Do any of you get support other than here..family?

Discussion in 'Fibromyalgia Main Forum' started by Sheila1366, Sep 26, 2005.

  1. Sheila1366

    Sheila1366 New Member

    Hey everyone,
    I was just wondering were there more like me with no support at home or are they more out there that do get support from family,friends...husbands?

    I'm not gonna make this another ramble on about how my husband treats me,to tell the truth I am very tired of it and just have nothing left to say.

    That is why I am glad I found this message board.
  2. Sheila1366

    Sheila1366 New Member

    Sounds like you have a great support team there,so happy for you.Do they make carbon copies of your husband,maybe clon him.Sounds like a great guy.

    Why have you lost friends since you became ill with fibro.?I hope they didn't back away cause you were ill.That is cruel but I have been through that too with my family.

    BTW, how are you feeling today?I hope today is a good one for ya.

    Sheila
  3. Rosiebud

    Rosiebud New Member

    I do get support from my husband but it wasnt easy going the first few years when we both had to adjust to the way our lives changed.

    I have lost 'friends' through this illness but it's their loss, I have only one friend I can really rely on.

    love
    Rosie
  4. Rosiebud

    Rosiebud New Member

    I deleted my post but not in time, I thought I was being a little too full-on about my hubby and didnt want to come over like that.

    It's my birthday today Sheila - I'm not having a great time recently but I've been worse.

    Yes my friends did back away because of my illness, some didnt believe it and others couldnt cope - sounds like I had loads? ha ha

    How r u?

    love
    Rosie
    [This Message was Edited on 09/27/2005]
  5. Sheila1366

    Sheila1366 New Member

    I really am happy for you,truly.I wanted to hear from everyone on how this has affected their lives,family and friends.

    HAPPY BIRTHDAY TO YOU!!!!!Sweet 16, right .
    Yesterday was my oldest daughters birthday,she turned 20.

    How long have you had fibro.?Do you have cfs too?

    I have seen how famalies and friends back away.Especially when something takes patience and understanding.

    No one wants to belive you are sick when you seem fine to them.My husband seems to think if I smile then I don't hurt anymore or if I am up doing housework or being silly with my girls then I don't hurt anymore.He thinks if I am hurting I would not be able to do all these things.He has got it all wrong.It's like the saying that just really bugs me"You don't look sick".I have a bumper sticker with that printed on it.Found it on a message board that supports people with illnesses that can not been seen.

    I bet your husband has something planned for your special day.I hope you get a cake today and I hope it is chocolate.

    Sheila
  6. Rosiebud

    Rosiebud New Member

    56 today, dont feel it mentally, dont look it but physically I've just turned 80.

    Hub got me 2 boxes chocs, working my way through one now, bang goes my no sugar diet again. 3 cds of Rufus Wainwright and a lovely card.

    My daughter and son in law on their way.

    I have CFS and Fibro - CFS diagnosed in 94 but had symptoms 10 years before that although able to get on with life til 94. Got fibro around 5 years ago.

    How old are you Sheila. My kids are grown and left home now. Do you have CFS and fibro too? where do you live, if in States then it's through the night isnt it????

    love
    Rosie
  7. Sheila1366

    Sheila1366 New Member

    Hey Birthday Girl...Chocolate.It is an unwritten rule with us choco-holics.No dieting when chocolate is in the room.You can always start over Monday.

    What time is it there?I live in US,North Carolina.I am a sountern gal.I am 39,turn 40 Feb. 13th.My girls are 20 and 14.My oldest has fms/cfs.My youngest has many health problems mainly brain damage and hydrocephalus(fluid in her brain).I had my oldest when I was 19.I held my youngest on my 25th birthday for the first time since she was born.She was on life support for a few weeks and on my birthday had her first brain surgery and the nurses let me hold her.Even took a picture.I have in framed.It was a very precious moment in my life.I was holding her for the first time and possibly the last.She was a very sick little girl and surgery was very risky but it had to be done.

    Well eat some candy for me will ya.I love chocolate with carmel...yummy!We have red velvet cake to munch on from my daughters birthday.It is a lovely treat too.And the thing is ,I think I was on a diet.I can't remember,the sugar has blocked my brain waves and I fell nothing but giddy,happy and free.LOLWell, maybe that is striching it a bit but I am gonna have fun while I fell like it.I seem to be more on the depressed side when I post on the board.I do have a chipper side to me even when I am in pain.Thank God the pain is not too bad right now.It's probably due to the red velvet cake Don't ya think?

    {{{Rosie}}}The Birthday Girl!!!

    Have a great day with your family.
    Sheila
  8. Sheila1366

    Sheila1366 New Member

    I am the same way.Everyone in my family knows if they need help,call Sheila.I get burned every single time.I call everyone,send cards etc....I am trying to not let it bother me anymore.The last straw broke last night with husband.I now know that he is like everyone else,they don't think I have a brain and all I am good for is taking care them and I am gullable enough to do it.Well, no more.I am so ill too about the way my husband treated me last night.I'm not sure how we are going to work pass this if we can.

    Why do people take advantage of people like us and run when we need help.I don't get it.Do we have a message blasting out to the world....Come and use me,I don't mind.

    The only support I get are from my 2 girls.They are my world.

    Sheila
  9. chp1298

    chp1298 New Member

    The only support I get is here from all of you and it means so much to me. My family just knows I am sick but they arent interested to really learn about the illness.Sometimes I will try to educate my son and his sweet self will just say that mama you can never catch a break. They dont understand. No one understnds. I was at the ER a while ago for chest pains but of course whent hey took my history I said i had Fibro. Later I hear the nurses outside my dooor saying thats what people say when there is nothing wrong with them and then some hushed them. It made me so angry, I told my hubby to get the nurse, I told her to take out the iv I was leaving. SHe refused so she got the Doc and I told him and that I wasnt going to be treated that way by health care professionals. He apologized, asked me to stay to finish testing and he gave the what for to the staff outside my door. People are so heartless and just plain stupid sometimes.
  10. Rosiebud

    Rosiebud New Member

    sorry about your girls, that must have been so scary for you with your youngest. Poor wee soul.

    My daughter has CFS/Fibro too since she was 15, she's 28 now.

    It's 2.37 here now in Scotland, outbreaks of rain all day with some sun for 10 minutes in between.

    My daughter has just been visiting brought me a nice top and chocs and flowers - so more chocs to get through. ha ha

    love
    Rosie

  11. Mareeok

    Mareeok New Member

    fortunate because I get a lot of support from my family and I have a congreegation of friends who support and pray for me even though many don't fully understand. However, I was married 25 yrs to a selfish husband who said I was milking it and looking for attention. He tried to turn our kids against me. But he's an 'EX' now and his kids want nothing to do with him. Everyone eventually reaps what they sow.
    It's very difficult when a loved one doesn't support you when you are dealing with an incapacitating disease. It makes our pain so much worse and our tiredness much more exhausting. In the very beginning the things my husband said made me feel doubt which should never ever happen.
  12. lovethesun

    lovethesun New Member

    We have been together for 20 years and he still calls me beautiful everyday,helps me out of cars,does all the housework and many other things.He lost3 fingers about the time I was diagnosed.It wasn't discussed-we just helped each other when needed.My Mother,sister and son are also supportive as is my husband's family.His niece has cfs,fms,epstein barr.Writng this down.I really feel lucky!I'm 51 and my husband is 66.Maybe age makes a difference.
  13. rbecca47

    rbecca47 New Member

    i get support from my kids, they seem to give me as much support, but they really studied up on the DD. and my 10yr old. is so sweet. now some other family members say it is just a excuse to get out of work and i am just lazy, i wasn't lazy when i work 12 hrs a day 6days a week, and took care of my kids. oopps sorry didn't me to vent there. and most my friends are to busy, and i can't keep up. my biggest support comes from this message board. i and thank god every day for all of you here. and pray for relief of this awful pain. hugs to all
    becca
  14. LittleBluestem

    LittleBluestem New Member

    He has known me all my life, so it is pretty obvious that something is very wrong. I have told a couple of friends and they have not said anything disparaging, but then they haven't said much of anything at all about it.
  15. JLH

    JLH New Member

    NOPE.

    None from family.

    Just here.




    Thanks everyone!
    Janet
  16. JPach007

    JPach007 New Member

    I started a post with this topic about a month ago. I really dont know how to get my husband to read the books, get online and talk to you all, I even suggested he talk to our family Dr.
    He just says...yeah, yeah. He says he just doesnt get how one second I can be fine and the next terrible. I want so bad to just tell him its his fault I'm sick because of the emotional and physical abuse and stress he has had me under for 10 years. I guess he wouldnt get that either since he doesnt even understand the illness. Of course I have no friends either...
    Hang in there...it has to get better!
  17. maggiemae55

    maggiemae55 New Member

    no support from family at all. i do come here for support and validation, even if i don't post as often, i'm here.

    i am a single mom, work 3 part time jobs, my kids have watched me do "everything" since their dad left, (1993) and i suppose it's my fault i didn't make them do more. so, they are not much support either.

    and, i turn 50 on friday! i am going to see my daughter in college cuz she will turn 18 on sunday. i will probably be forgotten by the rest of my family, so i thought if i'm not there, it will not hurt as much.

    thanks to all on this board for being such loving, tender supporters!!

    warmly,
    maggie
  18. Sachmo

    Sachmo New Member

    My husband tries, but he is getting tired of me not being able to do stuff.

    My daughter is very supportive. She has severe asthma and has an understanding of health problems. Also, I have a little black poodle that whines at her when I am having a flare. Its funny how "in tune" pets can be with your problems.


    At work they have been very understanding. I am lucky with that.[This Message was Edited on 09/28/2005]
  19. ilovecats94

    ilovecats94 New Member

    Well, my hubby will do all the errands and cook and do the garbage. I guess that is what you would call support. But I don't get any emotional support from anyone in my family.

    Most of my support is from email friends and a few in the family and here.

    Sad, isn't it? My husband NEVER asks how I feel, how my day went, anything like that. NEVER in 27 years has he asked me how I feel or anything close to that.

    Back when I had a bladder infection, I still had to do all my regular things, even though there aren't many of them. He did help me make the bed up, but that is the only help I got that day. Everything else was normal the next day, even though I still wasn't feeling too great. Good thing I'm housebound most of the time so that I don't pick up the germs so much from the errands.

    I just finished dusting my office. I'm exhausted... My cleaning girl will vacuum the room, but I like to do the dusting myself, because I have so very much in here and would prefer to do it myself. I spend so much time in here and am allergic to dust.

    Hugs,
    Faye
    I need the emotional support more than I need the physical support, to be frank. I don't get it from family. Actually I don't have that much family as my parents are both dead and I have no brothers or sisters.

  20. keke466

    keke466 New Member

    None what so ever. I've told a few of my coworkers but they don't understand and really don't care. One I've worked with for a few yrs. and she'll say things like-Kletta's always sick but she comes to work. Which is good for me but she doesn't get it either. One nurse I work with knows about the pain but nothing else. Only cause she has knee pain and has an idea of pain. I work in the nursing home and have been working 5 nights in a row but I ask my DON to let me cut back on how many I work in a row and see if it helps some. I'm gonna try working 2 on- off 1,3 on- off 1 and see how it goes. Either that or gonna have to cut back but I can't really afford to do that. No family members will talk about it with me. So I mostly hold it in which probably cause me more anxiety and depression.

    Keke