I know I just wrote a post yesterday, but here I am at 2 a.m. not sleeping when I had a thought. I need some advice from all of you very smart friends out there. I know that my husband adores me and has turned down my offers of letting him out of this difficult situation. He said are you crazy, I love you and am in it for the long haul. He dotes on me and takes such wonderful care of me. The problem is that I can see it wearing on him. I think what I must do is not talk about ms and see if that helps. I wonder if because I am isolated so much I think too much about the monster. Maybe I should try for a week not mentioning any pain or falls and see if it lifts his burden. Any thoughts? Thank you and love to you all. Kelly xx

16 Replies

  • Amore55 abstaining from discussing MS symptoms perhaps for a limited duration (a morning or a day) might be more doable than a week! And it may be a respite for hubby and refocus your mind for a bit.

    I've tried. It helps me. However my symptoms are pretty ok compared with yours and there are times when you do need to tell someone if there's something urgent going on that needs to be addressed.

    MS has a way of not letting us forget it's there. Just when you think things are stable it peeks its head around the corner like a goblin and reminds us "I'm still here"


  • Amore55 , I agree with erash in that abstaining from talking about your MS for a while may help him. If your husband is like most men they think that you want them to fix a problem if you bring it up to them. Sometimes though, we need to talk to someone about our MS and/or symptoms and that is what we are for. If you really need to talk to him about it just let him know that maybe you just need to say it out loud and he is not expected to fix something that cannot be fixed.

    We understand!😘

  • I agree with you about limiting the amount of time, and edpecially if there is something serious.

  • Amore55 hi hun! 💕 I'm so sorry that everything seems to be crashing down on you. Or you falling down on it?😕 Not good! Please be careful!😊

    MSAA has a resource center that might be able to help with some of your and your family needs. check it out.😊

    Sometimes, just not focussing on what you can't do, but on what you CAN do can make all the difference!💕 Just a minute at a time.😊 Those minutes start to add up.😊

    My Your Angels Always Watch Over You And Yours 💕

    J 🌠👻

  • Amore55 Agree with erash that perhaps a day or two is more reasonable than a week. With your pain being such it must be hard not to think or speak of it often and I'm sure he understands. It is so difficult to see those we love in pain and not be able to help...

    Also agree with Morllyn. I sometimes find myself describing an ms symptom to my husband and see that he seems at a loss of what to say, as he can't "fix it"

    Pray that you feel better soon.

  • Amore55, I truly understand where you are coming from. I, too, am very fortunate to have an awesome husband! We have been in this MS game for 30 years and he can tell when something is not quite right so I cannot hide anything from him. I hate to worry him and often feel guilty that he deserves better.

  • Wow! What great feedback! Thank you all so much, it really helped. I never thought about the fact that he would in fact want to “fix” everything. Good ideas for me to chew on,thank you all so much. Love you, Kelly xx

  • Amore55 i think you or we all have reached a catch 22 situation. Damned if you do, damned if you don't. I hope you don't mind but I read your letters out to my hubby, to get his perspective on things. He said that he understood where you were coming from, but like me and many others on here, if you are on your own all day, you need someone to talk to, unload, talking to someone who you know loves you at all costs. How far do you go? For me my hubby works all day, he has 3 jobs so the last thing I want to do is burden him with my problems. I feel as though all I do is complain, I feel guilty for telling him, but like you I try to give him a break, but then my daughter will let it slip that I have fallen or whatever then he gets upset because I haven't told him. The best policy I have found is honesty, in sickness and in health, there are ways to share, especially if you share your problems with love rather than anger. I did try to FaceTime you today, but I am never too sure on your time. Hang in Kelly, there are lots of people praying for you, hugs and blessings Jimeka 🦋 🌈 💐 🤗 🍫

  • Amore55 , you’ve already had great advice here from the real veterans. You’ve given lots of terrific advice and support to everyone here.

    It is a delicate balance to find with sharing how we feel. We need to relate a certain amount, and yet not overwhelm our families, especially spouses. I’ve found that venting here with people who truly understand this crazy disease helps me so much. My poor sweet husband just can’t relate easily, since he has no point of reference. Sometimes, I know I’ve shared more than he can grasp, and it worries or scares him.

    It’s healthy to vent our feelings, but it’s not always easy finding an appropriate place in which to do it. I think you’re wise in taking breaks for a day or so from focusing on the MS, but instead focusing on your husband or others. We are forced to deal with our symptoms on a daily, often constant basis, but I pray we can still see the other good parts of life.

    You obviously love your husband dearly and are concerned for his well-being. With all the intense pain you’ve been suffering, you’re my hero for somehow seeing that he has needs, too.

    You’re in my constant prayers.

  • Awe Amore55, Kelly, it's Fancy1959. The way you have always spoken about your husband doting on you and waiting on you hand and foot to me says he will notice things even if you're not complaining about them. When someone is that intuned with another person you do not have to be speak of your pain and issues to the other person without that person feeling them and seeing it realizing it as if it were their own pain. If it helps your peace of mind give it a go for what erash talked about a limited time and see if it helps. I'm not sure it could be sustained for a longer time. In this too I agree with erash. Do what makes you feel right. You can always try it again for a period of time and lengthen it time if it helps you and helps your husband. Don't let anyone else tell you what's right for you. Do what's right for you and your own heart and mind. Please take care and keep us informed. You're in my thoughts and prayers. Love fancy.

  • I know EXACTLY how you feel

  • I can only speak for myself and my husband, but I would ask him if I talk about it too much or too often. I know that I don't.

    When I do talk about it, I have learned to let mine know if I am concerned, afraid, need help, or just wanting to vent...otherwise he doesn't readily know if he should try to help me or just listen. He has learned to ask me about it because I like to try to ignore it, am stoic, or I forget we are a team and try to suck things up on my own.

    Not talking about it for a week is not really a solution to the problem, if the real problem is that he gets worn down by feeling helpless by the fact that he can't do anything to fix you, and then you feel guilty about that and keep yourself up all night, etc.

  • I hope everything works out. I have no advice because this whole thing is new to me. You will be in my prayers.

  • I have found that talking about my pain or any symptoms I ignore them & actually geel better. I don't lnow if that could work for you but keeping a positive attitude does help and would also release some of the presdure from your wonderful husband. I was also very lucky to have a wonderful hubby, but he passed away 2/25/2016 10 years after his 10 hr. open heart surgery.

  • Amore55 i haven't been dealing with MS near as long as you or most of the people here but a few months ago my wife told me that ms was all I talked about. Being the hardheaded prideful man I am I said ill show her I just won't talk about it. But being I live with it every step I take and every moment I'm to fatigued to do things or a 1000 other things we go thru everyday I couldn't just not talk about it. But I did talk a lot less. Lately I've found her talking about it more than me. She sees Now what I go thru and the pain and frustration that's become my new life and that I can't help talk about it. Now I understand that a lot of the time neither of us understand any of this monster called me. After 47 years whether I say anything or no not she sees when I'm in pain mentally or physically. I'm sure your husband does also.

    God bless you Kelley


  • Amore55 I try to keep real positive and my friends are good to listen to me vent. When my husband notices something and asks I tell him otherwise I complain to my friends and they listen without trying to fix it. That's what my husband tries to do, find a solution when there is none.

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