Discussion in 'Fibromyalgia Main Forum' started by sweetpeafabrics, Sep 9, 2006.

  1. sweetpeafabrics

    sweetpeafabrics New Member

    I dont know how to thank this entire site. I have just been reading and reading and reading through some of the posts and am sitting here with tears in my eyes to know that I am not the only one with all this pain and suffering. I felt like I was reading all my own private thoughts and battles in each post. I live in outback Australia and we dont have any support groups that I know of out here. My children are great but my brother and partner have no idea what I go through each day even though it is staring them in the face. I get so tired of trying to justify why I cant get out of bed some days and why I cant do the things that in the last couple of years have just got too hard to do. Sometimes I even forget myself and I will have a good day and think I will go out and weed that garden and plant those plants and then for three and four days later pay for it. My daughter, bless her, is only 16 and pulls me up when she sees me doing these things. I walk with a walking stick now but even hanging onto to it somedays causes me strife. Putting on my jeans can be a comedy act in itself and when I have to call my daughter in to help me we do see the funny side and she says she will use it to blackmail me. Then there is the depressing side where I cant clean house like I used to, folding clothes and hanging them out is just a curse. I am too embarassed to get someone in to help as I feel that I am using them to do things I should be able to do. I dont like asking my daughter to do lots of things as I would hate to steal away her teenage years but sometimes it cant be helped and she really doesnt mind but I do. My two other children are in their 20's and dont live at home anymore so it rests on Rhiannons shoulders a lot. She is very good at defending me too which also makes me feel bad. I am crying and I cant help it. My partner doesnt understand most of the time. I get called lazy for staying in bed too long. My brother tells me that you either use it or lose it. Tells me that pain isnt a bad thing and that I have to push myself past it. Easy for him to say, itisnt his body in pain. I am sorry that I have carried on with my heartache for so long but Ihavent had anyone to tell all this too. My doctor isnt too bad but he isnt really a listener. Anyway thankyou so much for having such a great website and such wonderful people. love jennyxx
  2. 143alan

    143alan New Member

    I'm pretty new to the site as well and have read more than I actually respond to. I'm sure you're doing the same thing for the time being, and that's good. It's a great site and I've gotten some really good tips and information about what we're dealing with. It helps to not feel like I'm crazy when I see someone else is dealing with the same thing.

    My partner claims to understand, but my pain doesn't seem to matter as long as I stand at the stove and cook him 3 meals-a-day. I work a fulltime job Mon.-Fri.which is getting harder and harder to do.

    My family support is my 15 year old son who has RND which is in the FM family as well. He understands pain and has been dealing with it much longer than I have. The statement someone made to you about pushing yourself past the pain is their own ignorance about the problem. My son (11 at the time) told a specialist at Vanderbilt University who told him he had through the pain. "I've had this crap since I was 6 years old and doctors are just now telling me what it is after I've suffered so long. If working through my pain worked, I'd already be healed."

    Your daughter is lovely and as hard as it is for us to understand our children really do enjoy helping us. My son reminds me that I'm always helping him and have always been there for him, so don't deny him the opportunity to do the same. Like you I don't ask often, I don't want him to ever view me as a burden.

    You hang in there, and remember that others do understand. BTW I was in a chat room on this site with someone who is from the outback of Australia. I understand that it covers a large area but you may find enough close to you to start some kind of support group. My son plays online games and plays with several people from Australia and ironically one of them lives 15 miles from a person I met in a chat room. Wasn't that pretty cool. Her child also plays the same online game and when I told her my son's character name her son knew him and had played with him. It's a small world after all.

    Smiles and Hugs
    [This Message was Edited on 09/10/2006]
  3. hugs4evry1

    hugs4evry1 New Member

    I'm so glad you found us but as always, sorry you're sick and needed to.


    Nancy B
  4. alaska3355

    alaska3355 New Member

    Keep will get a lot of help and good information. I love this board! Terri
  5. nosupport

    nosupport New Member

    I am new here and like yourself my partner dose not understand either. I have a 13 yr old son who tries to help out a lot. I too feel like I am robbing him out of his tean years. I will tell him that we can do something together, then later when it's time to do it I am so tired or hurt so much that I have to tell him I can't. He always saids thats ok mon we will try again another time. I wonder some times if it is really ok.
  6. Bren2135

    Bren2135 New Member

    I'm relatively new here too, and read a lot more than I post. There are wonderful people here, who really and truly understand.

    Your daughter sounds like sucha sweetie! As for those who aren't supportive, yes, it's easy to be critical of what makes no sense. Hopefully in time, that attitude will change.

    Meanwhile, don't waste your precious energy feeling guilty. (this is my own self-therapy reminder, and I use it often!!) You can only do what you can do, and it's not your fault!

    Find something to make you smile, everyday.. you deserve it!!


  7. minkanyrose

    minkanyrose New Member

    I am only 1 week old on this sight and I like you was isolated with no one to understand and It is great to say something and not have to use all your energy up to explain then have them say that can't be possible. I have found strenght here to go and face life again, I got my laugh back and most of all i feel the love of people hope you find that to.

    I to have a 16 and 17 year old daughter and the 17 year old really helps and pulls for me our daughters are special.
  8. sweetpeafabrics

    sweetpeafabrics New Member

    Hi Wendy Thanks so much for your reply, It is so wonderful to have found this and have support where I didnt think it at all possible to get. You are quite right about it too. I will try to overlook the ignorance of others...I finally have a car now after three years of being totally dependant on other people to go to town (55km one way and 25km the other) so now I am a bit more independant. That was getting me down a fair bit too. Even though driving can be a bit tiring and painful I love to go and not have to worry about hurrying. I do have a couple of friends here that are understanding but one doesnt like to burden to much as grumbling and complaining (which I dont do often though) can be a bit of a downer for them.
    I have decided now that I am going to get out more even if it is going down to the river with my daughter and playing scrabble. ") Thanks once again for replying and my daughter is the most precious thing and very very special girl. She has all the qualities a mum would want in a daughter Plus some and I am very proud of her.
  9. pam_d

    pam_d New Member

    I'm sorry you are suffering from these illnesses, but I'm so glad you found this board! It has been a lifeline for many of us over the years, especially those who don't live in big metropolitan areas where there are plenty of local support groups. I've learned a lot from this board about FM, probably more than I've ever gotten from any doctor or book on the subject.

    Your daughter sounds like an awesome person, you are very lucky to have her---and I wouldn't worry too much about robbing her teenage years from her; the wonderful character she already has & continues to build by her empathy for you can only shape her into an equally amazing woman.

    I have an only daughter, 17, and this year when I got Leukemia, she had to rise to the occasion---a lot of responsibility was on her shoulders, plus dealing with feelings about all of it, and she responded amazingly well, I was very proud of her. You never plan on your child having to deal with such heavy stuff, but it must be that the things we teach them early on stay with you can add being an excellent parent (even on days when you don't feel that you are) to your profile...

    My hubby's a real support (it was he who found this message board for me, at a time when I didn't even know what a message board WAS) and also went out and got me a great book, "The Fibromyalgia Advocate" by Dr. Devin Starlanyl; I highly recommend it; it's been my FM bible, plus has tons to say about lack of support, etc. from friends & loved ones, doctors/co-workers who don't understand, and how to deal with all of that. Available at for less than $20, I believe. The author has FM herself.

    Anyway, welcome and post any time! I'd love to see "the outback"! Been to your country only once, just to hubby's going in a couple of months to Sydney, Melbourne, Adelaide & Perth...I'm jealous. Beautiful country!

    ((Welcome Hugs))

  10. kirschbaum26

    kirschbaum26 New Member

    Dear Jenny:

    Welcome. I think I have answered one of your posts already. I know I looked at your profile. You are most fortunate to have a lovely daughter, and from what you say, an incredible help.

    This is a terrible disease and it robs us of so much of our lives. To have people who can understand is wonderful. Many of our friends and family do not fit into that category...and that makes it even tougher.

    Hang in there, and hopefully you will enjoy visiting this site as much as I have.


  11. angelstapleton

    angelstapleton New Member

    So glad your found the web site . I read alot on here and have just found out about my fibro in may. There is so much to learn eveyday on this site . I truely as great full as you seem to be. Tell you daughter she a blessing. It sure is nice to see. I belive you both will always be close because of it.
    May you be blessed and hope you get feeling better.
  12. I am glad you found this site. I have been around quite a while. But until I found this site, I didn't know anyone who had fibro, even though I was diagnosed YEARS ago. It's nice to know your not alone with this dd. Hang in there!
  13. Redwillow

    Redwillow New Member

    You have found a wonderful place. People here understand when you talk about being isolated and in pain.

    When I read the articles here a lot of them sound like I could have written them. About relatives who don't understand our pain and fatigue, worries about money, strange symptoms.

    One of the best things I did for myself once I finally got my dx was to join up with on line support groups. It makes such a difference to talk to others who understand.

    I do have a support group that I could go to for monthly meetings but it is about 45 km drive and that is exhausting for me. So I rarely go.

    So keep on posting here and join into the chat site if you like. Lot of nice people there to talk to as well.

    hugs Marion (Redwillow)

[ advertisement ]