In need of advice

Discussion in 'Fibromyalgia Main Forum' started by ophelia_immortal, Aug 23, 2005.

  1. ophelia_immortal

    ophelia_immortal New Member

    Ok, here is my story... Any support/feedback/etc. is SO welcome.

    I am 23, and have been suffering with FMS since I was 12 (undiagnosed until 2 yrs ago.. NO ONE wants to believe this could happen to someone who hasn't even hit puberty, lol). It was always kinda bad,or at least I thought so at the time. At 20, I got pregnant (cue huge "uh oh").

    The pregnancy was a nightmare, but it was nothing compared to what happened once I had my daughter... It set off FMS From Hell. Most days I can't even sit up for more than a few minutes without wanting to die. I feel like I am totally screwing up my child because I can't do the things that I see other moms doing with their kids. It doesn't help that I live in Phoenix, where the average daily temperature from May until November is about a billion degrees.

    I am trying to improve my life. I am going to school full time, and I am engaged to be married. The trouble is, he doesn't get FMS. He, like a lot of people, just does not understand that sometimes (ok, a lot of times) I can't go and do and see. It's a nightmare to even get out of bed in the morning, and I can't even get him to change my daughter's pants before he goes to work (it isn't his child).

    I admit to not being straight-forward about how I am feeling, at least most of the time. I don't want to whine, even when my muscles are cramping so badly that I can't breathe. When I do finally break down and whine about it, I think he just doesn't hear me, or maybe this kind of seemly causeless pain escapes him. I know it is unfair to him to have to take care of me... I never wanted that.

    There is the truth... I have never been one to accept being taken care of. I have been the one taking care of other people for so long (my family history would slay you, I am sure), and I don't know what to do in this horridly helpless situation. I am the strong one- I don't cry unless I am alone, I don't ask for help, I don't do any of the things this disease is making me do...

    I am pretty isolated. All of my friends abandoned me somewhere between the pregnancy and the FMS escalation. I don't have much family that I can talk to anymore because they all have lives and dramas of their own. My fiance, for all his good qualities, is apparently incapable of talking to anyone outside of the internet world- especially not about serious stuff. So, day after day, I am alone with this. Add to the equation my school, my 2and a half year old, and all the housework that comes with this life... I am hopelessly lonely.

    This is my first attempt at this kind of a group. I have been denying that I need support for a very long time, so forgive me for the verbal vomit. I just need someone to talk to who understands either side of this syndrome... Please.
  2. lovinlifeinAK

    lovinlifeinAK New Member

    such a trying time. I personally would not be able to stay with my old man if he was not supportive and helpful. Between his help and my four kids I have never felt alone.

    Since we both work, we share in household duties. Except the cooking - that is my relaxation time, even though some days I have to sit on a stool and have the kids bring me things.

    There are however many people here that can relate to you better than I, I just wanted to say hello, and hope that things ease up for you. Just because you have this DD do not think that you are any less of a mother than "normal" mothers.
  3. Rose_Red

    Rose_Red New Member

    I just wrote out my story and somehow it deleted itself. I'm not up for typing it all over again. I'll just hit the high points.

    - It's better to be alone than with someone who is not supportive. You might want to think twice before committing your whole life to someone who doesn't seem to want to understand your illness. I doubt that's what you wanted to hear but I had to learn that the hard way.

    - YOU ARE NOT SCREWING UP YOUR KID. I guilt-triped myself to no end about screwing up my kid. She is smart, tough and independant. She's 9 now and can be totally self sufficient if/when she has to be. (I was just in a bad car accident and just kinda layed there for 2 weeks while I waited for my cartilage to re-attach to my ribs)

    Amber was 14 months old when I got sick. Sick enough that I had to move into my mother's with her and my now EX-husband. A year later we moved out and I was with my 2 year old all day long alone. I had to teach her to do for herself - I couldn't do it all.

    When Amber started kindergarden she came home the first day and asked me why I didn't do all the things the other kids mommy's do. She asked me if they loved their kids more than I loved her. Talk about wanting to lay down and die. A week later she came home totally disgusted with the kids in her class and says "Mommy - I'm surrounded by babies! They can't do anything for themselves!"

    - There is no reason to whine about your condition. It's OK to be honest and say "I feel like crap, dear. How was your day?" You need to clear up those communication lines. This is a major part of your life. you shouldn't have to feel like you have to hide it. You have to live with it. If he's gonna marry you then he's gonna have to live with it too.

    Feel free to write me at [email address removed as per rules] if you ever need someone to talk to.

  4. ophelia_immortal

    ophelia_immortal New Member

    Bah... they won't let me at your e-mail address, Rose... I am sure there are ways around that, I just haven't figured them out yet.
  5. yuckie

    yuckie New Member

    My heart just goes out to you. So young to be dealing with so much. Please don't feel guilty about the effect this will have on your daughter. Trust that she will be strong and unique as you two go through this together. You can still love her "to death" right? Make sure you do that. So much of the "activity" is just stuff. Just love her and be completely present with her. You two will be fine.

    I agree with the other poster, please don't marry your boyfriend if he cannot get on board with your reality (and don't hide it from him either).

    Please take special care of you and let others help you. Believe me, it is a gift you can give them.

    I'm in Phoenix too. I totally agree with you on the weather but sometimes I wonder how much worse it could be if it was as humid and/or cold as some of the eastern states or wet as Seattle. The weather really is difficult to deal with.

    As far as the email address thing, I think you can meet the poster in chat and get it (I'm not sure about this but that's what I think I've heard). Anyway, please take care. Janice
  6. ophelia_immortal

    ophelia_immortal New Member

    I just wanted to say thank you to the kind people who have responded to my post thus far. Believe it or not, just knowing that there are people who get what I am going through really helps. So, thanks again...

  7. Shirl

    Shirl New Member

    Love your name, I used to attend a church that was named Bethany.

    I am sorry you are having such a bad time, it is very difficult to have children and one of these illnesses. But it can be done. I raised my three children and my grandson for 5 years with FM.

    Whoever said that humid weather is bad, is so right. I live in Louisiana and its not only in the high 90's but the humidity is almost as high as the temperature. I can only stay outdoors for a few minutes at a time, it takes my breath away.

    As for emails, you can go to Live Chat, a private room to exchange them, but we do caution you that its not such a good idea. You simply never know who is who on the net. Its at your own risk that you do so.

    Please do not put your address on any of the boards here, and do read the rules of the board at the top right of this page. It will make your membership here much easier than trying to get around the rules of Pro Health :)

    Again, welcome to the board, and I do hope you are feeling better soon.

    Shalom, Shirl

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