Why Can't My Husband Understand?

Discussion in 'Fibromyalgia Main Forum' started by pam112361, May 1, 2006.

  1. pam112361

    pam112361 New Member

    Hi! I've replied before but never posted on my own. I suppose it's more of a vent than an actual post and I apologize for the length.

    I suppose I should start off my saying that I love my husband very much but there are times when I actually wish I could just go my own way. He works so hard, not only as a self-employed company owner, but does the majority of the work around the outside of our home and the inside painting, etc. My daughter is finishing her first year of college, so her help around the house has become limited but she does what she can. She truly understands what I can and cannot do.

    I typically get up around 4:30am to get ready for work. I drive 40 miles, work 7:15-4:00 and drive back home. By then, I am completed exhausted and in pain (even though I have medicated as directed by my PCP and Rheumy). I very seldom cook except on weekends. I don't feel like going outside and doing "stuff" around the house. I love mowing the lawn (he's got a great Kubota tractor that he won't give up), but I don't want to get down on my knees and pull weeds and walk around picking up sticks because I know what the next day will be like. I simply want to relax for a couple of hours before going to bed.

    The problem is the things that my husband says. (1) If I would get up and quit watching that idiot box and do something I wouldn't be hurt so much. (2) You don't know what you can do because you never try it. (3) I saw something on TV and you need to lose weight on a high protein diet. (4) You'd let me die working before you'd come out and help.

    Number 4 was just yesterday. We had a large maple tree blow down. He went out late in the afternoon to begin cutting it up and dragging it off with the tractor. It was raining and cold. My daughter went out to help and they came back in for a few minutes to warm up and that's when he said what he did. When they went back out, I put on my jacket and shoes and was going out to help when the chain saw ran out of gas and they quit for the day. When he starts working on it again, I'm going to help. Pray for me, because I'm gonna need it.

    I wish I could make him understand that after so many years of dealing with this, I know my limitations. You would think that after being married for 23 years, he'd know them also. I also know that losing weight would help but that is something that has been a constant struggle for me my entire life. It's not something that he has to remind me of.

    I'm sorry that this post is so long. I'm just so incredibly frustrated and depressed, that I have actually started looking for apartments closer to my work that I can afford on my own. My daughter may be transferring to a different college in the next year or so and maybe she and I can share the apartment. It will be different from our house, but I can't imagine it being as stressful.

    I should also mention that my husband is suppose to take Lexapro for depression. I've known he needed something for a long time and he finally started taking it when his mother died 2 1/2 years ago. He's no longer taking it and I know that's part of his problem. But what do you do?

    Thanks for listening and I apologize again for the long post.

    Pam

  2. mrpain

    mrpain New Member

    I too, have been married for 23 years... My wife is supportive but doesn't have a clue why I am like I am. I do the best I can to explain my situation, and to bring her information when I can. Timing is the key of knowing when to communicate to her. I try to pick a time I know that she is in a good mood and is a willing listener.

    Also, she can tell by the look on my tired face that something is wrong even though she doesn't understand it. Also I have to put myself in her position, as well as others. How can they understand this disease, when I don't even fully understand it; and I'm living with it every minute of every day.. The doctors don't even get it! I will pray for your situation and hope things will get better for you and for us all............
  3. Cromwell

    Cromwell New Member

    you for being able to get up and drive to work. Wow what an achievement in itself. I could not do that for sure, no matter how ell I was feeling.

    You will just have to let your DH get on with his self imposed workload on himself and if needed, get a letter from your doctor explaining why you cannot be doing weeding and are tired. Jeepers, I would never be able to even get home if I drove then worked all day. No way.

    Pat yourself on the back for how much you are doing.

    My DH and I both have to pace ourselves as he is head injured. So we work together and agree to quit as soon as one of us needs to, which can be anything from 15mins to three hours depending on the day and the work.

    You know your own body. Some "worker bees" are always on at others to compete with them. They just need loudly expressed thanks. Try just writing a loving card expressing your thanks for all he does, it may help him.

    Love Anne C
  4. ldbgcoleman

    ldbgcoleman New Member

    I know how difficult it is when those around us just don't understand. In all honesty I think it is impossibloe for friends and familly to know what we are going through. My close friend lost her husband and father of her 4 daughters. He had ALS. It was horrible and my heart goes out to her but I really don't know what she is going through. Does that make sense??

    Beacause you are working and your daughter is no longer ther to help can you afford to get house cleaning help every other week? Can you cook a littel extra on the weekends to help carry you through the week, So it's easier to throw dinner together?

    I felt so guilty like I wasn't doing my job when I was at my worst You are doing so well to keep working and do the commute! Try not to feel guilty. Try not to let it get to you. Just do what you can.

    My husband has been much more understanding since he went to the Dr with me. Can you print off some of the articles here for him to read?? How about letting him read the message board here??

    Take Care! Lynn
  5. pam112361

    pam112361 New Member

    mrpain, yyznan, and Anne C: I truly appreciate each of your responses. It actually felt good to hear from others with this DD and truly realize there are others out there in my shoes, so to speak. I have a friend who also has fibro, but my husband just thinks that I'm talking bad about him if I go visit her. Can you say paranoid?

    I know my husband gets tired of hearing me say I'm hurting, I'm tired, etc. but how else do you describe the way you really feel? He thinks I should stop taking the meds just to see what happens. Maybe I don't really need them. This should answer the question about why he stopped his meds, but believe me, I know he needs them!

    As far as working everyday, I actually enjoy my job. I work for the director of the adult ED at Vanderbilt in Nashville plus 12 other attendings, etc. It's a great job with great benefits. I carry our only health insurance and my daughter receives 70% college tuition reimbursement. I would be nuts to leave. I was able to set my hours myself and it works out best for me even if it does take me forever to get ready in the morning. The drive is tough because my arms hurt so badly. There are times that not even my muscle relaxers will stop my hands from drawing into claws. But I do what I have to do. Unfortunately, it doesn't feel like enough.

    My husband, on the other hand, usually sleeps until 7:00 (give or take a half hour), goes to get breakfast, starts work around 9:00, takes lunch about 12:00, and then stops work about 4:00. He then will continue to do whatever needs to be done outside.

    I will not say that he's not a hard worker because he is. But to me, a lot of his outside work is piddling. He, of course, would dispute that. Some of the things he does requires lifting or pulling and I am limited to no more than ten pounds of weight per the doctor.

    At times, he is totally understanding of what I'm going through, but then he turns around and I know he feels like I'm just lazy. Part of this may be him not taking his medicine. Either way, it's making me very unhappy with him and more unhappy with myself because I can't carry the load that he feels I should.

    Pam
  6. pam112361

    pam112361 New Member

    Thanks for your response. Yes, I've thought about hiring a cleaner, if only once a month, but my husband doesn't really think that it's necessary. If I worried as much about the outside of the house as the inside, it would make it easier on him. He does woodwork from a home-based shop and obviously never looks at the floor. My daughter lives at home (in her own little wing of the house which she takes care of) but walks around with a Swiffer constantly. We also have a 100 lb. house dog. It didn't start out that way but he got hurt and now thinks he is suppose to be inside all of the time. He sheds with every step he takes so Swiffers are a God-send.

    As far as cooking, I do try to cook enough on weekends to last a few days. The problem is, I'm usually not hungry when I get home at night, so I don't eat the leftovers and he gets frustrated with having to eat them more than once and proceeds to tell me not to cook if he's the only one going to eat them, then fusses when there's nothing to eat. My daughter is usually in her own little world studying so it's diet drinks and turkey sandwiches for her. Not totally healthy, but what's a mom to do with an 18 year old? So I'm left with do I cook or not?

    I'm beginning to wonder if maybe I should start taking his Lexapro and then I really wouldn't care what he has to say about anything? LOL

    Pam
  7. KMD90603

    KMD90603 New Member

    The problem is, I don't think anyone can really understand this disease unless they have it. They can sympathize with us and listen to us vent and provide a shoulder to cry on and try to be understanding about the fact that we cannot do everything we'd like to be able to do. But, when push comes to shove, it's impossible for your husband to truly understand it. My husband tries to do what he can to help me out, but he has his days when he gets frustrated. Just like we get frustrated with the disease, I think our loved ones do too. They have to mourn the loss of us just as much as we mourn the loss of our old selves. So they go through alot of the emotional stuff that we do, just from another perspective.

    I hope this makes sense. I'm in a fog right now..CFIDS has gotten the best of me the last few weeks and I have a hard time really expressing what it is I want to say.

    I'm sorry that you're going through such a difficult time right now. I'm sure, if you've been with him for 23 years, you've tried the whole sitting down and talking with him thing. But, it never hurts to try again. Or, maybe the two of you could go to counseling together. Sometimes it helps to have a neutral person there who can help you both make sense of what's going on.

    I hope this helps. Gentle healing hugs to you.

    Kim
  8. tngirl

    tngirl New Member

    If you can afford it getting help with cleaning or other chores is such a relief.

    I work full time and like a lot of you, I have pain full time too! I'm usually exhausted by the time I get home from work.

    I have a housecleaner once a week. The house looks better an I don't feel guilty or hurt worse because I'm over doing it!

    I rarely cook. I do all the laundry. My husband and son usually do all the yard work. My husband is pretty understanding most of the time. I don't think my son understands but he is accepting of my limitations.
  9. mme_curie68

    mme_curie68 New Member

    Your husband is a big boy. If he is not comfortable pulling an equal share of the load (notice I say equal) - many marriages allege equality between the partners, and yet women frequently pull the lion's share of duties.

    I am very grateful that my husband, although the baby of his family, was raised to be a responsible individual who believes in a partnership. Even though the partnership has been heavily weighted to his side because I am the one more frequently "in sickness" than in health.

    He is depressed yet he refuses to take medication to help correct the imbalance, and he refuses to accept your condition for what it is.

    It sounds like he is looking for his Mommy to come back into his life and take care of him. Well, you're somebody's Mommy, but you sure ain't his.

    Taking care of yourself means being free of the codependency of a toxic relationship. Why live with someone who makes you miserable and won't do anything to help himself? That's just going to make you sicker from emotional stress, feeling guilty and like a failure no matter what you do or what your achievements are.

    You need to set an example for your daughter that even though you're sick with a physical disease, you're still strong enough to say, "Enough, no more" to a person who is hurting you.

    I would suggest you separate for a while and see how you feel. I wouldn't be surprised if you feel better than you do now. Life is TOO short.

    Hugs,
    Madame Curie

  10. mahx

    mahx New Member

    Hon, just reading what you do..exhausted me.

    Give yourself a huge break...you deserve it.

    As for your husband...get him a copy of the "spoon theory".

    Type it in above...you should be able to find it. It has helped my husband understand a little better.

    Good luck...God Bless

    MA
  11. pam112361

    pam112361 New Member

    It's so nice to know that there are people who actually understand. There are times when my husband does his best to understand my situation, but then he gets overwhelmed with his work and it's like everything that goes wrong is my fault because I don't help him enough.

    Remember the tree that fell that I mentioned in the earlier post? Well, it wouldn't have fallen if he had some help in topping it. The tree was as tall as the light lines and had about six inches of good wood holding it at the bottom; the rest was rotted. I don't think topping it would have made a difference with the winds we were having the day it fell.

    As for helping him in his business. He builds fireplace mantels. My daughter can help him and she is really great at putting a mantel together after he has all of the pieces cut out. She can go at it with a nail gun. He wants to know why I can't do the same thing. I can't seem to make him understand that holding a pen to write a message at work makes my hand claw up (I send most of my messages by email because typing doesn't bother me quite as bad). I can't imagine trying to use a nail gun. The first time I accidentally shot him with it would probably be the last time he'd want me around. LOL

    I also have to go back to my Rheumy because at my last PCP visit I requested another ANA/Sed Rate workup because I'm having additional trouble with my joints. My ANA was up and my Sed Rate was on the high side of normal. My PCP doesn't feel like there's anything additional going on but wants me to have it checked out. So, that's just one more thing to have to worry about. And, of course, I'm putting off going because I would just as soon not know.

    Sorry, I'm rambling. I just feel like I've got so much built up inside and even though I have a couple of friends I can really talk to, only one of them has FM so she's the only one who can really understand. She also knows my husband so she's not exactly neutral on the subject of our relationship.

    Don't get me wrong. I love him; I just don't always like him. That makes it really hard for me because I tend to clam up and not talk because I can't say what I really want to say. I try to keep a higher standard because our daughter is in the house and I feel like I have a duty to her to not stoop to his level. This makes him sound like a terrible person, which he's not. He just tends to shoot from the hip without thinking through what he's saying. I, on the other hand, think about it too much which is why I end up not saying anything.

    Anyway, thanks for listening and for your encouragement. I feel blessed.

    Pam
  12. Zzzsharn

    Zzzsharn New Member

    I think a heart to heart is in order for you and DH.

    Nothing will be fixed otherwise.. You will continue to work yourself like a dog and still feel guilty for not meeting his expectations. And he will continue to critize. It's really a lose-lose situation.

    I think... for what it's worth, you should just set him down and say listen.. I need help inside the house, you need help outside the house, it's not fair for either of us to just keep getting angry about it.. we need to fix it, these issues are not worth 20 some years of marriage, because I have an illness that neither of us understand.

    If that means hiring outside help once a month for BOTH of you, someone for inside and someone for outside- then so be it.

    I think that once the major issues are addressed, you can more easily talk about what to do about dinners-whether it's finding convient 1 serve meals to pop into the microwave, or agreeing that you will cook on certain days and he will cook on the other, or you'll order out.. or leave him something in the fridge.. there are many, many options..

    Keep reminding him that it is YOU that is trapped in a body that doesn't work- and accepting that is hard enough, but that not having his support sometimes makes you feel even worse. I'm sure that isn't his intention, but most men are a little thick headed and they need it laid out for them.. there is no reading between the lines..

    I do wish you the best, as I can truly feel your frustration.. I hope that you are able to communicate with each other.

    Be well...
    Zzz
  13. Geechie

    Geechie New Member

    how very jealous I am of your job!! I am a self-employed artist and you can imagine how much THAT brings in! Only I do usually sell what I paint, it makes a mess in the house. I don't have a studio since we moved. And your job has health ins and tuition for your daughter! How wonderful of you to push yourself to drive there every day. It can't be easy. Your family owes you big time for this effort.

    As far as husbands, mine is taking Lexapro, too. Once he ran out and didn't refill it because he had to refill a bunch of mine. I didn't know it until he got so snarky. When he was back on it he's ok.

    I think other people get their nose out of joint because they feel they aren't getting their share of attention. There may be something to this! I try to give Mike all the attention I can, praise what he does around here, all that and it seems to help. But he's pretty understanding. Maybe it's the Lexapro! Please try to get yours to take it.
  14. gamecockfan04

    gamecockfan04 New Member

    From a Husband of a Fibro sufferer:

    I found myself not accepting and truly believing the pain she has been in the past 6 years and we drifted far apart and almost came to divorce. I recently accepted the disease and did some research for myself, and understand now how wrong and much more I hurt her, by things I would say as well. Its still hard to accept the fact that my wife can work 8:30-5:00 including some nights and weekends from home and then just crash in the bed because she's in so much pain. I get frustrated at times because I feel neglected due to the fact that she can put the effort in to her full time stressful job and then she has nothing left for me and our kids and to me I feel that she's choosing her "good time" on her job rather than with her family. I try not to feel that way, but yes at times it can bother me and Im sure thats what your husband experiences sometimes as well. The words "thank you for everything you do" are so reassuring and make me feel so good when she tells me that, and that she appreciates what I do. Also I dont know how long you've had Fibro, but look at it like this, he's stayed beside you through this illness, however long you've had it and you have been married for 23 years, so dont rush out on him and give up on your marriage, because it is a tough disease for your spouse as well as you. Just help him understand the illness and make him feel appreciated as much as possible.
    [This Message was Edited on 05/03/2006]
  15. Momeroo

    Momeroo New Member


    Your husband ought to keep his negative opinions to himself honey, you don't deserve his abusive treatment!

    Love, Momeroo - in pain....
  16. janieb

    janieb New Member

    I've had fibro for about 15 years or long before they were able to diagnose it. They called it depression, as with so many others.

    Don't know what my advice is worth, but here goes.

    We've been married for 44 years and raised numerous children, kept my mother when she had alzheimers, and did for my father in a nursing home when he had alzheimers. We also tried to take care of his parents and other family members. He knows I'm not lazy!! All that time I had a cleaning lady. Like you, I worked for an educational institution and the pay and benefits were fantastic; I was unable to quit. What I did do was negotiate an early retirement clause so they would pay our health insurance until I reached medicare age. They also pay me a stipend each year. In addition, my boss (the Superintendent) did understand that I was in pain lots of the time and I did have evening meetings and conferences to attend. I did what I had to do to survive. It sounds like you're doing that.

    Some of my first visits to the doctors, I took my husband along. He would ask questions like "she thinks the TV too loud makes her feel worst. Is that possible?" The neuro's response was "anything that she thinks makes her worse, makes her worse." Whenever I find information that might help him, I print it and give it to him. LIke your husband, he takes Lexpro, because he comes with all his own illnesses and problems.

    My husband does LOTS of the cooking and always checks with me to see what I can handle when something comes up. We've eliminated a lot of our entertaining because he knows I can't handle it.

    After all those years of marriage, I'm sugesting you take him to the doctor with you, give him materials to read, and try to get him back on his meds. All that for what it's worth.

    janieb
  17. Granniluvsu

    Granniluvsu Well-Known Member

    Pam,

    Believe me, I do understand. I have been dealing with CFS/ FM and CMP for at least 20 years and JUST got dxed yesterday. At least now my husband can see that I am not making some of this stuff up. He tries to be supportive ( sort of) but he really does not understand. He is an only child and when I say I hurt someplace he says he hurts too somewhere another.. Now I am waiting to see if there is any difference in how he reacts to me and the whole situation. It is very hard for them as we do not look very sick.

    I think it is probably a good idea for you to bring your husband to the dr. visits. If not give him lots of stuff to read as someone else suggested. I am going to give him something to read when I finds an appropriate thing for him that is not to involved but to the point.

    Believe me, I know how hard it is and sometimes my DH gets upset when I don't want to go out and help weed or do housework. He is a real neatnick . He is not a lazy person at all and likes everything in its place ( the way he was brought up.). That is a good thing but can also drive me crazy too, esp when I feel like ----. He also has to put up with my short temper at times and I keep trying to tell him that it is because I feel bad but I know that he gets upset too and am not to sure how much he really does understand.

    Just hang in ther hon, you are NOT alone. BTW, we have been married for 44 years, have 5 kids and 8 grandkids. . Keep the faith and try to be patient. I pray for it every day, for DH and for myself.

    Blessings and soft hugs,

    Marilyn (that granni)
  18. UnicornK

    UnicornK New Member

    "Fibromyalgia for Dummies". (There's probably one for CFS too.) It has a chapter for families and friends of PWCFS/FM. I recommend this book. I've read it and it helped me understand my DDs. It's written so we can understand the terms, and is very down to earth.

    Good luck!

    God Bless.
  19. pam112361

    pam112361 New Member

    Hi everyone! I really appreciate all of the responses and advice. I guess this has just been a really rough week and as much as I would like to knock my husband up side his head, I guess I'll just wait until I have the patience to sit him down and talk with him again.

    I tend to not talk when I'm aggravated with him so my mission is to stay calm enough to talk to him this weekend. I'm basically going to tell him that whether he believes in fibro or not, he has to accept my limitations. He also has to change his mood swings by taking his meds again because I can't and won't tolerate his put-downs anymore. He has to understand that the more he acts the way he does, the further away he pushes me in every aspect of our relationship.

    I would really like him to go to the doctor with me but his whole concept of fibro is that it is just something the doctors put a name to because they don't know what's wrong. And then there's the medication. He thinks I'm an addict. I take what my doctor's have prescribed and that's it. I'm afraid that taking him to my doctor would just backfire because my DH knows EVERYTHING. I would hate to lose my Rheumy because of him. We share a PCP and the doctor knows how he can be so I think he can basically overlook him.

    Unicorn: We were in a bookstore one time and I saw the Fibro for Dummies and showed it to him and told him it was written especially for him. He grinned but I'm not sure he really thought it was that funny. LOL

    My husband does work so hard. Between his business, the yardwork, and whatever other miscellaneous projects he decides to do, he is always on the go. I just can't do it anymore. I wish I could. I give him kudos because he can go at it forever, but if I say I can't because I'm hurting, well, of course, he's hurting too but it has to be done.

    I tried to explain to him the other day that my fibro was similar to the pseudo-gout that he has in his foot. Basically, pseudo-gout is a term given for pain that appears to be gout but where no uric acid crystals have been found. He finally asked his doctor to PLEASE just treat him for gout to see if it worked. It did. Therefore, I told him that the next time his gout acted up to not take his medicine and let's just see how happy a camper he is! I just don't think he'd hold out very long. And, unfortunately, he's the lucky one because a day or two on his medicine usually does the job for him until the next time.

    I apologize for the length and rambling of this post. I just wanted to say thanks and apparently get some other things off my chest.

    Best wishes to you all and thanks again for your advice.

    Pam
  20. Granniluvsu

    Granniluvsu Well-Known Member

    Hi Janie,

    Just had to send you a note in your reply to Pam. The first couple of sentences in your post sounds like me when I got EBV about 20 plus years ago. I was an RN who chose to stay home to do home child care which turned out to be pretty good all things considered. DH and I had 5 children and his father was also living with us and was there during his Alzheimers also. That is when I was dxed with EBV. I have been miserable with pain ever since. Lots of other things were going on at that time too. Have gotten very little help since then !!

    Glad to meet you and drop a line if you would like. We are now retired and have 8 grandkids and we are bother still fairly busy ( I think it helps me to forget all the pain bad stuff) !!

    Blessings and soft hugs,

    Marilyn