need support

Discussion in 'Chit Chat' started by pasara, Feb 1, 2008.

  1. pasara

    pasara New Member

    Last week I was feeling pretty strong so my husband, son and I decided to go to the conservatory and small zoo. I walked quite a ways that day, but was enjoying myself so kept going. Well, duh, I crashed about a day later, thought I was going to die (literally), was fully bedridden for about 3 days, now a week later still mostly housebound, but able to prepare my food, sit a bit at computer etc.

    The problem is that this put a huge tension between my husband and me, or I should say, brought the underlying tension to the fore, and now we are barely talking. It is so stressful and making it harder for me to come out of flare.

    He is tired of dealing with me, and is angry at me for "being stupid" about overdoing it last week, even though he was there with me and never once suggested that we should cut it shorter. He is tired of dealing with me, of never knowing whether I am going to be up or down, or adjusting his life for me. Of my need for quiet and order. Of seeing me in pain or bedridden from weakness. And although he knows it is not my fault that I have this, deep down he blames and resents me, especially when I have crashed.

    I am tired of feeling I have to justify my small existence, of feeling like I am dragging him and others around me down. I feel ashamed and humiliated seeing myself through his eyes, and the eyes of others close to me. When I am alone, even though I may still feel anger or grief about what I cannot do, I accept and am comfortable with myself.

    I don't know what to do and am worried my marriage is going to completely fall apart, while at the same time a small part of me wonders if that would maybe be a relief, as terrible as that sounds. Not because I don't love my husband any more, but just to take that piece of stress out of the picture. We have had many times when we have lived apart for months at a time due to work. Now that is looking kind of nice. Honestly, I don't know how to fix this.

    Anyone else have thoughts like these?

  2. Kathleen12

    Kathleen12 New Member

    It sounds like you just described my life with this DD. I wish I had advice for you but I don't because my marriage has already fallen apart. I hope you can find an answer before you meet the same end as me.

    I will not post the details, but just know that I know exactly what you're going through there.

    Gentle hugs and prayers to you girl.
  3. sisland

    sisland New Member

    Hi
    I Wish i could help! I've been Divorced for along time for other reasons than this DD,,,but just want you to know that i'm thinking of you and praying for you!

    Relationships can be so very difficult when the other person doesn't or won't try to understand what we are going through!,,,,,,,,,,,,,

    All i know is that life is to short to be Miserable above and beyond this or any other illness,,,,,,Take Care Dear!,,,,,,,,Hugs!,,,,Sis
  4. pasara

    pasara New Member

    thanks everyone for your cyber-hugs. i'm too tired to write more now, but wanted you to know i appreciated your posts. for now, bedtime, it's late. Hugs and kind thoughts to all of you too! it's good to feel you have friends to talk to.
    [This Message was Edited on 02/02/2008]
  5. PVLady

    PVLady New Member

    I am so sorry you are having this problem with your husband in addition to dealing with the post exertional flare. It is so common for us to overdo, and actually it is very sad if you think about it.

    Most of the time we are so restricted and afraid of overdoing so we don't have a chance to do much. Then we have a day we feel good and just want to do something so bad so what do we do? We keep going when we should stop.

    I went through years of dealing with this, and thankfully I don't have it quite as bad anymore. My husband always understands and as it turned out, he had back surgery 2 years ago and now he has to watch himself not to overdo.

    It can happen to anyone. It is cruel what he is doing and horible for you to deal with his attitude on top of being sick. Is he a selfish person?

    I guess whatever is meant to be will happen. Would your husband be willing to have counseling?

    Your story reminds me of Frida Kahlo. In 1925 she suffered a terrible accident and faced a lifelong battle with pain.

    She painted alot of self portraits. Your picture in the bio reminds me of her.

    I hope you are feeling better soon.
    [This Message was Edited on 02/02/2008]
  6. Granniluvsu

    Granniluvsu Well-Known Member


    about your situation and your marriage. Although I do not completely have your situation I do understand how hard it is to get your husband to truly understand how YOU are feeling. Many times you can tell them (him) but it really doesn't sink in. Like if I say my back is kliling me or something he will say mine does too. He really has no clueof how it fels to have pain 24 hrs a day every day. Luckily, I am not housebound and get out to do things which is helpful, even if I really feel like doing nothing. Thanks alot also for these boards !!

    I also do know that I am not completely the same person I used to be very patient and understanding of everyone. I still do try but I know that sometimes I over react due to the pain and bite my husband's head of or something. We have been married 46 years and I have had this FM/CMFP for close to 25 years with little or no help. I know how hard it is to always try and act positive but I really do try and many did not know that I was having any of these problems till I started mentioning it after I was dxed- finally !!!

    God bless you and may things work out for you and your husband. Ir sounds like he especially would benefit from some kind of counciling or therapy but I also know you cannot make them go. My daughter's x was one of those. Sorry I really could not be of more help to you but I do understand how this could happen very easily in a marriage and it is not all your fault !!!

    Hope things work out for you hon. Keep us informed.

    Blessings and hugs,

    Granni
  7. jinlee

    jinlee Member

    Marriage in itself is tough. With these DD's it is even tougher, almost impossible at times it seems.

    I wish I could offer some advice but since I am in the same spot you are, have nothing to offer other than a hug and know that you are not alone.

    It is not your fault about your health and I think men have a harder time dealing with their wive's DD because they are the "man" and are supposed to make everything okay. When they can't, they get angry and frustrated.

    I would like to know how the men on the board feel about this issue and how it changes how they relate to their wives or significant others.

    Hang in there.

    Jinlee.
  8. Janalynn

    Janalynn New Member

    Of course it sounds like it would be a relief. It would eliminate your source of guilt. You feel guilty for affecting his life or all of your lives. That is one thing that I deal with daily. Although my husband does NOTHING to make me feel that way, I think that we as women and/or mothers naturally feel that way when we can't do it all.
    As someone else mentioned - Men like to 'fix' things. When he can't fix this, he has got to be frustrated. Also if he loves you (as I'm sure he does) it is probably extremely hard for him to see you suffering. The only way sometimes for his feelings to come out are in anger or lashing out. Fair - heck no, but when is life fair. He doesn't want you to over do it, because he doesn't want to see the aftermath.
    Yes marriage is for better or worse, in sickness and in health, but I can't help but think that it is darn hard on our spouses. I have a non-complaining very wonderful husband. That's where a lot of my guilt comes in, I think he deserves better sometimes - even though he says he wouldn't ever choose anyone else. We expect 100% support 100% of the time. Their lives have changed as well and it is totally out of their control. PLUS they have to sit back and watch us suffer or be in pain and can do nothing to help. Don't confuse my feeling sorry for the 'good' spouses or partners with the ones who are not so good! I've read about some here who are just downright selfish and mean. If you are in a toxic relationship, I say get out - that's like a poisonous gas that seeps under your skin.
    I think counseling is a great idea. Are there any good books anywhere for spouses living with a partner who is dealing with chronic pain? how about your doctor - would he/she be willing to talk to your husband on your next appt. - I mean just have him come with you to your appt, but ask your doc ahead of time to maybe bring up to your husband how he's dealing with things. Maybe your doctor could bring a third party perspective into the picture.

    I'm not surprised thinking being by yourself doesn't sound great. As I said, it's hard enough taking care of ourselves, but taking care of someone else's mental state (how are you doing with how I'm doing) everyday can be exhausting and a recipe for guilt.
    If you love your husband and want your marriage to work and if he feels the same way, I would suggest doing something. If you do nothing, nothing will change.

    "If nothing changes, nothing changes"