Nodding to everything you said! I'm so grateful to have this forum as well!
About two weeks ago I asked my husband if I could just talk to him? He asked about what? I said about this MS stuff. It's on my mind, in my brains, the whole thing, I need to just talk and talk it all out of my system. He's a record collector, so he was sitting on the floor, sorting through his stash of stuff, and not making eye contact, so I was a bit peeved at that. But I know he was listening, and actively conversting, so I took it for what it was worth.
He feels that I have do MS (I'm presently undx'd) and goes to the appts. with me. But what really startled me was this. One night I was serving dinner, and usually I have to tell the kids to hold their plates up to be served. For a while now I have to put the skillet down and have them extend their plates over to the skillet. So dh reminded them "Hold OUT your plate to your mother. She has Multiple Sclerosis and her hand can't hold things for long, you need to help her out."
I mean, he SAID the words. Again, no official dx yet, but to HEAR that from him. It kind of made me have a funny feeling in my stomach.
Acknowledgment gratefully accepted. Just because he doesn't live/breathe/eat/dream MS like I do (well, not eat, lol, just some humor here!), I know he's here for me. And that's got to be "good enough" better than nothing at all. Men and women relate differently and I have to keep reminding myself of that.
I have the same problem, I want to talk about it too! My husband is great and has supported me all the way. He has had to take over all the driving responsibilities for me and our three boys. This makes me angry! Why angry? Because that is my job I feel. It only reminds me of what I cannot do anymore. I have to be careful not to snap out defensive remarks to my family. I am very sensitive about the whole subject and sometimes take thier offers for help as a direct insult. I know this is not thier fault that I feel this way, and I have to work hard to not take out my anger and frustration out on them. I have so many emotions and at times feel as though my life is over.But it is not. How do I know this? Because who else is going to give my 7 year old his mommy hug. And who else is going to give my 15 year old a womens point of view on his girlfriend. And who else is going to help my 12 year old with algebra homework, since his dad has never had it before? WHO????, ME, THATS WHO! THANK GOD FOR THE LITTLE ONES WHO MAKE US HOLD ON!
And thank God for this forum. It gives us a place to vent, to question, to wonder, and to get concrete facts. I think even the best of families can get MS'd-out. Either by hearing about it constantly, one way or another, or indirectly, by just observing the struggles the sick one is having.
There are mostly women here, and women tend to understand each other's needs almost instinctively. We don't do as well understanding the male viewpoint. Men see a problem and immediately want to do something about it. It's as if it's their job, and they feel they are falling down on the job when they can't solve the MS problem. That may be what db1's husband was feeling and saying. Men tend to be simpler in terms of emotions, and women muddy up the works by reading into what men say the things WE mean. We are kind of convoluted and they are more straightforward. They do try, and they get just as frustrated as we do when they don't understand. It's like a code that we get and they just don't.
So really, we have to cut them a lot of slack. It's what they do, time after time and uncomplainingly, and not what they say one time, that counts over the long haul. We can find other kinds of comfort among women, among other MS sufferers, and especially on this forum.
Just to let all of you know how those of us who love you are also affected.
My 39 year old son has MS. Every time that I visit him and we have a little talk (he opens up to me lots), I listen, try to be honest with my comments, and still encourage him. When I get in the car to drive home, I immediately start to sob.
I cry all the way home because I can't stand to see his suffering; to know that his physical life as he knew it, is changed, maybe forever, and to worry that he will deteriorate quickly and NOT WANT TO TAKE IT ANYMORE! I try to take his pain into my body, but it can't be done.
Nobody can truly feel or understand what you all deal with every minute. But, we are suffering too,as parents, as spouses and maybe older kids. So, yes, MS is a family dx. The dynamics change completely, and the uncertainty of it makes it challenging to say the least.
What keeps me going, and what I relate to him, his wife and you, is that the research is ongoing and HUGE. Someone will find an answer, just like they did with polio, for example. Keep hoping, keep your bodies as strong as possible, nutritionally and physically, and remember.....those who love you NEED you.
Mom, thanks for sharing the other perspective. What you are feeling as the loved one of someone with MS is the very reason I am actually glad it is ME with the disease and not my husband (or anyone else I love). How hard it must be to be in your position. I know if it was my husband who was ill and not me, I'd be lying in bed awake all night afraid to take my eyes off him, and be worried about him constantly. I'm sure I would drive him more nuts than I do now! At least when it is happening to yourself there is some perceived feeling of control vs. happening to someone else, sort of. Being the loved one must be awful and I do not wish to ever face that situation, but of course, who knows what life will throw our way.
Ess, I do think you are on to something. My husband is a problem solver for sure, likes to get to the bottom of things, figure out what's wrong and fix it. We are both analytical but he more so than me. Maybe this is where his gender plays a role. He is a logical thinker and somewhat of a perfectionist; by profession he's an engineer, so he's even trained to think this way and find solutions to problems. I'm sure it is totally frustrating to have this thing in our lives which defies reason and for which there are relatively so few answers. I'm sure that was what was behind his response last night, not to mention probably getting a little tired of the whole subject, just like me.
To all of you: as always, it's so nice when people can relate...
My husband gets fed up (and ever so rightly so) and I don't even have a diagnosis. And he's out of town most of the week, poor (lucky?) guy. What about those without spouses?
I have wondered about what would happen if the shoe were on the other foot...how would he react and deal with things and how would I react and deal with things.
You have a good point though zilla...what about those that have no one to bounce the frustrations off of and lean on when needed...I wonder if those people are comfortable coming here for help from us whom have the support?
Would the ones that are one their own feel that we would be able to provide the support they need or would they think that we haven't a clue?
I'm on my "own" and I think you people are amazing.....These are not just words!! I am a very strong individual, and have been through more than my share of HELL in life, but I mean it when I say that you guys are a GODSEND! I have 2 children, a sister and a pretty sick Mom that I don't want to burden......That's about all the family I have left...
Honestly, I believe that even IF I had 2879940 family members, I would still feel lost without all of you.....Because you KNOW what I'm dealing with--every step of the way...
Thank you for that Tammy...remember though that YOU are part of the group too and your help is as invaluable as anyone elses!
Lots of Hugs,
All I can say to all of the above is "well said, ladies...well said"
After reading all the posts, I now totally understand why I depend so much on the people that are members of this Forum. There is so much compassion and understanding among the members. The support you get here is overwhelming. There are actually people that DO understand EXACTLY what you are going through, at every stage.
I DO think this Forum gives us an outlet to talk about our troubles and I think it DOES spare our loved ones slightly, but voicing our concerns here, rather than bringing them up every moment we breathe, with them. I know that my better half MUST get tired of hearing how much pain I am in everyday. He must...but thankfully he always listens.
Of course, none of our families can understand what it is really like, unless they are experiencing the same thing in their bodies. This Forum gives us an oulet to voice our feelings and for that, I am SO grateful to all of you and for MedHelp giving us a place to come to, to voice those thoughts.
My thanks to all of you. My cyber family and dear friends.
This was a great thread. Thank you "db1" for starting it.
Big Hugs to All,
AMEN!!!! to all that has been said above. This forum serves a wonderful purpose and the people here in our MS community are beautiful people who I and the rest of you could not do without. As for husbands, family friends etc while they also can be wonderfully supportive they rarely want to discuss our symptoms and thoughts on MS too frequently because it overwhelms them and they cannot understand what they are not experiencing.
Sends *hugs* to each of you
Thanks for thinking of those of us that live alone and have no one to talk with at the end of the day, although I will swear my sweet beagle understands every darn word I say! This forum has been a Godsend. Thank each and every one of you kind, caring people.
I agree with everything that all of you have said.............WOW
I am undx, and I don't talk to my family or regular friends about my health problems, Just you, my cyber family. I know my DH worries about me and knows when I'm having a bad day, but I don't talk about it. I never mention how I am feeling to my kids, though they know when they look at me that things aren't good.
I guess I rely on the love and outpouring of support from all of you. I know you all understand the hurts and depression we all suffer, and how this forum family always comes to the rescue.
Thanks for always being here and understanding.
This forum has been such a release for me also, and I feel truly blessed to be part of such a caring group of people.
My husband and I had a similar situation last night. He said that he believes me and doesn't believe that I'm exaggerating, that he realizes something is wrong . . . . but from his perspective, he is frustrated because internally he still feels like he has to fix this and he can't. Men, in general (at least the ones I know), tend to be fixers. Give them a problem, and they try to come up with a solution. Women, on the other hand, realize that sometimes we just need to vent. I don't need him to solve this for me, just to listen . . . . and from his perspective, he has trouble comprehending/internalizing that.
I realized early in this that I have to draw a line to not cause problems. I talk to him about it when he brings up the topic but otherwise I come here or call my mom or sister. I'm so sorry that all of you are having to go through this, but am in turn so thankful that we can turn to eachother. Praise God!
I TOTALLY believe you when you say that your beagle understands every word you say. Animals are so intuitive. People that do not own pets cannot possibly understand what we mean, when we say that they seem to read our thoughts and body language.
I have four minature pups that unfortunately live with my ex for now and they would all gather around my legs to keep them warm, when I was in pain. When I cried, they would all take turns licking my face to wipe away the tears. Lord I miss them.
So I really DO understand what you say about your sweetheart Beagle. Thank God you have that little baby beside you.