Aa
What spouses go through?????
Those here with spouses, significant others, close friends ... we all know they put themselves through the ringer at times wondering and or worrying about us. Not easy knowing that they suffer because of things we can't change but they do. At the same time it really makes you appreciate that they care enough to care after the ringer the medical community puts us through as they go through it as well. Whether they are present or just helping us through the tough times. My wife for example...
I know she worries too much but I have to admit that well... didn't know as much as I thought.
Today I had the rare privilege of supporting her. Strange as it sounds I felt really good know that I was there to support her instead of the per norm. That is until the lady started getting into things and noticed how I was doing. Then it went from her helping my wife to my wife crying and complaining because I have so much trouble getting help. The lady wanted me in the ER .... grrrrrrrrrrrrrrrrrrrrr.......... even when we try to help our spouse how do things get so turned around so easy? My wife's problems I believe are mostly caused by the stress of the last few years of dealing with my problems. The counselor at the hospital sent my wife to SSA to apply for disability. Even so .. sending me to the ER... all I was there for was to support my wife????
A lot of times I don't post here about me. Many times I don't because I feel the pain in others words when their loved ones don't offer the support they want or need. Not the case here, my wife puts herself through so much trying to support me... things like today make me feel so very proud to have the wife I do and at the same time so guilty for not feeling well. Not really sure why I'm posting this one, just a long frustrating day. Frustrating as I guess I knew but didn't want to admit to myself how much CM effects my spouse. Just thought maybe that is something we all should spend a moment or two thinking about. My wife, not that it makes up for anything, but soon as this little phase of symptoms pass she is going to have to have a good night out or something... She has her eye on this new Mexican Resterant maybe that will be it.
Ok, ramble off
CW
I know she worries too much but I have to admit that well... didn't know as much as I thought.
Today I had the rare privilege of supporting her. Strange as it sounds I felt really good know that I was there to support her instead of the per norm. That is until the lady started getting into things and noticed how I was doing. Then it went from her helping my wife to my wife crying and complaining because I have so much trouble getting help. The lady wanted me in the ER .... grrrrrrrrrrrrrrrrrrrrr.......... even when we try to help our spouse how do things get so turned around so easy? My wife's problems I believe are mostly caused by the stress of the last few years of dealing with my problems. The counselor at the hospital sent my wife to SSA to apply for disability. Even so .. sending me to the ER... all I was there for was to support my wife????
A lot of times I don't post here about me. Many times I don't because I feel the pain in others words when their loved ones don't offer the support they want or need. Not the case here, my wife puts herself through so much trying to support me... things like today make me feel so very proud to have the wife I do and at the same time so guilty for not feeling well. Not really sure why I'm posting this one, just a long frustrating day. Frustrating as I guess I knew but didn't want to admit to myself how much CM effects my spouse. Just thought maybe that is something we all should spend a moment or two thinking about. My wife, not that it makes up for anything, but soon as this little phase of symptoms pass she is going to have to have a good night out or something... She has her eye on this new Mexican Resterant maybe that will be it.
Ok, ramble off
CW
Thank you so much for your kind and loving words. I acturally felt all of you in my house for a moment. :) and the hug's were wonderful. It's a good feeling knowing that people we have never met has so much love for each other. I love and appeciate all of these post. It is reasurring, and it remind's me how blessed and loved I really am in my life. All around the world.
Blessing to you all. You fill my heart with such joy
Linda :)
Blessing to you all. You fill my heart with such joy
Linda :)
Your posts brought tears to my eyes...made me think of how difficult this last 19 yrs has been for my husband. He has always been my rock and my refuge...I know he appears to always be strong when with me, but his worry and stress manifest through allergies and "asthma-like" symptoms. When I had my second surgery in 2003, he developed anaphylaxis and I had to bring him to the ER 4 times in 2 days and had to have Epipen on hand, just in case. Now,after my 3rd surgery and sadly, am not recovering as well as I did in my 2 previous ones, he has this "asthma-like" coughs, and our doc has given him a puffer already, but it hasn't helped much. I know he worries about me all the time, even when we were on vacation, he was worrying. I so wanted to try ziplining - but like he said, I can't so we just stayed in the resort and lay on the beach. :( Felt bad for him...we could not do the things we'd like to do anymore. Am just thankful I was able to do some of them in between my first and second and between my second and third surgeries.
Everyday I pray and say my thanks to God for giving me such a wonderful husband...his support and love has helped me so much specially after my last surgery. I have to admit there were times I felt hopeless, and he always brings me back.
After reading all your posts, I realize I am not alone in trying to find ways to "give back" and let them know how we appreciate them and let them have a few breaks in between. They go through so much, and sometimes I think, even if we go through a lot, we have to realize that it is worst for them, because we are the ones who can feel our pain and we just learn to deal with our aches and pains...but they have to watch us and the fact of not knowing how it really feels like makes them imagine it and imaginations are sometimes worse.
So, KUDOS, to our families and friends...for just being there and lending support.
Everyday I pray and say my thanks to God for giving me such a wonderful husband...his support and love has helped me so much specially after my last surgery. I have to admit there were times I felt hopeless, and he always brings me back.
After reading all your posts, I realize I am not alone in trying to find ways to "give back" and let them know how we appreciate them and let them have a few breaks in between. They go through so much, and sometimes I think, even if we go through a lot, we have to realize that it is worst for them, because we are the ones who can feel our pain and we just learn to deal with our aches and pains...but they have to watch us and the fact of not knowing how it really feels like makes them imagine it and imaginations are sometimes worse.
So, KUDOS, to our families and friends...for just being there and lending support.
You made me cry! I feel so much love for you right now. My hubby saw me pass out 2 week ago and he was shaking me, crying my name when I came back to me. Yes our mates go true all kind of fear and feel depresive at time too. My DH have been like a mother hen to me for the last few years, and he is even worst for the last three weeks. And he is so mad about the doctors.
You say the he is your Hero
If you ask him, we would call YOU his Hero.
You are the person that suffers greatly, but no matter what...you have been strong. That is probably one of the things he admires/loves most about you :)
If you ask him, we would call YOU his Hero.
You are the person that suffers greatly, but no matter what...you have been strong. That is probably one of the things he admires/loves most about you :)
You have such a wonderful DH.
I think I will repeat his lines each moring.
We forget that we do in fact give to our family and friends.
It all boils down to guilt I think.
But it is guilt over something we have no control over.
It is so hard to keep that frame of mind sometimes...
I think I will repeat his lines each moring.
We forget that we do in fact give to our family and friends.
It all boils down to guilt I think.
But it is guilt over something we have no control over.
It is so hard to keep that frame of mind sometimes...
just beautiful! *tear*
He is right Emz, we are all there with you! Saying many prayers for you!
Jiggle
He is right Emz, we are all there with you! Saying many prayers for you!
Jiggle
emz
It's been a while since we talked, too long. Sort of good to hear you have surgery scheduled! I say sort of as that also means you are not feeling so hot.Hugs go out to you.
Alone, family & friends don't get it, ex doesn't get it... hate to say it emz but please don't cut any bridges. Remember, YES you must take care of you. i.e. no one should be allowed to throw anything at you! You are worth more than that. But please remember also that it's human nature, because we are all imperfect, when our brain isn't functioning as well as it should our view of reality is warped. We are not capable of always seeing things or especially people as they are.
Long winded but let me share something with you that may help. My wife. I know she Loves me deeply. However, these last little while her actions have not shown that in my eyes. I was wondering why or if I did something but she says no everything is fine. Well I've not been doing so well for a couple months or so. Then two weeks ago the car broke so our son was out helping me fix it. He did it I just directed but then I leaned under the hood to pick up tools so he could try starting the car. As I did so a gust of wind blew the hood down on top of my head hard enough to knock me out. When I came too my wife had ran outside and was trying to life me into a chair. She didn't say a word other than checking how I was. Well little unbeknownst to me that is when the distance came upon her. She first thought I was dead laying in the driveway, then she had been walking around scared that soon I really would be one day and she would be alone. In the mean time she heard of a young chiarian who died from sleep apnea. And she watched me as every since that incident my chocking has gotten really bad. Well, she drew back from me, didn't speak about her fears.... :-\ until the day I started this thread. That whole incident is what started her crying at the hospital. As she told the lady there the whole story was when I first realized what was going on. She's scared. Scared to talk about it as she doesn't want me worrying about but scared that she would lose her husband and would be the one to pick up his dead limp body. :-(
None of us want out mates to worry about such things. But you know what... we can't stop em. That would be like them telling us to not worry about them as they went in for Brain Surgery.
emz- You are worth Loving. Remember, for right now your view of things may not be complete. No fault of your own. CM does that to us at times and we can't help it. But we also can't 'expect' those around us to understand all the time. No, for them to understand would mean they can feel what we feel. Now-NO DOUBT about it no one here would wish that on even their very worst enemy! To them, you look fine. No casts, bandaides or splints. No bloody gauze or even a scabbed up elbow. They simply can't understand what is wrong.
Your friends here... WE get it emz! You PM me anytime, write here anytime you so desire. But DO NOT YOU DARE apologize to me for venting or not feeling your A+ best. What you are and how you feel is good enough for any one of us here. Just be our friend so we can be yours.
Now, close your eyes for a moment... visualize over 1000 of us Chiarians in your room right now all standing in line to hug you. We are there because you are not alone and you do deserve the friendship.
Take Care the 29th will be here soon and you want to be de-stressed and ready for the surgery.
CW
It's been a while since we talked, too long. Sort of good to hear you have surgery scheduled! I say sort of as that also means you are not feeling so hot.Hugs go out to you.
Alone, family & friends don't get it, ex doesn't get it... hate to say it emz but please don't cut any bridges. Remember, YES you must take care of you. i.e. no one should be allowed to throw anything at you! You are worth more than that. But please remember also that it's human nature, because we are all imperfect, when our brain isn't functioning as well as it should our view of reality is warped. We are not capable of always seeing things or especially people as they are.
Long winded but let me share something with you that may help. My wife. I know she Loves me deeply. However, these last little while her actions have not shown that in my eyes. I was wondering why or if I did something but she says no everything is fine. Well I've not been doing so well for a couple months or so. Then two weeks ago the car broke so our son was out helping me fix it. He did it I just directed but then I leaned under the hood to pick up tools so he could try starting the car. As I did so a gust of wind blew the hood down on top of my head hard enough to knock me out. When I came too my wife had ran outside and was trying to life me into a chair. She didn't say a word other than checking how I was. Well little unbeknownst to me that is when the distance came upon her. She first thought I was dead laying in the driveway, then she had been walking around scared that soon I really would be one day and she would be alone. In the mean time she heard of a young chiarian who died from sleep apnea. And she watched me as every since that incident my chocking has gotten really bad. Well, she drew back from me, didn't speak about her fears.... :-\ until the day I started this thread. That whole incident is what started her crying at the hospital. As she told the lady there the whole story was when I first realized what was going on. She's scared. Scared to talk about it as she doesn't want me worrying about but scared that she would lose her husband and would be the one to pick up his dead limp body. :-(
None of us want out mates to worry about such things. But you know what... we can't stop em. That would be like them telling us to not worry about them as they went in for Brain Surgery.
emz- You are worth Loving. Remember, for right now your view of things may not be complete. No fault of your own. CM does that to us at times and we can't help it. But we also can't 'expect' those around us to understand all the time. No, for them to understand would mean they can feel what we feel. Now-NO DOUBT about it no one here would wish that on even their very worst enemy! To them, you look fine. No casts, bandaides or splints. No bloody gauze or even a scabbed up elbow. They simply can't understand what is wrong.
Your friends here... WE get it emz! You PM me anytime, write here anytime you so desire. But DO NOT YOU DARE apologize to me for venting or not feeling your A+ best. What you are and how you feel is good enough for any one of us here. Just be our friend so we can be yours.
Now, close your eyes for a moment... visualize over 1000 of us Chiarians in your room right now all standing in line to hug you. We are there because you are not alone and you do deserve the friendship.
Take Care the 29th will be here soon and you want to be de-stressed and ready for the surgery.
CW
COMMUNITY LEADER
Never feel bad for saying how u feel, there is nothing wrong in it, and no1 here is judging u...we r all in this together....u r not alone.
I know, u feel like that and so many of us do as well. but that feeling is just that a feeling, not a reality....once we figure that out that feeling visits us less often.
Vent and rant as much as u can this is a safe place to do it....
This is also y I post a weekly rant thread usually on a Monday, but u can rant on it neday of the week!!
Hang in there : )
"selma"
I am so glad you came here to talk to us. That bubble you are in is hard to be in when you feel as if your alone, but your not. We are here for you and we will support you and we understand your lonelies. It's a hard place to be. It makes my heart so said to hear you say you didn't want to post on here. This is why we are here. To help each other. If I didn't come here and talk to all of you in my troubled day's. Who know's where I would be today. Every one on here has helped me and has picked me up when I needed strength, and I pray I can do the same for you. The world is a lonely place if you allow it to be. Try looking around and seeing the bigger picture of brighter day's ahead. It will get better honey. Always come on here when your having a bad day. It's good to let it out and as I said we are here to listen and understand. Other's who haven't had to go through this journey as you have had to just don't understand sometimes. Hopefully they will take a good look inside your bubble and see how alone you really are. Reach out to them also and help them to understand what is going on in your heart. No one know's if you don't let them in. Your in my prayer's and I hope for a better day for you.
Good day my Chairian friend
Linda :)
Good day my Chairian friend
Linda :)
i read these comments and tear appeared.. in the sense of feelin sooo alone in my journey! :'-(
yes i hav kids, both are too young to truly understand they are 7(on weds) and 5yrs so they still need my help etc.. ive recently got back with my ex jus over a week ago, but again we are already back to arguin over studip things - which maybe its hes way of expressin hes scared, i dont know! but hes actions and words make me hold back! i ask meself if hes ready , if he can handle this.. and hes actions tell me he cant. that if all hes guna do is argue then id rather not hav it, as it makes me wanna puch him away. i hav a twin sister that jus tries to take control of everythin.. a mother that jus tells lies and makes me out to be even worse..
im not writin on this post for simpathy as ive dealt with it now for 7yrs nearly, but gues its all playin on my mine as im due to hav surgery on the 29th - yet i look at my family and its like im in one bubble and they all are in a seperate one far far away, i tried talkin to them and i get why ya talkin like that for - you'll be fine! yet i hav to think about all the possibilities.. none of them wants to talk about anythin! none of them has actually asked how i am, or how im feelin or anythin! so i then turn to my friends - and they jus joke bout things.. i tried talkin to me so called fella wen we were disgussin things and he said - hes scared of losin me, but hes my rock and there for me .. but how can he be if at the slighest things hes throwin things at me, doesnt talk to me nor ask me how i am - makin me feel like he dont care or anythin!
ooooh and not to mention my kids dads gf already gettin her foot in the door and tellin MY kids shes lookin forward to mommy goin into hospital so she gets to hav them.. yet she cant get her finger out her arse and take them to school.. ggggrrrr..
i dont really post as feel like my thoughts and feelin arent important or dont want people judgin me as ive learnt from experience and was made to feel like ****!! so i guess i get scred at postin things too..
this planet can be such a lonely place. ive always felt lonely but havin cm im feelin meself feelin even more so lonelier if thats possible .
and now i ask meself if i should even post my comment and i only appologies for postin on your post.
emz
yes i hav kids, both are too young to truly understand they are 7(on weds) and 5yrs so they still need my help etc.. ive recently got back with my ex jus over a week ago, but again we are already back to arguin over studip things - which maybe its hes way of expressin hes scared, i dont know! but hes actions and words make me hold back! i ask meself if hes ready , if he can handle this.. and hes actions tell me he cant. that if all hes guna do is argue then id rather not hav it, as it makes me wanna puch him away. i hav a twin sister that jus tries to take control of everythin.. a mother that jus tells lies and makes me out to be even worse..
im not writin on this post for simpathy as ive dealt with it now for 7yrs nearly, but gues its all playin on my mine as im due to hav surgery on the 29th - yet i look at my family and its like im in one bubble and they all are in a seperate one far far away, i tried talkin to them and i get why ya talkin like that for - you'll be fine! yet i hav to think about all the possibilities.. none of them wants to talk about anythin! none of them has actually asked how i am, or how im feelin or anythin! so i then turn to my friends - and they jus joke bout things.. i tried talkin to me so called fella wen we were disgussin things and he said - hes scared of losin me, but hes my rock and there for me .. but how can he be if at the slighest things hes throwin things at me, doesnt talk to me nor ask me how i am - makin me feel like he dont care or anythin!
ooooh and not to mention my kids dads gf already gettin her foot in the door and tellin MY kids shes lookin forward to mommy goin into hospital so she gets to hav them.. yet she cant get her finger out her arse and take them to school.. ggggrrrr..
i dont really post as feel like my thoughts and feelin arent important or dont want people judgin me as ive learnt from experience and was made to feel like ****!! so i guess i get scred at postin things too..
this planet can be such a lonely place. ive always felt lonely but havin cm im feelin meself feelin even more so lonelier if thats possible .
and now i ask meself if i should even post my comment and i only appologies for postin on your post.
emz
COMMUNITY LEADER
Yeah, he is good ...at times, and then there r times...he makes my blood boil....but it is not chiari related....lol...but he has been a trooper on that front.
As for my comments...well, I think we draw from each other....I really do : )
sis
I appreciate that thought sis... though I have to tell you the picture of your husband laying on the floor... yeah that has been on my mind as I've read the posts of the others here. BTW- without you and your comments sis, well I most likely would have given up on getting help before finding my first Chiari Dr.
Linnielou232 - He is dead on. Just hard to recognize it sometimes. But he is right it takes a three strong threads to make a strong cord.
Linnielou232 - He is dead on. Just hard to recognize it sometimes. But he is right it takes a three strong threads to make a strong cord.
COMMUNITY LEADER
<3 u...u always know what to say and when it is needed...u r amazing!
I actually read these post to my DH and he made this comment. God Bless him. We also have to realize that we do a lot for our spouses also. We don't give ourselves enough credit. Having a supportive spouse works both ways he said. He wanted me to tell all of us. That if our spouses didn't have us, and how we have showed them how stronge we are as Chairian they would be weak also. I love and appreciate his statement's so much because we do tend to take away our good qualities that we give to our spouses also. So please pat yourself on your own back and be proud that it is because of you that you have such a loving and suporting loved one on our side. :)
wow u r sooo right...i dont know how my bf is taking all that stuff with me...he accepts almost everything...leaves me alone when i need it...takes me to the doctors!!! it must be so heavy for them to see us suffering every single day...but he his so thankful for each smile...each step i take...he is my hero...and the only one i have here...my family does not live in spain...damn are they tough aswell
:-) Even though it can be a sad reality check... that is realizing how much our families sacrifice... it is also something that should make us really smile deep down inside. I know reading your comments has done that for me. That is made me smile as I think of the kids and how much they also look out for dad even though we can't do the things we used to do, the things we love to do together. My wife as she gives and gives and gives ....
We talked about it and her response: She tells me about all the ways I give and make it all worth while. Yeah right, but the Love to see that I do give in every way that I am capable... that I can never repay.
Then again, I think of some on this very forum who are looking for that. Looking for that person who will support in the ways they need. That is where this list really shines.
Today was unusually difficult for me. I made my wife go, she didn't want to spend the money but no I told her too bad let me worry about that let's go please. Well she went and then it turns into another fiascal about me. Oh she got answers, we know what to do to get her help now. But just made me feel very useless as a husband. Then I come here.... put up a short post and frankly felt a bit selfish about it, felt like 'man what a jerk you go and say lets take care of you honey' and then she ends up taking care of me again. Feeling all alone like no one else could understand I didn't plan it that way, it's not all about me my stupid body just doesn't get that. But.... you all. Sigh, deep breath.... reminded me I'm not alone and you do get it. Thanks.
CW
We talked about it and her response: She tells me about all the ways I give and make it all worth while. Yeah right, but the Love to see that I do give in every way that I am capable... that I can never repay.
Then again, I think of some on this very forum who are looking for that. Looking for that person who will support in the ways they need. That is where this list really shines.
Today was unusually difficult for me. I made my wife go, she didn't want to spend the money but no I told her too bad let me worry about that let's go please. Well she went and then it turns into another fiascal about me. Oh she got answers, we know what to do to get her help now. But just made me feel very useless as a husband. Then I come here.... put up a short post and frankly felt a bit selfish about it, felt like 'man what a jerk you go and say lets take care of you honey' and then she ends up taking care of me again. Feeling all alone like no one else could understand I didn't plan it that way, it's not all about me my stupid body just doesn't get that. But.... you all. Sigh, deep breath.... reminded me I'm not alone and you do get it. Thanks.
CW
also well said jiggle...i also have an amazing husband and best friend and he always knows when I need to rest or am hurting but also when I am too stubborn to rest so I can join my family in something. My kids also help so much and try to understand when my pain lets them down...to all the families that hold us together!
well said CW and Linnielou. Its that unconditional convenant love that seems to come so easily at times. I often wonder at times how it can come so freely, when I feel so selfish with the "me-isms" of this cm. I am reminded through reading this of how much I am loved, how much he sacrafices for me, and how much he is still trying to understand!
Hats of to the wonderful and loving spouses!
Hats of to the wonderful and loving spouses!
My heart feels your pain, but what do we do? I am also very blessed to have a loving and supporting DH. We went out to lunch last week and he took one look at me and asked me if I wanted to leave. He could see the pain in his eye's. He has sacrifices so much, and has let go of things we both enjoyed because he knows I can't enjoy them with him right now. I see the pain and disappointement in his eye's, but it is also covered up with the love that he shows. We might no think that we hold our partner's up, but we do. Just in different way's. Hope you and yur wife are doing better. All we can do is try and hold each other up when issues arise.
COMMUNITY LEADER
Hi CW, Whenever we have a post about how do u get family to understand, I think of what our families do go thru....and we can not make them understand, or be empathetic and comforting like we want and need...they have needs too...and they r dealing with this just as we are...and they may be dealing with it a little differently or slower then we are....
I know how supportive ur immediate family is....and I also know how lucky I am to have my DH that is just as supportive...to a fault sometimes...but, not always the way I would want, and I have to look at the big picture...and know he is doing what he feels is best for me and is dealing with this the best he can.
I think it is what I can not do for my family that hurts me the most....and know how u feel...but,u did ur best u were there for her and she knows that....
Thanks for sharing CW
sis
I know exactly what you mean, just this week I experienced almost the same thing. My poor hubby called in sick to work because he has the flu, or something like it at least, and that day(valentine's day) he wound up sittign with me at the ER due to a terrible HA. I wanted him to be the one gtting better and being treated...and instead of being in the bed taking flu medicine or nyquil or something he was sitting in a rock hard chair waiting for them to make me "better". i felt so terribly selfish though he was the one that insisted on bringing me. It really does effect them alot. All we can do is be thankful that we are some of the lucky few to have supportive spouses, that care enough to be there no matter what, and try to be there for them as much as possible. At least I was able to comfort him and try to take care of him the last 2 days. It feels terrible being helpless watching our loved ones suffer.
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