING MAKE ME the awful person ,wife and mother that thhey make me feel like?
    PLEASE I NEED SOME INSIGHT SHERRI
  2. saffie02

    saffie02 New Member

    i dont even know where to start.this morning. my husband gives me one of those mind over matter speeches. he really believes that i can think my way out of this disease.i also am totally numb from the hip down in my left leg from hypothyroidism that was not diagnosed.i still work because we really do need the money and because i dont want our children to go without.i acnt get them to understand that life is difdficult but i am hanging in there the best i can.my house keeping is not what it used to be .that upsets my husband.sometimes i am so tired i just dont get things done.does THESE THING MAKE ME the awful person ,wife and mother that thhey make me feel like?
    PLEASE I NEED SOME INSIGHT SHERRI
  3. TracyV

    TracyV New Member

    Not keeping your house not as clean doesn't make you an awful person. I doubt I can offer any insight, but just wanted to let you know your not alone. It sounds like your husband knows very little if anything about FM/CFS. He problily hasn't experanced any kind of chronic pain himself. Unfornatly my husband has chronic pain, so he is understanding about my pain. But there is things he doesn't understand like PMS hormonal problems, miagraines, CFS. I find it's up to me to educate him, I talk to him about it, I leave things for him to read in the bathroom (make sure you take all other reading material out) I don't think he'll ever totaly get it, but it helps. I don't know how old your children are, but my daughter is 2 and half so she doesn't understand, but I tell her when I hurt and tired. I hope in time she will understand. If I was you I would talk to my children and see just how much they understand about this disease.
    I hope you feel better soon,
    Hugs,
    Tracy
  4. LuvMeCritters

    LuvMeCritters New Member

    Is order the free phamplet from this site. It's the first post on the top of the list by WebMaster. You can order up to 99 copies! And they're free. Explains a lot and your husband, or anyone else, will finally see where you're coming from.

    Good Luck,

    Regina
  5. montana

    montana New Member

    No matter what you say, your family will never get it. How do you explain pain from the inside out, or you feel like you are exploding and imploding at the same time. There are not words to explain your pain, fear, and depression over loosing "you".
  6. vloga

    vloga New Member

    No saffie, your family is the last one to 'get it'. Mine haven't after 13 years. It's made me stronger as a person, much more selfish (be positive, I'm being individualistic, not selfish !) and much more self-reliant just at the times when I most need help.

    Give yourself 3 little cheers and hugs for being so brave.

    The best thing is to ask others for help, and to ask someone both you and the family trust to hammer the basic message into your family's skulls. You are ILL and you need to give time to yourself to try and deal with your illness and heal.

    I live alone and can give myself all the time I need when I'm not working, so I don't have the added pressures of others telling me to perform at home.

    You need your doctor to tell your husband just where to get off and what help you need, and you need to think about setting boundaries. What can you do, what are you willing to do, what can't you do, and what can you get others to do if you see a need but can't fill it yourself ?

    What can you get the kids to do ? Having chores may be a pain but it does teach them that they have to work for a living, which is no bad lesson to learn when you're young.

    Remember, if you have to give up work, the only things your kids will miss are material ones. Surely the events of 9/11
    have taught all of us that material things are unimportant and irrelevant ? If you are ill, are the kids going to miss out on your love ? Of course not. When they're grown up, are they going to remember missing out on things ? No.

    There's a phrase, no one dying regretted the amount of work they didn't achieve, and for me it applies to housework too !

    Best of luck

    Vloga
  7. mariac2000

    mariac2000 New Member

    You are a wonderful and strong person for trying to do as much as you do. It is so hard to get others to understand. Maybe you can share some liturature on FM with your family, or take your husband to your next Dr's appt. It is brave and honerable of you to want to provide for you kids, but you also must think of yourself when you are sick and what is best for you. Getting others to understand is hard but not impossible, although I doubt if anyone but those of us who suffer really understand what it is like. I find the people on this board to be extremely helpful with suggestions. Good luck!
  8. TeresaBnGA

    TeresaBnGA New Member

    he needs to get a grip himself and get off his lazy butt and help you!! If he is bothered by something that is not as clean as "he" thinks it should be, then he needs to get to work and clean the dang thing!
    You are not a bad person, wife, or mother, YOU ARE SICK!! Don't let him run over you like that girl, take up for yourself!

    Soft hugs!
    Teresa :)

    PS---next time he gets sick or hurt or something tell him to think his way out of it!!! LOL[This Message was Edited on 09/22/2002]
  9. toniad

    toniad New Member

    we've probably all been accused of (fog here.....grrrrrr) faking or exaggerating our symptoms at one time or another. the best thing I did to explain it was to order those pamphlets, as someone else suggested, and another good suggestion that was mentioned earlier was to invite them to your next doc visit, so the doctor can tell whomever it is that disbelieves the severity of the disease, how serious and disabling these condition/s can be. That helped me a lot in my last relationship. He kept telling me I take too many pills, but the doctor explained to him, it is a REAL illness, and its serious!

    Only one person I know without FMS/chronic pain confided to me one night he woke up in severe pain, he couldn't get it to stop, he cried, he whaled, he screamed, he couldn't walk, his leg/back burned like fire, he said tonia, i finally understand what you go thru, and I'm sorry I never really believed you. I wasn't happy he hurt, but I was overjoyed that someone else in the world validated me.

    I really don't think they'll ever know. This is part of the major frustration of dealing with FMS. There is NO POSSIBLE WAY we can fully explain how bad it feels to hurt constantly and feel weak everyday. How does a cancer patient explain the physiology of their disease? They don't know anymore about what exactly is going on in them than we do. They just know they hurt and its real bad, just like us.

    You are brave! You are strong! You are LIVING with it! Surround yourself with people you can depend on, if you can! Friends or family that help or church, anyone that you can count on is a big plus when you deal with this. I have a select few people I can call and say hey, I need help here, I'm flaring and I have to cook my daughter's supper, can you help? And, thank God, I do have a few people who do help us.

    This is also one of those "take this one day at a time" things. I so HATE that statement...lol. I take it more like a minute at a time, or even smaller increments...lol. I woke up today with another flare, I can't walk too well, I'm holding on to walls and look drunk, so I know today is a day I am nice to myself and don't beat myself up too much. I can't afford it. The world does that enough for me. So today, I will take it easy and rest as much as possible, and get to catch up on tv I missed this week!

    Good luck in finding ways to combat people who disbelieve. This is a tough part, as most of us here know. When you need to talk about it, or vent or cry, we're here for you!

    Well wishes!
    Tonia D.
  10. kredca4

    kredca4 New Member

    I had talked myself till I was Blue in the face and in a Blue mood. No one understood me, including me. After I got a dx I went in search of what FMS was and how to treat it. What a surprise I got.

    ANyway along the way I found some websites that had Printable letter's for Family and Friends, I copied them, and left them where others could find them. No fanfare, just left them beside the reading table, in the bathroom, and in the kitchen. They will read it, they might not say they did, or even have a better understanding of You and your Syndromes. I did find that by reading the Letters, I got some answer's also.

    Now I don't worry or feel guilty, I do the best I can, and I try not to make others understand what they don't really want to understand.

    One thing about my Hubby, I figured out why he couldn't grasp what I had. It's cause he likes to Fix things, and this is something he can't. But he does Try now, and that's important to me. I won't fight with him or anywone about these dd's, all it does is make me sick, I sometimes actually foam at the mouth during an argument, ;o)
    So no more, I just walk away and try to get my mind on something else so that it dosen"t eat at me, like a dog with a bone that just keeps nawing at it.

    Everything takes time, the more you learn about the Syndromes you have the better you can cope with them and in turn maybe the Family will understand also.
    You can not Make someone feel the way you want them to.
    It's the hardest thing to do, to try and change someone else. It's ME that has to change, because I have changed, but I'm still a Person who has a life, and I plan on using it. Even the small things in life are better because I look at them differently.

    Well I'm getting longwinded algain.
    Heres the websites to thoes Letters hope you can use them.

    Sincerely,
    kredca4/sharon

    http://www.tidalweb.com/fms/letter.shtml

    http://www.fibrofriends.webga.com/to_friends_and_family.htm

    http://www.sover.net/devstar/relative.htm

    the above is my favorite one. lot of info at that site.

    http://www.geocities.com/fmsmesyndrome/factsheet
  11. caring

    caring New Member

    and I'm 60 and had this most of my life.


    For years I had lots of headaches but continued to function as a wife, mother, employee, friend and nobody got my headaches either least of all my husband until one day he got them literally, then he totally understood. I don't wish this on anyone least of all any of my family but they don't get it till they got it.

    The best solution for me is to educate myself so I can accept and deal with this and it's an on going process for me. In educating myself it seems those around me get some of the education also. The more I know the more I can accept what I can't fix and fix what I can.

    Grief is part of the dd and we all sooner or later have to go through it to be as heathly as we can be. Some like myself go through it when it's the last resort and so that's how I've spent alot of my summer. Grief for what I've lost as the old me but I certainly am coming out the other end a better person and the new me has alot of good points she didn't even know she had.

    Rambling is one of the old carried over to the new. :)

    Take care and educate yourself, the library here is excellent give it a shot.

    Blessings to you
    pat
  12. saffie02

    saffie02 New Member

    thank you all for your support.you are a wonderful group of people i have a dr.s appoinment monday.i couldnt walk this weekend because the damage in my leg is worseand rhat upset the whole barrel of monkeys. hubbie and i had a l;ong talk and he did help do the leftover work thanks you guys are great
    sherri