I want a cure so bad :'(

Discussion in 'Fibromyalgia Main Forum' started by Hope4Sofia, May 27, 2006.

  1. Hope4Sofia

    Hope4Sofia New Member

    We are on vacation at our cabin.

    My hubby and 3 kids just went outside for a long walk. I debated going all morning but finally decided it isn't a good plan for me today. I've been blacking out a lot and my energy is very low and my feet are swollen and achy.

    I watched them all walk away and it hit me again. I feel like these years are just slipping through my fingers and I'm trapped in this stupid body! I don't want to miss out. What will my kids remember of me from their childhood?

    I read the posts of people feeling better, in remission, or cured and I have to believe that's possible for me too. But how? When? I'm on the clock here, my babies are growing up....I need help NOW.

    I just want to live. I want a cure so bad! I don't want to miss these years.

    Thanks for listening.

    Sofi



  2. JewelRA

    JewelRA New Member

    Sofi,

    You are not alone, and I SO understand. I have a 3YO and a 6YO and sometimes, I feel like I am missing their entire childhoods. Yesterday, I took them to the pool for a couple of hours and it about KILLED me. I am forcing myself to do all these things to try and be some kind of "normal" mom for them, and I always end up paying for it.

    I don't know if we will get better or not, but I believe that God entrusted us with these children for a reason. I know your children love you and mine love me. All we can do is try to be the best mom we can be to them, and do things we CAN do with them. Read to them alot, talk to them alot, tell them how much you love them and how special they are. They will remember those things.

    God bless,
    Julie
  3. carebelle

    carebelle New Member

    Your kids wont remember you didn't go on a walk they will remember their "Special Time " with Dad
    They will remember you hugging them when they come back.
    I missed out on a lot when my children were growing up but I made sure they did not miss out.I always encouraged their Dad to go when I was not feeling good and unable to go.
    When I was growing up it was my mother that always did what we needed cause Dad worked.When I went away to college and I'd call home I'd always talk to Mom ,Dad was at work .
    When I got married and moved away, I'd call home and talk to my mom Dad was at work.I truely loved my Dad but Mom took care of everything concerning us kids cause Dad was at work.
    When my Mother died in her fifty's I realized I really did not know HOW to talk to my Dad .When I'd call home for Holidays my Dad would now answer and our conversations seem to be very short and to the point, because we did not know how to talk with each other, with out my mother there .As years went by things got better and I became close to my Dad the same as I was with my mother years before .But it was hard and weird trying to get to know him after I grew up.
    So when I had children of my own I decided that I would make sure they interacted with my husband alone ,without me at times so they would know their father as they grew up.My daughter ,now married with children of her own will call and talk to her Dad as easy as she does me.
    I think even thought this Illness has taken so much from me ,its also given me a chance to help my children and their Father have a closeness that most children do not have ,with their Fathers at an early age.Someday if I leave this world before my husband I'll know the closeness between my kids and their father will not be uncomfortable.
    So do not think you are losing out when you cant do something consider you are giving the gift of intimacy to your children with their father.
  4. elliespad

    elliespad Member

    You said that beautifully. That is EXACTLY how I feel. But you said it so much better than I would have. My 22 yr old daughter and 18 yr old son are VERY close to their dad, because he was such a great hands-on dad, from their earliest days.
  5. Hope4Sofia

    Hope4Sofia New Member

    Thank you for all your insights. My husband is much more involved with our kids than many fathers are. I'm glad they have that. I just wish they had more of me.

    Thank you for your encouragement. I wish I could be the mom that I am in my heart.

    Sofi
  6. mamie43

    mamie43 Member


    hope4sofia said:

    "I wish I could be the mom that I am in my heart."

    Thats exactly how I feel. I push and go out of my "not feeling so hot" zone to bring my son on outings and to the park because he goes a lot of places with dad. I was healthier when I had my daughter and we were a lot on the go when she was growing up.

    You see, My parents were much older when they had me. They were the age of my classmates' grandparents. I never did anything or went anywhere with my parents and I felt so unloved and unworthy and my self-esteem plummeted at a very young age. So, I promised my unborn children that they would visit zoos and theaters and playgrounds etc.....

    I can't play and bring my son on day trips as much as I'd like to, but I do what I can and suffer the consequences, during and afterwards of course. My parents were not ill when I was growing up and they were not that old either. Mom was 39 and dad was 49 when I was born.

    We also play boardgames, read to each other and I Homeschool. I want to see him grow up. I love him so much, and I do remember how I felt growing up. Its taken me years to learn to feel good about myself and I don't want my children to feel that way, ever.

    Hugs,
    Mamie43

  7. diva42597

    diva42597 New Member

    I feel the same exact way. I have different reasoning because I don't have kids. I'm 28 and have been living with this disease since 22. I went from being a marathon runner to a shut in back to reclaiming my life, but having severe difficulties. I finally got diagnosed with fibro and it's a relief because I know what's going on, but it's a disappointment because I always secretly hoped there would be a day...just one, that I wouldn't be in pain. The key is to live your life. Take advantage of the good days without bringing on bad days. My mother lived with the disease and I respect her for it. I always looked up to my mother because I knew how she struggled yet her faith was still strong. She cared about others even though she had fibro and a slew of other medical issues. Your kids will do the same. Don't miss their childhood, but don't ever let yourself think that your disease affects what your children think of you. It doesn't. Take care and God Bless!

    Kristen
  8. Hope4Sofia

    Hope4Sofia New Member

    It is just so discouragig. I struggle with feeling inadequate when I see the "normal" moms and all that they do. It's the whole mommy guilt thing. I should go on more field trips or volonteer in the classroom.

    I admire those of you who homeschool your kids. I tried with my daughter and it was a miserable failure. I was to impatient with her. Came down hard on her for not catching on.

    On top of that, I just can't keep up. I can hardly keep up with the homework!

    It is encouraging to hear that those of you who grew up with sick parents still feel loved by them and respect them. I hope that my children are close to me as they grow up.

    I try to stay optimistic but sometimes it just catches up with me.

    Thank you for understanding me. :)
  9. Lolalee

    Lolalee New Member

    It's ok to vent and complain and express your disappointment here. At one time or another I think that we have all felt our own version of regret and sorrow at not being able to do the things we want to do.

    This is a good place to come to talk about your feelings.

    You see, I read your words and I realize that my life could be so much harder if my children were still young. I got sick after my sons were grown and on their own. This morning I was regretting the fact that the one thing I look forward to all week, I couldn't do because I am feeling so ill today. I couldn't go to church and sing praises to God. And I don't know why I feel so sick today.

    FMS and CFIDS are such a mystery. It is so hard to predict when you will not be able to get out of bed. I'm right there with you...I want a cure, too. And for your sake, I want it today!!

    Bless you,

    Lolalee
  10. diva42597

    diva42597 New Member

    For me, seeing my mother go through her struggles was the only thing that allowed me to now deal with FMS myself. It wasn't that I just love and respect her, to me she defines a strong Christian woman and gives me something to strive for. She is really an expert at handling FMS and still being very centered and balanced. I don't feel balanced...I feel like yelling or screaming sometimes or getting into the "poor me" frame of mind. But I think of my mother's strength and I continue on. I can tell you that even as a child, I just knew mommy walked a little slow. It never affected me that she couldn't play with me as much because I knew she loved me so much. That's all children need. If they are secure in the fact that you love them as much as you do, they will not feel as if they missed out. But, I do urge you to take advantage of what you CAN do with them and not focus on what you CAN'T do with them. Once you begin managing FMS, you will see that it's much easier than wondering what would've happened if you didn't have FMS. I know..easier said than done...trust me I'm a work in progress too! I wish you all of the best though.
  11. suzette1954

    suzette1954 New Member

    but you can make memories when they come back. Play cards or work a big puzzle while you are there with the one who puts in the last piece the one who gets a prize. UNO or any game. I dont know how old your kids are, but you get my drift.

    Pop corn in the fireplace and tell stories to one another with a cup of hot chocolate. Read to oneanother. Those memories will mean as much as a hike. It will just be different.

    My sweet hubby and I just took our 2 yr old granddaughter to the zoo acouple of weeks ago. Lots of walking. I walked from one bench to the other and sat at the exhibits behind them, but I was there and Kaylynn would turn and say "Look
    Mamaw at the monkey walking on the rope." I took pictures of her and her Poppa on the merry-go-round where she rode the(Guess) the monkey!!.

    It has taken me almost 2 weeks to start to recover from that day, but IM sooo glad I didnt miss it. When she comes to spend the night, Poppa plays with her outside and Mamaw reads and plays barbie and we cook together.

    My prayers are always with all of you

    Suzette
  12. ANNXYZ

    ANNXYZ New Member

    is the thing that you can give ! Even with a nasty disease , you can always make them feel loved and VALUED .
    We can do that , even with an illness. That is a profound thought when you ponder it. I am sure you are a fantastic Mom.

    sofia, everyday I feel just like you . Sometimes I cry .
    I miss being normal and feel inadequate frequently .
    I am 50 and single. The last person I dated disappeared
    suddenly , w/o explanation. I know it was bec of my challenges . In the long run , it was a blessing to see that I should not invest lots of time w/ someone who was not equipped to deal w/ my obstacles. I was not devastated , but it certainly stung . We suffer a lot of losses, and the hardest thing we have to struggle with is the emotional aspect of how we feel about ourselves .

    Day after day , I wake up and ask God to help me see anything I can do to get to a better place in my life .
    I am vigilant in searching for better health. It would be easy to give up , but I keep searching . I was inspired by what mikie said " I refuse to live in despair ".
    I struggle w/ discouragement , but try not to be swallowed by it .

    Please know for whatever good it does that you will be in my prayers today . You sound like a lovely person and MOM!
  13. mrpain

    mrpain New Member

    Grinding it out for our kids has become a way of life for most of us here. My daughter is in her mid teens and it has seem like time is flying by. Like you sofia, I want to be at my best for my family and it hurts when you can't.

    My hope is knowing that knowledge is ever increasing and that one day a discovery will be made that will benefit us all. Keep praying and never give up. Maybe one day soon, something will break and help will be on it's way.