anyone feel this way

Discussion in 'Fibromyalgia Main Forum' started by bikrgrl, Aug 18, 2008.

  1. bikrgrl

    bikrgrl New Member

    I have been "sick" for at least 7 years. I have been diagnosed with fibro for the last 2 years.
    within in the last 2 years i have gotten MUCH worse. I do work outside the house but that whipes me out.
    My problem is this, family, friends, my hubby, stepson, they all their "demands" on me. They are calling me up constantly "come and visit us, you never visit" hubby is always wanting to go, go, go non stop. I'll go on these trips everyone is having fun, i'm screaming inside from the pain, i hate every minute of it.
    he wants to take his son away this weekend, i know if i object he'll say i'm being selfish.
    Everyone is making plans for me to go to Daytona next year for the "bike week" are they nuts? i keep telling them, i can't do it, i just can't. No one will listen, they say that i'll "make it".
    I don't get help with anything, i go for groceries, housework, cooking, etc. etc. no one helps me. that's why the house is always a mess. i can't do it!
    If i have to have this diseae then i want the right to be sick when i am sick.
    How do i make them understand that their demands are making me worse?
  2. Malcolm82

    Malcolm82 New Member

    Tell them to imagine themselves going at full speed for 3 or 4 days and nights without any breaks or sleep, having the flu at the same time, and having pain constantly the whole time. This is how you feel all day almost every day.

    Ask them how they would be able to deal with it. You would like to do all these things very much, and miss not doing them, but the plain truth is you are not physically able to, and trying to only makes you worse.

    It might help to tell your family you have something important you would like to discuss with them all together at once, and tell them the above. That way they might actually listen to you instead of joking it off.

    We here all know how frustrating it is. You tell people and they just don't get it unless they are the extremely empathetic type, or have one of these DDs themselves.

    If you could get at least your husband to sit down and actually read some of these posts and see how many other people led busy hectic lives before they were felled by these things, maybe he would get a better clue.

    The other thing you can tell them is that these DDs are very much like cancer in that they don't discriminate and can strike about anybody at anytime, and its only by the grace of God they haven't been struck themselves.

    Maybe I'm going on a rant, but I get very frustrated when people look at me like I'm just lazy or nuts.

    Hang in there!
  3. bikrgrl

    bikrgrl New Member

    you're right that's exactly what i need to do.
    I really do not know how to stand up for myself and have always been a "people pleaser" to a fault. That's gotta change.
    [This Message was Edited on 08/18/2008]
  4. shan1078

    shan1078 New Member

    I feel like I'm reading my own problems on your post. My life has been this way for about 5 years now. However, it is getting a little better now. I started making my hubby go with me recently to my Dr. appts, so he could hear for himself that I was sick, and that it is a very real problem. I think he understands alot more now that he went to the pain clinic with me.... once I got him to understand, he made everyone else understand as well. I still put myself out for other people though.

    I think if you can first start with your hubby, the others may follow suit. See if you can get him to go with you to some of your most important dr. appts. I would just keep telling these people, especially your parents and your In-laws, how sick you are. They will all be older in age, and maybe more able to sympathize with you. I still hear that I'm being "selfish" but it bothers me less and less. Maybe if you try to make yourself ignore how bad these comments hurt, he'll stop saying them. If he's anything like my hubby, that might help. Saying things like that is just their way of manipulating you to do what they want. If you can get that to stop, he eventually won't waste his breath.

    I hope this helps. I think that we all have these problems, but we definately are NOT AT FAULT. Don't let people make you feel guilty for being ill!
    Take care,
    HUGS, Shan
    [This Message was Edited on 08/18/2008]
  5. colorfulcolorado

    colorfulcolorado New Member

    We would go riding and finally I had to put my foot down! My husband wasn't sure how to explain to our friends that I couldn't ride for hours at a time so I sat down with them and told them what I had and that we had to pull over every half hour or so. They did. But as time went by I can no longer ride and neither can my husband-he came down with his own disease and is disabled now. So, we are thinking of getting a trike, so we can have some fun and maybe stay alittle comfortable. But we will see, that we'll worry about next summer. We really so miss the good old days thou, we still go on some runs, its just in our truck and really when you think about it who cares, you have to think of yourself and the pain you are in. Do let your husband read some of the suffering that goes on here. I think he will understand-it might take awhile for all of it to absorb, hell I'm still learning and I've had this for 3 years. You need to rest and he married you for better or worse and in sickness and in health! Take care!And sorry to say it does get worse. That's one thing my doctor didn't tell me and when I confronted her about it she said she didn't tell me to make me feel hopeless. As far as the house- I moved in May and I'm still not all way unpacked! I never used to be like that. Just do what you can and forget the rest, tomorrow is another day. Put a plan on paper about housework and everyone a job! They have to start helping you out!!!
  6. bikrgrl

    bikrgrl New Member

    You know what i'm giving up. What i think he's afraid of letting go of.
    once something like that becomes part of your life, it's hard to let go.
    A lot of friends, a lot of memories, a lot of experiences.
    I try to continue with things the way they were but my body is no longer giving me the choice.
    Went for a ride yesterday, just for hour. Paid for it all night, paying for it today.
    Is it really worth it anymore?? you have to wonder.
    Honestly, i think if i convince him that i'm no longer the old "me", things will change drastically between us.
    I'm not sure he can "let go".
  7. scarletstang

    scarletstang New Member

    It is hard to say "no" and then it gets a little easier. Then you learn, well, the world didn't fall apart because I said no. Everything changes and maybe getting your husband and family a little more involved or educated in fibromyalgia. Tell them you need help! Let them go without a meal, send someone else shopping. It won't kill them. By the way, I own my own bike, can't really ride it anymore, but I don't know if I can get rid of my baby. sniff, sniff
  8. colorfulcolorado

    colorfulcolorado New Member

    Every single time I see a bike all I want to do is ride! The good times we had every weekend, they brought us closer together it seemed, but all that aside you have to let it go and start new adventures. I KNOW its hard, but if your husband loves you he'll understand. Maybe he can keep his bike and go out with the guys every now and then. But first and foremost he has to realize you are in great pain and does he really want you to suffer? Maybe you both should try our idea and get a trike. With a nice soft seat. As he gets older I'm positive his health will change too, yours just happened to change before his. I agree with the other posts, he needs to go to your doctor appts and let the doc explain whats going on with you. Leave stuff laying around the house-especially in the bathroom so he can read about this. By the way, how long have you been married? This is a heck of a hand we've been dealt and now its our turn to see if we fold or ante up!
  9. bikrgrl

    bikrgrl New Member

    letting go. it's been 7 years since this all started for me and i'm still in "morning" i'm not sure i'll ever accecpt it.