Guilt and purpose (Me whining)

Discussion in 'Fibromyalgia Main Forum' started by jmcdelaney, Feb 22, 2007.

  1. jmcdelaney

    jmcdelaney New Member

    Had myself a good cry last night. I let the guilt build up. Not sure if it is guilt, resentment, or anger actually.

    We were laying in bed with the tv on andI went to rub my shoulder (started snowing here last night, achey and trembling). My husband said (nicely) "could you put your arm down please, I can't see the tv when you do that". Well that was the end of me. Silently tears started rolling, my body shaking because I didn't want him to hear me crying (after all he is great about listening to me complain I didn't want to put more on him). So he starts rubbing my shoulder, pauses and says "are you crying"..."why are you crying"...I squeaked out "I am just so sick of feeling useless...I just want to feel good again." Well that really did it, off to the bathroom to have myself a good private cry.

    It's funny the things we can tough out on a day to day basis and then that one tiny feather falls on the cart and we fall apart.

    I wonder if cancer patients (not that I really should compare) feel guilty when they are bed ridden?

    I suppose it's very different in that they have a "tangable" diagnosis, and when they recover (hopefully recover) they will have a normal life back.

    I wonder if people who lose a limb or become paralyed go through guilt. (I'm not saying they don't, just wondering.)

    It's like we've been robbed of our lives. We have a non-tangable diagnosis, a condition that is not yet "scientifically proven", and don't know if we will ever get back to normal. We struggle daily to feel useful rather than guilty. We so desperately want to be everything for our families and do the chores and blah blah blah, but can't.

    I have been struggling to find a new me in all this. At 39 I had finally found my passion, and now unable to do that because of the pain.

    How do you feel purposeful when you can't even feel useful?

    So I will try harder to stop mourning the old (young) me and find a new me. Don't ask me how, but I will.

    Ok, off my soap box, thanks for listening.

  2. Jordane

    Jordane New Member

    Hi Joann,

    Oh hun I know what you mean.It takes a great toll on us.

    We look back at what we used to do,how good we felt,being able to look after the house,hubby,kids & work.

    Now its a good day if I can get up,have a shower,without crawling back in bed because it wiped me out having a shower!!!!!!

    Our senses are supersensitive,and if someone makes a casual comment,sometimes we just get upset from it.Not because of what was said but because of feeling **fragile*

    Does that make sense(??)

    It has been a journey for me to find out who I am now.And it is still ongoing.

    This DD.,took sooo much away from us.Its like a war inside ourselves, a battle to come out feeling like we we used to.

    Take Care!!

  3. jmcdelaney

    jmcdelaney New Member

    Thank you.

    I think it stems from everybody's need to feel important. Whether it be to somebody else or just to themselves.

    I am trying to find a way to feel important to myself at the moment...self worth (I guess).

    Not giving up on life, just searching for a new way of exixting and doing more than simply exist.

    Thanks again, Joann
  4. momof471

    momof471 New Member

    You are not alone, I know the feeling well. I had a week-long melt down last week. Its hard not to feel totally useless with this illness. However, we still have a purpose while going through this. We just have to look and try a little harder for it than we once did.

    God Bless
  5. AnneTheresa

    AnneTheresa Member

    Hi Joann, Your post struck a chord with me because I so frequently feel that my life with fibromyalgia is devoid of meaning and purpose. Trying to find a new self within these circumstances is difficult particularly because much of how we define ourselves (according to society's standards) is based on what we give/do/contribute.

    The following quote helps me put things into perspective, particularly when I feel I'm of little use to the world. I hope you like it.

    You have only one sacred duty:

    to make your spirit available to others.

    You do this by sharing what you already are

    in this and every moment.

    If you are loving, you share your loving.

    If you are suffering, you share your suffering.

    If you are healing, you share your healing.

    Why waste precious energy arguing with God about

    what it is that is yours to share right now,

    worrying how your broken bit could possibly be of use.

    Trust that however unlikely it may seem,

    without your piece,

    the universe would be incomplete

    by Carol Orsborn

    God bless,
    Anne Theresa
  6. jmcdelaney

    jmcdelaney New Member

    I'm going to print that and hang it on my board.

    Thank you, I found VERY inspirational!

  7. Suzan

    Suzan New Member

    I feel exactly the same things you wrote about.

    My daily face is one that reflects a woman who is doing ok..even with an illness, I don't let it show alot of the times. After 4 years, I can tell that dh doesn't want to hear every day about what hurts...or what I had to overcome to just make it thru the day. Unless I am flaring badly, our homes stays fairly clean...the clothes get laundered..and he has dinner nightly. Most of this takes every ounce of energy I have available , which as you can imagine leaves little energy left for fun...or joy..or me on any level. But, it also helps keep me sane in some ways, at least I feel like I have a use in my house!

    But, in moments where I am alone..I'm often brought to tears when I think about my life. I am so tired of the daily task of overcoming this illness. (FMS) I am so tired of just getting thru a day...and feeling glad when I can just watch tv till I am sleepy..and then fall asleep..which is often interrupted by pain!

    BUT, it isn't all dismal for me ...even though many times I fall into the guilt and despare catagory...I also do still and try to find joy in my life. Sometimes it is just being able to sit in the sun on my deck for a while..and listen to the birds.

    Sometimes it is seing one of my grown kids have a success..or feel the hug of my grandson or see the joy in his face when he gets to see MY face!

    On the rare day where I can..I do some of the things that I love..I paint on canvas..I sew...I read...I call a friend. All those things are much more appreciated by me I cannot just do them on a whim anymore.

    I think tho one of the hardest parts of having a chronic illness like FMS, is being LESS of a partner than I want to be. I think for me that is the most hurtful...and I think that , as well, it is the toughest part for my husband to bear. I know he ignores the fact I am sick at save his sanity probably...I know he tires of me rarely feeling well.

    So..I hear you.
    I feel the same things you are feeling.
    I just wish I could give us both hope that this would end.
    Try to smile each day...about will go a long way to help you find the YOU that is still existing!
  8. Susan07

    Susan07 New Member

    I really like the quote AnneTheresa gave us. Very true.

    At our church we have a group called Stephen Ministry. After I had to quit work I joined. This group helps others who need someone to "walk" through lifes challenges with them. It requires one visit a week and talking on the telephone with people in crisis. You may walk with one person depending on circumstances for anywhere from a month to a couple of years.

    I felt like this would be one way to still feel useful. I also find now that I'm home my mother, two sisters and my son all call me just to talk.

    So "bloom where your are planted" in anyway that you can.

    Take care and know that you are useful if for no other reason than being a companion to your husband.
  9. Slayadragon

    Slayadragon New Member

    Yes, I've felt this constantly throughout the ten years of my illness. It is one of the things that has been hardest about it and that is making me so determined to get better.

    The idea that we should not compare ourselves to cancer patients seems to me absolutely inappropriate, though.

    This implies that we do not consider our illness to be very serious. If we ourselves believe that, then it's unsurprising that we're not getting funding for it or support from other people.

    I don't think that people with, say, spinal cord injuries (resulting in parapalegia or quadraplegia) or parents of kids with mental retardation have any hesitation in saying that those illnesses are as serious as any others.

    As long as we keep telling ourselves that "we don't deserve to be upset because things could be worse," we're never going to get anywhere.

    Best, Lisa

    [This Message was Edited on 02/23/2007]

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