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    Old 06-12-2005, 12:26 PM   #1
    peppergirl52
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    Ever feel like you are letting everyone down??

    Once again, my husband has gone off to church without me. I have a vital role there, too. I am a musician. And it isn't just there. It's so many places that he has to go without me. And so many places that he refuses to go because he knows I can't or I'll be in too much pain.

    I tell him it's ok, that I understand if he wants to go, I want him to go, and not let this thing keep HIM from having a good time and a decent life. But he says he doesn't feel right leaving me alone, in pain. He feels guilty. He told the psychologist we were seeing as a couple that he feels like he left home one day and came back to a totally different wife!

    I know we can't change this, but God knows, if I could, I would, if for no other reason, for HIM! He does NOT deserve to have this effect him like this! We have been married for 35 years now. I feel like the most selfish person in the world-like it's 'all about ME'. How do we change this? What can we do to help them through this???

     
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    Old 06-12-2005, 01:22 PM   #2
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    Re: Ever feel like you are letting everyone down??

    Yes, it is easy to get to this point. However, we can make up our minds that we are going to hurt regardless of where we are, so, might as well get up and go with our husbands to many things (not all, most) and hurt. We will hurt at home and will hurt other places, it is life for some of us. It is amazing how much less pain you feel while involved with other things while away from home. I have been doing this for 50 years.

    Remember, few people understand what we go thru, afterall, we look just fine on the outside to them!! At least we will look good to others inspite of how we feel on the inside.

     
    Old 06-12-2005, 03:37 PM   #3
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    Re: That might be true if I only had one thing to deal with

    And I'm not down playing what you are saying by any means. But I have had 3 spinal surgeries-2 fusions, and am in need of another one. So, sitting, standing, lifting, bending, reaching, pushing, pulling, anything mechanical, whatever, causes more than the usual amount of pain. THAT plays on the fibro. When my spine gets jossled around, THAT plays on the fibro. When the fibro gets going (stress, emotional upsets, etc) THAT plays on the spine. It is a viscious, never ending circle for me at times. It gets out of control and takes a very long time to get back into control. So, my husband knows this very delicate balance we are dealing with and doesn't want to upset it, because he knows it means trips to the doctor, changes in medications, spending money we don't have, a surgery we can't afford. I could go on, but I don't want to sound like I'm worse off than anyone or everyone else here. I just needed to really get some things out here. I've spent most of the day trying to catch up on sleep that I couldn't get last night and I guess that's not a good time to try to convey how I'm feeling. I really have tried to go places no matter how I felt-the fibro is one thing to deal with. I mean, I took my husband out to a movie Friday night with my back screaming and those stupid fibro bumps pulling at my muscles. But I was determined! The lady next to me probably thought I had hemorroids the way I was tossing and turning in the seat! LOL. But I was determined I was going to let him have some fun!! And he did, and he didn't hear me once say I was hurting!! AND, he just called his cousing and RSVP'd to the birthday party, so we WILL go, inspite hell and high water! As long as I can walk, we WILL GO! He says we will rent a comfortable car and stay in a hotel if we need to. I won't tell him how guilty I feel........

     
    Old 06-13-2005, 02:13 AM   #4
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    Re: Ever feel like you are letting everyone down??

    I will get straight to the point. Stop feeling guilty. That sounds so very simple and I have to remind myself from time to time. Guilt, for me, leads to depression and my confidence falls through the floor. I have accepted that for the moment this is my life and I cannot change it. I have fibro and this restricts my life. I still fight it and like you I force myself to go to events and suffer through them. I believe that as long as I am doing this I am still alive. I have discussed the whole subject with my wife and now I know that she takes me to events when I am able to go because she loves me and not out of duty. We leave many events early because of my pain, and I dont feel guilty anymore. I do feel regret for her having to miss friends, a party or a concert, but I no longer feel guilt. One thing to ask yourself and my wife did ask me this. If it was your partner who had an illness how would you act. I had only one answer, I would do everything I could to help and make her life better. If you are honest with yourself you would probably give the same answer. It hten becomes easier to accept the restrictions we are forcing on our loved ones.
    I hope this makes some sense to you. It took me a long time to compartmentalise the guilt.
    Brend.

     
    Old 06-13-2005, 05:45 AM   #5
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    Re: Ever feel like you are letting everyone down??

    That's very true, Bren. I will try to remember that, and hopefully just adjusting my thinking will help with the everyday decisions we both have to make! It's so hard when you are clouded by PAIN all the time!! Thanks.

     
    Old 06-13-2005, 11:21 AM   #6
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    Re: Ever feel like you are letting everyone down??

    Guilt is something that will eat you up and send you into such a spin that your body reacts and the pain is worse.

    I have a husband who was diagnosed with SLE Lupus in November. For years I have had FIbro and other things. I have been on disablity since 2000.

    I watch my beautiful husband go to work everyday knowing that he is in pain and have never heard one complaint from him. For me, he is an everyday reminder of what we can do when we HAVE to or WANT to. He works for a non-profit organization, a club for boys and girls so there are a lot of funtions to go to in order to raise money. I do not make all of them but I try to attend the important ones.

    I have found that thinking of my husband before myself helps me to deal with my pain in a different way. I try to apply this towards my everyday living with everyone I know or meet. Sometimes it is incredibly hard and I can't do it. Oh well, there is another time and other adventures that will come up. Try not to feel guilty about things that just are not under your control.

    I know it is hard to go through life when we are riddled with pain, there is no arguing that for me. The pain fog does make it difficult and that is ok. I believe we have to address our pain and realize we have the power. When it gets really bad I try to imagine a white light entering my body and helping me get through my day. It works for me. I do know there are times that nothing helps.

    I guess what I am saying is that we cannot be to hard on ourselves and have to learn to listen to our bodies. We have to be kind to ourselves.

    Hope this makes sense! May everyyone have a painfree and/or painless day as possible.

    Peace and love, Janet

     
    Old 06-13-2005, 03:04 PM   #7
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    Re: Ever feel like you are letting everyone down??

    Yes i constantly have feelings of guilt about letting everyone down...my kids, the school, my family and even my dr. First and foremost we must remember that our bodies are letting US down! the ultimate betrayal! And also we must remember that pain is a basic instinctual survival mechanism designed to warn us that something is wrong with us...something possibly life threatening. This is a very difficult basic instinct to overcome and "power" through...every fiber in our being is telling us to stop what we are doing RIGHT NOW. So we must remember not to be so hard on ourselves for being paralyzed by fear and exhaustion and pain...and not let others' perception of us as not having a 'REAL' disease creep in during moments of doubt. Warmly, Lee

     
    Old 06-13-2005, 03:40 PM   #8
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    Re: Ever feel like you are letting everyone down??

    greetings,
    well said brend! the only person i let down by allowing myself to feel guilty is me. it affects everyone around me and it makes me "think" i am less than i am. so no, i do not feel i am letting anyone down if i have to say no. if i do something out of guilt i will feel worse and then everyone pays for that. no one wins where guilt is concerned.
    love is love. promises are meant to be kept. in sickness and in health, remember?
    give yourself a hug. and a break. you are loved and you and your spouse will find your way. just the fact that you are seeing a therapist together is a very big deal.
    even healthy people say no sometimes. we all have that right. sometimes you can go do the thing you want to do and the price on your body later will be worth it. you will know when to say yes and when to respect your body and say no.
    i love the comment about hemoroids. i do that too. ants in my pants syndrome. i used to wonder if i was bothering anyone when i would squirm. now i figure they will say something and then i can say "i'm sorry" and keep squirming.
    you are braver than i am. no way would i sit in a movie theater. the bathroom is too far away, giggle.
    often we must allow others to gift us with compassion. it is a good feeling for them and wonderful for us. receive what you give. compassion and love. you are a joy to love, with or without fibromyalgia or any other life altering illness. do not lose your sense of self to these illnesses.
    peace,
    bluelakelady

     
    Old 06-13-2005, 07:20 PM   #9
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    Re: Ever feel like you are letting everyone down??

    very well said bluelakelady, as always . Yes i still feel guilty, its hard not to when you miss events that you would have loved to have attended but at that time your body said no. You are correct, sometimes not to let people down, we say yes and go, but our body pays dearly for it later. We must learn to listen to our bodies and treat them with love and respect. If i cant go somewhere i tell hubby to go ahead and have a great time and that i will be home waiting to hear ALL about it when he gets home.

    Sometimes yes, even in pain you could go because youre going to hurt there as well as at home but thats not the problem. The problem is that youre pushing your body to do something it cannot at that moment. Or sometimes the pain is bad enough and i might think i can still tolerate the pain and go, but that is not what stops me, its the extreme fatigue. The type that you cant even hold a brush to your hair and get dressed and most of all, the energy you need to carry on a conversation with people, mingle ya know? So even if you can still take the pain and can push yourself, the fatigue might be too much and you'll end up paying for it. So listen to your body. Im learning that this is me, its a part of me, but i can learn to live , and learn to say yes and no and stick to it. Because in the end, my body is the one who will suffer for it.
    Like you said BLL, even healthy people say no at times. My thing is if a person with MS, or lupus can say no to events (and its understood by people easily) so can we. We need to educate people about fibromyalgia. They know about MS and lupus but not many know or understand fibro. I still love to go out and do my best when i can, but when i cant, i just dont. I had to cancel a trip this last weekend to go spend some time with my son in austin, but as the day got closer , i knew i wasnt going to be able to. My pharmacy and docs office were playing phone/fax tag with the refills, and i didnt get them on time, (5 days) , so i ended up with a flareup. Had to tell son what happened, and even tho i felt bad, he understood.

     
    Old 06-13-2005, 08:25 PM   #10
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    Re: Ever feel like you are letting everyone down??

    Thank you jenetti for your post...my 2 beautiful, understanding children have had to put up with a lot of disappointments on days when i just cannot 'go and do'. My heart breaks for them, but they are so forgiving and loving about it. Thank God he chose to bless me with them...if not for them, some days i would not get out of bed at all.
    Warmly,
    Lee

     
    Old 06-14-2005, 06:12 AM   #11
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    Re: Ever feel like you are letting everyone down??

    Is it me, or are a lot of members women here?

    Just asking quickly, this is first thread I have commented on. And I have encountered (a good bit in the past), that some think this is a woman's condition, probably because too many men are blinded by our well known stupid male pride to say much.

    On feeling like you are letting people down, actually, I have only really felt crushing dispirited moods from feeling like I have let me down.

    I don't feel responsible for having this condition, certainly didn't pick it off of any list eh. But I had so many plans, and lost so much of my dreams. Just watched myself slowly die during the 90s.

    People look at us, see no visible ailment. No they don't perceive us as "letting them down" they think the words, faker, lazy, deadbeat, but none of them feel let down. Only those really close to you, the ones that really care, care enough about you, that they will actually know the real you and won't feel that way.

    Recovery (whatever you might achieve) often comes from our conquering our own feelings of being let down by ourselves.

    Today, I might go out in my shop (I putter around on small scale woodworking tasks). I know well in advance it won't be free. 1 hour in the shop is 2 hours of pain later.
    No escape. I do it knowingly. It's the price tag involved. I will have that glow from knowing I was able to do something useful, and I enjoy that knowledge even why dealing with the pain.

    I often walk to the mall, a 30 minute walk, knowing in advance by the time I return, I will be a wreck. There is more "reminder" involved with my action than any need to accomplish anything from having walked there. I find, after a few days of inactivity, I often fall prey to thinking "hey there's nothing wrong with me". The walk always does a splendid job of informing me why I am not at work today. Even after about 15 years, it is still not easy seeing myself as having something wrong with me.

    It's no wonder no one else can see it.

    When you make peace with your own feelings of letting your self down, you are well on your way to not having any issues regarding whether you are letting anyone else down.

    Last edited by Grognard Les; 06-14-2005 at 06:17 AM.

     
    Old 06-14-2005, 06:32 AM   #12
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    Re: Ever feel like you are letting everyone down??

    hi les,
    we have a few wonderful men here. brend is the first to pop in my head. fellas? you out there today? have fun in your shop les.
    peace,
    bluelakelady

     
    Old 06-14-2005, 08:38 AM   #13
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    Re: Ever feel like you are letting everyone down??

    I am constantly feeling like I'm letting everyone down, including myself. I try and use all the logic, philosophy, faith, etc. in the world to make myself feel better. It sometimes gives me a brief reprieve, but the harsh reality is that I will probably never be able to do some of things I used to, and many more I can only do on a limited basis. I am a single mom with 3 wonderful children and this is just NOT what I wanted for them. They've been and will always remain my life. I'm always trying to "compensate" for the things I cannot do or do well anymore, but I really can't. I don't feel sorry for myself, I just wish I could be healthy for my kids. I've always been my own worst critic. It's just the way I am. So now I try and take the attitude that at least I'm alive and here for my children in some of the most important ways ... unconditional love, emotional support, and to continue to reinforce with them the importance of ethics, morals, respect and self worth. Sounds hypocritical, I know, at least the self worth part.

    I'm sorry. Guess I'm not having a great day. I hope I didn't depress anyone. It's just that this is the only place I have to go for hope, understanding, support and sometimes a "shoulder" to lean on.

    Wishing you all a wonderful day,

    Robin

     
    Old 06-14-2005, 07:11 PM   #14
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    Re: Ever feel like you are letting everyone down??

    I, too, feel like I let people down, especially my wonderful boyfriend. I can't do things half the time, simple things, or I decide I want to go to bed early when I promised I'd try my best to stay up for awhile with him. I promise him a massage or something special and then I can't do it, or the fog kicks in and I completely forget. And that's just the little things, and that's only him. There is so much more, and more people I seem to disappoint too. That's one of the hardest parts of everything for me...
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    Old 06-14-2005, 07:34 PM   #15
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    Re: Ever feel like you are letting everyone down??

    yea same here hon, but its like someone said, we didnt "ask" for this thing so its not like we're doing it on purpose or using it as an excuse. We try our best and give our best and thats all we can do. Its not so bad when its others who dont really believe or care about you, cause its like someone said, they probably think "lazy" or that we're overacting, being dramatic. To those, i dont even give the energy of my worrying over it. But to my hubby, my only son, my sister and my parents, yes to those (even tho they tell me its not my fault and dont blame me, im positive of that), the guilt still comes in waves. Im getting better on that tho, on that they understand totally, but the part i hate the most is that its so hard to make plans, you just simply cant plan ahead that much cause this thing is a day to day thing. Pain is alright, take the pain meds and TOLERATE the damn thing and you can still try to go somewhere, but the fatigue ohhh, thats the one that is worse. If fatigue hits, theres NO WAY, NO WAY, i can feel up to dressing and being social to people, i just dont have the energy. But, when you do get to do something, or youre able to go as planned, ohhh the joy it brings me, so much more than if i werent sick i think. Why? because i dont take one of those special moments for granted at all, theyre worth more than gold to me.

     
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