Discussion in 'Fibromyalgia Main Forum' started by fmcurepls, Jul 11, 2006.

  1. fmcurepls

    fmcurepls New Member

    Sometimes, most of the time I feel so guilty that I can't spend time with my twin boys. They are 13 so they really can spend time with their friends. Sometimes I am so sick I can't even go to their baseball games, etc. It breaks my heart. I feel like I have missed out on the last 7 years of their life as I have been sick since they were 6. Even going to a movie or out to lunch is difficult. I love them so much and pray everyday that I will get better.
    I know there are so many others like me out there. Would love to hear from you and how you handle it. I am a single mother b/c of the illness but am lucky enough to have a wonderful boyfriend who is extremely compassionate. I don't know what I would do without him.

    [This Message was Edited on 07/11/2006]
  2. Zzzsharn

    Zzzsharn New Member

    I'm a single Mom too, with 2 girls and a wonderful boyfriend.

    I often feel loads of guilt-

    My 9 yr old can remember me when I was healthy, the sled riding and going to the park and playing on the floor.

    My 5 yr old has never known a healthy Mom

    I don't know which is worse.. my little girl seeing me deteriorate, or the one who never got to experience the "real" me.

    It breaks my heart. I do understand that gulity feeling. And even if you think the kids don't understand or get it, they do.

    I try really hard to do things with them that don't require me moving off the couch much..

    I've recently starting introducing them to movies I watched as a kid.. Anne, Superman (with Christopher Reeves), the old Freaky Friday..

    We paint our nails, and read and braid each others hair.

    I know these are not examples you could do with boys.. but I'd be lost with a couple boys around!

    Best of luck to you, and try not to let the guilt eat at you. You love your boys and they know that.

  3. AnneTheresa

    AnneTheresa Member

    I know just how you feel Sharon. My sons were about the same age (6 & 8 )when my FMS became severe and I used to feel just terrible for being ill and missing so much. I was also a single mom with a great, supportive boyfriend.

    Raising my boys was a challenge (my heart goes out to you), but by depending on others for help, I was able to ensure they had a full childhood. For example, their grandfather used to take them to sporting events and my boyfriend used to take them to the arcades, etc. For the more passive activities (reading together, watching TV and movies, board games, joke-telling and conversation etc.) I was there for them.

    My boys are grown now (28 & 30) and they've reassured me that their childhood was just fine. They've grown into wonderful, sensitive men and they have an understanding of diversity and disability that they may not have learned without witnessing my day-to-day struggles.

    You can trust that you're a good mother, in spite of your limitations. I know that doesn't take away the guilt you feel or the sense of missing out on their lives. But all any of us can do is the best we can do. And, you're doing that.

    God bless,
    Anne Theresa
  4. fmcurepls

    fmcurepls New Member

    When I was reading your message I had tears in my eyes. I read your profile and was surprised to see that you work full time. I don't know how you do it. I give you so much credit. You must be an amazing person and mom with so much strength.


    [This Message was Edited on 07/11/2006]
  5. fmcurepls

    fmcurepls New Member

    Thank you for your response. It made me feel better to hear that your sons are grown now and do not resent the fact that you were sick when they were little, and that it has made them compassionate. I pray that mine will grow up the same way.

    I read your profile and I am also a very spiritual person. I have studied Reiki 1 and Reiki 2. I read many spiritual books. I have to believe that the Fibromyalgia has been a blessing in disguise. I have already seen some things in my life that validate this. I know that one day I will know the answer. I hope and pray that I will be able to make a big difference in helping people with this disorder in the future.

    With love and light,

  6. fmcurepls

    fmcurepls New Member

    I know the guilt only makes me feel worse but sometimes I feel that my kids do not understand because their father (my ex) does not believe that this is a real illness. They get mixed messages. He was not there for me at all when I became sick and they saw this.

    Thank you

    [This Message was Edited on 07/11/2006]
  7. SPR30

    SPR30 New Member

    I try and compensate for what I can't do. I play video games and cards with my son. We go online together and watch movies and stuff like that.
    I am always home so he has attention and we have a dog.
    I show him how to cook and teach him alot of things.
    Focus on what you can do with them and the good things you give them. Make sure they know how much you love them and how you feel.
    Talk with them, listen to their stories of school and games and be there for them, that is important.
    Find something yo can do with them that is yours and set aside special time for whatever it is that you do well together.
    Maybe another parent could video tape the ball games so you can see them.

    [This Message was Edited on 07/11/2006]
  8. Empower

    Empower New Member

    I believe that you are anxious and sad about this, but the best thing a child can have is love, and if you can take the time to cuddle with your child and read to them and talk to them, that is enough

    Take it from someone who had abusive parents who didn't love much
  9. fmcurepls

    fmcurepls New Member

    Wow you really put it into words how most of us are
    feeling. You as well as your daughter sound like beautiful souls. I am sorry about the custody battle you are going through and I will pray for you. I know that you will win.
    It sounds like you are an incredible mom. One of my sons read what you wrote and he instantly hugged me. It's funny but my boys always wish that I were better too! Every time they see a rainbow and even on their birthdays!! God must have blessed us all with very special children. I hope you find something to make you feel better. I am going to the FFC in Atlanta at the end of the month. I will keep you posted on my progress. Keep hangin in there!!!

    Good luck

  10. TAM

    TAM New Member

    HI sharon,
    I'm also a single mom I have a 14 year old son. I know what you mean I can't go anywhere like I used to not to a movie or anything like that I can hardly go to the store when I need to, I have'nt been able to drive for the last 9 days the pain is to intense and as I'm sure it does for most of us driving makes my pain worse. I bet your twin boys understand, I also feel guilty for not being able to do the things my son and I used to enjoy.

    However I'm very blessed my son understands, we don't make plans we play it by ear when I'm able to go somewhere on a certain day ( when I'm able to drive etc..etc..)then we make plans. We enjoy spending time together, and your right your boys(LIKE MINE) are also old enough to hang out with there friends. My son is really into playing a guitar, I must say he is pretty great too, but I know a mother is always proud of there child no matter what, but everyone else who hears him play thinks he is good also.

    Anyway thats one way we spend time together without going somewhere. and I have always taught my son to try not to be negative, try and find a positive out of most things. I concentrate on the things I'm still able to do instead of focusing on all the things I can no longer do. Which I'm sure your the same as me and your list of can't do is much longer then what you can do.

    Just being there for them and loving them with all your heart will make not being able to do things with your twins like going to there baseball games seem not so important to them. They know how they can count on you to always be there to support them and love them and thats far more important then things your unable to do with them.

    I think as mothers we feel worse about not being able to do everything we used to do with our children, because we want to cherish every moment of our chidrens life, but most chilren understand, my son does now he might be disapionted when I'm unable to do something but he hugs me and does'nt get mad. Don't worry or feel guilty Sharon because as long as were there for our children in all the other ways we really don't miss out on the extra important things. Take care. Tammy
  11. Cromwell

    Cromwell New Member

    Please don't feel guil;ty-it is love kids remember not attendance. They will be getting old enough to understand.

    Also, I cannot tell you how many parents I know who are so into their careers, the kids go to before and after school programs and then are at camps and such all summer, their parents hardly see them.

    Don't worry, hopefully your kids will be compassionate.

    Love Anne Cromwell
  12. WinniethePoohA

    WinniethePoohA New Member

    Dear Sharon:

    I'm new around here,too & have to put my 2 cents in...
    With 25 nieces & nephews (at last count) & being a teacher (who loved the jungle gym & bounce house before CFIDS retired me), I feel I may speak with some authority.

    Children don't blame you. They may miss you, love you, want more time with you, but there's no blame. There is no one TO BLAME and NO ONE benefits from guilt. That said, I do know that is goes hand in hand with parenting...and teaching. We all second guess, try to do better, more, etc. The point is to do your best and, after that, LET IT GO.

    GUILT breaks US DOWN! Question it. What constructive purpose DOES GUILT SERVE? NONE. It's an energy sapper and a self esteem whacker. Tell it to get lost. Don't listen to its message. Rewrite the messages you're repeating to yourself when you point and blame and shame yourself. Write out a list of all of YOUR wonderful qualities that make YOU the special parent that you are.
    Frame it. Read it daily (at least for now) as it hangs on your wall.

    Got yellow sticky notes? Write in bold marker every single thing (even thoughts) you did for your children today. Stick every single note (at least 30, I'd bet) and stick it on your bathroom mirror. Stand or sit back. READ the notes to yourself and/or family and give YOU a hug for each one. Let's celebrate what you DID DO. Keep these up on your mirror. Read them daily. Watch your self esteem soar!

    I'm not kidding and I do take this seriously. It's the same for me w/ hubby, doggie, nephews, family obligations, etc. I decided to fight and/or learn to laugh at my enormous heritage of Italian AND Roman Catholic guilt.

    Now, makes some more notes. Are the boys fed? Clothed? Housed? Do they feel safe/secure at home? Do they know you love them? Are they nice kids? With friends? Not in any major trouble? Do they attend school? Do they know/share your values? If you say yes to 4 or 5 of these, you are doing SOME IMPORTANT PARENTING WORK and are way ahead of many parents.

    Now, think back to the guilt. Where did it come from? Parents? Neighbors? Society? Did you imagine parenting as a mop n glo ad? A tater tots commercial? Church?

    In balancing this, and giving credit for what you DO even WITH your illness, does the adult, surviving, strong, American woman need those dusty old thoughts. You're/We're in the real world, babe. There's not a kid on earth who'd trade the knowledge that his parent cares, supports, validates, listens and is interested in him for glowing linoleum or tater tots.

    Jot the guilty thoughts on paper and rip it to shreds, burn it, toss it out, or whatever. Let it go. I promise the boys understand more than most adults. Children are much more in tune that we tend to give them credit for. Hold your head up high. Smooch 'em when you see 'em (not in front of friends, of course!) and ask how they are. That's the nitty gritty. Be in touch with them. Acknowledge them. Leave them little notes.

    I hope this tome is a cheerer upper as is the intention. The soapbox is getting rickety & I'll climb down now...
    Sweet dreams,
  13. WinniethePoohA

    WinniethePoohA New Member

    And they will love rehashing the game with you! They won't be able to sit still while you watch. Sounds like fun to me!!

    Hang in there, all of you moms & dads & step-parents--the kids love you.


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