A Social Network for Men with Fibromyalgia, Chronic Fatigue or Pain
this disease is IMPOSSIBLE...
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Replies to This Discussion
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Permalink Reply by Keith Cohen on -
Joe,
I know this is a difficult situation. Most of my family, including and starting with my ex-wife do not understand me and think I am faking this illness most of the time. You can't convince them especially if they're all self centered. I kill myself and do as much as I can for my kids, but it is never enough. And I know we get sick at some inconvenient times, but they still dont understand. Example: My daughter wants me to go with her and her mom down for college orientation. Well we have to leave at 4a.m. Thats already a problem because of sleep issues. Then I just thru out my lower back and can barely walk and they don't believe me so they are laying guilt trips on me. They don't care or have any mercy or compassion for me because its all about them. So I have to go or I will never hear the end of it. I will spend at least the next day or more recuperating from this trip. No problem for them. So, I hate to say that your wife sounds very unsupportive and if she keeps making those kinds of comments I don;t know what you can do. I have found a new woman who is VERY understanding of my illness and my sons schizophrenic illness which I have to deal with daily because my ex won't get involved. This woman loves me and accepts me for who I am as a person and what I am able to accomplish day to day. You have to have support and understanding or its not gonna work. Thats why my ex asked me to leave 7 years ago after 25 years and 4 kids. She thought I had just become an inconvenience. So it was over. She said she wasn't attracted to me anymore and hadnt slept with me in the last 8 years of our marriage. She slept with the dog. He got more attention than I did. So my friend, Hang in there for awhile and see what happens, but the writing may be on the wall I'm afraid. We all need people who really care and are supportive and our families can be the worst sometimes and it hurts really bad I know. I'll be praying for you man.
God bless,
Keith
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Permalink Reply by Bill Koch on -
I think since your wife doesn't or won't sleep with you than you should be the one the dog sleeps with. It's only fair. She's the one that either won't or can't sleep with you. It's time to be a little selfish.
My dog seems to understand this disease better than my ex-wife. He seems to sense when I'm not feeling well. When I'm not feeling well he seems to understand and he will come and sit down beside me, quietly and when I'm feeling better he will jump all over me and wants to play. He seems to sense how I feel. At least my dog understands me while most humans treat me like I'm just making it up. I've been accussed in the past of faking it just so I can get out of work. She never understood that if I had it my way I'd work anywhere if I could just work. Know if she says anything about my illness I just tell her to "shut up". I give her the same respect she used to give me. None at all
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Permalink Reply by Hans Miniar Jónsson on -
Sometimes the worst part about this illness is that it's "invisible" and a lot of people think that we just need to suck it up, cheer up, and go to bed early.
It can cause us to slip into heavy depression as a response to the overwhelming sensation of insufficiency, or it can cause us to "suck it up" and force ourselves to do far more than we should, eventually leading to a fast and brutal increase in pain and fatigue until getting up to go to the bathroom is a massive undertaking. (As you may guess... I've been there, done that.)The truth is, while she doesn't respect the simple fact that you have a physical problem that you have to take into account she won't treat you fairly.
I would suggest sitting down with her and telling her exactly how you feel, making "I/Me" statements (no blame tossing) and explaining to her both your feelings of pain and fatigue and the emotions involved, making sure you tell her that when she tells you to "be a man" she's not encouraging you to do more, she's telling you that she doesn't see you as a man any more because of this disease, which is something you can not control.And expecting you to simply "decide" not to have fibromyalgia, a chronic pain and fatigue syndrome, is utterly unfair. All you can do is try to treat it, try to get better enough so you "can" go out on hikes with her every now and then "even if" the following week will be hell (something you're willing to face so that you can be with her, emphasis on how she makes that pain worth it) and if that just isn't enough for her then "you" can never be "enough" for her.
It can be brutal to admit that sort of thing to yourself, and to her, but if you don't come out and Say it, then it can drag on for a long time, causing her to simply resent you more and more for being ill and you to resent her more and more for not understanding that you're ill.
Putting the facts, in plain, honest, however brutal terms, on the table, gives you the chance to either see if she's willing to try to respect your limits, or in turn, leave before the animosity gets the upper hand.Parting amicably is better than parting in anger, no?
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Permalink Reply by Bill Koch on
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Throw her under the bus. I to loved my wife when I divorced her. After ten years she has not learned that I didn't do this to myself and I can't control the syptoms. She was constantly complaining that I slept too much, that my pain couldn't be as bad as I claimed. She's a RN so you'd think she see how wrong she is. This disease has a mind of it's own and when it wants to strike (some place, at least once a day) you can't stop it. You just got to ride it out.
I've had cancer twice, shingles, amensia for a year, ITP, and various other major health problems. I find fibromylgia is the worst of them all. It won't kill you it just makes you miserable.
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Permalink Reply by Bill Cohen on -
I have a close married friend with fibromyalgia with almost exactly the same issues. His wife doesn't believe he is sick, but instead accuses him of laziness and dietary problems (!!). He is severely depressed from the fibromyalgia, and this permeates every aspect of his life. He has two young children. I don't think he'd ever leave his wife, but his wife will probably leave him after the children are grown up. I'm sorry you are accused of being less masculine, whatever that means. I'm sorry I can't offer anything more than sympathy.
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Permalink Reply by Keith Cohen on
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Bill,
This is Keith. I replied to Joe from the first reply. I am glad I have some friends on here that can relate. Its very difficult. Especially being a man with this condition. We want to take care of our families but now are limited in what we can do. My oldest 30 yr old son who I was very close to doesn't even get it either. He calls it Fibrowhatever. I'm tired of trying to tell them all this is real. If they don't want to believe me theres nothing I can do. I now am engaged and my fiance fully understands all this. So thats a big help even though my children don't get it and my ex keeps drilling them with telling them that I'm a lazy bum. So, oh well. Thats the way it is. You would think at least your family would understand but its usually not the case. I feel terrible about my condition and not doing what I really want to do. I guess we just have to accept it until maybe someday there will be more answers for this. I wish only the best for everyone on here.
Keith
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Permalink Reply by Bill Cohen on
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Hi, Keith.
I'm sorry about your situation, of course, and know exactly what you are going through.
I am a little bit cautious as to how your fiance would "hold up" over the years in her understanding. My friend also told his wife, before they were married, that he had a chronic pain/fatigue condition.
She was in love with him, and said fine, she understood. Those good intentions did not stand the test of time. I'm not married (I'm gay), but my own mother for 30 years greets me over the phone by asking, "Are you feeling better now?" She's 88, and has more energy than I do. I'm not optimistic about the medical scene, either. The most recent journal articles describe "brain perfusion" in fibromyalgia patients, which means an abnormal rate of blood flow from one part of the brain to another, as determined by brain scans. It is not clear whether this is a cause or effect of the disease. However, it is not a pleasant condition. So it goes.
Bill
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Permalink Reply by Rick J on -
She is not supporting you at all, without support from her and her believing in you, you are in for alot of pain and frustration.Some people just think of themselves , time to let her go, and find somebody that understands and care about you,as much as they care about themselves.
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Permalink Reply by Bill Cohen on
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"Finding somebody that understands and cares about you, as much as they care about themselves"--makes absolute sense, Rick, but in my experience, the only person who could understand someone with fibromyalglia was another person with fibromyalgia. I've never heard of fibromyalgia "couples,' either straight or gay, and am not sure that would work out, either.
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