Need help and/or advice please!

Discussion in 'Fibromyalgia Main Forum' started by timmissyh, Nov 21, 2002.

  1. timmissyh

    timmissyh New Member

    Good day to all! I hope that everyone is doing way better than I am. My husband and I are about to split up because of this DD!!! He can't seem to understand that there is no cure and why I am tired and don't want to do things I use to do or that I can't! He has read very little about this FMS/CFS crap. Does anyone know of a good article(s) that explains it all and how a person feels when they have it. I was thinking if he read something from someone elses suffering besides me that just MAYBE it would hit him, though at this point I doubt it! Closed minded people are impossible to deal with! He acts as though I WANT to be this way and that it is in my head! (Gee, where have I heard that before? Dr's #1, #2, #4....) He knows that I use to be a person who goes and gets the job done, I tackle it straight on...no putting it off. I am a go getter! Not a sit on the sidelines and watch! Anyway....blablabla...I don't want to drag on and on. I would appreciate any help that anyone can send my way.
    Thanks!
    Missy

    [This Message was Edited on 11/22/2002]
  2. timmissyh

    timmissyh New Member

    Good day to all! I hope that everyone is doing way better than I am. My husband and I are about to split up because of this DD!!! He can't seem to understand that there is no cure and why I am tired and don't want to do things I use to do or that I can't! He has read very little about this FMS/CFS crap. Does anyone know of a good article(s) that explains it all and how a person feels when they have it. I was thinking if he read something from someone elses suffering besides me that just MAYBE it would hit him, though at this point I doubt it! Closed minded people are impossible to deal with! He acts as though I WANT to be this way and that it is in my head! (Gee, where have I heard that before? Dr's #1, #2, #4....) He knows that I use to be a person who goes and gets the job done, I tackle it straight on...no putting it off. I am a go getter! Not a sit on the sidelines and watch! Anyway....blablabla...I don't want to drag on and on. I would appreciate any help that anyone can send my way.
    Thanks!
    Missy

    [This Message was Edited on 11/22/2002]
  3. fibolady

    fibolady New Member

    hello missy,

    i am emailing you at your address, i hope you receive it, if not let me know through your post. hope your day is a good one.

    you might not want to leave your address up too long, there have been some problems with unsavory people.

    warm regards, fibolady
    [This Message was Edited on 11/22/2002]
  4. twjen

    twjen New Member

    Dear Missy, We dont ask for this problem and it sneaks up on us and is even harder to deal with if someone close does not get educated. I know just what you mean, I also know that it would be tough being on the other side watching. If your husband wants you to feel the best possible, he needs to educate himself for one, give you acceptance, than roll with it and allow you some peace to do what you can. I find with fibro. that the more stress I have with non acceptance the harder it was to focus elsewhere and feel good about what I can get done, rather than focus on the fibro. and what Im not doing. Tell him to type in fibromyalgia on the net and read about it, especially the ones written by Doctors. Tell him its even hard for us to accept, but we have to and so does he or we will go "nuts" about it. Show him this message. When I got alot better over the summer I thought I was about "cured", I didnt know fibro. flared like ms and other ailments. When symptoms worsend again a few months ago I tried to ignore it, chalk it up to stress,
    meditate, positive thinking, etc. None of that took it away.
    My phyciatrist is the first one to mention fibro. then finally my Dr. of last 8 months. (I have a phyciatrist I see about 3 times a year, due to a tramatic event several years ago-I was stalked and almost killed, but it has nothing to do with fibro.) My phyciatrist doesnt think Im nuts or lazy and neither does my Dr. They HAVE educated themselves and I suggest your husband do the same. He will be happy to see at least see the peace it brings to you and your relationship if he gives you this "gift" and allows you to have the room to do what you can to feel better.
    Sorry so long, but I feel for you, and hope your husband will realize that his attitude is hindering your illness and marriage. God Bless!
    [This Message was Edited on 11/22/2002]
  5. Kar

    Kar New Member

    I'm sorry your husband just doesn't get it. Mine is only slightly starting to. Every time he has a complaint, I make sure I tell him to remember the pain & that I have it all the time. And then of course I have to tell him thank you for understanding the times you can tell he is thinking about saying something but doesn't, when I want to bop him on the head! Grrrrr!
  6. fifty1ford

    fifty1ford New Member

    Greetings,

    My wife has not had a serious illness throughout her entire lifetime. Only a few colds and the flu, but that's about it. She has no clue as to what it's like to feel the way I do, to be in constant pain and contiuous fatigue. There was a time when I passed-out and was lying face down on the floor in our dinning room and she simply stepped over and around me! Some people will never GET IT, and it is up to us to either help them GET IT or GET OUT for our own sanity.

    I have chosen to GET OUT of our almost 30 year marriage. I just cannot live with her any longer. My two kids are 14 and 18, and are old enough to understand and to make most of their own decisions. I will stay close by for them, but I cannot deal with my wife's inability to provide meaningful support. I am "invisible" to her most of the time anyway.

    I am starting the separation next year by travelling to Sedona, AZ to just hang-out and "be" there for a while. It is a little scary, but life is an adventure and I'm going to experience it instead of suffering with someone who just doesn't care.

    Peace,
    fifty1ford
  7. Stormy214

    Stormy214 New Member

    Know exactly how you feel. We aren't allowed to post websites here, but if you do a search using the keyword fibrohugs or letter to normals, it will probably bring you to the site. On it there is a document you can print out entitled...you guessed it...letter to normals. Of all the stuff I've left lying around the house recently, that one seemed to have the greatest impact on friends and family regarding their understanding on how I feel. They usually read and say, "You mean....YOU feel like this? Gee, I never knew!" I hope you find it, and it hope it helps! If you can't, my email is in my bio. Email me, and I'll send the link to you.
    Soft hugs of support,
    Stormy
  8. teach6

    teach6 New Member

    I think it is called "It's not in all in your head." I believe if you go to the CFS homepage you can find it. Otherwise check the library.

    I know exactly what you are going through. This illness, even though it was years for being dx'd, was a big part of the reason my marriage broke up. When I was finally dx'd he still believed I was making it up to get out of doing things. A year later he seems to have accepted that I really am ill. But we've been divorced for five years now. I also know I am much better off without him because he was verbally abusive.

    Barbara
  9. allhart

    allhart New Member

    im so sorry to hear of your troubles i posted this artical before but thought it might help

    Managing Daily Activities with Fibromyalgia
    by Cynthia Webber,
    Those who don't deal with fibromyalgia on a daily basis have a very difficult time understanding why people who have it can't always remember things, get exhausted from doing simple activities, or have pain so severe that all we want to do is try to find a comfortable position so we can just have a few pain free moments.

    A friend of mine wrote these words to me many months ago, and to me they sum up our experiences with an activity that most people just take for granted.

    "I remember I used to 'cook dinner', and it was no big deal. Now I have to 'think' about what I'm going to fix, then I have to 'think' if I really want to thaw something out or just have soup because I hurt so bad. Then maybe I decide I'll fry that chicken, so then I have to go to the freezer, and it's not an upright, so I have to lift the lid, and find something to prop it open. Then, of course, the chicken is on the bottom, so I have to pick everything out of there which is cold and frozen, until I find the chicken. Now that I've found it, I have to put everything else back. Then I take the chicken to the microwave and put it on defrost. Then I suppose that I have to cook potatoes to go with the chicken. Now I have to walk back to the laundry room, get the potatoes, bring them back to the kitchen table, where I sit down for a minute because the pain in my shoulders just won't quit. I've forgotten the knife, so I have to get up, which really hurts. I never want to get back up after I've sat down, but I get the knife, and sit back down and peel the potatoes, which takes a little time because my fingers and hands hurt so bad. Once that part is done, I have to go get a pan, take it to the sink, fill it with water for the potatoes, wash the potatoes, cut them into pieces, and put them in the pan. The pan is very heavy at this point, so I may ask for help carrying it or just go for it, depending on how bad my hands are. I haven't even gotten to the chicken yet or set the table. Most people just do this stuff automatically every night, while the people with fibromyalgia just have to take it one step at a time, and it can be grueling. The same thing happens when I go out for dinner. I never sit in a booth because it hurts so bad trying to get up, so now we always ask for a table. There are just so many adjustments that we have to make just to 'get through' a day."

    Then there's laundry, errands, or light housework which must be done by someone. In my family, I'm the designated someone since I always did these things before developing fibromyalgia. My children do their own laundry, but trying to haul a load of my husband's and my dirty laundry down to the basement from the upstairs is exhausting. If I do it when one of my children is at home, I may get help if I ask, and occasionally one of them will actually offer to carry it for me. Then there is the problem of several family members trying to do laundry at the same time. With each person having their own laundry basket, it should work, but it doesn't all of the time. I find my half dried laundry thrown on top of the dryer since one child needs their clothes dry before work or school. Then there is the issue of the towels. I did tell them that I wouldn't wash their towels anymore since they are too heavy for me to carry, but what I find is the towels in the master bathroom being used by them because they have run out of towels.

    Family conferences are a necessary evil, and they only work when all members are willing to do their part, or when all members are home at the same time in order to sit down and explain the rules over and over again. It is extremely frustrating to be the only member of a family who is living with pain and fatigue, yet is expected to organize a family conference, set the rules, and try to have the energy to follow through with them.

    Before I developed fibromyalgia, these problems weren't as exhausting for me, but now it is too much work to have to continually explain why I can't or shouldn't do something. I'm praised for fixing a nice dinner, yet the dishes are left on the sink for me to do before I go to bed at night. The dusting just isn't done, and even though two of my family members have allergies, they don't make the effort to do it.

    As my friend wrote, just thinking about preparing a meal can be exhausting, but actually doing it can be painful and it becomes a major chore rather than something pleasurable to do.

    Living on disability, only one salary, or having to work in spite of dealing with fibromyalgia can become emotionally and physically exhausting for us. Those who have to work in order to have a roof over their heads, food in the cupboards, or clothes on their backs can mean that there is little energy left over for activities of normal daily living. Those who don't have fibromyalgia can't seem to understand why we aren't more organized, or why we don't just hire a housekeeper, or force our children and spouses to do more chores.

    It is emotionally exhausting to have to continually remind people that we just can't do certain things. Sometimes it is easier to either just not do them, or force ourselves to do the minimum of chores so that our homes don't become overwhelming with dirt or clutter.

    We may be mourning for the lives that we once had, yet since our pain and fatigue is usually invisible to those around us, we don't always receive the understanding which we desperately need. I've been told by many well-meaning friends to get my family to help more, but they aren't living my life for me. It is difficult enough to just get through some days without people placing greater expectations upon me.

    Not only must we change the way in which we live our lives, we must also deal with the losses that we've sustained to our self-esteem. For most of us, we hate to feel like nonproductive members of our families or our communities, but the reality is that we have to stop and think before doing almost anything now. Sometimes the chore seems so overwhelming that it's easier to just do nothing, yet that can lead to depression.

    There is no one simple answer for each of us, and we have to learn to listen to ourselves rather than let others tell us how to live our lives now.



    [This Message was Edited on 11/22/2002]
  10. feelinold

    feelinold New Member

    I'm fighting a similar battle as you are, I don't know how long you have been dealing with your problem, etc. I do know my wife puts up with a lot of strain because of my illness, and she doesn't understand either. Some treatments have made me slightly more functional, which offer me hope that I will be better for my family. If you think your husband is approachable to talk about it, most vows are for better or worse... You need support while your doctors persue options to help you manage your illness. Your spouse should respect that and be patient, and you should assure him that everything you are doing is in the interest of getting better even though there is no permanent cure. Like my doctor said, there's no magic bullet, but many options to try out. Don't give up hope. God Bless.
  11. northwoodssue

    northwoodssue New Member

    Timmissyh: Don't give up hope. I got the book from Dr. Mark Pelligrino for husbands, wives, called "The Fibromyalgis Supporter". He explained exactly what we are going through and ideas to help us through this. My husband found it extremely helpful, and he is definitely not a book reader!!! Men like to fix or solve whatever problems they encounter. We like to think about it, talk about it, etc. It's all part of what makes us different. If they can't fix it they get frustrated. This book has suggestions for them to actively help us. My husband got so good at reading my "signs", that he could tell me when I was in a flare and he would do what the book suggested to help. In other words, he takes an active part in my fms. He's so good at it now that he can tell by my voice or my eyes how much pain I'm in. Dr Pelligrino has fibro himself and knows what obstacles we encounter. Hope this is helpful. He has other excellent books for fms as well. Good Luck.
    northwoods sue