Im new and need advice

Discussion in 'Fibromyalgia Main Forum' started by maleficent4310, Nov 7, 2002.

  1. maleficent4310

    maleficent4310 New Member

    I am n new comer. I was looking for a little support. I figure what better place than a group of people with the same problems I have. I was diagnosed with fibro about 6 months ago, but had been trying to find out what was wrong with me for 4 years. I am a 27 year old mother of 1 (unless you count my husband as a child too). My biggest problem right now is I dont feel like my husband is very suppotive. It is easier for him to pretend like nothing is wrong. I am not sure how much more of that I can take. I am in pain most of the day, I am losing my hair (which he thinks I am over reacting), I am trying to work, keep my house, and raise my 5 year old son. I feel like I am going to break into pieces. Any advise would be helpful. Thank you for any and all support.
  2. maleficent4310

    maleficent4310 New Member

    I am n new comer. I was looking for a little support. I figure what better place than a group of people with the same problems I have. I was diagnosed with fibro about 6 months ago, but had been trying to find out what was wrong with me for 4 years. I am a 27 year old mother of 1 (unless you count my husband as a child too). My biggest problem right now is I dont feel like my husband is very suppotive. It is easier for him to pretend like nothing is wrong. I am not sure how much more of that I can take. I am in pain most of the day, I am losing my hair (which he thinks I am over reacting), I am trying to work, keep my house, and raise my 5 year old son. I feel like I am going to break into pieces. Any advise would be helpful. Thank you for any and all support.
  3. pam_d

    pam_d New Member

    You have a lot to deal with with a young child & working, plus FM pain & fatigue, and the lack of support on your husband's part isn't helping. I think it's hard for those who see us daily to realize how tough it is, to know the pain we fight every day---most of us LOOK fine to the outside world, I think we aren't given the respect, empathy or support someone on crutches or in a wheelchair would be given, by either strangers or those who know us well. I do think it's hard for spouses; you have changed from the person he married, in his eyes. And I think some spouses want badly to help us, but they don't have a clue how & end up doing or saying the wrong thing. My husband is supportive, but often his way is to clown around, as though he can "joke" me out of pain & fatigue, like you could "joke" someone out of a bad mood! Many times this does NOT help, then he feels miffed or hurt that I'm not appreciating his efforts.

    Do you have other friends or family for support? Is there an FM of CFS support group in town? As you know, this board is great & you will always find good listeners & good advice here, so come any time. Will your husband look at handouts on FM that would help educate him? One other idea-- Dr. Devin Starlanyl's book called the Fibromyalgia Advocate is excellent. This is a different book than her Survival Guide (also great). The Fibro Advocate specifically talks about how to deal with everyone you come into contact with about your illness--your boss, your spouse, your family, your dentist, every type of doctor, therapist, legal community, etc. It will have a lot of good ideas for you.

    Good luck to you, I hope it gets easier & let us know how you're doing.

    Gentle Hugs,
    Pam
  4. Shirl

    Shirl New Member

    Hi, glad to have you join us. As for your husband, I think most of us go through this with spouses untill they finally pass the 'denial' stage. We go though this ourselves.

    My husband used to try and 'trick' me into doing things, just to prove I could get my 'mind' off of the pain, real or imagined. But he finally realized through my reading to him, and showing him where the pain was, reading from to him from the board here how others are suffering as much or more than I was (he won't read this board himself, as he says he is not a member, and considers that invasion of others privacy!).

    Now he is my biggest supporter. He will do anything to make my life easier, but it was a long haul to get to this point. I have had Fibro for 20 plus years.

    As for my children (all grown and on their own), they were always compassionate, as I raised them fighting this illness.

    My daughter, as she got older she begin to think that I was just tired of committments, as I was a super Mom, Church worker (spent at least 30 hours a week at church), had a ChildCare Center for 10 years, raised three children and had my grandson till he was five, plus my husband, etc.

    She just felt that I 'used' the pain, headaches, IBS, sinus attacks, etc. as an excuse not to go to different functions etc anymore.
    But after a couple of years, she now realizes that I am truly ill, and that I just can't make long
    term committments, or stay at a function like normals would. In fact, I take my life one day at a time.

    Now she is also a big supporter, and will see that I have all the things I need at hand, instead of having to go get things at the last minute when I am at times, unable to do so.

    But its hard for healthy people to understand, they don't feel the pain, and most of us don't look sick! So how can they know?

    Just be patient with him, he has a load to carry too, anyone who lives with us day in and day out are under a heavy burden too.

    Try to put yourself in his place, thats how I realized that living with a FM/CFS person is no picnic either, it works both ways.

    They can't stop our pain or feel it. That is frustrating, I remember when my children would get sick, I would wish I was sick instead of them, but of course I could not change that either, I think men are the weaker sex when it comes to helplessness! We women have more strength to deal with certain things then they do.

    Again, welcome to the board, and I do so hope your husband understands your illness better soon.

    Shalom, Shirl



  5. maleficent4310

    maleficent4310 New Member

    I apprciate you all for the advice. I know you all know how lost I feel. I have given my husband things to read. He reads them, but he wont talk about it. Anytime I bring it up, he changes the subject. I myself have come to grips with the fibro. I have lots of family that supports me, but they live so far away. My husband gets transfered alot, so I have trouble making new friends. Everytime I make a friend, we move. I keep telling myself it will get better.
    I am hoping for the best, but preparing for the worst. That is all I can do right now I guess. Thank you all again. God Bless
  6. Joannie

    Joannie New Member

    to the board. I know how you feel and it is flusterating and some days you feel you will go out of your mind from your Hubby not paying attention to the things we feel are so very important and need just someone to talk to about your problems. I go through it too all the time. I feel that with my Hubby he would rather ignore what I have to say or would rather change the subject. I believe a man feels that if they don't have to talk about it then it is not happening. With "MEN" it states that they are in a completely different thinking process then a woman. Women are more opt to discussing their problems and trying to work through them. Men are made to feel that they are the fix all type. They want to correct the problems to make them go away. And it drives them nuts until they can fix it. BUT when they can't they tend to want to just push it out of the way and go on believeing that it does not not exist. It is flusterating to a man to not be able to help. And I think that they have a very hard time understanding and excepting what we go through. If they don't have to hear it then they don't have to deal with it. And by not dealing with it then it really is not happening.
    I have a loving husband but I truly don't have much advice because mine can't except it either. All I can say is I am here and will help in any way you need to help you cope with this. You aren't alone and I know what you are going through. Although I know you feel you are alone. My advice is just keep telling him how you feel and confront him when he wants to try to deny it is happening. It helps to talk about it even if it feels like you are talking to a brick wall.
    Good luck and welcome to the board.
    Joannie
  7. joyof3

    joyof3 New Member

    I am 26 years old have three kids, my daughter is 8 my to sons are 6,and 18 months. I have a boyfriend that will not except that there is something wrong with me. I also was DX in the summer of 2002. sometimes I want to just scream please understand, and just love me for who i am. In side i am still the same person.


    stephanie

    P.S if you would like you could e-mail me at fordmac@kootenaycable.com
  8. LindaGa

    LindaGa New Member

    I'm also new and looking at everything I can about fms this board is the best I have found TY for it.My hubby will not talk about it,but he has been with me 36 years and has always helped me when I was down and that was alot we do believe now that I've had ths dd for all these years,after a bad accident that took our first daughter almost 4 months old from us,and I was hurt really bad and ended up in the hospital. My daughter who is 31 was the one who told me about fms (she found out about it from a friend)so the day I found out what was wrong she was excited we found out what was wrong, as I spent 3 times in mental hospitals because of pain,and now we think it was fms and all along the pain was ignored and everyone thought I was crazy! My problem now is she told me people are saying it is a "cop out" dianoses and she want even ask how I am(I think this came from her mother-in-law,who thinks she is a dr) I told my daughter people who say that need to learn about it more and not through old infomation.But to say the least it is hurting me bad and strssing me out.My hubby and son 28 who still lives at home want to tell her off my son said hes going to tell her not to call if she cant say anything nice to me.I dont want my family fighting over this dd fms.Sorry this may have gotten off the path but it sure helped me to put it in writting instad of crying TY LindaGa
  9. karen2002

    karen2002 New Member

    I think it's so important to involve the significant other in this process. I know this is a hard sell to some. Men like to be the great fix alls of family, and since these problems are usually not "fixable", it sometimes leads to avoidance. For the majority, though, they like to hold that place of dominance, to be needed and relied upon.
    From the beginning, I enlisted my husband's help. I told him I was relying on him to help me, as I was too exhausted, and in too much pain, to fight this alone. I needed his strength. He has been with me every step of the way, from those early appointments filled with skeptisism, and dismissal from the medical community; to my dx, and through the ups and downs of ongoing treatment. He is involved 100%, and it really relieves me of the stresses. Sure there were days, when it was a financial hardship, for him to drive me half way across the state to my current physician. It is so very much worth it, for the sake of support, and also because, he helps me remember those things that the physician has discussed, that my short term memory misfiled.
    I know there is a tendency, in most of us, (out of habit), we have always been the care-givers and the backbone of our families, to want to be independent, and fight the good fight alone. We want to knuckle under and have the attitude I will just take care of it myself. I have 4 children, and at one time was able to completely run the household, plus our businesses. I cannot tell you the relief I have found, since the onset of this, to enlist the support, care, and strength of my helpmate. It is a complete reversal of our old selves however, and I think we must make the verbal plea, and explain our weakness, enlisting their help. It doesn't happen all at once, but certainly is the very best support we can ever ask for. Sometimes I feel myself being resentful, but it is usually when I feel my worst. I look around me at all the things he is doing in my place, and all the stressors he is buffering for me, and I am truly appreciative. I made a very good decision those 30 years ago, and am truly blessed.
    Karen
  10. tedebear

    tedebear New Member

    is I believe they desperately want us back the way we were before the syndrome. Mine always uses the term "you used to do this, you used to do that." Well, I just can't do this or that again the same way, and in some cases not at all.
    It'll get better someday. It has to.
    Welcome and soft hugs.
  11. maleficent4310

    maleficent4310 New Member

    Thank you for your input. Trust me I know how it is when people even Dr. make you feel like you must be nuts. It took me four years and like 15 Dr. before I was dianosed. I was told everything from take some IB to you just need a B12 injection every month for the rest of your life before I found a Dr. that would really listen to me. I just could not be having such pain and be so tired at my age you know. Im only 24-27 years old. I am lucky that my son is so young though. He is a very understanding child. If mommy is tired let her rest. We can always read or play a little later. Now I just need to teach that one to my beloved. I love him so much. I know he loves me too, but it is easier to whine to me about how thing were 9 years ago when I would rub his shoulders, feet and head every night then to sit down and talk about the reason I can't do those kinds of things for him all the time anymore. I wish you luck with your daughter. She doesn't need to disrespect her mother just because she dosen't like the way things are now. If her mother-in-law is putting these things in her head, maybe someone shjould talk to her about how she would feel if the roles were in reverse. God Bless!