New to the board......disabled husband

Discussion in 'Fibromyalgia Main Forum' started by Hotwheelsgirl, Aug 1, 2008.

  1. Hotwheelsgirl

    Hotwheelsgirl New Member

    Hello everyone. I am new to the board but hope to become a facet of it yet. I have a question about how any of you would handle this situation or if you have any advice.

    I am very young and still a student. I have been married for a short time to a wonderful man of whom I could ask nothing more; he is so good to me. The only problem is that he sees me going through all this pain and he shuts down, because it hurts him so much and he feels guilty that he can't fix it or take it away. I know he would if he could. I don't know how to help him understand that I don't expect him to fix it, but it hurts more when he closes himself off to me.

    The other issue is that he is a T-5 paraplegic, complete. That means he uses a manual wheelchair to get around, has no feeling or control below his chest and is incontinent. For the most part he takes care of himself, even the incontinence. He doesn't require me to be his caregiver but sometimes he asks me to do things that, while more convenient for him, put me in that position. In many ways I don't mind this except that he doesn't seem to understand that as the pain has been getting worse it is harder for me to take care of him. There have been times he has so exhausted himself I have had to literally haul his 200lb body into bed.

    He seems to think his disability is more legitimate than mine because his you can see. I hope that over time we can find a good balance for both of us, but it sure is difficult right now with both of us trying not to get frustrated or upset with the other about things we can't control. Any advice would be much appreciated.
  2. Khalyal

    Khalyal New Member

    My hubby is disabled, too. It's a very fine balancing act to figure out how to care for each other. Over time, though, you guys will work out your rhythms.

    It's okay when only one of us is down. But when we're both down, we have to have contingency plans. One thing I do that helps is "cook ahead" whenever I feel up to cooking. I cook three times as much as I need and freeze two meals' worth. That way, on bad days, dinner is just a matter of nuking.

    You'll figure it out. The main thing is to maintain honest and open communication with each other. Try to remember to report how you feel in a way that informs him without it seeming like whining. You two could maybe sit down and talk about ground rules for this.

    Keep strong. If the love is there, there's a way.

  3. dragon06

    dragon06 New Member

    I don't have any advice cause I am not in this situation but I thought I would bump this for more answers for you.
  4. erinwilburn

    erinwilburn New Member

    My hubby is also disabled. We are 28 he is a student and we have been married 5 years. Hubby is blind. The biggest thing that we have learned is that we have to comunicate.

    Every night before we go to bed we evaluate how we are doing. this is mainly for me. I usually can tell how my next day will be by how today has gone.

    he too gets very upset about my pain and shuts down but sometimes as wifes we have to be tough as I am sure you know. Our husbands independance is so important. I don't know if you deal with this but my hubbys parents helped him become very dependant on other people for things he can do himself. We have spent 5 years finding a balance between the two.

    let him know when things need to be about you. I know it sounds braty but you can not expect to get better unless you realy make your health a priority in both of your lives.

    again comunication is what has helped me let him know that my pain is no ones fault and that what he can do to take care of me is, work as hard as he can to take care of himself.

    with the trials of being married to a disabled person come the blessings. You are obviously a strong loving person and like me, I am sure you know how amazing our hubbys are. They are more compasionate and understanding because they too strugle everyday.

    Good luck and please know that here you have friends who will always listen so rant when you need to, belive me it helps!
  5. Malcolm82

    Malcolm82 New Member

    My wife injured her back one week to the day before we got married almost 13 years ago and it has been downhill ever since. She hasn't been able to work in nearly 4 years and after one back surgery 2 years ago that failed and another redo a little over a month ago she is in bad shape. Now I'm sick with CFS and can't work and neither one of us can drive. We both wanted children so badly, but that dream is about over now. We have no friends but both her folks and mine are very supportive, fortunately. I keep telling my wife that God put us together because he knew we would need each other's help. I firmly believe this, but she thinks we are being punished for some reason. It is hard keeping her spirits and my own up at the same time, but we manage somehow, and at the very least we still have each other. Hang in there everyone!!
  6. homesheba

    homesheba New Member

    amaze me with your strengths.
    i want to say so many things to each of you,
    and yet i have such trouble finding the right words
    that it would all probably
    come out stupid sounding.
    i am one of those people that truly believe that things happen for a reason
    and that they will either break you
    or make you bitter or better.
    i can tell that by things in my own life
    that i will ,or may already be bitter-
    tho i am trying sooo hard not to be
    over things in my life.
    hurt, sad, confused- yes.
    but i dont want to be bitter.
    you all have such a sweet way of talking about what you all are going thru ,
    that the love for your pardners come shining thru.
    and i wanted you to know that for whatever reasons
    this has happened,
    i am thankful you all have found this board,
    cause i have 'grown' ALOT!just from
    reading your posts.
    i hope this sounded right-
    as i said-
    i am not very good at talking.
    but i am sending 'southern hugs' to each of you-
    and they are coming
    on warm soft southern breezes...:)
  7. Hotwheelsgirl

    Hotwheelsgirl New Member

    More than anything it just feels good that there are people who understand my situation more intimately than I could have possibly imagined. Thank you all so much for your supportive replies and blessed lives.

  8. colorfulcolorado

    colorfulcolorado New Member

    My husband is also disabled and its hard we haven't found our rhythm yet. He's in as much pain as I am and our house is wreck(well, to me it is). Part of the time he's feeling better that day and I'm down and vise versa. Sometimes I think he has FM also. Like today he's been in bed asleep and he hurts all over. And when I print out info about my condition he can relate. Especially that article on this site "My Name is Fibromyalgia", he really understands but there are times when we bump heads, like two little kids my pain is worse than your pain type situation. There are times I just want someone to take care of me. I know I'm being selfish, but he has family support and I have none. My brother and my son, which is about the only family I have left don't and in my son's case doesn't want to understand-he's got alot on his plate and every other year he's beening shipped to Iraq. So, I try not to bother him- I guess he expects me to be strong like I used to be. Anyway, I've gone on a rampage about myself. Sorry, hopefully you will find answers from this site. I've read alot of compassionate things people say to each other on this site, thats why I've stuck around for longer than a day. Good luck to you.