Aa
Feeling out of sorts...
I have been having a couple of rough days here...having a lot of pain in my legs and the Paratrigeminal Neuralgia is acting up as it always does when I "do too much". I went grocery shopping with Mom and we did the Walmart thing and then did our grocery shopping and I am paying for it for two days now! This is so stupid and I am so sick of it as I know everyone else is...
I went for supper with some friends on Thursday and it was nice but do any of you feel like when you speak to people in your groups of friends that no matter how much you think they understand that it seems like they are not interested in anything you have to say? I am speaking to those of you that are house bound really. I don't have any kids and I don't really have a life other than trying to deal with dr.'s and insurance companies and pain but I try not to talk about it because I know people figure they are tired of hearing about it because they have to hear about it so much...BUT...I DON'T EVEN SEE THEM SO HOW CAN IT BE THAT THEY HEAR ABOUT IT SO MUCH??? I wasn't talking about it at that time either but I guess it doesn't matter what I say anymore, I guess it's just not interesting.
I was on the phone yesterday with hubby and I was telling him about the "conversation" that I had with the MD on the Neurology forum...some of you know about that, others don't...but I was telling hubby how I was a little disillusioned with this MD and all of a sudden hubby says...gotta go, see ya tonight, so I responded with goodbye and he was angry with my trite goodbye!?! I know that he doesn't want to hear anymore about what I am dealing with day to day and it hurts but I figure I just won't talk to him about it. He just called from work today and asked me what I was doing and I responded, "laundry" and he said is that all? I said yes and I made the dog food. Do I have to tell him what shows I listened to on tv or the radio and what bird I saw out the window and how many times the neighbors slammed their car doors!!! That is the only thing else that is going on in my life!!! I am trying to ensure that I have all the information I can garner before I go to the dr. on Wednesday and because my mind isn't working properly, it takes all I have to get it all together!
Right now, this is all I have and I am tired of apologizing for it all!! I sure the he** didn't ask for all this **** but I am not going to apologize for it ONE MORE TIME!!! I am sorry for dumping on here again...seems to be a regular thing lately...but I can't even go out and get in my car and drive in the country and throw rocks to take my frustrations out! I have to wait to have someone take me and I am sick of being treated like a pariah or a child!!!
I think I have forgotten what happy is and I wonder if I will ever feel it again??????? GAWD I HATE THIS ****!!!!!!
I went for supper with some friends on Thursday and it was nice but do any of you feel like when you speak to people in your groups of friends that no matter how much you think they understand that it seems like they are not interested in anything you have to say? I am speaking to those of you that are house bound really. I don't have any kids and I don't really have a life other than trying to deal with dr.'s and insurance companies and pain but I try not to talk about it because I know people figure they are tired of hearing about it because they have to hear about it so much...BUT...I DON'T EVEN SEE THEM SO HOW CAN IT BE THAT THEY HEAR ABOUT IT SO MUCH??? I wasn't talking about it at that time either but I guess it doesn't matter what I say anymore, I guess it's just not interesting.
I was on the phone yesterday with hubby and I was telling him about the "conversation" that I had with the MD on the Neurology forum...some of you know about that, others don't...but I was telling hubby how I was a little disillusioned with this MD and all of a sudden hubby says...gotta go, see ya tonight, so I responded with goodbye and he was angry with my trite goodbye!?! I know that he doesn't want to hear anymore about what I am dealing with day to day and it hurts but I figure I just won't talk to him about it. He just called from work today and asked me what I was doing and I responded, "laundry" and he said is that all? I said yes and I made the dog food. Do I have to tell him what shows I listened to on tv or the radio and what bird I saw out the window and how many times the neighbors slammed their car doors!!! That is the only thing else that is going on in my life!!! I am trying to ensure that I have all the information I can garner before I go to the dr. on Wednesday and because my mind isn't working properly, it takes all I have to get it all together!
Right now, this is all I have and I am tired of apologizing for it all!! I sure the he** didn't ask for all this **** but I am not going to apologize for it ONE MORE TIME!!! I am sorry for dumping on here again...seems to be a regular thing lately...but I can't even go out and get in my car and drive in the country and throw rocks to take my frustrations out! I have to wait to have someone take me and I am sick of being treated like a pariah or a child!!!
I think I have forgotten what happy is and I wonder if I will ever feel it again??????? GAWD I HATE THIS ****!!!!!!
Hi! I am so sorry you have had a rough time lately with pain!! I totally relate to you wanting something else to be preoccupied with other than your health but people that don't feel bad are toatlly incapable to knowing what it is like to feel bad every day just sometimes varying degrees.
My hubbie and I had the exact same conversation last week because I was crying about feeling so bad when my kids needed me. He said "you concentrate on it too much and searching the internet for answers constantly only makes you get worse". Well I am not stupid and I know that has insinuations that this is in my head too. I told him he has no idea what it feels like to be in my shoes and that from now on "do not ask me why I am crying if you truly don't want to hear!"
The only other thing I said was that I can relate. I used to be a hard person, someone who thought that everything was mind over matter. I have been through alot of stuff in my life and I have dealt with what life has given me and moved on. I do not think I can honestly say that if it were him sick and he had seen 3 doctors with no answers that I would not be telling him the same thing. I know that sounds horrible but it is who I was. Now I look at life and people with chronic illness in a totally different light. I can empathize because I have been there. I try to remember that when I deal with him now, he cannot wear my shoes and I would never want him to have to know what this is like.
Don't know if I am rambling but I appreciate you sharing this and I also appreciate your support!
Big Hugs!!
Kristin
My hubbie and I had the exact same conversation last week because I was crying about feeling so bad when my kids needed me. He said "you concentrate on it too much and searching the internet for answers constantly only makes you get worse". Well I am not stupid and I know that has insinuations that this is in my head too. I told him he has no idea what it feels like to be in my shoes and that from now on "do not ask me why I am crying if you truly don't want to hear!"
The only other thing I said was that I can relate. I used to be a hard person, someone who thought that everything was mind over matter. I have been through alot of stuff in my life and I have dealt with what life has given me and moved on. I do not think I can honestly say that if it were him sick and he had seen 3 doctors with no answers that I would not be telling him the same thing. I know that sounds horrible but it is who I was. Now I look at life and people with chronic illness in a totally different light. I can empathize because I have been there. I try to remember that when I deal with him now, he cannot wear my shoes and I would never want him to have to know what this is like.
Don't know if I am rambling but I appreciate you sharing this and I also appreciate your support!
Big Hugs!!
Kristin
Hi Rena,
I just had to chime in. You wrote to me when I was going crazy a few weeks back and it felt like I had just had a nice long talk with my own Mom. I felt the warmth and true caring person that you are. I went back a few months in the postings and read a lot of what you've written and you are THE MOST COMPASSIONATE, FUNNY, THOUGHTFUL, STRONG, SMART, person that I know. Despite what you are going through day after day, you still come on here and do your best to console, give advice and be a cheerleader for those who stop by. You ARE this forum. You and several others on here have really helped me in my time of need.
My husband isn't the type to sit down and hash it all out. I came close to giving him a black eye yesterday for insinuating that it is all in my head. Then I gave him the report that the radiologist sent to my breast surgeon last week that said, "STAT REPORT, READ IMMEDIATELY - SUSPICIOUS FOR MALIGNANCY", etc., etc.. He did a 360 and now can't do enough to help me. I didn't show him the report because I had a feeling he was thinking somewhere along those lines. Sometimes we forget that we've studied our reports, results and doctors information and they haven't. Maybe educate some of your close friends and family on paper about what you are suffering from and maybe they will understand what you have to go through everyday. Just my 2 cents and no, I didn't lay a hand on him. I hope you are feeling better :)
Take care
Cowgirl
I just had to chime in. You wrote to me when I was going crazy a few weeks back and it felt like I had just had a nice long talk with my own Mom. I felt the warmth and true caring person that you are. I went back a few months in the postings and read a lot of what you've written and you are THE MOST COMPASSIONATE, FUNNY, THOUGHTFUL, STRONG, SMART, person that I know. Despite what you are going through day after day, you still come on here and do your best to console, give advice and be a cheerleader for those who stop by. You ARE this forum. You and several others on here have really helped me in my time of need.
My husband isn't the type to sit down and hash it all out. I came close to giving him a black eye yesterday for insinuating that it is all in my head. Then I gave him the report that the radiologist sent to my breast surgeon last week that said, "STAT REPORT, READ IMMEDIATELY - SUSPICIOUS FOR MALIGNANCY", etc., etc.. He did a 360 and now can't do enough to help me. I didn't show him the report because I had a feeling he was thinking somewhere along those lines. Sometimes we forget that we've studied our reports, results and doctors information and they haven't. Maybe educate some of your close friends and family on paper about what you are suffering from and maybe they will understand what you have to go through everyday. Just my 2 cents and no, I didn't lay a hand on him. I hope you are feeling better :)
Take care
Cowgirl
I think this is one of the toughest things to deal with. Even though I am undiagnosed, I can sympathize with you and have felt the same disappointment and disbelief that you feel. I am usually an open friendly person, but I have come to realize that people DON'T want to hear about my health issues. Even when they ask, they only want to hear that I am fine. I think partly, like others have said, they don't know how to deal with it. Other people are just ignorant to the depth of what we all feel about our situations. Needless to say, it has opened my eyes about the people around me.
I just saw my MIL last weekend. The last time we were together (thanksgiving) she cornered me and told me I was making all this up, I should be happy I'm not being fed through a "tube", how BAD her menopause was for her, etc....Later that night, my BIL started in on me too. I was proud that I could be "civil". I just don't get people that like to kick others when they are down?
The problem is that people who aren't going through something like this really can't understand it. I am not excusing it, but it is the reality.
My husband does the "gotta go" thing on the phone a lot. I sometimes do the same thing to him and it is because someone is in our face that we have to deal with-lol! He also changes the subject on me too. He does a good job of listening, but I think it can all be overwhelming to our men that just want to fix it all and make it right (and can't). I guess it becomes stressful to talk to me sometimes!
You know we are always here to listen and we UNDERSTAND where you are coming from. Everybody on here LOVES you & thinks you are wonderful!
Stacey
I just saw my MIL last weekend. The last time we were together (thanksgiving) she cornered me and told me I was making all this up, I should be happy I'm not being fed through a "tube", how BAD her menopause was for her, etc....Later that night, my BIL started in on me too. I was proud that I could be "civil". I just don't get people that like to kick others when they are down?
The problem is that people who aren't going through something like this really can't understand it. I am not excusing it, but it is the reality.
My husband does the "gotta go" thing on the phone a lot. I sometimes do the same thing to him and it is because someone is in our face that we have to deal with-lol! He also changes the subject on me too. He does a good job of listening, but I think it can all be overwhelming to our men that just want to fix it all and make it right (and can't). I guess it becomes stressful to talk to me sometimes!
You know we are always here to listen and we UNDERSTAND where you are coming from. Everybody on here LOVES you & thinks you are wonderful!
Stacey
Please don't feel you need to apologize. The lovely souls on this forum are more than understanding and willing to help pull you through this.
Venting your frustrations helps, so keep venting and sharing.
I'm sorry you are in such pain. I hope someone can offer you some ideas on that subject.
Hugs to you...
Wanna
Venting your frustrations helps, so keep venting and sharing.
I'm sorry you are in such pain. I hope someone can offer you some ideas on that subject.
Hugs to you...
Wanna
I just saw this post. I am SO SORRY you are going through such an ordeal. I am glad that you felt you could come on the Forum and express to us about the things going on in your life.
It always helps to share our thoughts along friends, who understand and can offer you support.
I will be praying for you. Gosh I wish things were going better for you.
Many hugs,
Heather
It always helps to share our thoughts along friends, who understand and can offer you support.
I will be praying for you. Gosh I wish things were going better for you.
Many hugs,
Heather
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However, this is where I am and I didn't make smart decisions and I can't really say that I am anything really...when people ask what I do...I stutter and search for an answer that isn't there. When they ask why I am not working, I stutter and search for an answer I don't want to voice because they don't want to hear it.
____________________________
Let me help you with this question.
1. Consultant: You consult with those in need of medical information and solutions to personal needs arising from drastic changes in their lives
2. Care giver: You help comfort people who are seeking help with their anxieties, pain, confusion, desperations, family issues, ......
I know I could come up with a few more if these do not suffice. But, one thing we here know is that you call yourself our friend.
However, this is where I am and I didn't make smart decisions and I can't really say that I am anything really...when people ask what I do...I stutter and search for an answer that isn't there. When they ask why I am not working, I stutter and search for an answer I don't want to voice because they don't want to hear it.
____________________________
Let me help you with this question.
1. Consultant: You consult with those in need of medical information and solutions to personal needs arising from drastic changes in their lives
2. Care giver: You help comfort people who are seeking help with their anxieties, pain, confusion, desperations, family issues, ......
I know I could come up with a few more if these do not suffice. But, one thing we here know is that you call yourself our friend.
Rena honey,
You're not being whiney. We all have our limits, and yours have been breached!!! Now I wish more than ever that while I was out there, I could have had the time to just sit and have coffee with you. If you're ever up for a chaotic vacation, feel free to hop on a Greyhound and come stay for a while, seriously!
I so wish there was something more I could do, like you I like to help people, and sometimes, just having someone who understands (as much as possible anyway) is enough.
I'm sending you a PM after I finish writing this.
(((hugs))) I'm so sorry it's so rough, and that no one gets it. I'm blessed that my hubby does get it, as he sufferes from the lingering effects of ADEM (had it when he was a child).
Take care honey, I can only imagine how frustrated you must be right now!
Love
Christine
You're not being whiney. We all have our limits, and yours have been breached!!! Now I wish more than ever that while I was out there, I could have had the time to just sit and have coffee with you. If you're ever up for a chaotic vacation, feel free to hop on a Greyhound and come stay for a while, seriously!
I so wish there was something more I could do, like you I like to help people, and sometimes, just having someone who understands (as much as possible anyway) is enough.
I'm sending you a PM after I finish writing this.
(((hugs))) I'm so sorry it's so rough, and that no one gets it. I'm blessed that my hubby does get it, as he sufferes from the lingering effects of ADEM (had it when he was a child).
Take care honey, I can only imagine how frustrated you must be right now!
Love
Christine
I want to thank you all for your support...it means a lot to me considering that I feel like the only support available are you wonderful people that I don't even know!
I feel as though the people I do know should be ashamed of themselves...if they had a crisis in their family, who do you think they would call and spout all their misery to? Me, every darn time...seriously!
Don't get me wrong, I love helping people and I think sometimes that maybe if I had made smarter decisions in life I would be able to help people more! However, this is where I am and I didn't make smart decisions and I can't really say that I am anything really...when people ask what I do...I stutter and search for an answer that isn't there. When they ask why I am not working, I stutter and search for an answer I don't want to voice because they don't want to hear it. I hope the subject gets dropped.
I know that people are tired of hearing my lamentations of being denied treatment for a chronic disease that I have been diagnosed with twice...I am willing to bet that they are not as tired of hearing about it as I am living it...it pisses me off and I am angry and I am absolutely positive that if anyone else were in the same situation they would be livid as well and looking for a way to express their feelings!
And then there is the pain...my friend that is moving to Newfoundland called last night to tell me how tired she is of packing and re-packing and living off of paper plates and how tired she is and how she is so tired. I listened and I said the appropriate things like it won't be long now and you will be home and things will settle down and blah blah blah...but I made the effort while I am sitting on my love seat writhing in pain from cooking supper for my husband. She then asked if she and her granddaughter can sleep here on Tuesday night and can hubby drive her to the airport on Wednesday and can I come to the airport too (at 4:45 a.m.) so that I can push the baby in her stroller?
That means that I have to put fresh sheets on the bed, clean and baby proof the house, arrange to have a meal for supper that night, get up in the early a.m. and go to the airport to push the baby carriage through the airport while walking with a cane...I haven't said yes or no...hubby and I will discuss it this evening when he gets home.
Are people really that oblivious to other people's difficulties or is it a concious decision to not see what is going on around them?
I apologize for the outburst yesterday and Quix...you thought you were being blunt but no, you were being truthful and I needed that to realize that it's not my hubby (I love him forever) and it's not specifically my friends...by the sounds of things, it's an epidemic that people are somehow scared or bored or just don't care to hear how their "friend" is REALLY doing.
I am over the side effects of the Lyrica at 300mg/day and the pain is unbelievable! I don't know what else there is to try...I have done Tegretol, Topamax, Neurontin, Lyrica...is there anything else?
I feel guilty for carrying on like this cause I know there are people out there that are in a lot worse shape that I am but I am so frustrated. I am also frustrated for the people out there like our sweet spastic Ada that has been in pain all weekend and she is still there for the whiney ones like me and just who the heck is helping her? I hope that she gets some relief today...she more than deserves it!
I am SO THANKFUL for all of you here...I don't know that we would all be able to carry on sometimes without everyone here to listen when we need to express our pain and agony. I thank every one of you and I hope that this funk of mine will pass...it's not a good place to be when you go to bed with tears and wake up with tears...
Lots of Hugs,
Rena
I feel as though the people I do know should be ashamed of themselves...if they had a crisis in their family, who do you think they would call and spout all their misery to? Me, every darn time...seriously!
Don't get me wrong, I love helping people and I think sometimes that maybe if I had made smarter decisions in life I would be able to help people more! However, this is where I am and I didn't make smart decisions and I can't really say that I am anything really...when people ask what I do...I stutter and search for an answer that isn't there. When they ask why I am not working, I stutter and search for an answer I don't want to voice because they don't want to hear it. I hope the subject gets dropped.
I know that people are tired of hearing my lamentations of being denied treatment for a chronic disease that I have been diagnosed with twice...I am willing to bet that they are not as tired of hearing about it as I am living it...it pisses me off and I am angry and I am absolutely positive that if anyone else were in the same situation they would be livid as well and looking for a way to express their feelings!
And then there is the pain...my friend that is moving to Newfoundland called last night to tell me how tired she is of packing and re-packing and living off of paper plates and how tired she is and how she is so tired. I listened and I said the appropriate things like it won't be long now and you will be home and things will settle down and blah blah blah...but I made the effort while I am sitting on my love seat writhing in pain from cooking supper for my husband. She then asked if she and her granddaughter can sleep here on Tuesday night and can hubby drive her to the airport on Wednesday and can I come to the airport too (at 4:45 a.m.) so that I can push the baby in her stroller?
That means that I have to put fresh sheets on the bed, clean and baby proof the house, arrange to have a meal for supper that night, get up in the early a.m. and go to the airport to push the baby carriage through the airport while walking with a cane...I haven't said yes or no...hubby and I will discuss it this evening when he gets home.
Are people really that oblivious to other people's difficulties or is it a concious decision to not see what is going on around them?
I apologize for the outburst yesterday and Quix...you thought you were being blunt but no, you were being truthful and I needed that to realize that it's not my hubby (I love him forever) and it's not specifically my friends...by the sounds of things, it's an epidemic that people are somehow scared or bored or just don't care to hear how their "friend" is REALLY doing.
I am over the side effects of the Lyrica at 300mg/day and the pain is unbelievable! I don't know what else there is to try...I have done Tegretol, Topamax, Neurontin, Lyrica...is there anything else?
I feel guilty for carrying on like this cause I know there are people out there that are in a lot worse shape that I am but I am so frustrated. I am also frustrated for the people out there like our sweet spastic Ada that has been in pain all weekend and she is still there for the whiney ones like me and just who the heck is helping her? I hope that she gets some relief today...she more than deserves it!
I am SO THANKFUL for all of you here...I don't know that we would all be able to carry on sometimes without everyone here to listen when we need to express our pain and agony. I thank every one of you and I hope that this funk of mine will pass...it's not a good place to be when you go to bed with tears and wake up with tears...
Lots of Hugs,
Rena
bravo for you...i agree we need more people like you for sure..bless you...take care....deb
I think I need to say more about this. For myself, I am still active at work and can walk around and continue on with a seemingly normal life.
The difficulty arises when they say simply “how are you doing?” I have to think before replying. Sometimes, I just say ok. Usually, only with close friends, I say, "do you really want to know?" And let them decide whether they want to hear what I might have to tell them.
I think this approach seems to work best. I know that even when they say yes. After 30 seconds to a minute they might find a way to change the subject. I figure I have to be forgiving of this as I know I hate to hear myself talk about it all too often.
I used to teach a religious Ed class. I was so surprised that folks thought I might object to a student in a wheelchair, who had trouble talking and holding his head erect, be allowed in my class. Something that further surprised heck out of me was how thankful the mother of this child was. She stated that because I did not try to stop her son’s attendance in my class, she had one less battle to wage. She said that usually it was an issue with other teachers and students/parents in the past. She also explained how rude people could be. Not even willing to even say hello.
My class started without me knowing this individual was to attend my class. I just saw this as just another student coming to class. The mother asked if she should stay. I simply said parents are always welcome to attend with their child, but there was no reason she should. This is how the first class went. Everyone in class thought nothing of it. After class I had the religious ed director coming to me apologizing about not telling me. I asked, “Not telling me what?”
Not sure why I tell the story, except maybe to show how ignorant we let ourselves be.
The difficulty arises when they say simply “how are you doing?” I have to think before replying. Sometimes, I just say ok. Usually, only with close friends, I say, "do you really want to know?" And let them decide whether they want to hear what I might have to tell them.
I think this approach seems to work best. I know that even when they say yes. After 30 seconds to a minute they might find a way to change the subject. I figure I have to be forgiving of this as I know I hate to hear myself talk about it all too often.
I used to teach a religious Ed class. I was so surprised that folks thought I might object to a student in a wheelchair, who had trouble talking and holding his head erect, be allowed in my class. Something that further surprised heck out of me was how thankful the mother of this child was. She stated that because I did not try to stop her son’s attendance in my class, she had one less battle to wage. She said that usually it was an issue with other teachers and students/parents in the past. She also explained how rude people could be. Not even willing to even say hello.
My class started without me knowing this individual was to attend my class. I just saw this as just another student coming to class. The mother asked if she should stay. I simply said parents are always welcome to attend with their child, but there was no reason she should. This is how the first class went. Everyone in class thought nothing of it. After class I had the religious ed director coming to me apologizing about not telling me. I asked, “Not telling me what?”
Not sure why I tell the story, except maybe to show how ignorant we let ourselves be.
Sometimes it is hard to explain it to my wife let a lone friends. My wife, I think, understands a well as anyone not having MS can understand.
One thing I try to keep in mind though, is that everyone experience the human condition. MS is part of the human condition for us.
One thing I try to keep in mind though, is that everyone experience the human condition. MS is part of the human condition for us.
I hope you got my private msg but I thought I would post to see how you are doing today? Happiness is hard for many especially when you add a chronic illness like MS. I'm not saying that it isn't possible but it makes it harder. Rena, Honey you have been hear for me when I've been down and your words of encouragement have always lifted my spirits so lean on me awhile Dear and see if I can return the favor. I will be gone this morning but will be back this afternoon. You are a kind, honest, loving person and I love you for that and I wish people would see you for the amazing person you are and not simply a person with MS.
Love You Girl,
Ada
Love You Girl,
Ada
People truly do not understand, even good, well-meaning people. I have a dear friend whom I've known almost all my life. She lives far away, so things usually are on an email or phone basis, but we're in touch a lot and she knows what's happening to me and what has happened over the years.
She thought the doctor must be wrong about my MS and that I was maybe just tired. When I told her I get a stinging reaction from Copaxone, she wondered if I would then stop taking it. When I mentioned I've been having increased pain and burning in one leg, she suggested I'd injured it exercising. And on and on. This is a dear, loving friend.
When I was first in limbo some years ago, for a long time I had extreme symptoms and was really sick. I was terribly hurt by the reactions of some of my closest family, who trivialized things hugely and accused me of malingering and hypochondria, to use the nicer terms for what they said. I will never forget this, ever, but I have gotten past it. I've also learned some lessons about who to talk to and what to say.
Some people just don't get it, others don't want to. And some just don't know how to deal with things, so they don't. Not a good way to be, but it's the reality. I think that small lapses are very understandable, given human nature, and we have to look at the big picture over time. For myself, I find that not talking much about MS works best, and when I do complain, I make it brief. There is always this forum full of friends who do understand, thank heavens.
ess
She thought the doctor must be wrong about my MS and that I was maybe just tired. When I told her I get a stinging reaction from Copaxone, she wondered if I would then stop taking it. When I mentioned I've been having increased pain and burning in one leg, she suggested I'd injured it exercising. And on and on. This is a dear, loving friend.
When I was first in limbo some years ago, for a long time I had extreme symptoms and was really sick. I was terribly hurt by the reactions of some of my closest family, who trivialized things hugely and accused me of malingering and hypochondria, to use the nicer terms for what they said. I will never forget this, ever, but I have gotten past it. I've also learned some lessons about who to talk to and what to say.
Some people just don't get it, others don't want to. And some just don't know how to deal with things, so they don't. Not a good way to be, but it's the reality. I think that small lapses are very understandable, given human nature, and we have to look at the big picture over time. For myself, I find that not talking much about MS works best, and when I do complain, I make it brief. There is always this forum full of friends who do understand, thank heavens.
ess
Oh Rena,
Im so sorry that it's been so rough. I do know what you mean about friends not understanding though. Even though (maybe particularly because? I don't know) I'm not diagnosed, I find that "tuned out" thing to be INCREDIBLY frustrating. Ok, every ounce of what I'm about to say is true, not a single word of exaggeration!! I have a friend "back home" on the west coast, who, if she says "how's it going?" and I say "oh, it's ok, but my arm's been prickling all day, and it's making me frustrated" she'll say "oh, I get that too". Now, that's not the stupid part. This girl, I swear on my life, will call me twice in a day, talking to me for 1.5 hours each time, about the neighbour's seperation. Like that's all she calls to talk about. I sit there and think to myself "wtf?". I lived below her for 1.5 years, and when this all started, she told me repeatedly I needed to see a chiropractor :S
I guess I can't understand how some people can be so indifferent to the plight and pain of others. Maybe that's MY downfall, not theirs, I don't know, but it's just so darn frusterating.
I am so sorry you too are experiencing this. I'm also so so sorry that you are feeling so poorly. I wish you were closer, I'd bring ya some food, so you don't have to cook, and invite you over for coffee so you can "get away" (she says, laughing hysterically because you'd just get INTO the chaos of my kids) from home.
Seriously though, if you need to write and vent, you go nuts. You know you can PM me anytime about anything, right?
I'm looking forward, in the least, to hearing about how you kicked butt on your neuro, even if you DO have inactive MS.
Man, I'm glad people can't hear what I'm thinking....it would just show up as a bunch of astriks!!
Love
Chris
Im so sorry that it's been so rough. I do know what you mean about friends not understanding though. Even though (maybe particularly because? I don't know) I'm not diagnosed, I find that "tuned out" thing to be INCREDIBLY frustrating. Ok, every ounce of what I'm about to say is true, not a single word of exaggeration!! I have a friend "back home" on the west coast, who, if she says "how's it going?" and I say "oh, it's ok, but my arm's been prickling all day, and it's making me frustrated" she'll say "oh, I get that too". Now, that's not the stupid part. This girl, I swear on my life, will call me twice in a day, talking to me for 1.5 hours each time, about the neighbour's seperation. Like that's all she calls to talk about. I sit there and think to myself "wtf?". I lived below her for 1.5 years, and when this all started, she told me repeatedly I needed to see a chiropractor :S
I guess I can't understand how some people can be so indifferent to the plight and pain of others. Maybe that's MY downfall, not theirs, I don't know, but it's just so darn frusterating.
I am so sorry you too are experiencing this. I'm also so so sorry that you are feeling so poorly. I wish you were closer, I'd bring ya some food, so you don't have to cook, and invite you over for coffee so you can "get away" (she says, laughing hysterically because you'd just get INTO the chaos of my kids) from home.
Seriously though, if you need to write and vent, you go nuts. You know you can PM me anytime about anything, right?
I'm looking forward, in the least, to hearing about how you kicked butt on your neuro, even if you DO have inactive MS.
Man, I'm glad people can't hear what I'm thinking....it would just show up as a bunch of astriks!!
Love
Chris
Oh, Rena, sorry things seems so bleak and that there is no one there for you. When you were telling me the story about your hubby signing off so suddenly, I just pictured him suddenly really, honestly needing to get off the phone - like his attention was truly needed by something or someone. It happens. Then, he heard your "good-bye" and was taken aback. Then, it sounded like the incident mushroomed into him trying to show more interest (asking what you were doing) and you feeling resentful.
I have been in this exact situation (though I may be misinterpreting). It happened with a family member before my diagnosis and I had it out with her. I was so hurt. It happened over a year ago and she immediately began trying to reverse the trend our realtionship had taken. She would specifically ask how I was and listen and commiserate. But, I thought she was being phoney and it just irked me. But, when I look back, I realize that she couldn't do anything else but try to listen and be more "there" for me. It was awkward and stilted for a long time, but she has persevered and I finally realized that she was really trying to set things right, but I wasn't giving her the room. It
That probably didn't make any sense, but I'm trying to say that it is just an awkward dance when we feel like we don't have anything interesting to offer and then we react, and they react, and we react and it all gets weird..
The answer is not to shut down and not talk any longer. He still needs to hear from you and about you. Maybe it "is" to hear about the hour spent watching TV and the plans for dinner, a word about excitement for the summer and getting out in the trailer AND how you felt. You can only share what it is that you are experiencing. Intersperse random things (however uninteresting) with the stuff you think he's tired of. I'll bet he's not tired of it at all, but frustrated at how little he can help.
Really, I have rarely been this unable to say what I mean. I so feel for your frustration and I want to reassure you that I'll bet he really does care how things are with you. When we feel so crummy, it seems we are hypersensitive to things that seem to indicate others are tired of us.
Things will get better. And good luck with the preparations for the doctor.
Do you have a plan for how you are going to approach things with your doctor? Is this your GP or is it the Neuro?
Quix
I have been in this exact situation (though I may be misinterpreting). It happened with a family member before my diagnosis and I had it out with her. I was so hurt. It happened over a year ago and she immediately began trying to reverse the trend our realtionship had taken. She would specifically ask how I was and listen and commiserate. But, I thought she was being phoney and it just irked me. But, when I look back, I realize that she couldn't do anything else but try to listen and be more "there" for me. It was awkward and stilted for a long time, but she has persevered and I finally realized that she was really trying to set things right, but I wasn't giving her the room. It
That probably didn't make any sense, but I'm trying to say that it is just an awkward dance when we feel like we don't have anything interesting to offer and then we react, and they react, and we react and it all gets weird..
The answer is not to shut down and not talk any longer. He still needs to hear from you and about you. Maybe it "is" to hear about the hour spent watching TV and the plans for dinner, a word about excitement for the summer and getting out in the trailer AND how you felt. You can only share what it is that you are experiencing. Intersperse random things (however uninteresting) with the stuff you think he's tired of. I'll bet he's not tired of it at all, but frustrated at how little he can help.
Really, I have rarely been this unable to say what I mean. I so feel for your frustration and I want to reassure you that I'll bet he really does care how things are with you. When we feel so crummy, it seems we are hypersensitive to things that seem to indicate others are tired of us.
Things will get better. And good luck with the preparations for the doctor.
Do you have a plan for how you are going to approach things with your doctor? Is this your GP or is it the Neuro?
Quix
i am sooo sorry for what your going thru...and you can vent away all you want...thats what were here for to be here for each other...i think as far as husbands go i kind of give my hubby a kick in the butt so to speak...
i told him one day that if i get so i cant do for myself that i wanted put in nursing home ...he said "why"?
i said because you have no patience with me.....WOW!!!!!talk about a different acting hubby...lolol hope you all had a great easter.....take care ...it will all work out in the end....deb
i told him one day that if i get so i cant do for myself that i wanted put in nursing home ...he said "why"?
i said because you have no patience with me.....WOW!!!!!talk about a different acting hubby...lolol hope you all had a great easter.....take care ...it will all work out in the end....deb
I am so very sorry you are going through this. Our DH's are supposed to be our last line of defense in all this mess. I feel betrayed on your behalf! Every now and then I get a reply from mine that seems as though he doesn't care - maybe he's as sick of hearing about it as I am. I let him know how that makes me feel. I did not choose this. While he may be tired of HEARING about it, he can try LIVING it for a day. Then I feel badly coz he says he's just mad at himself coz he can't help me.
Maybe that's what yours is feeling too??? Either way, an occasional slap will snap him out of it, lol!
Hugs
Penn
Maybe that's what yours is feeling too??? Either way, an occasional slap will snap him out of it, lol!
Hugs
Penn
The story about my husband was not to make him sound bad...it's just his way of dealing with this stuff. He wants to leave it up to me to be informed. He'll provide the heatlth care insurance! (LOL) Marriages can be difficult enough under the best of circumstances.
Rena, I hope you are doing a little better.
Do you have all of your previous test results to take with you on Wednesday?
Wanna
Rena, I hope you are doing a little better.
Do you have all of your previous test results to take with you on Wednesday?
Wanna
I'm sorry to sound so blunt, but that's ME, so......
After reading both of your posts, I want to track down BOTH of your hubby's and slap them both in the head!!!
NO WONDER I'M SINGLE!
I'm sorry, but honestly.....this made me cry for both of you! If you can handle that, then so be it, but....that's heartbreaking!
RENA: I'm grabbing a plane to come and see you to give you a great big HUG!!!
(and to slap your hubby!) :)
After reading both of your posts, I want to track down BOTH of your hubby's and slap them both in the head!!!
NO WONDER I'M SINGLE!
I'm sorry, but honestly.....this made me cry for both of you! If you can handle that, then so be it, but....that's heartbreaking!
RENA: I'm grabbing a plane to come and see you to give you a great big HUG!!!
(and to slap your hubby!) :)
You should not have to apologize for what is happening. Everyone here understands what your life is like and it is good that you can vent those frustrations here.
I don’t understand when a husband seems to “ignore” what is happening. That is difficult, but it might be his way of dealing with his own fears(?)
Just last week I attempted to read something to my husband. He stopped me in the middle of the article and said to me, “All I hear is blah, blah, blah.” It’s not that he doesn’t understand that something is wrong with me, he just wants it fixed. Understanding all of it isn’t in his agenda. His comment did make me laugh…it was better to laugh than for me to get angry.
Don’t give up on happiness. It’s still there!
Wanna
I don’t understand when a husband seems to “ignore” what is happening. That is difficult, but it might be his way of dealing with his own fears(?)
Just last week I attempted to read something to my husband. He stopped me in the middle of the article and said to me, “All I hear is blah, blah, blah.” It’s not that he doesn’t understand that something is wrong with me, he just wants it fixed. Understanding all of it isn’t in his agenda. His comment did make me laugh…it was better to laugh than for me to get angry.
Don’t give up on happiness. It’s still there!
Wanna
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