What is on your mind? What topics would you most like to discuss? Here are a few of the things I think about:
MS medications- so many options which one should we choose.
Emotional Roller Coaster- his emotions are all over the map on any given day.
Grieving for lost future when he's still here.
I feel so different about the man I love, what do I do with that?
Great days and what to focus on.
Keeping him less stressed is stressful on me.
I'd love to hear from other wives of husband's who have MS. Not that being a husband of a wife with MS is not important, it's just different. There are more women with MS with support directed that way, and so far I have found very little in the way of supporting the wives with MS husbands.
This is a public blog so everyone is welcome to participate. Please be kind or your comments will be removed.
So far today is a good day for my husband. Not as much numbness in toes, ankles, and knees. I hope the day finishes that way. Trying to keep the stress level low so his face doesn't go numb.
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I agree with the bit about grieving. I have just started training to be a CRUSE advisor and can compare a lot of what people feel after a bereavement with what I feel with a partner with MS.
ReplyDeleteSo I'm not going crazy, this is a typical response. Anything in your training that would help with dealing with an MS Husband?
ReplyDeleteFor us as a couple MS presents a daily battle. The important thing, we have found is to focus on what we both can do. It is often in the simple things that you find most value. Yes, we have been forced to give up a lot, but the focus has to be on what you can do, rather than what you can't.
ReplyDeleteMS has changed our roles too - I had to find out how the lawn mower worked for a start!
I think that support for wives with husbands with MS is a much needed service. My husband was diagnosed in 2002 - he's never been told with what type but the decline has been pretty much steady so I guess its progressive. He now walks with a frame inside (on good days!) and uses a wheelchair outside. I am his main carer and trying to maintain a full-time job thanks to very supportive employers and 1 hour a day support from social services.
ReplyDeleteJust now I feel it is just all about to fall apart and I want to scream and cry buckets and have a hug from someone who understands and will DO something to help!!
Things can quickly become overwhelming. I think as soon as we can we should line up our support. Emotional, talking with others who understand what you mean and don't judge because they have similar experiences. In care help for when you can't physically handle it yourself. Other services or chores you do that can be done by others and free up time for you to take care of yourself or spend quality time with you OH. I find that it's hard for a woman to ask for help and that is why I started this blog and support group. We need each other. We can learn from each other and support each other along the way. I'm so glad you all have found this. Invite other wives to join us.
ReplyDeleteThank you for the reminder that on a daily basis and even an hourly basis, to focus on the positive. What can we do now and do it. Enjoy it while you can experience whatever it is. Live in the now. For me that means getting out of my head and stop with the what ifs.
ReplyDeletethanks a lot for the blog.
ReplyDeleteI think it is very important to offer help to the wives.
I got married a year ago , my husbnad was diagnosed back in 2006 .i thought things will be easy and managable but reality is different.
sometimes i feel like busrt crying because am tooooo tired.
we dont live in our country of origine, so we don't have family members around us to give us support when we need it .
I live in a constant worry as my husband never accpets to take medication nad he belives that good diet with food supplementa will do the job..this leave me in pain and unsecurity , i even started to think that i dont have kids out of being scared..
am glad you are here, so i can talk to you .
I don't know if this blog is still running it is 2012, I'm sitting here in a state of confusion, my husband has had MS for the last 20 years we've been together ten ..over the last year or so he has had so many cognitive changes he isn't the man I know, I try so hard to make his life pleasant, stressfree and happy and every turn is so different I don't know whether I'm Arthur or Martha. I can't tell him how much he forgets or makes mistakes or just plain imagines stuff it would hurt him terribly., but I am going insane trying to correct his way out stories with family and friends...for example having a politician over for coffee...wtf..I died of embarrasment when he came out with that one. I have no one to talk to not friends or family, I feel very alone. There is so much to do around the house to make it work for his declining health like a second shower that is accessable for him, I'm not a builder but am building one as best I can in our laundry.I won't go on but at least I've been able to write a bit..I crave sane company but we are in a very small isolated town that is very clicky.
ReplyDeleteI don't know if you're still doing this blog. My husband was diagnosed two years ago. He is 39. He is not doing so well with it, and it's exhausting for me to write about it, even. He takes the Avonex each week, and I know this medicine is a great blessing, and I'm grateful. It's just that he's so shut-down and sad all the time. He is depressed, I'm pretty sure. I am stressed out. We home school, and I'm so ready to cut that out and send them to school. He continues on with his job, only because he basically works at home and gets paid for not doing a whole lot. I don't know what in the world we would do if he lost this job and the insurance that went with it. That's how he gets his medicine. So stressed out, so unhappy, so uncertain for the future. I am not in love with him anymore, and with his constant mopey-ness I can't stand to be around him. I resent him for his disease; isn't that terrible? He yells at the children, and that makes me so stressed out that I get angry and lose my temper and yell at them, too. It would be better for them to go to regular school. I just don't know what to do. There is little money for anything extra, and that depresses him, too. I am so sorry that I married him, but I look at my children, and I can't imagine life without them, so that is what I live for.
ReplyDeleteIf you are reading this, take care, and thank you for giving us out here somewhere to talk and vent and not be judged. Thank you.
it seems like this blog may not be current but maybe th wpeople who have written in recently can be in touch? it seems so important to have support wherever you can find it! my husband was diagnosed 11 years ago right before we got married. we are young and have young kids so besides the constant struggles of ms, we also struggle because we are so different from *every* family around us. my husband uses a scooter outside and a walker inside. he says he feels like he is 80 and i believe him. it's sad to watch because he is in his 40's and i am in my 30's. it feels a little like we are in our golden years. he's getting ready to "retire" and i feel like i have not even lived my life yet. how does anyone deal with this? so much support needed over here from people who really understand!!!
ReplyDeleteI just found this blog. If you still check this blog I'd love to connect! My husband has ms, we've known since August 2006. We now have three kids and one on the way, we're young, this illness is no fun at times, but God has blessed us so much along the way! If you want to connect my email is shelby4303@gmail.com
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ReplyDeletemore.